September 17, 2006
The time has come to close the chapter on this particular journal. I have decided (with the help of my friends J & J) to start a new blog which will combine all of my thoughts and entries for both of my children. They will both still have separate sites, but my entries for them will be one in the same. If you want to check it out, go to: http://marshallmurphy.blogspot.com/

I expect that Jay will hook us up with a link from the main page soon.

The contents of this journal will not be deleted or lost, simply archived so that if you wish to view them in the future, you may be able to do just that.

The new blog is great - you can post pictures (daily if we want to!) and we can use our beloved apostrophes with no issues! You can even comment on our posts and pictures if you wish. Let us know what you think - head over and take it for a little ride!

August 29, 2006
The 5th annual walk and roll is being held on 9/24 in Woburn, MA. Registration starts at 9am. Email me if you would like a peek at the pledge sheets or directions to the event!

Thanks!

August 17, 2006
Thank you to everyone who acknowledged yesterday. I got a lot of sweet emails and notes from a few of my closest and caring friends, and a few relatives as well.

One friend in particular . . . she does the same thing every birthday. Mark got home and saw what she did and said "Wow. She never forgets. She is such a good friend". I know it meant a lot to him as well. So thank you, special friend. A little memory goes a long way. We love you and appreciate that simple act so very much.

August 17, 2006
A special welcome to James Joseph M. III, son of my dear friend Megan. James was born on Marshalls birthday, just yesterday!

August 15, 2006
~~~4 years ago~~~9:08pm

I am feeling rather emotional. This is likely to become long. I am crying before I even write anything!

I have no idea why my emotions are such a mess lately. It could be the fact that my child was supposed to turn 4 years old tomorrow. It could be the fact that he barely turned 4 months - nevermind 4 years, before we were forced to say a final goodbye and put him into the ground.

It could be the recent wave of little boys (those born and those expected to be born) all around us. It is so hard not to be jealous. I want my sons more than anything in the world right now. And I am painfully aware that it just is not possible.

So where was I?

4 years ago, almost at this very second, my water broke. At that second I began a journey of labor without even having a real sense of what the word truly meant. I am not talking about contractions and the other aches and pains that come along with birthing a child. Moreover I am referring to the aches and pains that continue to dwell deep within my heart and mind.

Labor. It prevents me from sleeping well, thinking rationally, relaxing, and being happy. Labor is what I endure day in and day out, forced to live on this earth with the biggest piece of me that will always be missing. Labor is what plagues my mind, wondering if I made the right decisions, regretting having done some things, regretting not doing others. Labor is what crushes my heart every night when I lie down and think of nothing but my children; my heart cries out for them. Labor is what causes me to wonder how I might make it through another day without my sons. Labor is worrying that some of the best friends I have, may also learn what it is like to experience this. It is the constant worry of losing another one of "my SMA children". It is also the constant worry of losing Murphy. Labor is also worrying about my daughter not knowing her brothers and fearful of what it may be like for her to be an only child. Labor is exhausting. It is an endless worry that I can never shake. It will be with me until my heart is no longer beating. What I wouldnt give for an epidural for this type of labor - right now and for the rest of my life.

I miss you terribly Marshall. Every single minute of every day I wonder what life would have been like if only you could have been here still today. It busts me all up when your sister asks for you, points to your pictures, sits on your bench, tries to spell your name, tells me that you are in her heart, sleeps with your blanket and pillow and when I ask her "whose blanket?" She responds "MY Arshall!" Yes, yes. He is YOUR Arshall, Murphy. And all of ours too.

I would go through a lifetime of childbirth labor if only I could escape the hellish labor I currently live with day in and day out. I would have given my life for yours Marshall. I miss you, Pal. Happy Birthday, Big Bruddah.

August 12, 2006
Listen up folks! This is tonight!

Please join us at 8:00 p.m. on August 12, 2006, for the Third Annual Nationwide SMA Candle Lighting Event. August is SMA Awareness month, and as such, we choose to use the 2nd Saturday in August every year as a time to reflect on those lost, as well as to honor those living daily with SMA. As this event continues to grow, we hope to bring awareness to the public about the disorder as well as unity to the families living with it, as we all join to spread the light of our candles around the world. We hope you will join us. Wherever you are, please light your candle tonight for Marshall and all of the SMA angels.

Spread the light-and the word.

August 4, 2006
I had the most horrible dream last night. I woke up at 3am with my heart pounding and I was sweating so bad. In my dream, Murphy was a baby again but she was dying. I kept screaming at her "GO to your big brother!" because she was doing that suffering for days on end thing that Marshall did when he was dying. I just wanted her to be at peace. UGH. It was horrible. I was sick to my stomach when I woke up. I ran to her room at that hour to check on her. My heart hurt so bad as I walked to her room, unsure of what I might find. To my relief, she was just fine.

Is there a day that I might just be normal again? I wonder if these dreams will ever stop, if I can ever relax about my fear of Murphy dying like her brothers did.

Will I ever be able to relate to "normal" people again? Will social situations ever stop freaking me out? Will I have to remember to plaster on the fake face so many times in the future, as I do now? Will little babies always choke me up? Will I always have to deal with the HUGE fear being around them?

Things change. Some things. Sometimes. And some things never do. Ever. After 4 years, I often wonder if I have made it as far as I am going to come? Or is there still time for this to get better?

I so much want to be normal again. I feel so far from it.

And today at the gas station, Ill be damned if that same foreign attendant did not ask me if Murphy was my only child. I smiled. And I did what I always do when he asks me that. I boldly denied the existence of my sons. I answered "yes."

And like always, he proceeded to tell me that I should have one more and then stop. He has 4. And four is too many. They cost too much money. There comes a point in his story when I can no longer listen. I dont even have to put my fingers in my ears and yell "LALALALALALALA". I have this neat ability to just block it out. I sit there an nod. And I dont listen to another word.

I have no desire to hear the story for the fourteenth time. I have no desire to sit and try to get beyond the language barrier and tell this guy that if all went my way right now I would have at LEAST four kids. I have no desire to tell him that the majority of my kids are dead and I am damn lucky to even have the one that I do have. He doesnt need to know.

He is blissfully clueless. He is missing teeth. The ones he does have are brown and crooked. His clothes are ripped and stained. His shoes are identical to a pair I wore in the 7th grade, almost 20 years ago. He smells. Badly. And yet I find myself jealous of him. Unlike myself, anything that is wrong with him, although visible from the outside, is able to be fixed. His children are all alive and well. He is blissfully unaware of how things could have turned out for him. Lucky guy, that dirty old toothless gas attendant. He is a lucky guy for sure.

August 1, 2006
Just a reminder:

August is SMA Awareness month. Please tell someone new about Marshall if the opportunity arises. Awareness will bring us a cure some day. Tell, tell, tell!

July 17, 2006
Tomorrow is Charlie Cowans birthday. Charlie would have been a big boy of FIVE years old if SMA had not stolen him back in 2002. I know his family misses him very much.

July 12, 2006
I miss my boys tonight. My heart hurts every day but there are days that it really, really hurts. I hurt a lot for myself and for Mark but I hurt for Murphy too. I am so upset that she is all alone. It was never supposed to be this way. I never wanted her to be alone and I hope she will never resent us for that fact. We tried so hard for you, Murphy.

Tomorrow we get to go to our annual TCF balloon launch for the kids. Murphy loved this last year and I bet she will like it again. There is something liberating and beautiful about balloons flying through the air (if you can get past the pollution bit - it always pains me a little to let mine go for that reason) but then I remind myself how angry and cheated I am that my boys are dead and I let those suckers go with gusto! Have at it, Environment! I figure for the amount of disposeable diapers that did NOT go into a landfill due to my children wearing cloth diapers for most of their lives, I can let 2 balloons go annually and be guilt free about it. And I will, and I am! So there!

June 26, 2006
So when you are sitting inside a car strapping your child in (mind you, it is not your car since your car broke down on Friday and is still at the dealer getting diagnosed, so it is a borrowed car from a friend) and a dragonfly lands on your leg (inside the car) and held tightly in its arms/legs is a little baby bug, what are you supposed to think? Draw your own conclusions. I know what I think!

On another note, getting back to my run-on sentence, this is the story about my car! My car is broken. It broke down near Hayward Landing today in the middle of the road. I barely managed to pull to the side. I had to get towed. Mom had to come pick Murphy up. Strange men in trucks were stopping to offer me help and rides. It was the middle of a thunderstorm. I forgot my cell phone. I had to walk with Murphy to a strangers house to call AAA. What a crappy day! And today they have finally decided to look at it. Who knows when I will get it back!

Thanks to a good friend, I DO have wheels for now!

June 21, 2006
Yesterday I attended the calling hours for a beautiful little baby girl named River, who passed away from SMA I. It tore me up to be there anyway. My heart hurts so bad for her mom and dad.

But on the cards was a poem that really tears me up, especially just knowing how it relates to our own little River. I wanted to share that here.

~The Rivers Journey~
W.C. Norcross, Sr.

It was once said by the Indians that the river was mighty and strong, and held many good spirits. After all, it was nurtured by the mother mountains and the father sky who kept it healthy and strong.

And as it ran through the mother mountain side, forever will its path remain, even if the river runs no more, for we will all know that she was here.

And as the father sky gave the river his mighty rays to show her beauty and strength, she would show the world that she could shine, on even the gloomiest of days.

As the river flows to the end of her journey, we all know that she flows into the beautiful blue eyes of the ocean, for which she can be seen and enjoyed in all of her glory, forever.

But fear not, for at the end of the beautiful rainbow, the river flows forever free. And it is there that we shall meet again.
~~



Godspeed, River. Forever you WILL run.

June 18, 2006
UGH. Too much going on right now Marshall! Make it all stop.

Yesterday was the 1st birthday of our special connection, Aiden Tomkins Odell. Unfortunately he was not here to celebrate it with his parents, another victim of SMA.

On Tuesday I was supposed to go with Aidens mommy to visit a new family, with a beautiful 3 month old little girl with Type I. I will still go visit this family. But unfortunately it will have to be to pay my respects to them. River passed away today.

Please make it all go away. Make it stop. It will never be enough that we had to lose YOU, Marshall. It is never enough. More and more babies continue to lose their battles.

WHERE IS OUR CURE!? They say it is coming. WHEN? Not fast enough.

Godspeed, River.

June 17, 2006
Lots of thoughts and prayers for our little Jenny Jenster

June 16, 2006
My grandmother (Marshall and Murphys great grandmother) has been admitted to the hospital, likely with a TIA. Probability for having a much bigger stroke within 24-48 hours is high so they are keeping her for observation. The doctor said something is definitely not right. We hope she feels better soon!

June 12, 2006
If anyone has a chance - please watch channel 4 (Boston) today at 4pm. They are covering the "mini-Extreme" Home Makeover story on the Evans Family (Cassandra age 2, type 1) from the Cape.

They have many volunteers that are putting an addition on their house so Cassie can get out of her bedroom!

June 12, 2006
You can copy this link into your browser to watch the story about Cassie if you want to see it!

http://cbs4boston.com/video/?id=21234@wbz.dayport.com

June 11, 2006
For anyone who missed it the first time, William Johnson will be featured when Extreme Makeover Home Edition will be airing a repeat of that show on Sunday July 16. I will not be home to see it, rather we will be enjoying a montage of country music from: Kenny Chesney, Gretchen Wilson, Big & Rich, Carrie Underwood and Deirks Bentley with some friends down in Foxboro. It should be an alright birthday for me!

June 6, 2006
This is for my son, who was supposed to have a BIRTH day tomorrow. Instead we carry on without him or his brother; holding on to the pain in our hearts. It has been a difficult few days for me, thinking of all of the "what ifs", wanting nothing more than all of my children.

Please dont tell me it is better this way; that either of my kids are happier and safer in "Gods arms". MY ARMS are where they will always belong.


~~The Empty Womb~~

I carried you so lovingly,
within my gentle womb...
and little did I realize,
your life would end too soon.


I never got the chance to say
"I love you, little one"...
before I held you in my arms,
your life on earth was done.


The grief is indescribable,
to lose a child this way...
all the many hopes and dreams,
just vanished on that day.


I know Ill see the sun shine bright
upon my babys face...
when I finally get to heaven,
all my pain will be erased.


We ll soar the skies together,
as angels two by two...
we ll have a sweet reunion;
this mothers dream come true

~Jill Lemming

June 2, 2006
" . . .with all theyre going through
its no small miracle that love hangs on
hearts get weary when hope is gone
in a world where roses wither and die
its no small miracle when love survives . . ."

~KC

May 26, 2006
Today we stopped at the cemetery to see Murphys brothers and my dad, who would have turned 56 today. It took me forever to get Murphy out of there because she kept trying to stay and play with their toys, not to mention kissing Marshalls picture on his stone. When I finally got to the van and strapped her in, I turned the key to start the car and Who Youd be today was playing on the radio. Poignant and painful, to say the least.

I think it is a good day to go to the nursery and pick up flowers to plant for my boys. I will do that today when Murphy wakes up from her nap.

May 25, 2006
We can just add Similac to the list now too. I just got a bunch of free formula samples in the mail for my "upcoming arrival!" Super. Fantastic.

These companies are SO eager to find out when you are due so they can send you their stuff. Yet NONE of them cares to check if your baby is still alive, or is even going to arrive at all.

May 16, 2006
I have no idea how they know, but somehow Pampers and Huggies remembered my due date when no one else did. Twice this week I have gotten those free samples of newborn size diapers in the mail. The one today says "After 8 months of getting ready, whats left for your baby to do?" right on the box. Um, shall we see whats left? Being born too early is one. Dying is two. I probably dont need to continue, do I? I swear, they just like to make me cry.

May 8, 2006
We had such a nice day on Saturday at Connors Fun Run. Money is still coming in, so totals are not final yet, but it was really successful and the weather was great! We had fun at the Reillys afterward hanging out with them, plus MJ and Brenda and Peg.

I am so thankful to be part of such a wonderful family (my SMA family!) The Reillys have this incredible group of people who are so dedicated to making CFR the success that it was. It was a pleasure to work alongside them all.

I will update when the totals are final. Thanks for checking in.

May 1, 2006
The past few days I have heard something that really is like nails on a chalk board to me.

When talking about herself having another baby, someone has recently said something like "If God decides to bless us with another one". ??? Another woman (fully aware of my two losses) said about her daugher, who is now expecting her FIFTH child "If God wants you to have another one, you will!" ??? Please explain this to me. I was blessed by having Murphy but not Marshall because he could not stay? We were not blessed by having Aiden because he never made it long enough to live? God has decided not to bless us again? God simply does not want us to have another one?

Whatthef**kever! I am fairly certain that *God* does not only bless people who can have healthy babies. Again another area of wonder for me. I do not wonder about the *God* blessing thing. I wonder why people say such stupid things.

Not sure if I have ever said this before but I am quite glad I have my OWN websites with my OWN journals and I am free to write whatever I wish. It is liberating for me to have control over SOMETHING in my life, even if it is just a stupid online journal.

April 28, 2006
So today I am out walking with Murphy and one of our rather talkative neighbors hollers out from his yard, out of the blue "Hey, Are you pregnant?" It caught me off guard, to say the least. I offered a simple answer "No, I am not." And he said "I thought you were? I thought you were supposed to have a baby soon?" So I crossed the street and told him I was due to have the baby in about a month, but lost him about halfway through the pregnancy. It is never fun to deliver that type of news; yet it is a thousand times worse to have to carry it in my heart day in and day out. So the neighbor says "Oh man, I am sorry. That is too bad. This was your second loss too, right?" And I replied "Actually it was my third."

I can only look at Murphy and be so very thankful for her, but at the same time, I curse the fact that my single stroller is not a double, or a triple for that matter. I want my babies. All of them. Still sucks.

April 25, 2006
So after receiving 3 notices from the hospital about my overdue payment (the $500 copay from our hospital stay in January), I called my patient services rep. from the hospital and asked her to please take care of that because there was no way I was even going to think about paying that any time soon. I still have too much anger about the way I was treated. This lady is really good and has been helping me through this since about February. I had a strong feeling she would get results for me, and she did.
She called me yesterday and informed me that the hospital waived the copayment. Aw, how sweet of them! I am touched. Really.

Well, thanks to Fran for giving me the idea to fight at least that much. And thanks to my patient services lady - she was very sweet and helpful. No thanks to the hospital though. (yep, still bitter.)

April 25, 2006
Today I pulled into the full serve gas station to fill up my van. The attendant did not speak English very well, but enough that we were conversing a bit. He saw Murphy in the back of the van and said "You only baby?" (Asking if she was my only baby). I took a deep breath, begged my sons for forgiveness, and boldly denied their existence. "Yes" I answered. "She is my only baby." He said "That is good. Too many babies too much money. Have 2. Stop at 2." I just nodded and pretended to agree with him. It is not his fault but he is sadly mistaken. There is nothing "good" about Murphy being my only baby. And I would happily give every cent I have ever made to have Marshall, or Aiden, or any one of them back in my arms again. ". . . too much money". Whatever. You can not put a price on a the life of a child. I learned the hard way. I hope the man at the pumps never has to learn it at all.

April 21, 2006
My friend Nancy (mom to Aiden who also died of Type I SMA) shared this with me yesterday.

There was a life
That had barely begun
No time to find
Your place in the sun
No time to do
All you could have done
But we loved you enough for a lifetime.

No time to enjoy
The world and its wealth
No time to take life
Down off of the shelf
No time to sing
The song of yourself
Though you had enough love for a lifetime

Those who live long
Endure sadness and tears
But you will never suffer
The sorrowing years;
No betrayal, no anger,
No hatred, no fears,

Just love - only love - in your lifetime

~Mary Yarnell

April 13, 2006
~~Changes~~

I am not a fan of big changes. I like things the way they are. Changes to me often feel like the gap between Marshall and me is widening. A few weeks ago when Mark cut down 2 trees in the back yard, I hated it. I hated it because that was just something else that was here when Marshall was here, and now it is gone with him. I hate losing anything that existed when he did. Each thing that is lost makes me feel further and further away from his very existence.

I hated it when our dogs died. They were part of Marshall. I hated it when we got rid of our Jeep. That too was part of Marshall. The popsicle in the freezer that belonged to Marshall - I cried the day Mark ate it. There is still a piece of chocolate in there from our Marshall time. I remember the day Cindi Minardi brought it over after Marshall was first diagnosed. She took us some goodies from Whittier Farms and that chocolate was part of it. It has been in the door of our freezer for almost four years. I can not take it out. I do not want to throw out another reminder of Marshall. I see it every day. And every day I ask myself "How long are you going to keep that?" And without answering, I just shut the door.

Books on the shelf, stuffed animals in Murphys room, old bottles of medicine, gauze pads, syringes, Bactroban, baby shampoo, lotion, bars of soap, old pacifiers, mismatched socks, stained t-shirts, holey blankets, etc. I could name a thousand things that I could throw away right now. But I just dont want to. I dont want any more change. I want things to stay the same.

Please everyone, for the love of all that is good, unless you can bring my kids back, please do not change anything else!

April 11, 2006
Families of SMA has partnered with GoodSearch.com to raise
money for FSMA.

GoodSearch.com is a search engine, like Google. The site is
powered by Yahoo!, so you will get the same quality search
results that you are used to. Whats unique is that they have developed a way to direct money to FSMA with every click.

The more people who use this site, the more money will go to research. If 1,500 people search only twice a day that will equal over $10,000 a year for FSMA. Just from searching the Internet. There is no limit.. the more searches, the larger the donation.

So please spread the word to your friends and family. It does not matter where you live - anyone can help!
http://www.goodsearch.com
You MUST put FSMA in the "I am supporting" box and get clicking!!!

March 31, 2006
If you are part of our SMA family, I welcome you to our site. I am sorry that you have to be here or even know what SMA is. 2 years ago we founded Marshalls Miles in the name of our son, who died of the disease in 2002. We are happy to say that in 2 years we have raised more than $30,000 to help families. While we have sent much of the money toward research projects to fund the cure, we have also donated several thousand dollars in equipment and funeral/burial costs to our SMA families. So far we have been able to honor all requests that have been made for grants toward equipment and accessibility options for other SMA families. We are honored to work with all other SMA organizations and our main focus is to raise funds to find that cure that we all need so desperately. We look forward to the day that our organization and any other is no longer needed to raise money for SMA research/assistance. Thank you for supporting us and working with us.

March 30, 2006
Just figured I would do a little update, as they have been infrequent on this portion of the site. There is not a lot you can say about your children or their deaths, that has not yet been said before in the three years prior. That is why I do not write here so much anymore. Not because there is nothing to say. I could say over and over how much I miss my kids. But you would likely get tired of reading it. So instead I carry it in my heart, and I brave the world with my facade. But the broken heart is never mended. And as much as I love and cherish my little girl (that is evident on her own site) I still miss my boys. I miss the opportunity for my child to have her brothers.

I used to frequent a few message boards, looking to connect with other mothers. As time went on, so many of these moms became pregnant and many have had their babies in the past month or so. I stopped going to the message boards. No need to dump more salt into the wounds that are unable to heal as it is.

It is all around me in my real life too. Relatives and friends, all expecting babies. I am painfully reminded daily that all of these new babies will never play with my sons, the way we all thought it would be. Everyone around me has the perfect family. A boy and a girl. Why not us? That is the question I have no answer to.

I recently joined a new message board for moms who have lost kids, and even another one for moms who are parenting a living child while missing one or more of their other children. I have found something in common with this group. They get it when no one else can. I am thankful to have them. And yet I wish I never knew them. I want so much to be normal - to have a normal life and not need the grief groups, the therapists, the antidepressants. I want to close my eyes at night and dream happy things. Instead I close my eyes and am tormented by the events of 3.5 years ago, 3 months ago, and I forever fear that my daughter is next. I fear she will leave too. I know, it is not normal. But my definition of normal has been tainted. Normalcy? It is gone forever.

I often hope that I will not be like my grandparents. They are wonderful people but I simply do not want to live that long! Another 60 years is WAY too long to see my boys. Now, nobody freak out. I am okay to stay here and enjoy my daughter and whatever else life wants to throw my way. But I am rather excited at the prospect of being with my other kids some day, wherever they may be. If all they are is dust in the ground, that is fine, as long as I can be dust with them! Or if they dwell in some sort of heaven, that will be wonderful too! But I am far too tired to carry on without them for decades and decades. The thought of it makes me ill. Right, I know. Thats not normal. But remember, normal for you is very different than normal for me!

As a new season of Spring is arriving and the flowers are coming up, I am always reminded that my own little flower needs me to tend to her needs and be sure she grows up properly. But I very much miss the flowers from last season too.

March 26, 2006


"An angel in the book of life wrote down my babys birth, then whispered as she closed the book "too beautiful for earth”.

Two boys, too beautiful for earth. I miss you both.

March 18, 2006
There are several area fundraising events for SMA coming up. This is a big year for the fundraising! We hope it is the year for the cure also. I will list the events by month as we get closer. For now we will start with May:

May 7 - Connors Fun Run www.connorsfunrun.com held in Norfolk, MA. Proceeds to benefit Marshalls Miles. We are in the process of working to set up a website for MM and will link it as soon as it is ready! This event is held in honor of Connor Reilly, who just celebrated his FOURTH birthday! Connor has Type I SMA just like Marshall did. His family has always been a wonderful support to us and we look forward to working with them this year! We will have pledge sheets and more information soon, so please let me know if you are interested.

May 13 - Walk-n-Roll Across America in Hingham, MA. Proceeds to benefit Families of SMA www.curesma.com Held in memory of Cianan and Cecilia Murphy, this is a short walk of 1.5 paved miles. Wheelchairs, strollers, and leashed dogs are welcome. It is a true family event with activities for the kids afterward. I have brochures for this one if you are interested. On the back of the brochures is a list of names of kids with SMA and those who have been lost to SMA. Unfortunately each year the list grows longer and longer. Please come and support us so that the length of this list does not continue to grow!

March 15, 2006
A week or so ago, I sent in a letter that I wrote to the hospital and my doctors, as well as my health care insurance provider. I went through piece by piece exactly what I experienced on January 3rd. I gave compliments where they were due, but most of the letter was a complaint about the way I was *treated* (ignored would be a better word here).

I still have not heard from anyone at the hospital, but someone from the insurance company just called me and asked my permission that the case be brought up for review by their board. Once I agree to this, supposedly they have a board of doctors who will access my medical records and go through them and determine what, if anything, could have been done differently. They will then contact the hospital and bring their concerns directly to them. Unfortunately, due to the privacy laws in MA, I will not know the outcome of what, if anything, is done at UMass. The woman on the phone (who was also a patient services advocate) told me she could not have written a better letter if she had been in the room with me that day. She said she was proud that I took a stand and advocated for myself and my child. What she fails to understand is that I did NOT do this for myself or my child. I did this for all of the voices who can not or do not speak up when they have also been mistreated. I hope we get some justice here.

March 12, 2006
Today we buried your brother, Marshall. But you probably already know that. We chose today because the weather was supposed to be nice, and Daddy was not at work. A very sweet girl from the funeral home met us there to bring the remains of Aiden. Thank you, Abby.

When we got to the cemetery, it was only 40 degrees out and it was cloudy and damp. I somehow expected it to be a peaceful and serene experience. Of course it was not though. Neither of the deaths of my children were peaceful at all. One struggled to find his way, and the other made me wonder if I was going with them both. So it came as no surprise that the burials would not be peaceful either. But we are better for having some closure on this situation. And we are glad we did it alone, just the 3 of us. That is what we wanted.

We shed some tears. We grieved for the 2 boys that should be ours, who no longer are. I begged my daughter to never, never end up in that hole with her brothers. Not as long as I am alive, anyway. She just kept on kissing that picture of big brother on his stone. She would have loved him so much.

On the way home, all 3 of us were silent. The surroundings along the street were still also, all the way home. There was no one outside. No animals were around. We did not pass any other cars. Still, still, still. And so very quiet. And then we turned on to our street. And about that moment, 2 birds swooped down and flew side by side right in front of the car. Thank you, my boys. Keep flying, my free little souls.

February 20, 2006
Today we went shoe shopping for Murphy. There were lots of cute little girl shoes. But I found myself drawn to those for little boys. I loved the brown dress shoes and the white baseball sneakers SO much more than the pink sneakers and the black mary janes. We even bought Murphy a pair of saddle shoes from the boys section. They are cute on her though!

I truly miss having boys. My heart will always be empty where my sons should have filled.

January 10, 2006
The TV was just on, but I was not paying attention to it. An advertisement for a new movie was playing. The only thing I heard was this: "Why long for things if they are not meant to be ours?"

I only wish it were that easy.

January 5, 2006
Well, today is Murphys birthday, a special day indeed. We celebrated and had fun. But now she is in bed. I can no longer sit back and pretend that everything is okay. And I do not have to. Plain and simple, this sucks. I am so hurt and so broken over all that we have experienced. I wanted this child so badly. I just knew in my heart that he was a little boy, and that we would get the opportunity to finally raise a little boy. Although he was not Marshall, we were so excited at the prospect of being parents to another little boy; a HEALTHY boy, one free of SMA. And in the blink of an eye, it all changed.

I am going to write this here because I feel that some people are wondering things and are afraid to ask and it is okay for me to share. But before you read this, please be reminded that it is not pretty. None of it is fun or happy in the least. It is just our experience and since this is our journal, I am going to write about it. If you are easily offended, please stop reading.

My doctor was away at a funeral last week. I know that the outcome would not have changed if she was there that day, but I would have been treated so much better than I was.

I went to bed on January 1st and woke up many times a night soaked in blood. Since I had been bleeding throughout this pregnancy, it was not completely shocking to me that I was bleeding, but the amount was frightening to me. At 4:30am I woke again (for about the 8th time since 9:00pm) and I passed a large clot. I woke up Mark and told him we needed to go back to the hospital as I was no longer comfortable with the amount of blood that I was passing. For the 3 days prior, I had done NOTHING but lie on the floor in pure exhaustion with a blanket while my sweet little girl played on the floor next to me for the entire day. I had lost so much blood that I could not even get up. So at 4:30am, I took a shower and called the doctor. Luckily the doctor on call was the one who delivered Marshall. He told me to come in to the ER. I called Mom and she came over to care for Murphy. Dr. Aversa met us in the ER and did a full exam on me. He was very concerned and caring and I appreciated his honesty and compassion. That was the last time I had such feelings toward a doctor for the rest of my stay at the hospital.

They did an ultrasound and the baby looked good. They could not tell where the blood was coming from though and that concerned him some. He ran my blood counts and since they came back low, he admitted me. He promised me it was just for 24 hours so they could give me fluid and observe my numbers. I was also promised an ultrasound first thing in the morning and a visit with the specialist (the perinatologist). I went to bed that night and the bleeding slowed. I was sure that we were on the way to recovering and I was going to go home Tuesday and go to work Wednesday, like always.

Tuesday morning I woke up and did not feel right. I began contracting at 6am and they were not very far apart, maybe an hour apart. I was uncomfortable and experiencing some really bad back pain. I paged the nurse. 10 minutes elapsed, then 20, then 45. I paged her again. 25 minutes passed. I paged her AGAIN. 10 more minutes. FINALLY she showed up. She claimed they never paged her from the nurses station but that was a line of bull because I heard them page her. I was unimpressed. She put a monitor on me and could see the contractions coming every 10 or so minutes. She turned me to my side and they stopped. She assured me that she has had this happen to women a thousand times over and they have delivered healthy full term babies. She also told me that I could be dilating and I could lose my baby into the toilet.

So I asked her "Which is it? Am I at risk for delivering this baby early?" Her response "I do not know. The perinatolgist will see you soon and she can tell you." By now it was after 1pm. Mark showed up. I began contracting severely now. The resident doctor without a personality or any compassion at all showed up and demanded that I open my legs so she could examine me. I let her. She told me I was 1cm dilated. I was crushed. I KNEW I was in labor. But they told me it might stop. Or it might not. Well, which was it? "When the perinatologist examines you, she will tell you". By this time I was getting MAD. WHEN was the specialist coming? Was I not considered high risk? Was I not important enough for her? WHERE WAS SHE? I knew my time was running out. And I felt that my baby might not make it. But I wanted a doctor OR SOMEONE (ANYONE!?) to prepare me for what could happen. I needed to know. And no one was telling me. For the record, the specialist NEVER did show up. I never did get my ultrasound. I NEVER was prepared for what was going to happen to me.

By 2pm I was frantically calling for my nurse. I was in full blown labor and I knew my baby would definitely not make it. My nurse did not show up. I hit the button. They said she was coming. No nurse. Mark hit the button. They said she was coming. No nurse. I hit it again and started SCREAMING "NOW. NOW WOULD BE NICE!" All of a sudden there were six people in my room. Nurses, residents, and whoever else. They simply stood at the foot of my bed and folded their arms across their chests.

I began demanding drugs. I knew he was dying inside me and would be born soon. I wished I was unconscious for the whole thing. I wanted to run from this unimaginable pain. They gave me a shot of nubane. It helped for about 5 minutes. Then nothing. An hour later I was screaming for something else. This was the worst physical pain I had ever endured. And even worse than that, my heart hurt so badly. I did not see why I had to go through all of this to only hold a dead baby in the end. I wanted someone to over-dose me on some heavy medication. They kept telling me the anesthesiologist would come with an epidural or they could give me morphine. They did neither. I wanted to die. A shot of demorol. That did nothing. I truly did not know how I could make it through anymore of this physical and emotional suffering.

And then an angel walked into the room. Her name was Debbie. She was going to be my new nurse. At this point I was swearing at everyone else for just staring at me and doing NOTHING for me. She crouched down behind me and started rubbing my back and encouraging me to breathe through every contraction. She assured me that I was going to be fine, even though my baby was not. I tried to believe her. I kept my eyes closed for about 30 minutes. I screamed and cried through every contraction. The resident doctor stayed while Debbie rushed around and tried to make me comfortable. The resident doctor put the ultrasound on me. WHY? WE knew it was over. She pushed it into my belly. I told her it hurt and asked her to stop. She did not. My son was still alive seconds before he came out of me. He came out because my placenta detached and my body expelled everything, including my baby.

With the last contraction, I knew it was the end and I felt him slip out of me. I opened my eyes and realized the last person of the 5 had just walked out of the room. Debbie had turned around to get something and my poor son landed on the bed. NO ONE was there to catch him. As soon as she realized what had just happened, she scooped him up and took care of him. The resident doctor jumped back in to examine me. Why? I have no idea. I was pretty disgusted with her. She might be the best doctor in the world but her compassion sucked, as did everyone elses in that room that day. Except Debbie.

I yelled out to her "Tell me my baby did not suffer!" And she replied "your baby is beautiful". I cried and screamed "BUT TELL ME HE DID NOT SUFFER!" She said "he did not suffer". So I said "Then it is okay that I did." I sat a minute and rested while she cleaned up my son. We were so lost. We did not know how to grasp what just happened. And then what? We were supposed to hold this child and get used to the idea that he was not coming home with us.

She was right. He was beautiful and oh, so tiny. He was perfectly formed, just very very small. I still felt like it was a dream, a bad dream. I feel (even today) a lot of the things I felt when Marshall died. This can not be my life. This is not happening to me. Yes Laurie, it is. This IS your life. You are now the mother of JUST Murphy. That is it. I had to keep telling myself there would NOT be any sibling. It was crushing.

This baby was supposed to be named Truman. Truman means "faithful one". Yet when Debbie placed him into my hands, he was Aiden. I have no idea why. But his name was Aiden. Perhaps his angel friends were around him that day and went to greet him. (Marshall has 2 special SMA friends with BIG connections to him named Aiden). Were they there that day? Where was Marshall?

Every time I see a vision of his face, I know his name is Aiden. But I do not know why. One of the many mysteries of this whole thing, I suppose.

After all of that, we had to sign papers and release yet another son to Jackman Funeral Home. WHY cant I just take my children home to live with me happily ever after? WHY did this have to happen to us TWICE? Why me, who wanted so many children, who had tried SO HARD to get my daughter a sibling? WHY WHY WHY? Forever I will ask myself these questions. We have decided to take our second son and have him cremated and add him to the pile of family members sharing the same plot over at St Denis cemetery. I am ever so slightly comforted that my sons will rest together, forever.

For you, the story ends here. For us, it does not. We will carry this pain with us for the rest of our lives. We will forever wonder WHY this had to happen. We will feel the hurt forever. Just when we thought we were really healing up and surviving the loss of Marshall, the wounds were reopened and more salt was heartlessly dumped in. More time. More healing. More questions.

More love for the little girl who has graced our lives. More worry that she too could leave us at any given time. More presents for her. More tears for her brothers.

We thank you all for reading, if you have gotten this far. We are comforted by your words and thoughts and the kind things you do for us. We just wish we could understand any of this . . . It is NOT FAIR. I want my babies. I WANT ALL OF MY BABIES. 4 pregnancies. 3 deliveries. 2 dead babies. 1 healthy baby, who will be given the WHOLE WORLD at the hands of her parents, who love her so very much.

Whoever is in charge up there, I thank you for Murphy. She is the reason I am alive at this very minute. She brings me joy that words can not describe. But I will not lie. I am angry. I am hurt. I am sad. And I am rapidly losing faith. Please, someone help me understand this. . . . . . . . .

January 4, 2006
Oh Marshall. NEVER did I think you would be getting a sibling to keep you company in heaven. Maybe you needed him more than we did, although I can not wrap my brain around why or how that is possible. I know you 2 will have a blast together and I am thankful that you have one another. Selfishly I wanted both of you.

January 4, 2006
Dear Friends,

As much as I did not want to write this, I simply do not have the strength to call anyone at this time. This seems like the easiest way to get this out, and I need to get it out.

As you may or may not know, with this (my most recent pregnancy) I had been experiencing many complications, including severe bleeding. On January 2nd, I went into the hospital because it was so bad and it was just beyond my comfort zone. At the time, the ultrasound showed that the baby was perfectly fine and they admitted me for observation because my counts were so low.

About 36 hours later, my body quickly entered labor and at 18 weeks pregnant, there is nothing they can do to save the baby. My placenta tore away from my uterine wall. The baby could not survive without its only source of nourishment. I labored a fierce and painful labor (by far the worst of all 3 of my children).

Yesterday at around 4pm, for the second time in 3 years, I again held the body of my lifeless son in my arms. The kicker of this was that this baby was SMA-free. Yet for reasons we do not understand he still could not be ours to keep. We never thought it would end this way.

I have no other words other than I am so emotionally tapped right now. I wish there was an easier way to tell you all. I wish there was an easier way to experience it all. But there is not. We are in NO way ever putting ourselves through this again and will be taking measures soon to prevent it. We no longer feel protected against such severe pain and will do what we can to keep ourselves safe.

For now we will rejoice in the healthy daughter we do have. Her birthday is tomorrow. As sad as we are today, we also have MUCH to celebrate and MUCH to be thankful for. Thank you for your prayers and friendship. They are so appreciated.

~The Potter Family
Laurie & Mark & Murphy

December 25, 2005
Merry Christmas to you, Angel boy. While I rejoice in Christmas with your sister, when I think of you I can only think that today marks 3 years and 3 days since you left our world. I wish the story had a different ending. We miss you tons MD!

December 21, 2005
3 years ago tonight, I held my baby boy in my arms as he very slowly faded from this earth. Today I keep looking at the clock and can almost account for every second of what we did, where we were, and how we spent that sad sad day 3 years ago. Marshall died on the 22nd but it was 2:33am and I consider the 21st the last day he was with us. And even then, I think he was already gone from us for most of that day too. This day, 3 years ago, was definitely the most difficult, empty, lonely, fearful, and painful day of my life. There never was such heartache in my life until I watched my lifeless child clinging to shallow breaths which occured minutes between one another. He sure did not teach us how to die (as this was just lengthy and painstaking. I KNOW he could have made it easier on all of us!) Most certainly though, he taught us how to live in such a short little time!

This year the holidays are a little happier than they have been. I am a mom for the first time on Christmas! How will it feel to watch my daughter open gifts and then immediately be reminded that her brother should be there opening them next to her? Perhaps he will be there, I do not know. We will be happy and we will try to enjoy the day and I know we WILL enjoy the day; not for us, but for Murphy who deserves all of the magic that Christmas will bring her. My God, how I love that little girl! It pains me to know I could love her brother that much too, in a physical sense, if he were still here. Instead I have to do it long distance, through memories and pictures. Yet I am so thankful I get to do it at all. My blessings. My children.

We miss you, Christmas Angel.

December 20, 2005
What a scary day so far! This morning I wondered if I was losing my second baby in 3 years in the same week. I will try to keep details to a minimum, but I woke up in a rather large pool of blood this morning at 7am and it freaked me right out. Thankfully Mom called into work and stayed with Murphy while Mark took me to the hospital.

The good news is that the baby is alive and well! The other news is that there is a blood pocket above my cervix that is going to cause my body to continually have these episodes of bleeding. It is very scary and unnatural to have this happen at 16 weeks pregnant!

I am not under any restrictions right now, other than to call and go back to the doctor if/when this happens again. We are at a higher than average risk for pre-term labor but other than that, things are looking fine.

Thanks for keeping watch over your new little sibling, Marshall! We need all the help we can get with this one!

December 15, 2005
3 years ago today, you started your week long journey to heaven, Marshall. It is such a difficult week for Mommy and Daddy to remember all that you had to endure while you tried so very hard to find your way. My memories of your last week are filled with oxygen tubes, morphine, daily Nancy visits, etc. I choose NOT to remember any of it all year long but this week every year, it really does creep up on me. Missing you, on this - the third Christmas without you. I hope you do not mind, I spent loads of money on a needy family because I really wanted to buy gifts for you, but truthfully there was a family who really needed them more and since you could not play with them here, I just thought it was the right thing to do.

Thank you for sending me your sister and someone new. I love you and miss you so very much.

Take care of Piper, the newest angel.

December 7, 2005
Big Brother - you are now going to be known as the Biggest Brother! Mommy and Daddy are expecting yet another SMA FREE addition to our family in early June of 2006. We are excited and almost in disbelief that we have evaded SMA twice in a row. Thank you for making this happen, Marshall. We know you are behind the most important of things!

December 4, 2005
Godspeed Miss Morgan Saville. How shocked I was to learn of your journey to heaven last night.

November 22, 2005
Oh Marshall. Your kitty is missing. She has been gone for 2 days now. She is strictly an indoor cat and no one here recalls letting her out. She has been a little overwhelmed by having so many visitors but she has never left us in 6 years - she never had the desire to. We just can not find her and Mommy is a little heartsick over it. I do not think she is coming back. Send her home if you see her!

November 22, 2005
SHE IS HOME, SHE IS HOME! I thought for sure she was a gonner, but she is home! Thank you, Marshall! If anyone could get her home, I knew it would be YOU!

November 15, 2005
Here is another one that makes me think of you, Marshall! It is by Brad Paisley.

When I get where Im going
On the far side of the sky
The first thing that Im gonna do
Is spread my wings and fly

Im gonna land beside a lion
And run my fingers through his mane
Or I might find out what its like
To ride a drop of rain

Yeah when I get where Im going
Therell be only happy tears
I will shed the sins and struggles
I have carried all these years
And Ill leave my heart wide open
I will love and have no fear
Yeah when I get where Im going
Dont cry for me down here

Im gonna walk with my grand daddy
And hell match me step for step
And Ill tell him how I missed him
Every minute since he left
Then Ill hug his neck

Yeah when I get where Im going
Therell be only happy tears
I will shed the sins and struggles
I have carried all these years
And Ill leave my heart wide open
I will love and have no fear
Yeah when I get where Im going
Dont cry for me down here


So much pain and so much darkness
In this world we stumble through
All these questions I cant answer
So much work to do

But when I get where Im going
And I see my makers face
Ill stand forever in the light
Of his amazing grace
Yeah when I get where Im going
Therell be only happy tears
Hallelujah
I will love and have no fear
When I get where Im going
Yeah when I get where Im going

November 8, 2005
Well Marshall, Today I went to pick up the new Kenny Chesney cd. No coincidence that I ran into Allisons grandpa while I was out. You two are working together, I can see it.

Here are the lyrics to "Who Youd Be Today" and I am convinced they wrote it for us, Pal. (And of course I had to take out the apostrophes because otherwise I could not submit this entry.

~~~~~~~

Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
See your smile, I see your face
I hear you laughing in the rain
Still cant believe youre gone

(Chorus:)
It aint fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that Ive been through
Just knowing, no one could take your place
Sometimes I wonder, who youd be today

Would you see the world?
Would you chase your dreams?
Settle down with a family?
I wonder what would you name your babies?
Some days the skys so blue
I feel like I can talk to you
And I know it might sound crazy

It aint fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that Ive been through
Just knowing, no one could take your place
Sometimes I wonder, who youd be today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know, Ill see you again someday

Someday, someday

November 7, 2005
Just a quick thank you to those who have participated in the dollar campaign for FSMA - it is working, you are making a difference! Thank you!

Also, The Extreme Makeover Home Edition featuring The Johnson Family will air on November 20. Watch your TV listings for local times!

November 7, 2005
Just a quick thank you to those who have participated in the dollar campaign for FSMA - it is working, you are making a difference! Thank you!

Also, The Extreme Makeover Home Edition featuring The Johnson Family will air on November 20. Watch your TV listings for local times!

October 30, 2005
A video link from yesterday!
http://cbs4boston.com/topstories/local_story_302194129.html

October 29, 2005
I got this today in my Inbox. Thank you to everyone who wrote letters in support of this - it is a great victory for SMA!

Dear SMA Helping Hands:



Earlier this year, you were incredibly helpful in participating in our
letter writing campaign to Dr. Duane Alexander, Director of the National
Institute of Child Health & Development, to urge him to join in efforts
to find a treatment and cure for SMA. As you recall, Dr. Alexander had
previously rejected any notion of funding SMA research, despite the fact
that it is the leading genetic killer of infants and toddlers and is
completely consistent with the mission of his Institute.



Therefore, we are extremely pleased to share with you that all of your
efforts this past year have paid off! Due to your efforts in writing
letters to Dr. Alexander and participating in visits and contact with
your Members of Congress, Dr. Alexander has now committed to do the
following: 1) dedicate their own resources and researchers to do
research on SMA, beginning this year and 2) to actively support SMA as
part of the newborn screening initiative.



This is a huge victory against all odds and it is due to your efforts!



We will continue to send you updates and again, thank you for all your
help,



Thanks!



Donna Mullins

On behalf of the SMA Coalition

~Me again. It is a HUGE deal to include SMA testing as part of newborn screening. This will help a great deal of families whose babies might have been thought to have died of SIDS. They can now be diagnosed properly. This also allows families to decide if their affected children should be part of the new drug trials or not and possibly to initiate treatment sooner to prevent such rapid progression of SMA. This is a great victory! Thanks for your help in obtaining it.

October 26, 2005


Well, tis the season.

Godspeed, Alex.

October 25, 2005
Dear Marshall,

I know you were there to welcome Aiden on Sunday. Please take care of him. Please be with your Mommy and help her to be a good support to Aidens family during this sad time for them. Aiden is a special little guy. His earth mission lasted exactly as long as yours - the same number of days! And he had those eyes too. That is how Mommy first knew he had SMA. What is it with you SMA kids anyway? Your eyes tell so very much! You are still doing your work well. Mommy misses you so much, Slim.

~Godspeed, Aiden

October 17, 2005
Happy Happy Birthday to Carter Muszkiewicz who arrived TODAY on his due date! Carter is little brother to my special pal, Lindsey. www.curesma4lindsey.com

Congratulations everyone!

October 12, 2005
Just got word from Mr. President, Jim Gaudreau, that FSMA travel mugs (stainless steel!) are now for sale at $12 each. They DO fit into vehicle cup holders and of course proceeds benefit FSMA. Let me know if you would like one and I will be happy to place your order! Thanks!

October 2, 2005
Copy and Paste this link into your browser. It is a cool article from todays Globe. Congratulations Johnson family!

http://www.boston.com/news/local/massachusetts/articles/2005/10/02/medfield_family_gets_extreme_gift/

September 17, 2005
We finally have our CURE SMA bracelets in. They are similar in size and shape to the Lance Armstrong bracelets. Ours are black and red and say simply "CURE SMA". They are $2 each and proceeds benefit Families of SMA. I will be happy to drop yours in the mail or deliver it in reasonable proximity! Let me know who wants one!

September 9, 2005
There are updated pictures and a short movie for your viewing pleasure. Just click the bike logo on the main page for pictures of our first bike run!

August 20, 2005
Please do not forget to light your candles at 8pm tonight, August 20 in ALL time zones!

August 15, 2005
Happy Birthday, Big Brother. We miss you more than words could ever say. Mommy remembers this night so well, three years ago. We were so excited to meet you.

How cheated we feel, that we never even got one birthday with you - and here we are already remembering the third birthday without you.

I always wonder how you would be if you were here. What would you be like? (We are pretty sure we know what you would LOOK like!) What would you like to play with and look at? Would you be able to talk? What would you say? You could have been such a fun boy for all of us. Mommy thinks of this every time we see Gage. I feel bad for him. He is growing up alone, without his best friend. He does not even remember you - only from pictures. His Mommy brought us a Mickey Mouse balloon for you today - as she always does on your birthday. It hurts me that we are without you Baby Boy, but it helps a little knowing others are not forgetting you either.

I wish I could hold you once more today.

Happy Birthday, MD.

August 7, 2005
A note from my friend, Karen:

Hello everyone, I wanted to post a message about the upcoming annual SMA Candle Lighting which is scheduled for August 20th this year. I lost my precious Jessica on June 11th of 2004, and prior to Jessica I lost my precious Baby Eric on Mothers Day 1988, both type 1. When Jess passed I thought about an annual candle lighting for our SMA Babies fashioned by the Compassionate Friends Annual Candlelighting which is set for December each year. It was and is extremely important for me to have these SMA babies, children and families recognized! I thought what better month than August to have this candlelighting which is SMA Awareness month! So please have your candles ready and hearts open on August 20th this year. I hope to light the globe, not only for Jessica and Eric but for your babies and children, families as well. If you would like to view photos from last years first annual SMA Candle Lighting please visit www.smasupport.com. God Bless, Karen Slavik

August 7, 2005
Thinking about you a lot MD. Your birthday is soon. It blows my mind that you would be 3 years old. You should have been running around the yard playing with Gage, not up in heaven with all of your friends. This is not the way I ever imagined things would be. It is not supposed to be this way. I miss you so much.

Your little sister is doing so well. You truly do live on in her. She still looks like you (how do we know? She is nearly twice the age you ever were!) She often giggles where there appears to be nothing. Are you playing with her? She has also taken to liking dragonflies (we call them Bigbrotherflies now) and they seem to like her back! Is that your way of staying connected to her?

Every day I wonder what life would be like with you and Murphy here at the same time. And that is as far as it gets - wondering. I will never know. She will never know what it is like to have a big brother to look out for her when she gets older. But will you still do it? Just spiritually, not physically - yes, I believe you will. I still wish we could hug you and love you in a physical sense. Your sister gets more smothers from me than any kid I know. I guess I so often remember you throughout the day and instead of hugging and kissing you, she just gets it double the amount!

Mommy misses you so much, Marshall.

August 3, 2005
A few points here:

August is SMA awareness month.

We are selling bracelets for $2 each. They are like the Lance Armstrong "Livestrong" bracelets but are red and black and say CURE SMA on them. Proceeds benefit Families of SMA. We will be selling them at our bike ride on Saturday 8/13.

We are in need of help at the ride. We need people to run raffles, run registration, help cook lunch, take pictures, occupy Murphy, etc. PLEASE let us know asap if you can help out!

And finally, we are pleased to announce our Red Sox Combination Raffle. It will be drawn on 8/13 so if you wish to have tickets, PLEASE let me know ASAP. They are $5 each. The winner receives 2 roofbox seats vs. Anaheim for 9/7/5. Also, a $50 gift certificate to Boston Beerworks (located right outside Fenway) and an autographed ball by Bronson Arroyo! Proceeds from this will benefit Marshalls Miles.

We are also selling tickets to a beautiful quilt donated by Thimble Pleasures Quilt Guild of Mendon, MA. Those tickets are $1 each or 6 for $5. Proceeds will benefit Families of SMA. Tickets will be on sale on 8/13 and also at the FSMA walk on 9/17. Any questions, just holler!

Thanks for your support!

July 29, 2005
I Am Still His Mother
~author unknown

In a baby castle, just beyond my eye
My baby plays with angel toys that money cannot buy.
Whom am I to wish him back into this world of strife?
No, play on my baby, you have eternal life.
At night when all is silent and sleep forsakes my eyes,
I will hear his tiny footsteps come running to my side.
His little hands caress me so tenderly and sweet,
I will breathe a prayer and close my eyes and embrace him
in my sleep
No I have a treasure I rate above all other,
I have known true glory ~ I am still his mother.

July 21, 2005
Just wanted to let everyone know about the walk on September 17 in Chelmsford. Proceeds benefit FSMA. We will be there for sure! Hope to see you there too. Contact me for more info.

July 17, 2005
Today, on my 28th birthday, I feel that I have everything a mother could ever wish for. My heart is so full of love and pride for my little daughter and my angelic son. The only thing I could ever want for my birthday (or any day, for that matter!) is for SMA to disappear forever and for my son to be back in my arms and for life to be the way I knew it before October 10, 2002. Ah well, that is out of the realm of possibility. For now I will enjoy my little girl and always wonder how much like her brother she really is. I love them both so much . . .

June 28, 2005
Thanks to Jay and company at Hitcatcher (www.hitcatcher.com) for updating the site with the ride info!

June 24, 2005
Fliers for our motorcycle ride are finally available! If you know of any interested parties, let us know so we can get them (or you!) the info. I will be happy to email the flier to you or I can snail mail them too. We hope this is a huge success. We can not wait for it - it is going to be a blast, that is for sure!

Happy to do this for you, MD! It is so nice to see your face on so many fliers! (Thanks MDR!)

June 15, 2005
Just in from Families of SMA:

Mercy Medical has been an amazing supporter of FSMA - helping to provide
flights for SMA patients participating in Project Cure Trials.
Now Mercy Medical needs our help! Mercy Medical is running out of frequent
flier miles that are the primary source of flights. There are a few ways
that we can help.
1. Saab is donating one million miles AmericaWest Flight Fund Miles to the
Miles of Hope Program. Go to www.saabmiles.com Individuals will select the
charity that you would most like to see receive the miles. Each charity will
be awarded a percentage of these miles, based on the number of votes
received. Selecting Angel Flight will increase the miles assigned to Mercy.
Voting must be completed by September 15, 2005.
2. Contact people with Delta Miles or America West Miles and encourage them
to donate their miles. Delta Miles: You can donate miles by e-mail, fax, or
mail. Please be sure to include the following: * Your SkyMiles account
number * The amount of mileage you wish to donate * Indicate United Way
SkyWish as the charity you wish to recieve the miles. E-mail:
delta.bids@delta.com Fax: 404-773-1945 Mail: Delta Air Lines, Inc. SkyMiles
Service Center, Dept. 654 P.O. Box 20532 Atlanta, GA 30320-2532 The donated
mileage will be automatically deducted from your account and reflected on
your next mileage summary. America West: Miles can be donated online...
indicate Angel Flight as the charity of choice.
http://www.americawest.com/flightfund/myffaccount/ff_donatingmiles.htm
or you can call America West Flight Fund 1-800-247-5691.

Thanks, Families of SMA


If you can not donate miles, PLEASE just go to the saab site and vote! It literally takes 10 seconds!

Thanks!

~L

May 30, 2005
How very nice it is to have our Marshallflies back! So glad Spring is really here!

May 30, 2005
This is really silly to post here, but I know we get a fair amount of traffic on this site, so here goes:

My sister is going to be visiting soon and we are in need of another crib for Allaina while they are here. Anyone have one they can spare temporarily? We will pick up and drop off!

May 10, 2005
Missing you today too, Big Brother.

Okay, if anyone wants to help out with the fundraiser, let me know. I have a few piddly jobs that need doing but I do not have the time to do all of them myself! Basically, it involves dropping off letters at stores, picking up donated merchandise, etc. Anyone interested in helping?

Thanks.

~L

May 9, 2005
~Missing You, Big Brother!

April 20, 2005
Jenny Gaudreau needs prayers as she got admitted to the hospital yesterday. She has pneumonia, among other things. Get well fast and come home soon, Jen!

April 7, 2005
From my good friend, Lisa . . .

Extra, Extra...read all about it!! Lindseys Milk-Bone ad is featured in the US News and World Report Magazine released this week!! She has a whole page to herself! A FULL, WHOLE, ENTIRE PAGE ON MY LITTLE GIRL!!!!! NOT to MENTION the POPE is on the cover of this issue! THE POPE of all people. THE POPE. This particular issue is a historical event and Lindsey is part of it!

The Milk-Bone ad will run again on 4/18/05 in the US News and World Report magazine (issue dated 4/25/05). I found my copies at a local bookstore.

Lindsey, Mommy is so very proud of you representing Milk-Bone and Canine Assistants. Your photo is beautiful. I hope everyone who comes across your ad sees a little girl with a whole new life ahead of her with her new Canine Assistant and that nothing is going to slow you down, ever!

~~Laurie again~~

Lindsey, we are so proud of you and we will be on the lookout for your magazine!

April 6, 2005
Godspeed, Ian.

Ians wake was just heart-wrenching, of course. It is always terrible to see the anguish the parents experience - possibly because I know how badly it hurts and I feel so helpless for them. I always wish I could do so much more.

I know Ian now flies with Marshall - but oh, how it hurts that they could not stay here with us. I miss my pal so very much.

March 2, 2005
Although my entries here are sparse, that never means we have forgotten you, Marshall. There is not always a lot to say. For now, you must also be busy welcoming all the new angels. Just this past week, Jacob and now Makalia. I still wonder when the madness of SMA stealing children will be over. Not today apparently.

Today is an important milestone in the life of your little sister. She is 56 days old today - exactly 8 weeks - the same age you were when they told us that you had SMA and you were going to die soon.

The physical differences between you both are huge. She kicks her legs and moves her arms and arches her back and stretches continuously. It really brings into perspective everything that you could not do. It still reduces me to tears quite often when she does something as simple as stretching her arms over her head, or getting excited enough that her little legs move so fast. She cries - LOUDLY. I can not believe she has the ability to do all of that. And then I can not believe you never did.

Despite the physical differences, she is a lot like you. Her eyes sparkle (though not in the SMA way that we SMA parents know). She has your nose and your mouth (and your hair too!). She loves her pacifier. She loves to smile. She brings smiles to those who are around her. She is beautiful. All things that are just like you, my little pal. Every single day we are reminded of you - the one thing missing from our lives.

Today is a sad day in the life of you but a happy one in the life of Murphy. Today we know she is going to be okay. She will never suffer at the hands of SMA and for that we are thankful.

We love you both.

~M & D

January 10, 2005
Thank you, Little Man.

December 30, 2004
2 excruciatingly long years ago, I was heartbroken to learn that NO part of my little boy could be donated to help another child in need. To me, that felt like he had died all over again. I wanted more than anything for his death to be able to help another child - to create some sort of good out of all of our own heartache. It was not meant to be.

So I decided some months later that I would donate my hair (in Marshall's memory) to Locks of Love (www.locksoflove.org). Well, today it was finally long enough and I decided to just do it. So even though this simple donation won't save another child, I feel that it somehow allows me to do something in Marshall's memory to honor him. And you can bet that the people at that organization WILL be educated about SMA and my special boy upon receiving that ponytail! He is the reason I chose to do this.

About 14 inches is what I had cut off. I've NEVER had such a short cut in my life but I have to say that I really like it! I have pictures to email if anyone wants to see it - just let me know. Thanks Tante Celia for cutting it for me!

~L

December 24, 2004
Christmas Eve - should be such a joyous occasion; yet, I can only remember 2 years ago when we buried our only child on this day. We should have been celebrating his first Christmas, opening gifts, etc. Instead we laid him into the ground in his final resting spot. Never in a million years did I think that the grave of my father would become that of my son also. You suck, SMA. There isn't any other way to put it.

For now we look for new hope in our lives . . . hopefully to be arriving soon. But we will never, ever forget the heartache that accompanies Christmas Eve.

December 21, 2004
*sigh. December 21. Two long years.

On this day, 2 years ago, we knew it was the last day we would have our boy on earth with us. We stayed in the big bed all day with him while family and friends came and went to bid their final farewell to him. All day long, the bed was filled with people who just came to wish Marshall Godspeed. All day long, we watched his every breath and wondered if it would be his last. All day long, we watched him grow weaker and weaker, as his little body became more and more beat down by SMA. All day long, we listened to periods of him crying outloud - something he had not been able to do for months prior. Was he in pain? I may never know. His little body just had such a hard time crossing that rainbow bridge. All day long, I pleaded with God to just take him quickly and painlessly because a mother cannot bear to see her child suffer so. It was not meant to happen that way. Our boy fought a losing battle against the worst kind of monster.

Marshall continued to fight and struggle through the day and night. Even when we called his beloved nurse Nancy to come and pronounce him because we were sure he was gone, minutes later he battled back and kept going for hours and hours. With every weakening moment his little body experienced though, I believe his soul was strengthening. Many believe he had left us hours before his body quit breathing. Even Nancy sent me a note today and included this line "I believe Marshall was actually lost to this world on this date." Perhaps she is right. A mother can only hope that her baby was not suffering before her eyes as she actually witnessed it. Nothing would make me happier than to know he was gone (in peace, and at rest) before it all even happened. I suppose I shall find out some day if that was the case or not.

For now - today until forever, we continue to miss our boy and mourn his loss. Nothing will ever be the same for us. We miss you SO much, Little Man, and words can't even do justice for what we feel every day without you on this earth. We anxiously await what will be our best Christmas present ever - knowing it is a gift straight from your very own heart and knowing that you had everything to do with this.

We will hug you again some day, Boy - you can be sure of that! Again I tell you Godspeed, Little Man.

Love Forever,

Mom, Dad, and your pal The Tenderheart Angel
(*hurry up and say your goodbyes! We're waiting patiently here!)

December 18, 2004
~~Something that happened yesterday:

In our new baby's room (which used to be Marshall's room), there is a box. It is a box that has been waiting for me for more than 2 years. It is the box full of things that we had in the car on Marshall's last car ride ever (coming home from Tante Mariann's on 12/15/02). The box contained toys to amuse him, medication, nasal aspirators, blankets, wipes, etc. (You get the idea). So this morning I decided it is finally time to tackle that box. Some of the things can probably be used by the new baby and some may need to be thrown out. So I'm fine to do this and I get near the bottom of the box and I find a bib. The bib has stains all over it. So what do I do? Naturally, I smell it. And guess what?! It still smells like spit up! (Even 2 years later - I was thrilled!) I know it's silly - but I was! Then I look closer at the bib and find that there are 2 small embroidered dragonflies on the bib. :o) I just love significant (but very little!) signs from my child. That brought a smile to my face this morning and there isn't a soul out there who could convince me that it's coincidental!

December 15, 2004
There are tears in my eyes as I write this. Today I received the most special gift - Marshall's quilt. How appropriate for it to arrive today. You see, today (2 years ago) was the day that our boy began his week-long ascent to heaven. Today was the day his little body started to fail him and we knew he did not have a lot of time left on this earth. Today began a week-long bout of uncertainty, helplessness, and fear - for we knew our only child would soon be gone from our arms and permanently etched in our minds and hearts. Today (this entire week, really) always brings back all of those feelings - plus those of missing someone way beyond words. This is always a difficult week for us. But today, everything we feel is also accompanied by feelings of thanks, appreciation, and sheer amazement at the talent and generosity of a few friends and many strangers. There are no words to thank those who have contributed to Cole's Quilts. Linda Zuroff, you are an amazing person for putting this project together and being the very thing that keeps it running for all of our special kids. I want to thank you and all of our special stitchers for everything. And Cole Webb . . . the biggest inspiration. We love you and miss you, Baby Cole.

December 14, 2004
For anyone who got Allaina's Christmas photo/card, you will know what I mean when I say YEP - it's a Cheerio!

December 8, 2004
We would like to inform/remind you of The Compassionate Friends 8'th Annual World Wide Candle Lighting, in memory of all children who have left this earth too soon. The lighting takes place at 7pm in every time zone around the world. The candles typically stay lit for an hour (or for as long as you wish). The theory is that as the candles go out in one time zone, they are lit in another - creating a 24 hour wave of light around the globe. We invite you to participate and light your candle in Marshall's memory (and the memory of SO many other angels!) No matter where you are on Sunday at 7, please remember to light your candle for our baby, who is very much still loved and missed beyond words.

Thanks!

Laurie & Mark
^i^

December 7, 2004
A few times since Marshall died, I've had help with a "Call to Action" from several of you who had volunteered to write letters for various reasons. As members of the Spinal Muscular Atrophy Coalition, Marshall's Miles is again requesting your help for this. I have a letter template that you can use and it just literally takes a few minutes to add your name, and if you desire - how Marshall's life and SMA have affected YOU. I will cut and paste the request below this. If you wish to participate, PLEASE do so and be sure to forward a copy of your letter to the appropriate person/organization. Directions are clear and are printed below. Thank you!




Good Afternoon to our SMA Coalition ‘Helping Hands’:

First and foremost, thank you!



Thank you for volunteering to help us increase awareness and attention to finding a cure for Spinal Muscular Atrophy (SMA), the leading genetic killer of infants.



With your help, we will find a cure for SMA!



Today, we are issuing our first “Call to Action” and we are asking for your help in writing a letter to the National Institutes of Health.



As you may know, the National Institutes of Health is the federal agency responsible for doing research on all diseases. There are two specific institutes directly related to SMA – the National Institute of Neurological Diseases and Stroke (NINDS) and the National Institute of Child Health and Human Development (NICHD).



To date, NINDS has taken the lead on SMA and has focused resources and attention on making sure the very real and promising results of SMA research become actual treatments and a cure! In fact, NINDS has initiated a model program to speed the development of treatments for SMA called the “SMA Project” (www.smaproject.org)



Unfortunately and unbelievably, NICHD has done nothing on SMA even though its mission is to “to ensure that every person is born healthy and wanted, that women suffer no harmful effects from reproductive processes, and that all children have the chance to achieve their full potential for healthy and productive lives, free from disease or disability, and to ensure the health, productivity, independence, and well-being of all people through optimal rehabilitation.”



We met earlier this year with the Director of NICHD, Dr. Duane Alexander, and his response to our briefing on SMA and the work of NINDS on SMA was that he saw no role or responsibility for NICHD on SMA.

So, today, we are asking you to write Dr. Alexander and call on him to join the fight to find a cure for SMA!



Attached is a model letter you can use. Please feel free to personalize it or change it as you feel comfortable.



This will take just a few minutes of your time but it will make a great difference!



Here are a few simple steps:



Write your letter based on the draft letter attached and below


We encourage you to make your letter as personal as possible, feel free to add your personal story or send pictures along with your letter.


Once you have completed your letter, please mail it with the below enclosure to:


Dr. Duane Alexander, MD

Director

National Institute of Child Health and Human Development

Building 31, Room 2A32, MSC 2425

31 Center Drive

Bethesda, MD 20892-2425



Lastly, if you could please mail, fax, or e-mail us a copy of your letter to my attention so that we can track our advocacy efforts we would greatly appreciate it.


Address: 819 7th Street, NW

Suite 501

Washington, DC 20001

Fax: (202) 589-1288

E-mail: laurab@wswdc.com



We would like for everyone to try to send their letters to Dr. Alexander and a copy to us by next Friday, December 17th. If you have any questions or concerns please do not hesitate to contact me via e-mail or phone (202) 589-0800.



THANK YOU AGAIN for your help for all those with SMA!



Laura Breiteneicher

On behalf of the SMA Coalition

(202) 589-0800 (p)

(202) 589-1288 (f)







DRAFT LETTER:



Date



Dr. Duane Alexander, MD

Director

National Institute of Child Heath and Human Development

Building 31, Room 2A32, MSC 2425

31 Center Drive

Bethesda, MD 20892-2425



Dear Dr. Alexander:



The mission of the National Institute of Child Health & Development (NICHD) is, in part, to ensure “that all children have the chance to achieve their full potential for health and productive lives, free from disease or disability.”



As a (parent/relative/friend of) of a child with Spinal Muscular Atrophy (SMA), the leading genetic killer of infants, I was therefore very surprised to learn that NICHD has a non-existent role in the promising research to find a cure or treatment for SMA.



As you may be aware, your fellow institute, NINDS, has launched a model translational research program, the SMA Therapeutics Development Program (www.smaproject.org), to accelerate the process of developing a safe and effective treatment for SMA.



SMA was chosen for this project because the significant and promising scientific breakthroughs on SMA make it the most promising disease of its kind for developing an actual treatment in the very near-term. Further, it is my understanding that NIH Director Zerhouni has made it a primary focus of all NIH Institute Directors to work together to make these “bench to bedside” opportunities a reality. Quite simply, if you do not act, the lives of countless children lie in the balance, faced with needless suffering and ultimately, death.



On behalf of these children, I ask you to focus the attention and resources of NICHD on helping NINDS in their efforts to find a treatment and soon! Specifically, I would inquire about your plans to assist in this effort by dedicating specific financial resources to the SMA Project and by increasing the focus within NICHD on SMA. We have the strong support of Congress in this regard and call to your attention recently approved report language on SMA which was included by both the House and Senate in the FY05 Report accompanying the FY05 Labor/HHS/Education Appropriations bill.



I look forward to your response, we don’t have a moment to spare!



Sincerely,





Name

Address





Enclosure





Enclosure:



HOUSE FY05 Labor, Health and Human Services and Education Appropriations -

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

Spinal Muscular Atrophy.-- SMA is the leading genetic killer of infants and toddlers. The Committee understands that the severity of the disease, its relatively high incidence, and the possibility of imminent treatments have led NINDS to initiate the SMA Therapeutics Development Program. The Committee is pleased that initial work has begun on the program and encourages NIH/NINDS to move forward with the mission to develop a treatment for SMA ready for clinical trials within four years. The Committee further urges NINDS to develop a strategy for executing effective clinical trials for future therapies. The Committee encourages NINDS to integrate Therapeutics Development efforts with: the biotech and pharmaceuticals industry, academic medical centers and collaborations with voluntary health organizations.

NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT

Spinal Muscular Atrophy.-- Spinal Muscular Atrophy [SMA] is the leading genetic killer of infants and toddlers and is the most prevalent genetic motor neuron disease. Over 25,000 Americans, mostly children, suffer from significant physical disability and impairment as a result of SMA. The Committee encourages NICHD to work closely with NINDS to develop collaborations which will support the SMA Therapeutics Development project-- including an expansion of the scope and level of SMA research at NICHD. In addition, NICHD is strongly urged to develop formal programs that increase public and professional awareness of SMA.

SENATE FY05 Labor, Health and Human Services and Education Appropriations-

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

Spinal Muscular Atrophy- SMA is the leading genetic killer of infants and toddlers. The Committee understands that the severity of the disease, its relatively high incidence, and the possibility of imminent treatments have led NINDS to initiate the SMA Therapeutics Development Program. The Committee is pleased that initial work has begun on the program and strongly urges NIH/NINDS to commit the resources required to ensure a timely completion of the project mission--a treatment for SMA ready for clinical trails for current and future therapies. To maximize program efficiency, it is also critical that NINDS integrate Therapeutics Development efforts with the biotech and pharmaceuticals industry, academic medical centers and collaborations with voluntary health organizations. The Committee encourages NINDS to aggressively expand its SMA basic, translational and clinical research portfolio. The Committee understands that the strategy for developing a treatment for SMA will guide therapeutics development for other diseases including: Duchenne Muscular Dystrophy, ALS, Huntington's and Alzheimer's. The Committee strongly urges NINDS to successfully and expeditiously execute the SMA Therapeutics Development Program for the benefit of patients of SMA and countless other diseases. The Committee requests that NIH report back to the committee, no later than April 2005 with a progress report on all aspects of SMA research.

NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT

Spinal Muscular Atrophy [SMA]- SMA is the leading genetic killer of infants and toddlers, and is the most prevalent genetic motor neuron disease. The severity of the disease, its relatively high incidence, and the possibility of imminent treatments have led NINDS to initiate the SMA Project. The Committee believes that the treatment of SMA, and the SMA Project at NINDS, is strategically consistent with the mission the NICHD. The Committee strongly urges the NICHD to work closely with NINDS to develop collaborations and programs which will support and expand the SMA Project. The Committee strongly urges NICHD to expand the scope and level of SMA research by aggressively soliciting grant applications on an expedited basis. Lastly, the Committee strongly urges the NICHD to develop formal programs that increase public and professional awareness of SMA. The Committee requests that the NICHD report back to the Committee during the fiscal year 2006 appropriations hearings.

NIH OFFICE OF THE DIRECTOR

Spinal Muscular Atrophy- The Committee strongly urges the OD to ensure the success of the SMA Project by providing active and ongoing support from the OD as well as from other related Institute Directors, most notably NICHD. The OD is urged to take all necessary steps to ensure that the NICHD is fully engaged by expanding their scope and level of resources dedicated to SMA.

December 6, 2004
This Saturday, 12/11/04, marks ten years since my Dad died. Mom is having a mass said in his memory (and in Marshall's - for his 2 year anniversary, which is rapidly approaching) on that day at 4pm at St. Denis in Douglas. Food and gathering to follow at our house afterward! Let us know if you plan on coming - there's room for everyone!

December 5, 2004
December always brings difficult emotions. December of 2002 was a particularly difficult month for the entire SMA community as we said goodbye to SEVEN children with SMA. Seven that we know of - how many other went away without our knowing? At the time, we were so caught up in our own grief, we were unaware of how many people were grieving their lost children right alongside us. December is a difficult month for many reasons: Saria, James, Bradley, Brooke, Marshall, Ronne, and Aiden. One year later, my friend Sandy's little boy Jonathan also joined the ranks of angels because of SMA - the worst kind of monster. I'll be SO happy when SMA is gone forever.

November 29, 2004
Good News on the Research Front - From Families of SMA:

Today, Ohio State University and Columbia University made two major announcements relating to SMA research.

First, as many of you know, patients with SMA usually are missing copies of the SMN1 gene, but have at least one copy of SMN2. SMN1 and SMN2 produce the protein that helps send messages to patient muscles telling them to move. Unfortunately SMN2 does not produce enough of this protein to sustain muscle function.

Research, funded in part by Families of SMA, found two medications that increase production of SMN2 in the lab. This research is the first step in determining whether these medications might show the same results in patients.

Secondly, researchers are reporting that they have created a freely available software tool, SLIMS (Small Laboratory Information Management System), for chemical genetics which facilitates the collection and analysis of large-scale chemical screening data. This software is another system that can help move SMA research forward.

We applaud the researchers on both of these exciting announcements. We currently have scientific abstracts relating to these two announcements on the FSMA web site at www.fsma.org/stockwell2004.shtml as well as
an official press release.

Thanks to all who continue to help the funding of this critical research that moves us forward. Together we will find a cure!

Families of SMA
www.fsma.org

November 29, 2004
Perhaps a bit late to be posting this, but PLEASE come to our Grandstand Sports Memorabilia Auction. It's this Saturday from 12noon - 4pm. There are a lot of really cool things you can place a bid on and many, many prizes from local businesses. Proceeds to benefit wheelsforelijah.org and Marshall's Miles. Cost is $20/adults and includes a buffet dinner. I can email you more info if you would like. Let us know if you are able to make it!

Thanks!

~L, M & M ^i^

November 28, 2004
I have $100 in coupons for U.S. Airways. Anyone traveling for the holidays and want to use them? They're free! They expire on 1/12/05 and I'm far too pregnant to go anywhere now! First person to respond by email can have them!

~Lau

November 24, 2004
The day before Thanksgiving - Despite having SO much to be thankful for today, I still HATE this day. This is the day 2 years ago that I literally handed my baby over to a perfect stranger to surgically place a tube in his belly. The idea was to make him comfortable for the remainder of his time here on earth. I think we succeeded - well, we tried, anyway. I just remember how horrible it was for Marshall being in the hospital, on all of that terrible medication, feeling lousy, and I wanted to fix him SO bad. There wasn't a day in that kid's life that I didn't have those helpless feelings of wanting to fix him. Thankfully, He needs no fixing now.

Sending big, big hugs to our little turkey in heaven!

November 23, 2004

~~~~Victory for us!~~~~

Today, after many months of aggravation with the IRS and the Secretary of State, endless sheets of paperwork, phone calls and faxes, even more endless emails and calls with our good friend, Jim Gaudreau, we are now more than proud to say that Marshall's Miles is FINALLY a 501(c)3 tax exempt organization! I just received our packet in the mail.

Being the dork that I am, I cried when I opened it! Not because I thought I wouldn't get it, or because we are now eligible for bigger and better donations, or because that little tax-exempt status makes much of a difference in what we want to do, but because our organization is FINALLY (and legally!) recognized in our son's very own name. We are now free to accept tax-exempt donations in order to provide assistance and support to those who must face the harsh realities of living with SMA - ALL in the name of MARSHALL. This is a proud moment for me, and I owe it all to my son Marshall. How amazing for me, that my child has inspired such a project (one that I hope will be a great success.) It is my honor to continue Marshall's legacy this way and we only hope to be able to make a difference in the lives of many children.

Thanks for your continued support!

~L, M & M ^i^

November 22, 2004
Today was Cole's funeral. I was sad that I could not be there to support my friends in person. At the hour of his funeral, much of the SMA community lit candles wherever they were in Cole's honor. I was at work. Since I work in a public school, I could not light a candle without an open invitation to the Town of Holliston's Fire Department. So, I had to go without. That is, until, I got an email from Linda Zuroff (of Cole's Quilts - special friend to the Webb's - and moving in on my heart as well!) Anyway, Linda responded to my email with "I'm at work too. But I have 2 candles on my desk. One is from you."

~Thank you Linda.

November 18, 2004
Oh Marshall - this is becoming too much to bear. You please take care of our newest angel - and I will do my part to comfort his mommy and daddy as best as I can. There are no other words for today other than the fact that my heart hurts more than it did even yesterday - I will update again later on. One week = two angels (too many).

November 18, 2004
Okay, I can now elaborate on the earlier entry now that I see it's been posted on the SMA sites.

It is with great sadness and a broken heart that I learned of Cole Webb's returning home early this morning. Cole Daniel Webb - you've earned your wings. You are happy. You are out of discomfort. You can breathe freely. Although we are happy for you, we are now carrying eternal sadness in our hearts - in the place where you used to occupy.

For me, it is always expected that we will lose our Type I kids but it makes it NO easier or less painful when it actually does happen. Cole's death actually came as a surprise to me this morning - Cole was just one of those kids who could always beat off the effects of SMA. He was a fighter. But he fought a losing battle against the worst kind of monster. SMA, I will forever hate you for this. You have taken my only child, and the children of thousands of other parents. This morning you stole my very good friend and have instilled an incurable heartache within the souls of his parents and all who loved him.

I will always hold dear to my heart 2 nights ago when I was talking with Kristin on the phone and I could hear Cole singing away in the background. Music to my ears. I won't forget that, Mr. Cole. I am sure you are singing at this minute too, only this time EVERYONE can hear you!

Kristin had a request for me this morning - she said "You tell your boy to take care of mine." It's done, Kris. I'm sure they're already together - I'm sure of it.

~Godspeed, Baby Cole. You have no idea how much you are missed.

November 18, 2004
I wanted to share this poem written today for Cole Webb:

I've never met the Bongo Boy,
but I've felt him in my heart.
And today that heart is swollen with tears
because he and his parents are now apart.

My words will seem lame and insufficient.
I know this. I truly do.
Words cannot replace or comfort pain -
but right now, I don't know what else to do.

I write. That is my solace.
You all know this about me by now -
that I struggle to try and understand
why the curtain must fall after the final bow.

Why must we lose so many children?
Why are their lives so easily undone?
And why don't others see their importance
and feel the need to run?

Our kids ARE Joy - the purest kind -
and Cole's Spirit has always shone bright.
Sometimes I've been blinded by its strength,
so glaring - there is no Night.

His struggles have been part of our lives -
His accomplishments our Hope and Joy.
We've all really come to know and understand
the True Beauty of this amazing little boy.

We've prayed for Cole when he's been sick -
and we've cheered him when he has won
the many battles which sought to crush him -
but even now, Cole's Spirit is not undone!

SMA can't destroy Cole's Spirit -
it cannot snatch away his Soul.
Cole's physical body may be gone,
but his Spirit has attained its Ultimate Goal!

Our Cole is FREE. He's soaring high -
I'm using imagery I believe to be TRUE.
He no longer needs the physical strength
to do what he's entitled to do:
to breathe, to sing, to play and run
to climb trees with Charlie and Marshall
to catch frogs and bugs and snakes and worms
(critters to which boys are partial)

I'll be honest here as I say
that I can find happiness for Cole that he is free -
but that doesn't numb the hurt I feel,
because his loss is so painful to me.

My soul aches for Cole's Mommy and Daddy -
Kristin and Dan - you're incredible. Yes, you are!
You have made Cole's comfort and happiness your LIFE
and now his presence may seem far -
too far away because there's silence -
only echoes of a life that recently just WAS -
the beeps and blips and puffs of noise
are now replaced by a constant buzz.

I can't imagine - and I sure won't try -
to comprehend YOUR loss as you must feel it.
I can only tell you that I am here -
I love your son and I just want to do justice to it.

I'm just sitting here thinking
of what I can possibly say to you -
to take away your suffering - but there's nothing -
I know it. So, I promise I'll soon be through.

Are there Veggie Tales in Heaven?
It's a question I feel the need to ask.
If not, Our Saviour must act quickly -
for He faces a daunting task!

If there are no Veggies currently there
(and I'm sure that's just for now!)
he'll be greeted by Marshall, the buddy he never met -
to guide him in Heaven - and allow
Cole to receive the peace and happiness
that his physical body deserved.
And in Heaven I know he'll find it,
and to him it will be served -
with the same true love and affection - and devotion -
that was given to him by you -
the parents who fought for his Soul to sing,
and to fly with the angels, too!

~by Kim McAdams
Mommy to Lucas (9), Casey (7) and Skyler (SMA Type I, 3 1/2 years old)

November 16, 2004
There are many tears in my eyes and a severe ache in my heart that are only seen and felt with the loss of another child. I am more than broken hearted to inform you of the passing of Samuel White (Type I SMA) this past weekend. Samuel joins his older brother Aiden (also Type I SMA) in heaven and leaves 2 brothers (Drew and Adam) on this earth. Samuel reminded me so much of Marshall - it must have been "those eyes". And his older brother Aiden shared a birthday with Marshall and died just one week after Marshall. I always felt so connected to this family and I am just heartbroken beyond words for them. I often wonder when this nightmare is going to end . . . because it continues on for me, long after the loss of my own son.

Godspeed, Samuel.

November 15, 2004
More from Lindsey's Mom:

"Before leaving for New York, out of the blue, sweet Lindsey asked about Marshall again. She said that, "I bet Marshall has bubble baths in heaven every day!! With lots of bubbles that never disappear! I bet Marshall has the best tasting birthday cakes in heaven, too. And you know Mom...not only can Marshall walk, run, jump, skip, and climb in heaven...HE FLIES!!! I can't wait to get to heaven Mom! You don't have SMA in heaven."

~HOW does a 6 year old acquire so much wisdom!? She is right - you don't have SMA in heaven! Lindsey, you are one special little girl!

November 14, 2004
~A note from my dear friend, Lisa, whose daughter Lindsey has Type II SMA and has become really really special to us.

"Just yesterday Lindsey was playing with a Ty Angel Bear and said, "Mom...guess what I named this angel bear? I named him Marshall!" She told me she talked to God, Marshall, and all her angel friends yesterday too. I was nervous and I asked, "What did God say, sweetie?" Hoping God was not telling her to come to heaven any time soon - you never know with these little ones, they have a wonderful spiritual connection. She said, "It was a secret. I won't tell."

~Just wanted to share that - I always believe our SMA kids are connected to eachother - you can see it in their eyes. Lindsey never met Marshall, yet he continues to live within her each day. They have a special relationship that really can't be explained.

We love you tons, Lindsey girl!

November 13, 2004
A note from our friend, Jason Amiss, who lost his son Ben to SMA a little over a year ago:

~~~~~~

Family and Friends,

Just a quick note to tell you that my son’s story and a feature on Spinal Muscular Atrophy (SMA) should be appearing on Monday night’s 10:00 PM news on Channel 56 in Boston (you should get this Boston news up through the So. NH area). As of now, that is the schedule for our story as it will appear on the “Healthwatch” segment of the news, hosted by Darcie Fisher.

If it gets pushed by a day or two, I will send an update email. Thanks again to Darcie and Frank Mallicoat of Channel 56 for your support!

Best Regards,

Jason Amiss
President / Ben's Proud Dad
The Benjamin Foundation
"Fighting for a Future and a cure for SMA"

www.thebenjaminfoundation.org

a member of The Spinal Muscular Atrophy Coalition

November 4, 2004
I wanted to put out a public thank you to everyone who makes Cole's Quilts possible. www.our-sma-angels.com/colesquilts. It is my understanding that Marshall's quilt is close to being done. We will be absolutely thrilled to have it by the time his baby arrives! We cannot wait to wrap this baby up in his special quilt! Each square has been thoughtfully and carefully crafted to mean "Marshall". Each one is beautiful and I can only imagine that the whole thing will be even more beautiful once it's put together! Thank you to everyone who made this possible and mostly to Mr. Cole - the inspiration behind the whole project!

October 30, 2004

Well, it's been a while since I've done a journal entry with a lot of feeling. I've been thinking about Marshall now more than ever lately - perhaps it has something to do with our expected addition.

There is so much I wish Marshall could experience with us right now. He deserves to know his sibling. He deserves to know his only cousin, who has had to grow up without him. He deserves to wake up with his Mom and Dad in the big bed and cuddle extra on Saturday and Sunday mornings. But I suppose he also deserved to be free from the constraints of that dreadful illness - something that none of us could grant him. He only could grant that to himself - and he did just that, leaving behind him beautiful memories (and unfortunately, a lot of tears too).

After extensive discussions about grieving, someone asked me recently: "How do you do it? Every day being in pain...time doesn't heal like people say? I know you will always be saddened by losing Marshall, but won't some day you be able to be in less pain than you are today? Doesn't the intensity lessen? I am asking b/c I don't know?" And after I responded, it just felt like I should add those thoughts here, so I will.

My response to that question: "Over time, all of the steps we have gone through have helped us to become who we are today. They all shaped our journey and created our final destination. We have realized that through all of this stuff that we have grown, learned, and even taught a little along the way. Marshall had a purpose and we believe it was to involve us in finding this cure and giving some hope to other SMA families because there was a time when we had NONE! We believe we were chosen to do this.

Over the past 2 years, no doubt we have struggled. But, everything has begun to shape us as real people again - and we were able to see ourselves in another light besides being crazed out grieving zombies. Instead of wanting to die for Marshall, we began LIVING for him through Marshall's Miles. You have no idea the feelings we get knowing we have helped another SMA child by purchasing a necessary piece of equipment for them, or by offering a bit of hope, love and support to another family who is struggling with their own grief. We can give them help and hope. But we couldn't do it on our own. Our angel does that for us! He helped us get here. We couldn't have done it without him.

As for the actual pain - it never goes away. It really never lessens or dulls. On a daily basis, we are painfully reminded of who and what we are missing. It hurts. BUT, we find new ways to deal with it (like the work we do with Marshall's Miles). We find ways to adapt. We learn to embrace the pain instead of wish it away. We know that we have learned from all of this. It has made us who we are and we are proud of who we are. And we know that our boy is ALWAYS with us. That is a tremendous comfort."

But yes, the hurt is ever-present. I am reminded of it each time I gaze into the beautiful eyes of a child who also has SMA. I am reminded of it each time I see a child run, yell, laugh, or even cry out loud. I am reminded of it when I see a young mom and dad with one precious little boy in their arms. I am reminded of it with each glance at a sparkling star in the sky. I am reminded of it each morning that I wake up next to my dog instead of my son. I am reminded of it with every change I bring to the new baby's room (which was supposed to have been Marshall's room). Every t-shirt I fold, every outfit I hang, every time I run the vacuum through his room brings a thought of my boy. Each time I see a picture of another baby, each time I pass through the baby supplies at a store, each time I see a dragonfly or a cardinal, and each time the new baby kicks me in the ribs . . . they all bring a thought of Marshall.

I had been under the misconception that I'd somehow be magically cured by this point - but I'm certainly not. I am officially a grieving mom - for life! But it's who I have become. I wear the label. I wish I could take it off but it's as much a part of me now as my eyes, ears, arms and legs. It's who I have become. And soon enough, I can also be a happy mom with a real living child! But I will also always be the grieving mom. And I accept that. I will never like it - but I have grown accustomed to it.

The support we have had from a few individuals through this has been amazing. The subtle gestures are the ones tha mean the most. Each balloon that gets sent up to Marshall after a family gathering, each decoration left in his garden, each symbolism that rests on his grave, and all of the other little things people have done never go unnoticed. We are touched that so many people still remember Marshall and it helps us deal with the loss of him to know that other people miss him too. We thank you for that.

We miss you so much, MD!

"What the heart has once owned and had, It shall never lose"
~author unknown

October 28, 2004


WOW Red Sox - just WOW!

Jenny's dad said they had help from our angel in the outfield!

I wish Marshall could have seen this.

~L

October 21, 2004
Just want to send out a big fat CONGRATULATIONS to our beloved Red Sox, who clinched the ALCS pennant last night by beating the Yankees (the team we all love to hate!) Good Luck in the Series, Sox!

(*a little help here would be nice, okay Marshall?)

October 13, 2004
My little man Marshall makes me proud. He recently carried someone over the finish line! Visit www.oursmaangels.com/jennifersworld and then click on "read journal" to read the experience Jen's dad had this past weekend. Thanks for sharing that, Jim. It's nice to know Marshall is still hard at work!

October 11, 2004
I am saddened by the loss of Christopher Reeve yesterday. I always admired him. I hope that his family will still consider advocating for stem cell research because I feel that it is important for SO many people out there - those with spinal cord injuries and neuromuscular diseases, to name a few!

Imagine that - my boy met the real Superman!

Hope you like your pumpkin, MD. Thanks for watching out for *our* baby. Missing you, as always.

~M&D

October 10, 2004
I hate October 10.

I hate SMA.

October 9, 2004
I hate October 9.

I hate SMA.

September 26, 2004
Just a note to say that I will have very limited (if any at all) access to my computer/emails/journal updates this whole week. We are having our hardwood floors refinished and have to move to the basement for the week. The computer is staying upstairs and I will only be able to check my email from work and maybe from Mark's computer in the basement on occasion.

September 23, 2004
Today is a hard day. It's baby Allison's funeral. I've never been to so many baby's funerals until I got introduced to SMA. It's just not supposed to be this way. On that note, Happy Birthday in heaven to our precious Lainie Grace, who would have turned 2 years old today. Also, a Happy Birthday in heaven to Gilly Powell, who would have been 3. Birthdays are supposed to be joyful - yet these days bring us so much sadness.

Happy Anniversary to Marshall's Daddy and Mommy. (though it doesn't feel so happy for a few reasons - I'd actually like to skip over the whole day.) But I won't. Instead I'll take the opportunity to thank Marshall's Daddy for putting up with me and standing by my side through what has to be the most difficult thing ever (and the pain will last forever too). He is the most influential person in my life right now and has been my absolute source of strength and support for the past 2 years. He's the only one who misses our boy just like I do. He hurts for our boy - just like I do. He also rejoices in the birth of our new baby - just like I do. Happy Anniversary to you Dad - we love you!

September 21, 2004
I wish to extend condolences to the Bodine/Northway families who lost baby Allison on Sunday. They lived in our area and although I never got to meet Allison, I spent a lot of time chatting with her special auntie. Each time we lose a baby it affects me deeply. The loss of Allison (though a Type I) came as a shock to me and I mourn her loss today along with her family. In case I've never said it, I HATE SMA.

September 21, 2004
There is a walk in Chelmsford on Sunday 9/26. It begins at 10. We are going, of course. If anyone wants to tag along, feel free. Suggested donation for those who aren't collecting pledges is $15. Please come out and walk for this good cause. All proceeds go to FSMA. (www.curesma.com) Perhaps the loss of Allison will motivate you to walk if you weren't motivated before. Please contact me for directions if you need them. See you all on Sunday.

September 17, 2004
HAPPY HAPPY Birthday to Jennifer and Jim Gaudreau! While we aren't sure how old Jim is, we know Jenny is now THREE years old! We hope ALL of your wishes come true and that you both enjoy your day! Have lots of cake and ice cream so that you can add to your BIG pound and a half gain! (That's a message for Jenny, Jim, but you can take advantage of it too if you want to!)

www.oursmaangels.com/jennifersworld to learn more about our friend Jenny. Happy Birthday!

September 3, 2004
Mom is home! She actually came home on Tuesday but I've been so busy I haven't had the chance to update here. She is feeling pretty good (with the aid of pain meds still) and is scheduled to get a real cast on in about a week and a half. She is mobile with her walker and is doing well navigating around the house.

For anyone who is wondering, Draco is not a crazy or malicious dog. This was a big accident! Draco is a sweet (usually lazy!) and compliant dog. He happened to get excited and slammed into mom's leg. Her bones aren't the strongest (beginning stages of osteoporosis) and I believe that's why her leg snapped so easily. I do NOT worry about his behavior with me, the baby, or anyone else. He is well behaved and still by far the best, smartest and most intelligent dog I've ever owned. (Even mom wants to keep him!) Despite being such a great dog, we have to remember that he IS only 8 months old and has the potential to get excited occasionally and act like a lunatic. He was outside at the time the accident happened, just releasing energy the way every young dog does. He was just playing - he truly meant no harm.

August 28, 2004
So apparently while we were enjoying the Kenny Chesney concert last night, my mother was in the hospital with a broken leg courtesy of my dog! Draco had been outside playing with her and just ran right into her legs and knocked them out from under her. She now has a broken tibia and fibula to show for it. She is in surgery as far as I know. I'll go up to see her later this afternoon and will update when I find out more.

I feel badly because he did this to her - but I know he's just a puppy and these things happen. I hope we can teach him to be more in control of his body from now on! If he does this to me, it's not going to be a good thing!

Hope you feel better soon Mom.

August 24, 2004
Just wanted to send our thoughts and prayers to our friends, Andy and Kristen White. Andy and Kristen (who lost Aiden one week after we lost Marshall) just found out that one of their triplets is also affected with Type I SMA. The triplets were conceived via a very expensive round with PGD/IVF and were all supposed to be SMA free. This is very sad news for the White family and I am so shocked and saddened to hear of it. Please keep them in your thoughts.

August 15, 2004
I've been meaning to write for a bit but haven't had the time until now.

Earlier this month, I had a visit from a good friend. Julie (Mom of angel Lainie Border) stayed with me for about 3 days. We had a great time and it was very special for both of us to share our children with one another. There were a lot of beautiful memories and pictures shared that week and I'm honored and thankful that Julie is a part of my life. It's amazing, the bond you can feel with someone, solely because of this terrible, awful disease and the fact that our only babies are now gone from this earth. Few people on this earth truly know what this whole thing has been like for us - unfortunately, Julie knows exactly what it has been like, and fortunately, she has chosen to support me as her friend and for that I am thankful.

On August 7, 2004 we participated in the 1'st Annual SMA candle lighting. This event will now be held on the 2'nd Saturday in August each year at 8:00pm in every time zone. Our evening began with time at the Gaudreau household for a delicious dinner (no kidding, Sue!) and some good conversation with Jim and Sue and we spent a bit of time at a tea party thrown by Michelle and Jennifer (www.oursmaangels.com/jennifersworld). After dinner, we drove up to Haverhill where we met up with many other local families (those who have angels in heaven and also those who have angels on earth!) We got to speak a bit about Marshall and we all lit our candles. It was a beautiful and moving tribute to all of the SMA angels. It is always good to get together with our extended SMA family.

August 13 was our golf tournament. I want to thank our loyal fundraising committee members (even though we only have a few!) I could not have done this event without all of you and we are so appreciative that you chose to help us out another year! Our event was not nearly as successful as last year but I think in spite of the lack of help and interest, we did okay. We raised about $7,000. Some of that will be spent to finish gaining our tax exempt status (the IRS needs their share, apparently!) And then we will begin to search out local families who may need assistance in purchasing equipment or any other needed item for their SMA child. We hope to be able to make some sort of a difference in someone's life. We have already begun the process of thinking about next year's event, which will absolutely NOT be a golf event. (We are not knowlegable enough about golf to continue to put on a tournament without the assistance we had last year). Next year, we plan to host a motorcycle ride. We have already had offers for donated location and food but we aren't sure if it will be a large enough location. We will continue to throw the ideas around for that and will keep you updated. We are honored to continue to put on events in Marshall's memory, with the hope that some day we will see great rewards for our efforts. We want that cure even more than we wanted it before SMA stole our baby. We now know the importance of getting it as SOON as possible.

Tomorrow will be August 16, 2004; my baby's 2'nd birthday. I miss him every bit as much as the day he left us (sometimes I think more and more with each passing day). Today we planted 2 new perennials in Marshall's garden, which we will do every single year for his birthday. I enjoy Marshall's garden. It's beautiful and peaceful and I'm so glad I have it. But, at the same time, I wish we never had a garden. I wish the yard still looked ugly. I wish it was obvious that neither Mark nor I had time to weed and rake and plant. I wish the ground was littered with sand toys, bits of jumbo chalk, big playground balls, popsicle sticks, sippy cups, and tricycles. I wish there were pebbles, twigs, and leaves in the basin of my washing machine from Marshall's pockets. I wish my dog had his little boy to play with out in the yard. I wish the dandelions had the chance to re-seed and grow all over the yard because when they were in their fluffy stage maybe the would have been blown away by a little mouth. Instead, they just die down and wilt to the ground. I wish there were little boy footprints in the sand of my horse paddocks, instead of big horse hoof prints.

I wish there were sticky fingers to wash and a milk moustache to wipe away. I wish Mark had a little pal to take with him to Home Depot to buy wood and supplies for his never-ending projects. I wish the toys in Marshall's room showed signs of wear and breakage, instead of remaining brand new and untouched in their original boxes. I wish his car seat had stains all over it (like most car seats do). I wish there was a rubber duck in my tub and a bottle of tearless shampoo beside it - ones that didn't belong to Allaina.

I wish we were going to be watching Marshall eat messy cake tomorrow and open up his presents. Instead we will clean off his messy grave stone tomorrow and open up our hearts to more sorrow because they have barely survived yet another year without him. It's cruel and unfair and we feel greedy for wanting more time with him and for wanting his body to be free of SMA. Still, I wonder . . . HOW did this happen to us?!



"If I could have a lifetime wish, a dream that would come true, I'd pray to God with all my heart for yesterday and you.

A thousand words can't bring you back; I know because I've tried. Neither will a thousand tears; I know because I've cried.

You left behind my broken heart and happy memories too.
I never wanted memories, I only wanted you."

~author unknown

Happy Birthday, Lil' Boy. We miss you.

July 31, 2004
I came across this today. It's written by Mattie Stepanik, who died earlier this year of Muscular Dystrophy. It really made me think of Marshall and all of our special SMA Angels.


I COULD...
IF THEY WOULD

If they would find a cure when I'm a kid...
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.

If they would find a cure when I am a teenager...
I could earn my license and drive a car, and
I could dance every dance at my senior prom.

If they would find a cure when I'm a young adult...
I could travel around the world and teach peace, and
I could marry and have children of my own.

If they would find a cure when I'm grown old...
I could visit exotic places and appreciate culture, and
I could proudly share pictures of my grandchildren.

If they could find a cure when I'm alive...
I could live every day without pain and machines, and
I could celebrate the biggest thank you of life ever.

If they would find a cure when I'm buried into Heaven,
I could still celebrate with my brothers and sister there, and I could still be happy knowing that I was part of the effort.

~ Mattie Stepanik (1990-2004)

July 28, 2004
*********Red Sox, Anyone?!*************

We are now selling raffle tickets at $2/each for 2 seats for a Red Sox game vs. the Tampa Bay Devil Rays. The game is for 9/16. The seats are GREAT ones and the game starts at 7:05pm. I believe this is a Thursday evening. We will do the drawing at the event after the golf tournament and will sell tickets from today through August 13. Any interested parties can email us (info@marshallpotter.com) for details on how to purchase tickets. Checks may be made out to "Marshall's Miles". Good Luck!

July 19, 2004
********Attention Golfers**********

There is still plenty of room in our tournament. It's actually frightening how much room there still is! If you were planning on golfing, PLEASE send in your registration soon, so that we may begin to organize teams and plan the rest of the day.

Also, while we prefer that you send your registrations in groups of 4 golfers, we do have a few singletons who will need teammates, so if you can only send in a golfer or 2, rest assured, we will create a team for you!

Thanks and we'll see you soon!

L, M, & M

July 14, 2004
My doctor called today and *big surprise* my test for pertussis came back positive. I knew it would. This means that if you were near me in June or July, just watch yourself. If you feel a cold coming on or begin coughing, tell your doc you were exposed to pertussis and you need to begin Zithromax immediately. I actually read an article in the paper that said that pertussis is running rampant around this country in adults and teens because the vaccine is wearing out by the time kids go to middle school. They are thinking of making a version of the vaccine for adults - I know I'll be first in line for that one! Coughing for 6 weeks is NO fun - especially coughing so severely that you puke . . . I'll pass next time, thanks!

July 9, 2004
I know some people have been waiting for a baby update on this journal - but it's not going to happen. This is Marshall's site, Marshall's journal. We will soon be adding a separate link so you can catch up on baby news too because we're very excited about the baby but I will not have any baby taking over Marshall's site - not even my own baby! Look for the new link off the main page soon - it will say something to the effect of: Click here to learn about Marshall's new sibling! I'll let you know when it's all set.

**********IMPORTANT ANNOUNCEMENT*****************

I have been exposed to pertussis (whooping cough). While I do not have any formal diagnosis, I HAVE been couging for 4 weeks now. I am 99% sure that I have it. This means that I was contagious 2 weeks before I started coughing and for 3 weeks after. (I began coughing the week of June 14.) I am currently waiting on bloodwork to confirm the diagnosis but it can take a while to come back. SO, if you feel like you are getting sick, GO TO YOUR DOCTOR and tell them you were more than likely exposed to pertussis. The recommended treatment is a course of antibiotics (Zithromax is a good one). They actually treat people who have been exposed, not just those who actually have it. So, please do yourselves a favor and if you begin coughing, take this information to your doctor. This is especially important for the elderly and children under 12 months of age.

Here is some info on the illness:

Pertussis, also known as whooping cough, is an infection of the respiratory system caused by the bacterium Bordetella pertussis (or B. pertussis). It's characterized by severe coughing spells that end in a "whooping" sound when the person breathes in. Before a vaccine was available, pertussis killed 5,000 to 10,000 people in the United States each year. Now, the pertussis vaccine has reduced the annual number of deaths to less than 30.

Although pertussis can occur at any age, it's most severe in unimmunized children and in infants under 1 year of age (early immunization can usually prevent this serious disease in babies). About 40% of all pertussis infections occur in children less than 1 year old, and only 15% occur in children over 15 years old. Half of all deaths from pertussis occur in infants under age 1, and serious complications are more common in this group.

The incidence of pertussis among adolescents and adults has been increasing in the last several years. This is an important fact, because coughing adolescents and adults who may not realize that they have pertussis are currently the major source of infection for infants and children.

Signs and Symptoms
The first symptoms of pertussis are similar to those of a common cold:

*runny nose
*sneezing
*mild cough
*low-grade fever

After about 1 to 2 weeks, the dry, irritating cough evolves into coughing spells. During a coughing spell, which can last for more than a minute, the child may turn red or purple. At the end of a spell, the child may make a characteristic whooping sound when breathing in or may vomit. Between spells, the child usually feels well.

Although it's likely that infants and younger children who become infected with B. pertussis will develop the characteristic coughing episodes with their accompanying whoop, not everyone will. However, sometimes infants don't cough or whoop as older children do. They may look as if they're gasping for air with a reddened face and may actually stop breathing for a few seconds during particularly bad spells.

Adults and adolescents with pertussis may have milder or atypical symptoms, such as a prolonged cough without the coughing spells or the whoop.

Pertussis is highly contagious. The bacteria spread from person to person through tiny drops of fluid from an infected person's nose or mouth. These may become airborne when the person sneezes, coughs, or laughs. Other people then can become infected by inhaling the drops or getting the drops on their hands and then touching their mouths or noses. Infected people are most contagious during the earliest stages of the illness up to about 2 weeks after the cough begins. Antibiotics shorten the period of contagiousness to 5 days following the start of antibiotic treatment.

Pertussis can cause prolonged symptoms. The child usually has 1 to 2 weeks of common cold symptoms first. This is followed by approximately 2 to 4 weeks of severe coughing, though the coughing spells can sometimes last even longer. The last stage consists of another several weeks of recovery with gradual resolution of symptoms. In some children, the recovery period may last for months.

**** Me again *****
I just wanted to add that the severe coughing has been causing me to throw up at least once a day. This is not pregnancy related. It just happens from the severe coughing spells. The mucous is thick and causes gagging, which in turn makes me puke. So this is another good clue that you may also have contracted it.

The good news is that this pertussis will not harm the baby while it is inside me!

That's it for now.

~Lau

June 22, 2004
Eighteen months ago today, our boy breathed his last breath here on earth. We still miss him with all that we are.

Today, his doggie also decided that his time here was up on earth. Cobby was 15 years old and did something to clearly tell us that he was all done here on earth. Of all days, he also picked the 22'nd of the month.

The pain of losing a dog is really nothing compared to losing a child. I did hate to lose this dog though. He was born in my living room when I was just 12 years old. I've known him since he was just hours old. If it weren't for my dad (who has been gone almost TEN years now) we wouldn't have the privilege of keeping Cobby. Dad was the one who said I could keep him.

He was a good dog. If you watch our picture slide show, that's Cobby, lying underneath our precious Marshall. That dog did whatever we asked of him and he will be sorely missed. I try to take comfort in knowing that Cobby - once again, cuddles with Marshall tonite. I'm actually jealous of that damn dog.

Rest in Peace, my boys.

June 15, 2004
We just wanted to thank our friends at WKLB (99.5 FM) for the autographed merchandise for our fundraiser! They were very generous with us last year and we are thrilled with their donations this year too! Thanks KLB!

June 13, 2004
It's been a while since I've done an update. Don't assume we think about Marshall any less. He is NEVER far from our thoughts or our hearts, of course.

Mark and I have been extremely busy with work and trying to get this second golf tournament off the ground. I'm swamped all the time with work for the tournament and getting up at 5am for work is just killing me. I usually nap every day after work (if there is time). Draco (our pup) is getting bigger every day and now tops 50+ pounds. He's a real sweetie and we enjoy him a lot - but he is still quite a bit of work!

We are looking forward to seeing some of our friends (old and new) at the SMA conference in Chicago next weekend. We know this will be an emotionally draining weekend but we came back feeling so fulfilled last year.

I've been talking with a young woman whose 6 month old niece has Type I SMA. They live about an hour from me. They're really struggling with this diagnosis (like we all do!) and I really feel for them. I am hoping to meet the precious little girl soon. Every time I look at her pictures I want to scream "WHY"?! She is just so beautiful and I can't fathom why more and more children have to struggle with SMA and fight for their lives. It's not fair and is growing VERY OLD in my eyes. Because Marshall dying wasn't enough, right? We need to lose more kids to this horrific nightmare?! I SO wish we could catch a break SOON. SMA has to be stopped NOW.

That said, we want to give a little information on Marshall's second golf tournament. It's going to be a bit different from last year. (Different location, different organization will be benefitting, etc.)

Friday, August 13, 2004 (Might I add that this happens to be Cole Webb's SECOND birthday! www.our-sma-angels.com/colesquilts) Registration begins at noon time at 801 Chockalog Road in Uxbridge, MA at Blissful Meadows Golf Course. The tournament will be followed by a social gathering in the evening upstairs in the Chestnut room(around 7 or 8pm until midnight). This event is open to the public. Golfers get in free. Admission for everyone else is $15/each with children under 12 free. The evening will include entertainment, some food, raffles, prizes, games, and a cash bar. Last year, the 2 events raised more than $30,000 for Families of SMA (www.curesma.com). This year, we have been working on gaining tax exempt status on what we call "Marshall's Miles". Having our own organization will allow us to distribute funds and equipment to individuals and families, rather than large organizations. We still believe in finding a cure though so some of our funds will continue to benefit research projects. Mostly though, we want to focus on helping more local families this year.

If you have any questions, please email us!

Thanks.

L, M, & M ^i^

May 8, 2004
Attention all interested SMA Walkers:

Please join us in Hingham, MA on May 15 at 10:00am for a walk to benefit Families of SMA (www.curesma.com). If you do not wish to collect pledges, the suggested donation is $15/walker.

Directions: Wompatuck State Park in Hingham, MA. Route 3N to exit 14/Rt 228N. Cross straight through the Rt. 53 intersection and continue for 3 miles. Turn right at sign for Wompatuck State Park onto Free Street. Entrance to the park is .8 mile on right at Union Street. We will meet in the parking lot 2 miles inside the park on the left. The route is an easy 1.5 paved miles. Dogs, strollers, wheelchairs all welcome. (Draco will be coming, of course!)

Looking forward to seeing you there!

April 18, 2004
I want to apologize to those who are always patiently waiting emails from me. I'm off to meet Allaina tomorrow and will write when I return!

CP, I'm mailing your t-shirts tomorrow! LH, your pouches are also on their way!

I'll deal with everything else when I return! Have a good HOT week everyone!

March 31, 2004
Also welcome to Samuel, Adam, and Drew White - the triplet sons of my friend Kristen and her husband Andy - and brothers to special SMA angel Aiden White (who shared Marshall's birthday). The trips were born on Monday. Holy Babies everywhere!

March 30, 2004
Just wanted to welcome my first and only niece into the world. Allaina Grace Daniel arrived (though reluctantly!) early this morning via c-section. I'm glad she's here and that she is free of SMA so that her parents will never have to live out the nightmare we know too well. I just wish she could have known Marshall. I'm going to visit her on the 19'th, and I just wish SO much that I was bringing Marshall with me - that he could meet her too. Stupid SMA stole Allaina's cousin from her - yuck yuck yuck (as my friend Julie always says when talking about SMA!) I miss you "Marshall D."

Allaina is named after my mom's side of the family. Their last name is "Allain". I think her name is beautiful. Welcome Allaina

March 26, 2004
Just wanted to say Thank You to my dear friend Gina Fimbel and her husband John, and their SMA Angel Andrew. Gina has worked tirelessly to get the Dixie Chicks to recognize SMA and what it does. She recently met with them and shared a good bit about Andrew, and brought with her a book of stories and pictures of other SMA Angels. The Chicks were touched by our special kids and decided to help us spread awareness (and hopefully some funds!) They have been incredibly generous thus far, donating $1,000 and a special ceramic bowl to Andrew's Toybox. (There is a link for the toybox under SMA Info on this site.) They are helping to bring awareness to Families of SMA. Hopefully we are getting that much closer to our cure! See the links below to learn more about the Chicks and FSMA.

http://www.countryweekly.com/stories/scene.cfm?instanceid=61309

http://dixiechicks.launch.yahoo.com/news.asp?id=82

Thank you Gina, John, and Baby Andrew (for without you, none of this would have been possible.) We love you all!

March 16, 2004
Sorry for the lack of entries (I know my stalkers have been disappointed in me!) I've been really busy with the new job, trying to figure out my paperwork for the 501(c)3 stuff for Marshall's Miles (JG - I'm so confused!) And of course our new yellow fluffball keeps us busy too!

Just a few things here: For anyone interested in the walk on 4-4-4, please visit www.connorsfunrun.com We are walking/running in honor of Connor Reilly of Norfolk, MA, and always in memory of Marshall and all of the other children with SMA. The website above gives a good idea of what the day will bring. So far Mark and I and our parents are going, along with my friends Amy and Stacey. Anyone else want to join us? If you don't want to collect pledges, the suggested amount to participate is $15/person and if you would like a 4-4-4 t-shirt, those are $10. Auntie Barb, are you walking with us? Pat? Tante Mar & Nicole - have you figured out the dance schedule yet? We'd love to have all of you if you will be able to make it. We hope the weather will cooperate also.

I just wanted to share a little bit of what I felt was a beautiful and magical experience last week. (This is a big deal for me to feel that anything could be beautiful or magical - because since losing Marshall, I've really lost any type of feeling for almost anything). Anyway, last Thursday night, I went to my Compassionate Friends meeting. For anyone who doesn't know, this is a group of bereaved parents who meet once per month. It has been really helpful for me to be around those who really know and understand what losing Marshall has been like. Anyway, I brought Draco to the meeting and left him in the Jeep. I tend to take him everywhere I go and since the meeting is held in the church, I let him sleep in the car during the meeting. At the end of the meeting, I took him inside the church per another TCF member's request (Hopefully God wasn't mad at me!) and let him run around a bit and lick the people at the meeting. He was so excited (he loves people!) I knew I was smiling because I love this little dog to pieces and he always makes me smile - but as I looked around the room, I saw that the eyes of those who had been crying were now dry. Smiles spread from ear to ear on every single person in that room. I felt good inside - knowing that even for a second, my special little friend could bring a smile to so many people who hold so much hurt inside their hearts. He is more than just a dog - he is a friend and a healer. There is something to be said for pet therapy. Draco is a perfect example. I always knew he would save me!

March 3, 2004
It's been a while since I've visited Marshall's grave. I guess with the cold weather and ice everywhere it made it difficult for me to get up there. I was happy to see that his candle was still lit and so was his angel light. (Thanks Grandpa) He also had 2 things there for Valentine's Day that I hadn't yet seen. I want to thank the gift-givers . . . you know who you are! I will share what was there as I found the things to be really special. One was a Pez dispenser (these were always given to us from our parents growing up - especially around holidays). There was also a Valentine's day card from Marshall's best pal. It was a picture of Ernie and Bert and said "This Valentine brought to you by the letter 'F'." and on the back it said "Forever Friends" with a scribbled signature and an Elmo sticker. I'll be the manufacturer of the cards didn't know just how special those 2 words would be. (Thanks G!)

There was also a card and a bear from someone else. The bear was part of a friendship bear (I guess there are 2 tied together by a string and the string can be cut). One bear remains with the special gift giver and one of them was for Marshall. I found all of these things to be quite touching and it's so comforting to know that other people think about Marshall too.

I also got a little angry when I was there. Seeing those gifts made me angry. We should have been able to give them to Marshall instead of leaving them on the cold wet ground for him, next to his grave marker. Marshall should be with us - not in a box buried beneath several feet of dirt and rocks. It still feels so wrong to me that this ever happened to him (and to us).

Yesterday I was on my way home and I saw a dad walking with a little girl on the side walk. She looked about a year and a half old. She was running and bouncy and really enjoying the warm weather. As I drove past, I realized her dad was someone I went to high school with. Then my heart sank and the tears came. I remembered that on October 5 of 2002 was the "Octoberfest" in Douglas. I was there with Marshall. I remembered seeing this dad and his little girl there too. The 2 babies were born in the same month and were both in their strollers. I remembered seeing the little girl baby moving all over the place and wondering what could be wrong with Marshall - that he was so still. The babies were less than 2 months old at the time. Marshall received his diagnosis just a mere 5 days later. To see this little girl running down the sidewalk was like a spear in my heart. It was then when I realized that if Marshall was here (if SMA hadn't ravaged his little body), he would be running around enjoying the day too. It's so hard to even imagine him doing anything like that. To me, he will forever be my still infant baby boy. I can't picture him as anything else. I feel cheated that I didn't get the opportunity to watch him grow up and do something as simple as run down a sidewalk next to his Dad.

Marshall is still on my mind constantly. 14 months sure hasn't changed that. He is forever loved and missed by all (and to some, he's even a forever friend too).

March 2, 2004
I've written in the past about 4-4-4 for a cure. We now have t-shirts designed for the event (and for any time you want to wear it!) MarshallPotter.com logo is on the shirt, as well as several other non-profit organizations all committed to fighting SMA. I will be selling the shirts for $10. I need to order them in advance so please get back to me if you would like one (let me know the size also). The shirts were designed by Michelle - aunt to Madison www.miracleformadison.org The profits from the shirts will be deposited into our own tax exempt account used to fight SMA (Marshall's Miles). So please get back to me as soon as possible on whether or not you would like a shirt and what size. (Lots of people will be wearing them on 4-4-4 . . . you should be too!)

March 2, 2004
I forgot - you can see pictures of the t-shirts on www.smasupport.com and in the lower left column, click on 4-4-4 for a cure (or something to that effect.)

February 24, 2004
~~~~~~~~~~~~FUNDRAISER UPDATE~~~~~~~~~~~~~~~~

The second annual golf tournament and celebration of life in memory of Marshall Potter will be held on Friday August 13, 2004 at Blissful Meadows Golf Course in Uxbridge, MA. The day will begin with golf tournament registration at noon, tee time at 1pm. After dinner, golfers will be encouraged to stay for the Celebration of Life party afterward, which will be held from 8pm - midnight.

There are a few changes from last year. We are having both events on the same day. The events will be held in Uxbridge (5 minutes from my house) instead of Leicester. The ideas will be the same . . . entertainment, food, raffles, auctions, etc. All proceeds will now benefit Marshall's Miles (our new 501c3 tax exempt organization dedicated to funding Spinal Muscular Atrophy research and providing assistance to its victims and their families.)

I want to welcome all of my out of state friends (SMA or otherwise). We have plenty of room here at the house for you to stay here. Please think about coming!

~Let the prize hunting begin!

L, M & M ^i^

February 18, 2004
I received the following link from another SMA parent. This story is a sad one - about a little girl named Annabelle who has the potential to have a lifesaving procedure done that is costing her family $600,000. Without it, she will eventually die. Visit www.saveannabelle.org to learn her story. She does not have SMA but another disorder without a cure. We hope they will raise enough money to save her!

February 15, 2004
Hi Everyone,

Draco is home and doing well! He's just what I needed - he warms my heart!

Thanks to Chris and Sarah, we now have pictures of him so if you didn't get any yet and would like some, just say the word and I can email them over.

~L, M & M ^i^

February 14, 2004
Happy Valentine's Day to the love of my life - my husband Mark - and especially to my little boy, Marshall. YOU are the first thing I think of when I hear the word "LOVE". That's what you were, what you are, and all we ever wanted you to know. I hope you have fun playing with Alec's balloons today!

Thanks to everyone who looked for their dog crates - we did obtain one so you can all stop looking for yours. We pick up our little dragon today! I can't wait to get him home.

I know Marshall would have loved having his own doggie. Damn that SMA.

February 13, 2004
"I miss you a little since you've been gone . . .
A few little memories keep hangin' on.
I miss you a little, I guess you could say.
A little too much; a little too often
A little more every day." ~John Michael Montgomery

February 9, 2004
Does anyone in our area have a dog crate that they would be willing to let us use for a few weeks, just until we get our new puppy housebroken? If so, let me know! I'd need it by this weekend - we are picking up Draco on Saturday! We got to meet him today and he's just a little love. He's a 7 week old golden retriever. We are naming him Draco after the constellation where Marshall's star is located. (Monica, Tim & Gage bought the star for Marshall right before he died.) Draco means "dragon". We find this so very interesting because anyone who knows us knows all about the "dragon" flies! We thought Draco to be a perfectly appropriate name. We can't wait to take him home.

Hopefully someone has a crate for us, otherwise we may have to buy one! Please let us know if you'd be willing to lend us yours! Thanks.

L, M & M

February 8, 2004
Just wanted to let you know that it's time to start thinking about our annual fundraiser again. We hope we will see a high level of involvement and participation - just like we did last year. There are several changes that will take place this year. This may or may not influence your decision to help out.

*The golf tournament and fundraiser party will be on the same day. We are trying to get a morning g.t. and have the party somewhere else in the evening (like an Elk's club or the Sportsmen's club) so that we can get the food donated; therefore lowering our expenses and gaining more money to donate in return. We still do not know what day but it will be later on - either August or September. This allows us to have more time for planning and acquiring prizes. August seems perfect to me because it is the month that Marshall was born and it is also National SMA Awareness Month. Hopefully we will have a definitive date set this coming week.

*The events will most likely take place on a Friday. I am aware that this is a week day - however, many, many places have week-day golf tournaments and it still generates a lot of players. I don't anticipate that we will fill all of the slots again but we will have to see. Expenses are less on the weekdays and this is the only day that will enable us to have it the same day as the fundraiser party.

*Mark and I are in the process of getting 501(c)3 tax exempt status on our own organization called "Marshall's Miles - Making strides against SMA." This will enable us to not have to pay taxes on interest gained. It also enables us to donate the money as we see fit.

*We anticipate having an easier (and more organized time) with both events this year. We gained plenty of experience last year! We still anticipate this to be a fun and self-fulfilling event and we hope you will join us! If you are interested in participating again, please let us know as soon as possible! Thanks!

L, M & M

February 6, 2004
"There have been times when I thought that I would not make it one more minute let alone to tomorrow. I think that there are times in all of our lives that we feel that the storm is too big; that we will break beneath the load we are carrying. It is at these times that we must reach deep inside to find that tiny glimmer of light that promises to get us to tomorrow. Even the storm that threatens to destroy everything in its path must break; and in its place is a rainbow of such beauty that it takes our breath away. We must ride out this storm, for just beyond its reach, a rainbow awaits us."

~written by my friend, Mindy McNabb, in memory of her son Carter Brooks McNabb. www.carterbrooksmcnabb.com

Thank you Mindy for keeping the faith - perhaps I could learn something from you! And it wouldn't be the first time either!

January 26, 2004
This is a note I dread writing; however, I feel that I need to do it to save myself. I do not want people asking us questions - it was traumatic enough the last time. So please, just read what is written here and try to digest it - just PLEASE don't ask us about it - we're all done talking. We're too heartbroken to offer anything else. We don't understand it and we can't possibly explain it to you when we don't get it either.

Mark and I found out today that we have again failed at an attempt to have another child. This is our fourth HUGE loss in 13 months, 4 days. This time was a PGD/IVF attempt. All looked quite well throughout the procedure but for whatever reason, the cycle failed. We are now out of $22,000 (our life savings) and are still no closer to having a child than we were the day Marshall died. We have no money to be trying this again. We're done. We have spent every cent we've had on this procedure and had high hopes that it would work - but we're getting quite accustomed to this feeling of failure. Obviously losing Marshall was our biggest loss. But every time we have hope, it always seems to come crashing down on us. This is yet another loss. We can't keep putting outselves through the pain over and over again. It's just too hard. I never did think I could fail at something so natural - something I've wanted since I was not quite 3 years old. We are at a complete loss as to where to go from here.

All we can ask for is your understanding from this point forward. Please realize it is STILL hard for us to be around infants and children. Believe it or not, we still miss Marshall and we will every single day for the rest of our lives. Please don't feel as though our grieving or lack of enthusiasm about other babies is "abnormal". We are not only grieving the loss of Marshall - we are grieving our miscarriage, our 1'st IVF cycle, and also our second. We grieve for all of the children whom we will never have. The past 13 months, 4 days have been nothing but difficult and sad for us and while we have certainly grown during that time period, every setback has been a major one. We hope you will recognize this and be supportive to us as that is all we can ask for at this point. We don't wish for a pity party because there is always someone who has it worse than we do and we recognize that. We are doing the best we can to move on in a world that has yet to be merciful to us (in respect to parenting). We ask that you give us space - but also the hope, faith, love and understanding that we so desperately need right now.

Thanks.

~Laurie & Mark
and Angel Marshall^i^

January 23, 2004
Time is a bizarre concept. On one hand, it feels as though Marshall's been gone for forever. I've forgotten way too many of the little things. We've missed him for a long time. It feels like it's been years since we last held him and felt his labored breath on our faces. It's only been 1 year, 1 month, and 1 day.

On the other hand, it feels like yesterday that my friend Kathy was supporting me through our loss - and at the same time, mourning a year's passing since her own loss of Charlie J. (Happy 2'nd Angel Day, Charlie J.!)

So, how can it be that when looked at from my own perspective relating to Marshall, time has DRAGGED on . . .but when I look at it from a perspective relating to Charlie and my dear friend Kathy, it feels like it has whipped by.

Strange thing - that time!

*Kathy & Jeff & Abby & Maggie, we'll be thinking of you tomorrow on Charlie's 2'nd angel day. We love you all and while we mourn your loss with you, we are eternally grateful for your support and friendship and for all you have helped us and inspired us to do. Because you have been there - because you understand - because you share our feelings too, it helps us SO much to have you in our lives! You have made us feel not so alone in this ever-painful journey. We love you tons! (Infinity, I think!)

January 19, 2004
I heard something today that has no relevance in my life right now, but I thought it was adorable - and true too!

"Why do blessings wear disguises? If I were a blessing, I would run around naked!"

~ Estelle Getty (Sophia from Golden Girls)

January 17, 2004
Because I did not know of the family a month ago, I just wanted to post this here now. One month and one day ago, another life was lost to Type I SMA. Jonathan T. joined Marshall and ALL of the other angels on 12/16. He also was an only child and is missed sorely! Our thoughts are always with his mom & dad and we know he's got a pal in heaven! (too many pals in heaven!)

January 17, 2004
Brian Martel, you sick, sick bastard. How anyone can stab his own son(s) to death is beyond my level of thinking. May you always rot in hell.

*Just so everyone knows, my anger here comes from a news story that took place about an hour from here (I did not know the sicko). This may not be the most appropriate place to post my feelings today but I will never understand why those of us who want children more than anything in the world cannot have them - and those who will think nothing of stabbing them to death are able to even have children. Sick Sick Sick.

~End of my gripe session.

January 15, 2004
Our condolences to the family of Abbie Pennington, who lost her battle to Type I SMA today.

January 14, 2004
I read in the paper that my grandmother's sister died on Thursday. Of my grandmother's sisters, Aunt Beatrice was always my favorite one as a child. She always arrived with pops for us and was never boring like the others were! Her picture in the paper is adorable this morning - just as I remember her!

At 91, she lived a long and prosperous life. I shall never understand why some seem to live forever; but others never really get a shot at life from the beginning! I don't hold anything against Great Aunt Beatrice. I am glad she got to enjoy so many good years. We should all be so lucky!

I hope she brought a pop to Marshall when she arrived. And I know he'll never think she is boring!

You know what I'm thinking, Pal. The sun is coming up - but I'm looking for my raincloud! I'm not worried - she said it would be here and I believe her! With the frigid temps outside though - could it possibly be a snow cloud instead? I'll keep my eyes open and you do the same. Love you from this hand all the way around the world back to the other hand! Help remind me of the care and devotion to spreading human love and well being!

January 8, 2004
I wanted to share something . . . Due to the trip that we took and other circumstances, it had been a couple of weeks since I had been to Marshall's grave. Each time I would go through town, I would think to myself that I had to go and remove all of his Christmas decorations because I never wanted his burial site to be one of those that looked neglected - by this, I mean Christmas decorations still up in June, etc. So, finally yesterday, I had a bit of time to go spend with my son. When I arrived at his spot, I could see that someone left him a teddy bear type snowman thing. This is not unusual, as my best friend and my sister in law and a few others often leave things for Marshall. Thinking this was something else from them, I picked it up to see what it was. It was wrapped in clear cellophane so I could see that it was a snowman and on it's foot was an embroidered 2002. I was wondering where on earth someone picked up a 2002 stuffed animal - but I figured it was clever because that was Marshall's year. Since cellophane isn't waterproof, the bear had gotten soaked in recent rains and was now all iced up due to the plummeting temperatures. I brought it home and unwrapped it and inside was a letter that made me cry. This is what it read:

To: Marshall "D" ~ Christmas 2003

As I was on my way to deliver this gift to you this time last year; I learned the devastating news that you were no longer here. I stood in my tracks and cried in place, as I thought of you now in God's grace.

My heart went tight and my legs went numb; to learn that God had taken you so young.

Christmas was different in our house last year; It was not the usual Yuletide cheer. Christmas was filled with thoughts of you and your family. As we sat around our Christmas tree, my heart was sad for your Mom and Dad and my eyes wept for you.

I've never known someone for such a short time; And it hurt as if you were one of mine.

This Christmas we deliver this snowman on your one year anniversary. He comes with hugs and much love in your memory.

Merry Christmas, Marshall "D".

Love,

The Cyr's

Lori, David, Makenzie & Joshua

Me again . . . I had taken care of Josh at my home daycare for a brief time before Marshall got sick. I have known his mom for years simply as an acquaintence. It's been about a year since I've seen or spoken to any of them (although I often think of them when I pass their house). I was so taken that Marshall STILL has this type of effect on people. I was touched that MY SON has touched so many others.

In the words of Stacy Haq (mommy to Angel Mia) " . . . even complete strangers feel him and their lives are touched. OUR angels do that!" Not that the Cyr's are complete strangers by any means, but it never fails to amaze me just how many complete strangers DO contact us and tell us how Marshall has touched their lives. Yes, MY angel does that!

So, for the Cyr's and so many others, THANK YOU from the bottom of our hearts - not only for allowing Marshall to touch your lives this way, but for allowing us to know it. It means the absolute world to us to know that Marshall has not been (and will not) be forgotten!

Draco DOES in fact have the best star!

January 2, 2004
For anyone who had been following Elijah's story: They have raised over $9,000 toward their van. Please continue to save cans/bottles for me and I will be sure to redeem them and send them the money. There is a link to Elijah's site if you scroll down in this journal. Thanks!

~L

January 1, 2004
Our thoughts and prayers are with Cole Webb and his family today, as he is struggling a lot. I pray for strength and comfort for his parents and all who love him. For Cole, I only wish you comfort, happiness and love, love, love!

"Some people come into our lives and quickly go.
Some people move our souls to dance. They awaken us to new understanding with the passing whisper of their wisdom.
Some people make the sky more beautiful to gaze upon. They stay in our lives for awhile, leave footprints on our hearts; And, we are never, ever the same."

I have to say that Cole (along with Marshall and so many of our special angels) has moved my soul to dance. Our angels have most definitely made the sky more beautiful to gaze upon. And Cole, you will always, always, have footprints on my heart, no matter where you may be. I shall never be the same for knowing you, Pal. Thank you for touching my life.

~Marshall, thanks for the message and the flicker, my buddy! You know just who to work through!

December 30, 2003
Today makes 2 years since my friend Stacy (and her husband Kirk and their daughter, April) last held Precious Alec in their arms. Our thoughts are with them today.

December 29, 2003
Our thoughts are with the families of Aiden White and Maryclaire Walsh - 2 children who were lost to Type I SMA one year ago today. Aiden shares Marshall's birthday and Maryclaire shares Aiden's angel day. We all feel connected through our special angels.

Even though this was written even before I was born, I really like it and that is why I decided to post it here today.

We Remember Them

In the rising of the sun and its going down,
we remember them.

In the blowing of the wind and in the chill of winter,
we remember them.

In the opening of the buds and in the rebirth of Spring, we remember them.

In the blueness of the sky and in the warmth of summer,
we remember them.

In the rustling of the leaves and in the beauty of autumn, we remember them.

In the beginning of the year and when it ends,
we remember them.

When we are weary and in need of strength,
we remember them.

When we are lost and sick at heart,
we remember them.

When we have joys we yearn to share,
we remember them.

So long as we live, they too shall live,
for they are now a part of us,
as we remember them.

~R.B. Gittelsohn - Gates of Prayer (1975)

December 29, 2003
From Laura Stants at SMA Support: (www.smasupport.com)

On 04-04-04, we are proud to be part of an SMA Across America day! What started as a fundraiser for SMA Support has grown into an event comprised of most of the SMA Organizations out there united in one common goal, awareness of the disease that affects us all. 04-04-04 is going to be a day of fundraising, awareness, and fun! Each person who does a fundraiser on 04-04-04 can choose the SMA Organization they would like to have benefit from the day. Currently, SMA Support, FightSMA/Andrew's Buddies, The SMA Foundation, Miracle for Madison & Friends, Payton's Pals, Ryan's Hope Foundation, and FSMA are all participating in events on 04-04-04! We will have the assistance of a lobbyist organization in helping get media and congress attention for each event planned! So join us, contact Karen Reilly at threereillyboys2002@yahoo.com about how to get started, she will help with step-by-step plans and instructions to help you pull one off! Do it for awareness, do it in honor or memory of your child or the child of someone you love. Help us spread the word about the disease, and unite the existing SMA organizations into one loud voice! Let's make 04-04-04 a day to remember in the world of Spinal Muscular Atrophy!

From Laurie: (Marshall's Mom)

On 4-4-4, we will happily be participating in the event put on by Connor Reilly's family. We simply do not feel ready to put something on so soon - too much pressure! We will be putting on something big during the summer again, so in April, we will be at the Reilly's event in honor of Connor - and we hope YOU will be there too! I believe it's a walk/run type event, but I can get more details from Connor's Mom, Karen.

I just wanted to also say that last year, 100% of the profits we made (more than $30,000 total) were sent to Families of SMA. This year, we plan to divide our expenses up differently. I am not sure what the ratio will be (I suppose it depends on how much we are able to raise . . .) but we plan on helping more families directly rather than sending it in for research/cure. We want to be able to purchase a wheel chair lift, or help with adaptation of a vehicle to make it handicapped accessible, or help a family purchase adapted equipment that might otherwise not be affordable since health insurance can be quite stingy! Some families can't even obtain necessary formula for their g-tube fed children - either because health insurance won't cover the cost, or because they live in an area where it is simply unavailable. I feel that we can make a bigger difference in the lives of a few families this year if we divide up our raised funds differently. We hope you will be just as supportive this year as you all were last year. Remember, we are doing this not only for the children who NEED us, but in Marshall's memory as well. We will update you on our progress as soon as we book a site for the golf tournament/auction/dinner. Thanks!

L, M & M ^i^
*PS - If anyone who has not seen our gorgeous painting of Marshall on a slate (done by a lovely woman named Suzanne) please let me know and I can email you a picture of it. Also, for those of you with SMA children/angels, Suzanne has offered to paint/draw more children for those of you who are interested. She can quote you a price depending on what you are looking for. Let me know if you would like her contact information. She has also graciously offered to donate a piece for auction at either the FSMA conference or one of our events. Thank you, Suzanne!

December 26, 2003
11:08pm

Well, we are back. For those who didn't know, Mark and I took a trip this past week, so I apologize for not returning phone calls or emails as we were not home! We really felt that we needed to escape to some time alone (with eachother, of course) during Marshall's angel day and Christmas, so we left on Monday (the 22'nd) and returned a few moments ago. We left the house at 3:00am on Monday (this means that we woke up at 2:00am - Mark's body simply would NOT give in to a loss of sleep that easily and he spent the first day running into every airport bathroom we passed (with his trusty bottle of Pepto in hand, of course! I have another relative who has this same issue but I won't mention any names . . . just know you aren't alone!) We arrived in Miami around noontime on Monday and while we were there, someone noticed Mark's t-shirt that has a sketch of the White House on it (among other things!) This shirt was the official t-shirt for our annual FSMA conference in DC this past June. A woman commented on the shirt, and we got to talking about SMA. I'm not sure what her job was, but she said that she had a client with SMA and was shocked to learn that there was a conference every year! So, Mark reminded me about the FSMA pamphlets I had in my bag, and I left one with her (and in every seat of the airplanes I sat in). She was thankful to have it. We then proceeded outside to our shuttle, where I met another woman in line, who commented on my necklace. For anyone who doesn't know about my necklace, it's a picture of Marshall etched into the face of it. I told her about our special little boy and she said to me "Honey, God needed him! You'll have another one". I agree that God needed him - but I didn't want "another" one. I wanted Marshall. This day was full of "remembering" for me.

We got onto the shuttle which drove us to the Port of Miami, where we boarded the Carnival Fascination. Our room surprised us with a King size bed (when we had expected bunk beds!) We set sail at 4pm for Key West Florida. We arrived the next morning. We enjoyed this place despite the rain and cool temperatures. We did a little bit of shopping, but mostly just walked around, taking in the smells of the ocean, and the (warmer than what we're used to at this time of year) temperatures. I let loose for a bit and had a few drinks (something I almost never do!) We left Key West in the afternoon, heading for Cozumel Mexico. We found the temperatures to be getting warmer and we were able to shed all of our winter clothes, finally! We spent a lot of time sunning ourselves on the deck. We arrived on Wednesday afternoon and spent most of the day on a shore excursion with off roading Jeeps and a place called Paradise Island - one of the most beautiful places I've ever visited. We met another couple, Venessa and Mike, who shared our Jeep - as it turns out, Venessa used to live in Worcester and actually went to South High School, so we thought it was a small world! They were really nice and we had a good time with them. We stayed in Cozumel until 11:00pm that evening, and then set sail for another day and night until we ended up back in Miami this morning. We truly did have an enjoyable time. Of course we do not miss Marshall any less, but I truly felt that he had tagged along in our hearts. We saw dragonfly "stuff" everywhere we went - just little reminders that he was always with us!

This morning, we did our debarkation and things were running a bit late, but we still made it to the airport in time to catch our flight, which we found to be running about a half hour late, but we still were supposedly running with enough time to catch our connecting flight in Pittsburgh. As time passed and we remained on the tarmac this afternoon in Miami, I just knew that we would not make the flight in Pitt, but we were determined to try. I sprinted all the way to the gate in Pitt (leaving my poor husband in the dust!) only to see the gate separating from our plane to Providence. I started begging them to let us on but they refused. So, we had to take another plane to Philly, and then one to Providence (but this time they were kind enough to fly us first class due to their errors). So, needless to say, after 4 extra hours and a lot of aggravation, we made it home - but without our baggage. I have NO undergarments to wear (clean or dirty!) They are supposed to deliver the baggage tomorrow at some point. Hopefully it will show up with all of the contents still in it!

This trip was amazing for us and I am glad we went. It really allowed us to step away from everyone for a while. We get tired of being under the microscope by everyone who wants to see how we are coping. We get tired of being expected to act certain ways, or say or do certain things. Down there, no one knew us and we were free to do whatever we wanted - free to feel whatever we felt - and it was so nice not to be under all of that pressure. We were free to scratch Marshall's name into the sand in Cozumel. We were free to carry around his blanket and teddy bear and take pictures of them in certain places. No one knew us or our story and it felt good for once. In the eyes of everyone down there, we were just another "regular" couple. I am hoping to retain these feelings as we settle back into our "real" lives once again. (Not sure how "real" I am feeling at the moment though - as I am still "rocking" from the cruise ship - waters were rough!)

Anyway, thanks for reading and for caring - and for remembering our boy, who was stolen from us all too soon - one year and 4 days ago. We love you, MD. We'd trade all of the fun moments and all of the lessons we've learned and everything for the rest of our lives if you were still here with us in a body that would do justice for you. We didn't want "another" one, MD - we only wanted you.

~L & M
^i^

December 21, 2003
On this day, one year ago, we stood watch over Marshall, knowing that it would be the last day he would live. I had the CD "A Day Without Rain" by Enya playing softly in the background, hoping to relax Marshall. That CD will forever make me think of the day we said goodbye to him. Family and friends quietly came in to say their goodbyes to Marshall. It was the most agonizing feeling, watching him suffer so badly as he gasped for every breath, and we simply couldn't do a damn thing about it. I wanted to trade places with him so badly so that he didn't have to struggle any longer. I remember crying out at God, wondering where He was in the middle of this. Why did my baby have to suffer so much? One year ago today, as we bid our sweet boy farewell forever, someone told me "You'll never do anything more difficult in your entire life." Words more true have never been spoken . . .

December 19, 2003
One year ago today was a bittersweet day in the life of our Marshall. He had been quite uncomfortable and on continuous morphine for 3 days already at this point - but when he woke up on this day (it was a Thursday) something was different. He was not in any discomfort - he was happy. I decided not to give him any more morphine until I felt that he truly did need it. I was warned by his nurses that he could become uncomfortable quickly and it would not be easy to get him to a comfortable spot if I took him off the morphine - but I just felt that letting him off that drug was a good thing for all of us. And it was. This was the last day Marshall had smiles for all of us - the last day he truly was "awake" and could say his goodbyes to us.

There are some things I will never forget - Marshall wearing his Red Sox outfit from his Grammy on December 19, 2002 not uncomfortable at all - not requiring pain medication or oxygen and so completely full of smiles is one of them.

Oh Star, we miss you so.

December 18, 2003
Prayers please, for my friend Melissa's little girl, Katsie, who was diagnosed with a brain tumor on Tuesday. The severity of this issue, whether it is cancer or not, and the prognosis remain relatively unknown at this time. Katsie is 19 months old. I am certain that no matter what the outcome, the coming weeks and months are going to be difficult for this little girl and her family. Missy is no stranger to sadness and tough times; she lost her first little girl, Shelby, at a premature birth. She does have 2 healthy and vibrant little boys, Braxton and Colt, and of course Little Miss Katsie.

Talking to Melissa on the phone tonite brought me back to the days when we knew something horrible was wrong with Marshall, but we simply did not know what. I could sense that same type of feeling in her voice tonight.

Melissa & Eddie, Braxton, Colt, & Katsie, you'll be in all of our thoughts. We know you have a few guardian angels who will be looking out for all of you. Take care of you.

L, M, & M ^i^

December 17, 2003
Again, another note of thanks. It never fails to amaze me, the little things that people hold dear in their hearts - those things that to them say "Marshall". To Mark and I, certainly everything says Marshall to us (some things more than others though!) Today, Monica came over with a Mickey mouse balloon. This is not just an ordinary Mickey balloon though. The first time I saw one like this, Mon had brought it up to Marshall during his weekend hospital stay back in October 2002 when he received his diagnosis (death sentence). Marshall was so intrigued by this balloon! He would stare at it and try to talk to it, and we would place the string in his hand and he would hold it and pull it down (as best as he could) and then the helium would pull his arm up and he would continue his conversation with his beloved Mickey balloon! These are the types of memories we hold in our hearts.

Since that weekend, Monica has appeared at least half a dozen times with a new balloon for Marshall (for his birthday, golf tournament day, angel day, and a few other occasions). It is always the same balloon though - the big Mickey mouse head (the one Marshall loved so much.) There is nothing in the world that I wouldn't give to see Marshall talk to his Mickey balloon just one more time. For now, we just look at the balloon and remember some of the happiest memories we have of Marshall. For all that and so much more, we thank you, Monica, Tim & Gage.

December 15, 2003
It's really 12/14, but I wanted to put this entry on top so I had to change the date.

We just wanted to say Thank You a thousand times to Marshall's Great-Auntie Barbara Blodgett. You completely made our day today with your simple, but touching gesture. It is so very comforting for others to also remember exactly where we were one year ago.

Last year, Auntie Barbara made Marshall some cut out kisses and hugs from construction paper and put them in his stocking. When he passed away, we were gathering some things to send with him (his blanket, pacifier, a letter from me, my necklace, Uncle Danny's hat, Daddy's penny, etc.) I thought it only fitting that he take with him the kisses and hugs from Auntie Barbara, so I put those in his box with him also - that way he would always have kisses and hugs with him forever and ever. Today, when we arrived at the Christmas party for Mark's dad's side of the family, Auntie Barbara said "Did you see the special things I brought for our pal?" And she pointed to a set of balloons with x's and o's on them - just like the ones that we sent with him, from her. When the party broke up, we went outside and released Marshall's balloons to him. It was a bittersweet ending to the day. Oh, how we wished that Marshall could have been there at that gathering with us today - but in a way, he was there still - in the hearts of all who miss him and love him.

Thanks again Barbara. We love you tons.

L & M
& this M too! ^i^

December 14, 2003
December 2002 was a sad month for the SMA community.

During this month last year, we said goodbye to several of our little SMA angels. The month began with the loss of Saria Clark on the 2'nd, James Giroir on the 14'th, Bradley Smith on the 15'th, Brooke Binning on the 18'th, our own Marshall Potter and also Ronne Wilson on the 22'nd, and Aiden White (who shares Marshall's birthday) on the 29'th. Words cannot express how saddened I am each time a child is lost to this horrid disease. Our thoughts are with these families as they remember their children and the events of one year ago.

We are also thinking of Isabella, who passed away 11/26/03 (I just heard of this one this week). And Charlie C., Charlie P., Alec, Sean B., Sean V., Devon, Sidney, Lainie, Mia, Jeffrey, Shania, Brittany, Cianan, Cecilia, Sierra, Andrew, Colin, Bridget, Maranda, Sarah, Amanda, Christian, Joseph, Wayland, Taylor, Sawyer, Nathan B., Nathan M., Jacob, Rachel, Fernando, Connor M., Benjamin, Carlitos, who have all been lost to SMA, and my dear friend Mindy's little son, who was lost to Ohtahara Syndrome and Myoclonic Encephalopathy. We also remember the following children from my on-line support group who have passed away from various causes: Ashleigh, Adam, Scott, Dustin, Justin, Ben, Brian, Ben, Michelle, Michael, Morgan, Shelly, Courtney, Ray, Heather, Mary Helen, Eric, Tyler, McKenna, Saige, Tyler, Shaun, Amy, and Samantha. From my Compassionate Friends Group: Sean, Tiffany, David, Daren, Melody, Scott, Amy, Bobby, Amy, Deane, Tara, and Claire.

79 children who have died are 79 too many! There are 79 sets of parents whom I know of, suffering the same painful feeling of loss that I feel right now. 79 names purely from memory is quite a lot. I hope I have not forgotten any. Obviously, I know that there are thousands more grieving parents whom I do not even know. Our thoughts are with all of them, of course. But for me to know so many grieving parents is still a shock. I had no idea I knew so many and this surely is not the club I ever wanted to belong to. This club has too many members.

Please remember to light your candles tonite at 7pm. And for those of you with children still on this earth, hug them tightly! I'll never be able to hug mine again . . .
~L

December 11, 2003
Nine years ago today, it was my dad who left this life to pave the way for Marshall.

I remember when Dad got diagnosed (it was my 16'th birthday). I seriously thought it would be such a shame that he would never know his grandchildren. I wished I was in a stable relationship and a bit older, so that I could give him a grandchild before he left - I felt it only fair to him that he know his grandchildren. Little did I know that he'd have and know Marshall for FAR longer and better than we would. None of this ever would have happened in my wildest nightmare. I often wonder how in the world I ended up here . . . it's sure not where I expected to find myself.

Sorry we talked about you the way we did tonite Dad - we know that wasn't you those last few months - but your disease controlling you. I can't say which was worse - watching someone die of brain cancer, or watching someone die of SMA. I will say that the losing part is DEFINITELY worse with Marshall, because he was my child - not that it didn't hurt when Dad died - but I could get over that. I will never "get over" Marshall being gone. How could I?

Last year at this time, Marshall only had 11 days to live. 7 of those days were spent uncomfortably for Marshall, as we tried desperately to do everything in our power to ease his pain and discomfort. Again, we are thankful for Hospice and mostly for Nancy, who gave her all for our little boy.

I got this quote from a friend of mine tonight, and as the anniversary of Marshall's death approaches, I thought it more appropriate to remember his LIFE instead. We love you, baby boy, and you will always hold our hearts!

"When I held my newborn son for the first time, I looked in awe and wonder of every inch of him. How could it be that his hands were empty, when I could tell for certain that he held my heart firmly in his grasp." ~author unknown

December 9, 2003
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow." {One could only hope!}

"I've learned that making a "living" is not the same thing as making a "life"." {Marshall taught this to so many!}

"I've learned that life sometimes gives you a second chance." {Again - one could only hope!}

"I've learned that you shouldn't go through life with a catcher's mitt on both hands. You need to be able to throw something back." {This statement changed my attitude today. I feel as though I've been wearing my catcher's mitts for a LONG time. I am going to learn how to take one of them off so that I may have the opportunity to throw something back!}

"I've learned that whenever I decide something with an open heart, I usually make the right decision." {Every day, we hope that we made the right decisions. The final confirmation will come the day that we meet Marshall face to face again.}

"I've learned that even when I have pains, I don't have to be one." {Oh, what a lesson this has been! I'm still "learning" this one!}

"I've learned that every day you should reach out and touch someone." {I try my hardest to do just that}.

"I've learned that I still have a lot to learn." {Don't we all?!}

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." {I can't think of a statement that is more true.}

~all above quotes taken from "Growing Older" by Maya Angelou

December 8, 2003

"I'm already there.
Take a look around . . .
I'm the sunshine in your hair.
I'm the shadow on the ground.
I'm the whisper in the wind.
And I'll be there to the end,
I'm already there.
Don't make a sound,
I'm the beat in your heart,
I'm the moonlight shining down.
We may be a thousand miles apart,
But I'll be with you wherever you are."

~Richie McDonald, Gary Baker, and Frank Myers.

December 6, 2003
I would like to remind you of the following event:

National Children's Memorial Day
2003 Worldwide Candle Lighting
in Memory of All Children

The Worldwide Candle Lighting is held every year on the second Sunday in December, at 7:00 PM in every time zone. People in every time zone around the world light a candle in honor of all children who have died, that their light may always shine. As candles burn down in one time zone, they are lit in the next, creating a 24-hour wave of light that encircles the globe.

We ask you to join in this special day of remembrance by lighting a candle, wherever you are, on Sunday, December 14.

On this day, we plan to be with Mark's family "celebrating" Christmas. You can be assured I will have my candle and matches with me and if we should happen to still be there at 7pm, you can bet I will be lighting my candle for Marshall and all of the millions of other children who have lost their lives.

December 14 will be a bittersweet day for Mark and I. That was the day (last year) that Caroline & Casey got married. That was Marshall's best weekend ever. I remember being terrified to end the festivities and go home because for weeks before that, I kept telling him - "you just get through that weekend, and then if you have to go after that, it's okay . . ." I knew that once we went home and settled back into our lives, that Marshall was going to begin his downward spiral - he was going to begin preparing to give up the fight on SMA. I had known it for weeks, so I was not surprised when he began to fade that Sunday night. Devasted . . . yes. Surprised . . . no.

The holiday season will forever be tainted for Mark and I. It will forever be dominated by feelings of the unforgiving darkness that stole our precious one. Surely you can understand why we don't feel like being "merry" . . . not this year, anyway. The one thing on our wish list is the one thing we cannot have.

We miss you and love you beyond all words, MD.


*I'm Spending Christmas With Jesus This Year* ~author unknown

I see the countless Christmas trees around the world below.
With tiny lights, like Heaven's stars, reflecting on the snow. The sight is so spectacular, please wipe away that tear; For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear.
But the sounds of music can't compare with the Christmas choir up here. I have no words to tell you the joy their voices bring. For it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart. But I am not so far away, we really aren't apart.
I cannot tell you of the splendor or the peace inside this place. Can you imagine Christmas with our Savior, face to face?

I will ask him to light your spirit as I tell him of your love. So then pray for one another as you lift your eyes above. So be happy for me, dear ones, you know I hold you dear. And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift, from my heavenly home above. I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold.
It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do.
For I can't count the blessing or love he has for each of you. So have a Merry Christmas and wipe away that tear.
Remember, I am spending Christmas with Jesus Christ this year.

November 26, 2003
One year ago today (the day before Thanksgiving - which happened to fall on 11/27) we were in Boston Medical Center with Marshall, who was recovering from g-tube surgery that he had earlier that morning. The positives of this experience did finally outweigh the negatives. We were thankful to have had the surgery done when we did because Marshall was unable to swallow anything shortly after that. It was pure torture to see him so uncomfortable and all wrapped up in gauze with sticks coming out of his arms, and needing to be medicated so often. I remember as soon as he came out of surgery and was wheeled to his room, the phone rang - it was Karen Reilly, Connor's mom, just checking in on us. How grateful we were to have her support during this scary time in our lives.

I also remember being terrified to hold my own son. He had tubes and needles everywhere. He was uncomfortable and restless. I didn't want to worsen his situation; but I needed to snuggle with him. I had to get the nurse to help me (I could not just pick him up and hold him because he was connected to WAY too many things). Nikki was great about helping us in any way we needed it. I was upset that I couldn't sleep with Marshall that night - but he really did have too much equipment in his bed. So, I agreed to sleep on a fold out chair only if the nurse on duty would check him every 10-15 minutes because not being so close to him, I would not hear him if he woke up (because he was so silent). This time it was Ellen. I was doubtful that she would remember to check him this often, but I woke up SEVERAL times to her looking over Marshall - and on occasion, she was rocking him and holding him. I enjoyed watching her with him from across the room - she was very loving to him and he clearly enjoyed her also. At that time in our lives, we didn't care about Thanksgiving or turkey or anything. We just wanted to focus every second on loving our baby son. This year, I still don't care about Thanksgiving because who I was always most thankful for is now gone. I do want to say that I am thankful to have so many people who have supported us over the past 15 months (namely my SMA and bereaved families) but also those who have tried to understand and help us keep Marshall alive within the hearts of so many.

We love you and miss you, Baby Boy. We're sorry your only Thanksgiving was so crappy. Hopefully this year, yours will be better. We already know ours will be worse (because you aren't here with us.) Stay close, Slim!

November 24, 2003
I want to apologize for my behavior recently. I've been told that I have been "bitter" and "harsh" and "antisocial" on more than one occasion. I realize that I have and I am so very sorry for this. Hopefully you will all accept my apologies.

Not that this is any type of "excuse" (because we all have our problems) but I just want to offer a bit of insight on why I may come across as bitter. I am a grieving mother. I would like to remind you all that this will be the first of many Thanksgivings without Marshall. It is also a reminder to us that even though we spent last Thanksgiving in the hospital having g-tube surgery, Marshall was STILL here with us. Not long after this Thanksgiving will be something that pales in comparison, but nonetheless, it will be my dad's 9'th anniversary of his Angel Day (December 11). Eleven days after that, it will also be the first of many anniversaries of Marshall's Angel Day (December 22). This is also the day that our second child was due to arrive - until that pregnancy ended in miscarriage last April. Two days after (December 24) will be the anniversary of Marshall's burying day - most of you will call this "Christmas Eve". I call it one of the saddest days of my life. That is the day we laid our precious son into the ground and covered him with cement and a mound of dirt. The day after that is going to be the second Christmas without Marshall. Marshall's life on earth was too short to even have one Christmas. The first Christmas was a total blur . . . and I'm not expecting much more of this one.

As slowly as time passes for me, I would still like to slow it down even more. A complete halt might be nice. Things are happening MUCH faster than I am ready to accept them. Hopefully you all can accept my "antisocial", "harsh" and "bitter" behavior and just try to imagine for ONE second how you might act if you were faced with all of this at once. When things seem impossible with me, please try to remember that I truly am trying my best - I really am.

L

November 22, 2003
A big THANK YOU to Jim Gaudreau for helping us with the necessary paperwork for our 501(c)3 account. This will enable us to have the non-profit tax exempt status and allow us to distribute donated funds to the SMA community as we see fit. We have big plans for this year! Thanks for the pointsettas and all the cookies too, Jim & Sue! You guys are too much!

I also want to thank Jennifer & Michelle Gaudreau for spending so much time with me this morning. These 2 little girls are so special to me. I never knew one could have so much fun talking about loose teeth, and "nothin' in my noggen" - and then playing with "Polly Pockets", orange balloons, and black markers! Jen kept telling me "Laurie DRAW!" At one point, she was whining about something and I said to her "Jen, what do you want?" and she looked up at me (she has beautiful eyes) and replied "You!" She spent a lot of time in my lap today - just melting my heart! I love you Jennifer and Michelle!

We just came from Elijah's fundraiser. We hope that it was a huge success! The food was great and we were glad we could make it. It was nice to finally meet this family!

That's all the news to report for now . . . Marshall, we are so glad that your light still burns brightly . . .

Love,

L, M & M ^i^

November 21, 2003
The following is a note from my friend, Helen Baldwin. Helen is mom to Jeffrey, who passed away to SMA Type I several years ago. She is also mom to Katie and Matthew who are not affected with SMA. I believe she is also married to Randy. Helen is very special to me because she really was my gateway to all of the support we have found within SMA families. She was the first one I contacted when we learned of Marshall's diagnosis. I have no idea how I found her or where I found her, but the important thing is that I did find her! She has been wonderful - she shared her Jeffrey stories and supported us every step of the way. She also shares my love for writing - as you will quickly learn by the novel she has written here. Pay attention - I think this is great! And, in case you are wondering - YES, Marshall's name IS certainly listed in the memorial tribute. We wouldn't have it any other way!

Here's Helen:

Greetings! I am thrilled to share the news that The Jeffrey Journey is finally available for ordering!

If you are receiving this notice, you apparently have or have had some connection to SMA (yourself or as a parent, sibling, friend, teacher, co-worker, therapist, neighbor, etc.). For those whose e-mail addresses I've added from recent message boards (and for those who may have forgotten all about it!), The Jeffrey Journey is a book I've written based on notes I kept during our brief time with our baby, Jeffrey (Type 1). Many of you receiving
this notice have kept up with the progress of the book, so hopefully it's still fresh in your minds!

The book deals realistically with the impact of SMA and includes resources, facts about SMA, and our common goal of squelching its devastation. There is also a special dedication, with one section honoring those with SMA, and
another serving as a memorial. It is impossible not to be overwhelmed when reading the hundreds of names, and I know there are plenty more. I will be able to make revisions in future printings, such as including additional names and/or 'honoring' new angels in the memorial, adding/revising resources, and updating the progress of the research.

The book comes with a very special bonus - a CD of the music my mother, JoAnn Derden, composed for Jeffrey. It is beautiful and soothing for all ages!

The publisher (Trafford) has provided a book page -
http://www.trafford.com/robots/03-0953.html; it's not completely finished yet, but you can get a good idea about the book from it. If you have a web site, you may certainly add the link in order to help spread the word about SMA! A few SMA links will be included on Trafford's book page, which should help introduce new folks to our SMA family.

In the beginning, you may order from me (Helen Baldwin -
jeffreyb@skybest.com or P.O. Box 964, Jefferson, NC 28640) and get a signed copy OR directly from Trafford at the above link and probably get it more quickly, at least until I can acquire a good supply of the books at home.
Trafford will soon notify major online book sellers (Amazon.com, Barnes & Noble, etc.) and book distributors, and I will also be hawking it like crazy wherever I can - who knows where it will eventually show up!

The price of the book is $26 (U.S.), plus tax ONLY for orders shipped within NC (NC total - $27.82). For the price outside the U.S., you may order at the above site. Shipping/handling costs vary greatly, depending on how you
choose to have it shipped (USPS or UPS) but will be kept as low as possible. Checks or money orders (made out to Helen Baldwin, at least for now), MasterCard, and Visa are accepted. In the future, we will have our own 'secure' book site, but until then, I will simply complete credit card transactions manually. Please e-mail your name/address to me to be sure I get the mailing address correct. If you are using a credit card, you are welcome to phone me with the number/expiration date at 1-800-499-3555; if you leave the info on our voice mail, please be sure to leave either a phone number or e-mail address so I can let you know it was received.

Ten percent of the profits from book sales will be earmarked for SMA purposes, primarily for - but not limited to - the needs of families, so the more books we sell, the more families we can help!

Be thinking of folks who might be interested in a copy - family members, friends, neighbors, co-workers, physicians, nurses, teachers, therapists, hospice organizations, churches, senators and representatives, etc., etc., etc. (I'll be sending copies to Oprah, Dr. Phil, and Laura Bush). This is coming out just in time for Christmas (hint, hint!), so if anyone you know wonders what to give others, feel free to suggest the book! Remember, the more copies sold, the better - not only for SMA awareness, but for donations to SMA families in need and/or other SMA causes.

If you would like a book sent from you to someone as a gift, just let me know the details! There will be no charge for gift-wrapping, and it will be
mailed directly to the recipient to save delivery time. Books ordered from me will be signed; if there is something in particular you'd like written
inside a 'gift' book, please let me know.

In my excitement, I'm sure I've forgotten something, so if you have any questions, holler!

Thanks so much for your support, enthusiasm, and patience for this project thus far, and for the offers of continued assistance with whatever needs to be done. It has been quite a journey for all of us up to this point, and
it's not over yet....

Best,
Helen (Baldwin)

COST FOR BOOK/CD:
In U.S. - $26 + 1.82 tax (NC orders only) + shipping (will vary some, but
from @ $2-4/book via USPS, depending on desired delivery time; significantly
higher with UPS. It's your choice.)
Outside U.S. - Check on Trafford's book page
(http://www.trafford.com/robots/03-0953.html).

WAYS TO ORDER:
1) Thru publisher (Trafford) - http://www.trafford.com/robots/03-0953.html
2) Thru me (Helen Baldwin) in any of the following ways:
1. jeffreyb@skybest.com (PLEASE put SMA or Book Order as the subject)
2. P.O. Box 964 - Jefferson, NC 28640
3. 1-800-499-3555
4. (336) 982-8289

November 19, 2003
Happy Birthday in Heaven to Marshall's pal, Taylor Chase Costa. (SMA I/II) Taylor's site is www.oursmaangels.com/Taylor but has recently been hit by hackers so I'm not sure if it is up and running or not.

November 18, 2003
Please check under "SMA Info" and "Marshall's Friends" on this site to become acquainted with 2 more very special souls. I had my friend Jay set up links in loving memory of Benjamin Amiss and Carter Brooks McNabb, who are both sorely missed by their families and by all who knew them.

When you go to Benjamin's site, check out the raffle for the motorcycle. Jenny's dad, Jim, can be quoted here, saying it's a "SWEET bike!" Perhaps you will be so inclined as to purchase a ticket for this raffle! All proceeds to benefit the Benjamin Foundation (from what I hear, all or most of this foundation will benefit Families of SMA.)

Thanks . . .

L, M & M ^i^

November 16, 2003
I have to say that I am not at all looking forward to any of the holidays. They seem to be closing in on us at a rate faster than anything I am willing to accept. Last Christmas, Marshall's nurse Nancy told me that it was "The Christmas that never was . . ." How right she was! What she did not know was that this Christmas would bring about the same feeling. Everyone I talk to has been out and about, doing their Christmas shopping and getting ready for the holidays. I am sitting here, remembering and MISSING my son, and trying my best to push the holidays away and I find myself building my walls higher. It is my only means of protecting myself. I don't wish to spend Thanksgiving without Marshall. Last Thanksgiving, we were in Boston Medical Center getting Marshall's g-tube surgery done. It was less than exciting for us, to say the least. But at least he was still here, still smiling for us. Oh, how we miss that smile. We miss it every second of every day. We should be out Christmas shopping too. We should be buying toys and cute clothes for our boy. But we are not. And we can not. Just another reminder of something else that SMA has stolen from us.

I can't help but think that if I had not miscarried in April, we could possibly have another child due in just a few weeks. This Holiday season we will feel it double.

Marshall, we love you and miss you more every day. Thanks for sending me dragonflies through RR today! I love you both!
~L

November 14, 2003
~~~~~~~~~~~~~~~~~~~Mark's Family - READ UP!!!~~~~~~

Mark's cousin, Vicki, has tested positive for the SMA gene. We can now conclude that Mark more than likely got this gene from his mother (since Vicki is related on his mother's side). This means that the Potter side of the family returns to the 1 in 40 risk of carrying the gene - the risk is still there, folks! It's just not as high as we could have assumed. This also means that if you are a child of Pam or Sandy, your risk of carrying SMA is now at least 1 in 2! If you are a child of Linda, your risk is 1 in 4 (except for Lori, whom we know has tested negatively), until we find out if Linda carries the gene or not. SO, PLEASE go get tested if this note pertains to you! Although we would never trade a single day of Marshall's life, we feel for the person whose child has to suffer the same fate that Marshall met; because of SMA. PLEASE get tested.

Until one of my cousins tests positive for the gene, we cannot assume it came from either the Berube or the Allain side, so I still recommend that you ALL go get tested before having any (more) children! Your risk remains at 1 in 8, until someone else is positively identified for this gene. At that point, your odds will change - either for the better or worst. It's not a gamble you want to take. Just go get the FREAKING test!

Enough said!

Laurie

*I want to thank my little man. Because of him, one more person knows how to avoid this dreadful disease. We love you and miss you more every day, Slim!

November 14, 2003
Happy Birthday to my dear friend Monica!

November 12, 2003
If anyone wants to view Marshall's Memorial (it's finally finished!) on the Families of SMA page, you may visit it at: http://www.fsma.org/photoalbum/memorial/marshall_potter.shtml

It's probably nothing new to anyone, but I thought I'd post it just in case you wanted to see it. Be sure you click on the main link at the bottom, entitled "Memorial Album" to see some of Marshall's pals in heaven with him, and to read some of their stories.

I want to thank my friend Melissa Brock for sending me so many quotes, many of which have become my favorites!

For anyone who has not heard about this, my mom's family will be singing in a "concert" at Holy Name High School on 12/20 at 7pm. They will be promoting their CD "For Generations". The children even plan on singing their song "The Rainbow Song" on stage, so if you can, come on out to see this performance - it will be worth it!

Thanks for visiting Marshall's site today . . .

November 12, 2003
Anyone want to own up to the messages on the Loving Memories section of the FSMA message boards? As far as I know, there are only 2 Golden Glows, and Jacob's anniversary is in October so it cannot be referred to as "approaching". Just wondering who is having such close connections with my little man . . . the writing looks familiar, but I can't seem to place it to the rightful owner! Help would be nice . . .

November 11, 2003
Happy First Birthday in Heaven to Marshall's pal, Carter Brooks McNabb. Carter passed away this past March from complications of Ohtahara Syndrome (another poorly recognized disease that steals our precious babies.)
Carter's mom, Mindy, has been a wonderful source of support and trust for me in recent months. Please take a minute to learn about her beautiful baby boy, Carter.
http://www.babiesonline.com/babies/c/carter/

Also, Happy Birthday to Marshall's Uncle Ryan.

I can't help but think of where we were last year at this time. I know I was scrambling for answers, and trying to figure out if what I had suspected was in fact happening to Marshall (that he was beginning to lose his ability to swallow). I remember trying to get someone at the Jeep dealership to disable my airbag in the passenger front seat because I wanted to have Marshall sit there when we traveled because then I could see if he needed me to pull over and help him when he struggled for air. We had been riding around with him in the back and I had to guess if he was choking - I was usually right. It was so scary for all of us. Anyway, the man at the Jeep dealership apparently didn't understand the urgency of the situation (even though I told him several times) because my child died before he ever got back to me about disabling the stupid air bag.

Tomorrow makes one year from the first time I heard from my good friend, Kathy Cowan. Kathy had lost her son, Charlie, to SMA I less than a year before Marshall's diagnosis. She has also been a wonderful source of support and strength for me. She sometimes thinks I get tired of "Charlie stories" but I could never tire of those. I like learning all about the angels Marshall is hanging out with.

Thank you to everyone who has walked with us and supported us on our journey. Many of you may think that the journey ended with Marshall's death but you could not be more wrong. This journey will last the rest of our lives - until we are holding our boy in our arms again. Only then, will the journey be over.

We love you, Little Man!

November 11, 2003
With today being Carter's first birthday, my good friend Mindy (Carter's Mommy) asked that everyone whose life had been touched by Carter do something for the good of others on his birthday today, in memory of her sweet boy. So, today I did a bottle/can run, then had a quick lunch with my mom's cousin's wife (aka Prize Queen from our fundraiser! Thanks Lisa!), and then I went to the store to cash all the bottles in. There was over $14 worth. So now, our jar at home for "Wheels for Elijah" has more than $20 just from bottles and cans. Thank you to everyone who has saved cans for us and PLEASE keep it up. Elijah needs us to keep working for his cause!

Mindy, Eric, Trae & Maitlyn, we are thinking of you today as you remember your amazing little man . . .

Carter, it was my honor to do something good for someone else in honor of your birthday today. I hope you and Marshall are enjoying your special day together. Thank you for bringing your mom and me together (even though we are thousands of miles apart!) Our hearts are together with our little boys, somewhere in a place called heaven . . .

November 8, 2003
A friend sent this to me today. I really understood its meaning . . . Will you?

ELEPHANT IN THE ROOM

Theres an elephant in the room...

It is large and squatting, so it is hard to get around it... Yet we squeeze by with "How are you?" and "I'm fine" and a thousand other forms of trivial chatter. We talked about the weather. We talked about work. We talk about everything else - except the elephant in the room.

There's an elephant in the room. We all know it is there. We are thinking about the elephant as we talk. It is constantly on our minds. For you see, it is a very big elephant. But we do not talk about the elephant in the room.

Oh, please say his name. Oh, please say "Marshall" again. Oh, please lets talk about the elephant in the room.
For if we talk about his death, perhaps we can talk about his life.

Can I say "Marshall" and not have you look away? For if I cannot, you are leaving me alone... In a room... with an elephant...

THIS WAS SENT TO ANN LANDERS BY A READER WHO RECEIVED THE ESSAY FROM HOSPICE WHEN THEIR SON DIED.

November 4, 2003
We have started collecting cans and bottles to redeem for cash, to benefit the Trust Fund for Elijah P. Perkins. Elijah is the little boy I spoke of a few entries ago, whose family is trying to raise enough money to purchase an accessible van for him, that will accommodate him with his equipment, his parents, and his 4 siblings comfortably. If anyone has cans or bottles that you would like to get rid of, please let me know, and I will be happy to pick them up (locally, within reason, of course!) Those of you who live far away, you are also welcome to save your bottles and send the money to the address found on Elijah's site:
www.greener-pastures.net/wheelsforelijah

Let's all do what we can to help this special little boy and his family!

Thanks!

L, M, & M ^i^

November 3, 2003
This weekend we spent some time with Mark's grandfather (Shelby Marshall - yes, our son's namesake). Grampy was celebrating his 90'th birthday last week. I remember when our Marshall was born, we made sure to get some pictures of Gramp and Marshall together because we didn't know how much longer Grampy would be around - since he was 89 years old at the time. Despite the fact that Grampy still drives and works out at the gym 3 times a week, never in a million years did we think that his life would long outlast that of our precious boy. It just wasn't supposed to happen this way . . .

I want to bring up a separate, unrelated point for our relatives right now. When someone asks you how many grandchildren, nephews, cousins, great-grandchildren, etc. that you have, PLEASE, PLEASE, PLEASE remember to include Marshall in that number. He WAS here, he DID exist, and we expect that he be treated as such. We understand that he is no longer here with us on this earth, and it is OKAY to tell people that. However, please don't just ignore the fact that he once was here, because he once did have a number along with the rest of the children in this family. Twice in one week, in MY presence, I have heard relatives tell someone how many grandchildren, great grandchildren, nephews or cousins they have, and Marshall was NOT included in that number. This is extremely painful to us, to think that he is not being included in with the rest of the children in the family. We refuse to "forget" his existence, and we wish everyone else felt the same. We are sure this has not happened on purpose, and that no one has done this to hurt us, but nonetheless, it has occured. Mark and I will ALWAYS include him in our "number" of children. Currently, we have one - and though he could not stay on this earth very long, he DID exist and he will ALWAYS be counted. Please, please, please never forget our dear, sweet Marshall.

October 20, 2003
Please visit www.greener-pastures.net/wheelsforelijah

This is the inspiring story of adorable Elijah, whose Mommy has been chatting with me over the internet for a while. I hope to have the pleasure of meeting him and his family at a benefit for him on 11/15. For details on this benefit, please email his mom (there is a link from his site).

Elijah does not have SMA, but instead is affected with hydrocephalus and hemiparesis secondary to a stroke that he suffered in utero. I have been in contact with his mom since she saw one of our "Marshall Posters" advertising our fundraising events this past June. Please take the time to read his story.

Our best to you, Elijah! We hope to meet you soon!

L, M & M ^i^

October 17, 2003
Our condolences to the family of 10 year old Patric McCarthy, whose body was found in the woods of the White Mountains today, after he got lost in the woods on Monday. We had hoped they could bring him home alive - unfortunately, they could not.

October 16, 2003
"At the finest level of my being, you're still with me.
We still look at each other, at that level beyond sight.
We talk and laugh with each other,
in a place beyond words.
We still touch each other, on a level beyond touch.
We share time together in a place,where time stands still.
We are still together, on a level called Love.
But I cry alone for you, in a place called reality."

~ Richard Lepinsky

October 14, 2003
We want to proudly welcome Marshall Thomas Gregerson into the world. He was born on 10/9/03 - 9 pounds and 22 inches.

This is a neat little story, and I will give the abridged version here. A week or 2 ago, I received an email from a mom who had somehow run across our website. I had never met her or corresponded with her at all. She proceeded to tell me that she and her husband had a terrible time naming their daughter when she was born, and if I understand correctly, they even went back to court weeks later to change her name again! They settled on Moorea, and her nickname is "Mo" (just like my dad's was.) After reading through our story, she thought this was a neat little connection. She then told me in her email that she was expecting a little boy in about a week from that time. She said that she really loved the name "Marshall" after reading our story, and that she was considering it for her son. Around that time, her husband had made a charitable donation to support SMA research . . . this is all pure coincidence, but seeing beyond all of that, she decided that there were too many signs NOT to name her son Marshall. She asked me how I would feel and told me that she was proud to name her son "Marshall" after our boy. I told her I was honored that his name would live on, and that I didn't have a problem with it, but I had hoped that when people commented on her Marshall's name (and they WILL!) that she would share about our Marshall and SMA. She assured me that she would! So, with all of that said - we welcome Marshall Thomas Gregerson into this world.

October 10, 2003
. . . continued from yesterday . . .

One year ago today . . .
In the morning, the doctors came to get us to perform an EMG test. They explained that they would insert tiny probes into Marshall's skin administer electrical impulses (similar to being zapped!) and measure how long it took his muscles to react. We stayed with him for most of the procedure, but they asked us to leave near the end. I knew it was going to be hard for Marshall. We were only waiting for less than 5 minutes before they returned him to us. He had been crying. He was obviously relieved to be reunited again with his mom and dad. We now regret the fact that we put him through this terrible test, but clinging to the hope that it would come out with no negative findings, we reluctantly agreed to have the test done. After all, we did not know what was wrong with Marshall and we had hoped that this test would rule out anything severe. We just wanted him to be okay.

A few hours after the EMG test, the neurologist came to get Mark and me to discuss his findings. At that time, many family members had heard that Marshall was in the hospital, so they had come to gather by his side. We followed the doctor, a nurse, and a social worker into a little conference room. Before we were told anything, I remember looking up and making eye contact with one of the nurses. I realized she was crying. How I had hoped she was crying for someone else's baby and not mine. I should have known better. I never asked her name, but her face is one that I shall not soon forget.

At that moment the neurologist told us that our son had a rare, genetic disorder called Spinal Muscular Atrophy. We had never heard of this illness, but were horrified to know our son had a genetic disease. We had never seen this type of genetic disease in our families, so this was a complete shock to both of us. We knew it was severe; but we were completely unprepared to hear what came next. When I asked about the prognosis, the neurologist said, "There is no cure. Your baby will likely die before his first birthday." Millions of feelings began rushing around inside my body. I suddenly felt very weak and sick to my stomach. Mark and I gripped each other's bodies and wept. We were devastated to learn what every parent fears most: our baby was dying.


When we returned to Marshall's bedside, I walked over to his grandmother (who was holding him) and snatched Marshall from her arms. I wanted to hold him forever and never let go. I wanted to shelter him and protect him from SMA. I asked the doctor to explain Marshall's condition to the more than dozen family members and friends who had gathered to visit our son. I could not bear to use his name in the same sentence as the words "no reflexes, severely hypotonic, terminal, genetic disease, and death before the age of one year." All of those words made me feel as though I had failed as a parent. I am a therapist . . . my child was NOT supposed to be dying from a neuromuscular disease!

The neurologist explained everything to the friends and family members who had gathered to support us. Upon hearing the news, they all cried for us and for Marshall. At that moment, I could say only one thing . . . "I want Tante Mariann". My aunt Mariann has long been my confidante and my strength. I wanted her to remove the pain from my heart and to hold me and tell me that things were going to be alright; that this was just a bad dream and she could stop it and make it go away. My mother was able to contact her at work and she rushed over to be with us. Unfortunately, even she could not help us with this diagnosis. She could not change for me the fact that my son was going to die. Despite not knowing what else they should do, our family surrounded us with the love and support for which they are known. Tearfully we hugged one another. They assured me that we would get through this challenge together. I was not so sure. Nevertheless they were all there to help. Mark and I decided that Marshall would sleep next to us for every single night for the remainder of his short life. This meant that I would sleep in his crib for the remaining 2 nights he would spend in the hospital. I had to tell off 2 nurses, but I slept with my child, the way I intended to every night for the rest of his life. I was never going to leave him again. His life was going to be far too short for us to even miss a single moment of it.

My mother also contacted my sister, who immediately made arrangements to fly home so that she could be with us also.

The hospital was wonderful about connecting us with support networks and the best possible nurse for Marshall. We will always be eternally grateful for Nancy and her undying dedication to Marshall.

We left the hospital on October 12, 2002. I remember walking through the parking lot to our Jeep with Marshall, ready to head home. I remember thinking that he was the same child we had brought to the hospital, so why was I so terrified to bring him home?

I remember thinking to myself "I will never be able to walk through this parking lot without remembering October 12, 2002." I was right. I can still tell you which spot we were parked in that day. I cannot walk through that lot without remembering every detail of that LONG walk back to the car, clutching my dying child, who I loved so, so, so, so much. It was raining. Marshall was dressed in his light blue Noah's Ark fuzzy fleece coat. I can still recall the smell of the cigarette smoke from lingering people, as we passed through the hospital doors, and out into the cruel world. I remember the smell of wet pavement from the rain, and stepping in a puddle as we began our trek to the car. Marshall slept peacefully in my arms. I wanted to hold him all the way home, but fearing that we could get into an accident and he could possibly be taken from me even sooner than SMA was already taking him, I strapped him into his seat. On the way home, Mark and I agreed upon several things. We agreed that we would remain strong and not lose our relationship in the process of losing our child. We agreed that we would take many pictures of Marshall so that we could always have them. We agreed that he would never sleep anywhere but the big bed with both of us. We also agreed that we would not cry around Marshall because we did not want him to get scared. (I broke this rule sometimes.) We also agreed to take him as many places as we could because we wanted him to experience as much as he could. One of the things we did was take him for our annual Christmas Tree Cutting at Arrowhead Acres in Uxbridge. I'm not sure if we will be able to get our tree there this year, as it has the potential to be too painful. Anyway, we worked as hard as we could to make Marshall's life as meaningful as possible. We wanted him to be so happy. We wanted to relish every single moment with him. We wanted to teach him so many things . . . and in the process, we were the ones who wound up learning! Our little boy taught us the true meaning of life. He taught us to appreciate each day, and each person in our lives. He taught us to take more risks because life is too darn short to put anything off. Most of all, he taught us love. We never knew love until we met Marshall. And we never missed it, until the day he died. We have been blessed to know, love, care for, and learn from such a special soul. He always was our little hero.

We love you forever, Marshall. . . last year, yesterday, today, and tomorrow, through sunshine and rain, more children or not, our love for you will NEVER change. If it does, it will only be because it has grown. You have captured the hearts of many and within those hearts is where you will always be.

October 9, 2003
One year ago today, we first met with our Early Intervention nurse, Kathy, because we were concerned about Marshall's lack of movement. She called to our attention Marshall's lack of ability to breathe using his chest muscles and seemed quite concerned that he used his belly to breathe. She was also concerned because his reflexes seemed to be nonexistent. We took Marshall to Milford Hospital, to their after hours clinic to be looked at by a doctor that afternoon.

When we got there, the doctor examined Marshall, and immediately he was worried for our son and told me that most of his reflexes are completely gone and that whatever he has is a very severe problem. He wanted to know about family history of neuromuscular diseases. Remembering that my mom's uncle had muscular dystrophy, I called my grandmother from the hospital to find out the details of this illness. She was worried for Marshall too and didn't want to hang up the phone. She kept talking. Finally I told her I had to go because they needed to decide what to do with Marshall.

The doctor began looking for something that would give him a clue for a diagnosis. He asked me if I had eaten honey. I said that I had. Even though I did not give any to Marshall, it could have passed to him through my breastmilk. The doctor suggested that maybe Marshall had botulism. Oh, how I prayed that he did - because I knew it was completely treatable! Imagine wanting your own child to have botulism!

Eventually, the doctor at Milford told us that he could not adequately treat Marshall at that clinic and he wanted him brought to UMass Hospital in Worcester right away. As I was strapping him into his car seat to take him to the car to bring him, the doctor suggested that we have him taken in by ambulance. At the very suggestion of that, I knew something severe truly was wrong with him. The doctor was not comfortable discussing anything with me until further testing could be done but he strongly suggested that we take the ambulance to UMass, so we did. I rode with Marshall in the ambulance and Mark drove the Jeep behind us. The EMT who cared for Marshall in the ambulance kept telling me not to worry - that it was probably something minor. I wanted so badly to believe her, but I could not. We got to the second hospital fairly late and waited in the Emergency Room for hours.

The doctors did all kinds of assessments on Marshall and tried numerous times to stick him with an IV. Finally, a neonatal nurse came down and did it for them. I was relieved to see this happen because my poor child was frightened and in pain for the first time in his life. I'm sure he could sense that we were terrified as well. My mother met us up there and stayed for a little while. Finally, after 1:00am, we were transferred upstairs to a room. It was not a private room though. There were 4 beds in there with just a curtain for privacy. Across from us was this poor little baby who was hooked up to all kinds of alarms. He was all alone; no family to stay with him. I went to him several times in the night and just looked at him and rubbed his arm. I felt so sorry for him because I knew Marshall would never be as sick as he was. And even if he was ever that sick, Marshall would have family surrounding him every second.

I asked the nurse what was wrong with the baby across from us and she said that he was born VERY early. She said that he would outgrow most of his ailments but it would take a very long time. I felt so sorry for him.

I was not permitted to sleep in Marshall's crib with him that night (even though it was a big one). Instead, I was forced to lie down in a fold-out chair that they called a "bed". I got up several times during the night to nurse him. He woke more frequently than normal. I suppose he could tell that I was uneasy and he probably also missed the comforts of his home. Finally, I was so tired, I just had him lie on my chest and cuddled him the rest of the night. I wanted to hold him and love him forever, and although I did not know the extent of his illness, I truly thought that no matter what physical condition Marshall was in, I'd be able to hold him like this forever - because never once, did I think he was going to die. I prayed all of that night that he would be okay. I paid close attention to the rhythm of his breathing as we slept chest to chest that night. He was much more at ease this way and almost as soon as I placed him on there, he fell asleep. And so our nightmare began . . .

October 1, 2003
Heaven has gained another angel. 7 month old Nathan McKenzie (Type I SMA) has joined Marshall and all of his friends in heaven.

I had the pleasure of meeting this loving family at the FSMA conference this past June. I remember being so heartbroken as I said "goodbye" to them for the final time. I knew in my heart that I would never see Nathan alive again.

I know Marshall was there to help him cross.

Please say a prayer for this family, as we know all too well the feelings that will follow for them.

You're in our hearts forever, Nathan!

L, M & M ^i^

September 30, 2003
Thoughts and prayers for our pal, Connor Reilly, who is still experiencing some scary times. We hope he kicks what ails him soon, and that he can be back to himself and feeling well again. You're on our minds, Smiley Reilly!

Feel better Fast!

September 29, 2003
"Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling into at night. I miss you like hell."

~Edna St. Vincent Millay, Letters, 1952

September 23, 2003
Happy First Birthday in Heaven to Lainie Grace Border (Little Lainie Lou!) Julie & Bret, our thoughts are with you today and always.

Today is also our 3'rd wedding anniversary. We don't feel much like celebrating because our boy should be here with us. It's amazing how when we got married, the script we wrote out wasn't like the one we've been living. Some things just can't be planned for.

I do want to take this opportunity to thank my husband Mark for being my rock - for helping me stand up when my heart tells me I can no longer do so. You are the reason I am still here today, despite everything we have been through. I love you tons, Babe. I am so thankful to have experienced every second of the little life that we created together. I only wish it could have gone more according to that script we wrote out 3 years ago. We both miss you, Marshall and without you, we don't feel like much of a family, but we know we are. Tante Annette said it herself . . . "Laurie, Mark and Marshall can and will never be separated." So, as hard as it is to not feel separated, we try to believe that we are not. You live within our hearts every second of every day.

"Just think of him as living in the hearts of those he touched; for nothing loved is ever lost, and he was loved so much." ~author unknown

September 23, 2003
Congratulations to our good friends, Andy & Michelle Rollinson, as they welcome SMA-FREE Baby Ryan into their family! Ryan joins sibling Kevin (8 years old!) Ryan also has a big sister Rachel, who passed away in 2000 from Type I SMA. This little miracle is a dream come true for his family! Congratulations to all of you! We love you!

L, M & M ^i^

September 23, 2003
Tonight, Mark too me out to dinner, as he always does on our anniversary. Tonight was different though. All I could think about was last year, when we left our sweet baby boy under the care of my mother to go out and grab a quick bite to eat. Marshall was a mere 5 weeks old at the time, and we really didn't want to leave him . . . But, feeling the pressure from my mom to let her baby sit for us, we went out to dinner and tried to enjoy ourselves. We chose the closest restaurant to home, and when not even half of our food had been eaten, we said to each other "Okay, let's go get the boy!" We missed him so much - even though not much time had passed! We couldn’t stand to be away from him. Little did we know that that was how the rest of our lives would be; so far away from him.

We miss you, Slimmy Slim.

September 22, 2003
If you've read my prior journal entries, you will know that this is a difficult time of year for us. My heart has been so heavy these past few weeks, it makes each day so difficult to complete; but somehow, we find the strength to keep moving, and we carry on. (Sometimes it's just the little things that help us do this . . . right, Peg? (*wink) Anyway, because I have an hour between my 2 jobs, I usually spend the first 20 minutes of that time eating lunch, and for the other 40 minutes I like to walk. Of all places to walk, I find it most peaceful and most comforting to walk in the cemetery. (There is one close by to where I work. It is not the one Marshall is at - but still, there is a feeling of contentment I get from being there - it is the most beautiful cemetery I've ever seen.) So today, I was just finishing my walk and as I approached the gate to leave, I said outloud "Okay Marshall, it's been a while since I've heard anything from you. I miss you and I want to know you are still around me. Send Mommy a sign when you have time." And not even 3 seconds later, a red dragonfly whizzed in front of my face. I know this was not coincidence, as I had just done 3 laps around the cemetery and had been in there for 40 minutes and had not seen one single dragonfly. That one was just for me - from my little boy. Thank you Marshall. You have taught us to notice the little things in life - those that are the most important. We love you so very much and our lives are so empty without you. We miss you, Pal.

"We enjoy warmth because we have been cold.
We appreciate light because we have been in darkness.
By the same token, we can experience joy
because we have known sadness."

~David Weatherford

September 21, 2003
Thanks also to our dear friend, Monica, for all of the time and effort in making our picture board display. People had nothing but good things to say about it and it really was beautiful. Thanks Mon!

September 20, 2003
We want to send a HUGE thank you to everyone who participated in the Walk-n-Roll athon today. The Rollinson's put on a great event, with help from the Gaudreau's and many other people. We want to thank cousin Tina and her crew for singing at the event, and also our friends and family who showed up to support this cause, which has become so very important in our lives.

We also want to send our condolences to the Amiss Family, who said goodbye to their little boy, Benjamin 2 weeks ago. Benjamin also suffered from Type I SMA.

We would also like to offer our thoughts to the Border Family, as they remember their sweet little girl, Lainie, on what would have been her first birthday - this Tuesday, September 23, 2003. Lainie also lost her life to Type I SMA, this past February.

Please remember those who continue the fight against the disease that stole Marshall from us. Little Callie from MD, who was hospitalized with pneumonia recently, and our Massachusetts neighbors, Connor & Sean, who were also hospitalized this past week. Thankfully, both seem to be on the road to feeling better. And, of course, our pals: Cole & Jen can always use some good thoughts, as well as ALL of the children who continue the battle against SMA. We love you all and we hope you all remain healthy and happy!

L, M & M ^i^
*Michelle, Andy, Kevin, & Rachel^i^, our thoughts will be with you on Monday and the days to follow! We can't wait to meet Ryan!

September 19, 2003
Please join us for the 2'nd Annual Walk-n-Roll athon for SMA tomorrow morning at 10am. Registration begins at 9am. The walk will take place in Chelmsford, MA and is a 2.5 mile paved route. All proceeds to benefit Families of SMA. Please come on out and walk on Marshall's team and show your support for those who are living with this disease today - Please do this in loving memory of those we have lost to SMA. Following the walk, there will be some entertainment, food, and lots of fun. This has the potential to be a GREAT day and we hope to raise loads of money for FSMA.

Any questions - just email me at frosty4@gis.net

EACH LIFE AFFECTS ANOTHER'S

"We may not always realize that everything we do,
affects not only our lives but touches others, too.

For a little bit of thoughtfulness
that shows someone you care,
creates a ray of sunshine,
for both of you to share.

Yes, every time you offer someone a helping hand,
every time you show a friend you care and understand,
every time you have a kind and gentle word to give,
you help someone find beauty in this precious life we live.

For happiness brings happiness,
and loving ways bring love,
and giving is the treasure that contentment is made of."

~Amanda Bradley

September 17, 2003
The co-presidents of "The Jennifer Gaudreau Fan Club" would like to wish our honorary member a VERY happy 2'nd birthday! We love you, Jenny! We can't wait to see you on Saturday!

L, M & M ^i^

Jen's story can be found at:
www.oursmaangels.com/jennifersworld

September 17, 2003
Connor Reilly, no more crashing! You get well soon! Our thoughts are with you, Pal!

September 16, 2003
Our boy is now a celebrity; his picture can be found on the main page of the Families of SMA National Chapter website. www.curesma.com if anyone wants to check him out. It's a picture that everyone's seen, but I have to say he looks pretty good on that page!

We miss you, Little Man. We just do. Thanks for the message on Saturday - we know, and we DO understand! We still LOVE you Marshall, as much as we always did.

" . . . we have come to realize that death breaks the earthly tie. But, love survives when grief has passed, because LOVE can never die . . ." ~author unknown

September 14, 2003
This is a very difficult time of year for our family. The cool air in the mornings; bright sun in the afternoon, the pumpkins for sale on roadside stands, and the smell of autumn in the air. To most folks, these are the comforts of a beautiful New England autumn season beginning to unfold. Although just two years ago, I would have had those feelings, I no longer do. Yesterday I was brought to tears by a picture I see every single day without crying. Yesterday was different. I saw the pumpkins in the picture and they reminded me of the events that followed shortly after that picture was taken. I remember taking Marshall to Olan Mills and the girl asked if he could hold up his head any better. (He had just been there 2 weeks prior to that day.) I told her he could not, in fact, it seemed to be getting worse. She said that it was okay and we would just shoot the pictures of him lying on his tummy. They did come out beautifully. She told me not to worry; that she sees a lot of babies and they all develop differently (some slower than others.) She was really nice, and tried to be so compassionate.

2 weeks after that, we found ourselves in UMass hospital facing a terminal diagnosis for Marshall. I begged my mom to go pick up those pictures, as they were expected to be back and I just wanted them. I wanted to see something from when I was still clueless and happy. I wanted to be reminded of what Marshall had been before we knew, and not what I knew he would become - if that makes sense to any of you all. Anyway, my mom did get them and I loved them and I was thankful to have such nice pictures of my beautiful boy.

Today, my sister-in-law sent some really cute pictures of Marshall that I had never seen before. I knew when I saw them that they were taken before the diagnosis. I looked tired in them but still so happy. The circles weren't under my eyes and the fear wasn't living in my face. Then, I looked at the date in the corner of the picture. October 9, 2002. I started to cry. That was the day that Kathy Asselin urged us to take Marshall to be checked out because she strongly felt he was NOT right at all. So, we did. That was the time we went into the hospital a little nervous that something minor could be wrong (but with our happy, healthy child) and we came home as terrified parents of a terminally ill child (who really was no different than he had been 2 days earlier, but our whole perception of everything was so much different than it had been, only 2 days earlier.) I'm really not sure why I'm writing all this. I suppose just to let people know that little things have the potential of bringing back so much - just through thoughts and memories, or the sight, smell, or feel of something that reminds us of Marshall. Really, everything has the ability to do this to us at one time or another! Sometimes the tears are of sadness because we miss him so incredibly. Other times, they are tears of anger - for we HATE SMA and what it has done to our family. And still other times, (these are rare occasions) they are happy tears because we are so thankful we had him for the amount of time we did. We wish it could have been longer. We miss him. We love him. We never will be the same.

"While we try to teach our children about life, our children teach us what life is all about."
~Angela Schwindth

September 10, 2003
I just found out that John Edward will be coming to Wallingford, CT sometime in October. Is anyone interested in this? I have no idea about ticket prices or dates, but if you email me as "interested", then I can update you as soon as I know. I already have 2 others besides myself who are interested, so if anyone else would like to join us, be sure to let me know.

As for any "news" on what went wrong with our procedure, I will simply quote my doctor word for word "I have no answers here". So, that pretty much sums it up. WE DO NOT KNOW what happened. So, as my friend tells me "The past is your ass, it's behind you." This is now unfortunately our ass, and we prefer to leave it at that. All 3 of us involved did everything we could to make this a success, but unfortunately it did not work. We are still completely thankful that we have a cousin who loves us enough to go through all of this just for us. We are sorry we didn't get more desireable results. We are again going to move forward with a completely new plan. This time, we aren't elaborating on it, so please don't bug us. We are going to just do our thing and if we feel like sharing anything, then we will. Otherwise, we are asking you not to ask us or anyone else. Thanks!

SMA stole our only child. It will NOT steal our future. We simply won't allow it to. I've seriously considered throwing in the towel and being done with trying to have a family but that would be too submissive to SMA, and I refuse to let SMA steal the rest of my hopes and dreams another time. Once was plenty - more than enough. SMA will NOT win another time against us.

" . . .There's a spirit that guides me; a light that shines for me. . . " ~John Denver

As long as we have our little spirit light, that's all we need, right Star? We love you always and forever (kind of like infinity - right, Charlie Bear?)

September 10, 2003
"There is a greater darkness than the one we fight. It is the darkness of the soul that has lost its way. The war we fight is not against powers and principalities, it is against chaos and despair. Greater than the death of the flesh is the death of hope, the death of dreams. Against this peril, we can never surrender. The future is all around us waiting in moments of transition to be born in moments of revelation. No one knows the shape of the future or where it will take us. We know only that it is always born in pain. If we are wise, what is born of that pain, matures into the promise of a better world. . ."
~Babylon 5 (written by J. M. Straczynski)

September 6, 2003
All the hope in the world couldn't get us what we so desperately wanted this morning. For those of you who know what we were supposed to do - we regret to inform you that we didn't even make it to that stage of the procedure. None of them made it. We are so completely heartbroken and we just don't understand where it all went wrong. We hope to have answers soon because we are just at a loss as to where to go from here. Please don't ask . . . we have nothing to say.

September 5, 2003
"Hope sees the invisible, feels the intangible, and achieves the impossible."
~author unknown

September 3, 2003
Mark and I were chatting tonite and we have come to the conclusion that despite everything sad that has happened in our lives, we are SO completely blessed to know and love some special people in our lives. We know that this note will be understood by whomever it is meant for, so we won't list any names here, but without your help, your inspiration, kindness, generosity and selflessness; life would be boring for us - and we wouldn't have nearly the appreciation that we have right now. At this second, we are amazed, extremely proud, and so very blessed to have you in our lives. So, for all that you are, and for all that you have helped us become, we say THANKS! There are love and appreciation FAR beyond words here . . .

September 2, 2003
Tante Mar, you are the BEST! Thank you for what you did tonight! I know you were a bit nervous but it all turned out perfectly. Now we can both sleep well tonite! I love you!

Lau
*orange and red, orange and red!
*Collin - thank you too for adding Marshall to the Memorial Photo page at Families of SMA (www.curesma.com)

September 1, 2003
Another note of thanks to another mystery person! Yesterday I washed my car and left my sign on top of the roof. Apparently, it blew off and probably ended up in the road . . . but today it was stuck to my mom's door. So, thank you to whoever found it and returned it!



L, M & M ^i^
*Hey my little AWTGG, think orange and red!

September 1, 2003
I wanted to make a request of my friends who either have a child with SMA, or have lost a child to SMA. Jenn Griffin (Mom to Brittany Leigh 12/15/97 to 11/30/98 - and to Mikki & Mason - SMA free!) has begun making a book for Families of SMA. Right now, there are only 7 pages (one per child) One of those pages is Marshall, so that means that only 6 other families have actually sent in photos for this project! We need LOTS more children in this book. I've seen it and it's beautiful. The way it works is that each person pays (I think it's $15) and sends her 4-8 pictures of your SMA child. She will make a page in the book for you. The book of SMA children will then be available at any fundraising event if you request it in enough time to have her mail it to you. It is a nice idea to share our children with so many people. All proceeds will benefit Families of SMA. If you wish to do this, please email Jenn at jenngriffin3@aol.com

Thanks!

August 31, 2003
We wanted to say thank you to whoever the mystery person is who left 3 buckets of mums on our porch! It is important that you come forward so that we may thank you properly and also mark your plants in Marshall's garden so that in years to come, we will still know that they came from you! Please let us know who you are!

L, M & M ^i^

August 31, 2003
Lucky 13 . . .

August 30, 2003
This is another sad day for me. I learned today that SMA has claimed the life of 2 more children. Mia Nicole Holland and Joseph Jean both left this earth yesterday from complications of SMA. It seems overwhelming lately - the numbers of newly diagnosed children and also those who have lost the battle with SMA are just staggering. It is frightening to me - what we were told was SO RARE just IS NOT! Please keep these families in your prayers. We certainly know how difficult this is and wish that there was more we could do. WHERE, oh WHERE is that cure!?

I've also been wanting to post something else . . . you may or may not know that the Muscular Dystrophy Association is holding their annual telethon this weekend. When Marshall was first diagnosed, we were told to contact MDA - that they would have all of the information we needed. We did just that, and found next to nothing for information. I also learned that only 75% of donations made to MDA actually benefit patients directly. That means that 25% still goes to overhead costs and advertising. When we look at the annual reports of Families of SMA, we notice that 97% of all donations directly benefit the patients and families affected by SMA (through research and other means); meaning that only 3% of all donations are being used for publications and overhead costs. I'm not telling anyone not to give to MDA (because they are a beneficial organization for some); however, if you were considering donating this weekend, PLEASE donate to Families of SMA instead. A greater percent of the money will be put to MUCH better use. (Besides, most of us have become partial to the the support we have received from Families of SMA and choose to fund this organization instead.) SMA strikes a raw nerve with me and I want to do anything and everything I can to help SQUASH it! You can help too! You may reach Families of SMA by visiting www.curesma.com

August 28, 2003
Happy first birthday in heaven to James Patrick Giroir & also to Sidney H. Stants who would have been 4 years old today. Marshall, I hope you are celebrating and partying like crazy with all of your friends - you certainly have MANY friends up there in heaven. We miss you and love you all.

"Loving you is easy, we do it every day. Missing you is a heartache that never goes away."
~author unknown

August 28, 2003
Dear Marshall,

I've gotten a special request of you from a very good friend of mine who is sad and hurting right now. It's okay, Little Man. I think it's time for you to shine that golden glow. They're almost ready; and when they are, you know what to do. Love you forever.

Mom

August 27, 2003
Just a little congratulatory note to our pal, Jen Gaudreau. Jenny has been practicing maneuvering in her standing Dani and her mom proudly reports that she has now learned to turn it! She can be outside with her big sister Michelle (who is wonderful, by the way) while Michelle rides her bike. Their mom told me that while she's using her Dani outside, Jen is smiling a HUGE smile and her hair is freely blowing behind her. Just picturing this in my mind makes me so proud of Jennifer (who is not quite 2 years old yet!) You GO girl! Keep inspiring and amazing us. We can't wait to see you whipping around in that Dani!

Thank you for saying what you said to your Mommy tonite, Jen. I know you understand what she told you and it was touching to hear how you conveyed your feelings. You are such a little sweetie. We love you and Michelle to pieces and we'll see you really SOON!

L, M & M ^i^

*Anyone wanting to read Jen's story, please visit www.oursmaangels.com/jennifersworld

Don't forget to sign her guestbook!

August 27, 2003
We wanted to share a story from Mark's cousin, Lori. Because Lori and her family were away when we held our planting party in Marshall's garden, she has been meaning to come down and plant her favorite flowers (daisies) in Marshall's garden. Yesterday, she finally had some time, so she went out and realized that all of the daisies were amidst the weeds and all had turned brown and are beyond their season now. So, she brought the closest thing she could find. They are cute little yellow flowers. As she was digging these up, she was saying something to the effect of "I'm sorry Marshall. The daisies are no longer recognizable and so I have to bring these flowers for your garden. I'm sorry they're wilted but they will grow back next Spring." Then, out of nowhere, she found this little decorative bug on a stick (similar to the ones that have been planted in Marshall's garden!) Since her husband, Pete, has a thing against yard ornaments, they don't have any at their house. They have never noticed this there before. So, she brought it over and planted it with the flowers. We know it was our little sign from Marshall! He likes those little yellow flowers! And Lori, I forgot to tell you - yellow is the color that reminds me most of Marshall. Prior to having Marshall, I was always against yellow for boys because I thought it was feminine. But, for some reason, yellow turned out to be the color that Marshall looked BEST in! I did love his look in yellow so much! So now, I actually SEEK out yellow things for him. So, this all comes as no surprise to me! He apparently likes yellow too!

Thanks!

Love,

L, M & M ^i^

August 27, 2003
Please keep 8 month old baby Joseph (Type I SMA) in your prayers. His last name escapes me right now, but he needs our prayers. He is having a rough day. He is experiencing difficulty handling his secretions and is making some unhappy noises. For about the millionth time since last October 10'th, SMA is breaking my heart again. This relentless monster is stealing so much from Joseph right now (and from all of the children who are affected by it.) I cling to the hope that some day the doctors will be able to cure this disease in HUMANS, not just MICE! Please keep baby Joseph (and Baby Cole!) in your thoughts as they continue to battle SMA.

August 27, 2003
I just wanted to thank John Edward for today's inspiring messages of comfort. I found today's show to be very relevant and although I wasn't there in person, I felt that the message was one for me.

August 26, 2003
Happy 3'rd birthday in heaven to our pal, Andrew Fimbel.
(www.andrewstoybox.org)

August 26, 2003
Heaven has gained another SMA angel. Wayland West passed away yesterday. And so the vicious cycle of this disease continues to rob our children of their lives.

For those of you who hadn't yet decided if you would be walking for SMA research on 9/20 in Chelmsford, perhaps this little guy might have helped you decide. Please keep his family in your prayers.

*Marshall - you know what to do.

August 24, 2003
Prayers please for Baby Cole Webb, who aspirated again this morning. Please pray that he will be comfortable for the remainder of his time here - however long that may be. Marshall D., please watch over Cole and do whatever you can to allow him to be comfortable. Our thoughts are with the Webb family . . .

Marshall, please also help Nancy cross over easily and please show her around the beautiful heavens. Let her hold you and love you the way that your Mama wishes she could. And, help us to help her children. Thanks Little Man.

L, M & M ^i^

August 22, 2003
Tracy Ruble, please email me. I tried to email you and it got returned to me. I have something I'd like to send to you. Thanks!

Laurie

August 22, 2003
From the message boards at www.curesma.com:

From the kindness of strangers… Last Thursday WCPO of Cincinnati did a feature interview about the Lockwood Family: Kevin, Beth and their children Emma and Nicholas. Not only did this raise awareness of SMA but it also generated many donations. Today FSMA received a donation of $100,000 from one viewer who was touched by Emma and Nicholas' story. Thank you to the Lockwood Family for sharing their story and thank you to the donor who opened up their heart to help. The interview can be found at http://www.wcpo.com/wcpo/localshows/9onyourkidsside/203bec9e.html

Way to go, Lockwood Family!

August 20, 2003
10:37pm
Dear Marshall,

Thank you for continuing to do your special work through other people. You amaze me every day and I love you so very much. Every day, I see more and more pieces of this plan that you are such an important part of. Someone special helped me realize that even more tonite.

Hold tight to Little Charlie's hand - he needs you to show him around! Tell Charlie "Way to go!" with the hummingbirds too! Just like your dragonflies. Thanks for being my Little Soldier! I love you, Marshallfly!

hugs & kisses,

Your Mom (and Daddy too - but he's already sleeping!)

August 17, 2003
From one of Marshall's Aunts:

It's Your Birthday Marshall.

Hi Marshall!
Today is your first birthday, a milestone that we wanted to celebrate with you. It saddens our hearts that you are not here to celebrate with us, we wanted to sing the Birthday Song for you and watch you eat your first cake, smudging it all over. We wanted to see your first tooth and watch you take your first steps as well as hear your soft voice say Momma and Daddy, Auntie, Memere, Grampa, Tante, Uncle...you can't imagine how much we miss you and wish you were here. You are in our hearts little mister. We hope you are riding into the sunset with your Grampa Mo, on your first pony.

We planted a garden for you Marshall, with many different, pretty plants, we want you to know that you are dear to us and we will never forget you, we hope you will sit with us in that garden, on your special bench, and watch the plants grow, as you should be growing with us, running, laughing, playing, doing little boy things with your Daddy and Mommy.

As for me, Marshall, I miss holding you and watching your smiles. Please spread your glow to the other SMA children up in Heaven and let them know that they are all loved and thought of every day, every minute of every day; please spread your glow to us here on Earth so that we may find comfort in your memory since we can't hold you in our arms.

With much love, hugs, and kisses.
Auntie Dana

August 17, 2003
Okay - I have the final total for our events (since April!) This check is LONG overdue to be sent to FSMA. The final amount is: $29,574.78!!!

Thanks Everyone for all of your support!

August 16, 2003
5:56AM

Happy FIRST Birthday in Heaven to our Little Angel! I will never forget the events of August 16'th EVER. I will always look at that day as the greatest one of my life. We all miss you and love you with all of our hearts, Marshall. Thanks for being there to help all of the little ones cross over. You have made us the proudest parents ever. We're going to borrow a word from the Cowan girls here and say that "We love you to INFINITY, Marshall!"

Mom & Dad

August 16, 2003
Happy first birthday in heaven also to our pal, Aiden Joseph White. He and Marshall are 2 special SMA angels who share the same birthday. You two enjoy your day and stay close to your Moms & Dads! We love you both!

August 16, 2003
Well, today was a beautiful tribute and celebration to the legacy of our little man. I can't believe that one year ago, I held him in my arms on just his first day of life. Who knew back then that his life would be so short . . . We certainly have learned a LOT over the past 12 months. More than we ever cared to learn actually, but we wouldn't trade a single second of time we had with our little guy for anything in the world. We chose to focus on today as a celebration of Marshall's LIFE. So, doing just that, we now have a GORGEOUS garden dedicated solely to the memory of our special son. We want to thank everyone wholeheartedly for coming and bringing some beautiful plants and garden decorations. We are touched by the turnout of people and so blessed to know and love each one of you! Thank you for being in our lives. We are also thankful for the many good wishes we received today in celebration of Marshall's life. Thanks to all who care so much about all of us. Again, we are so blessed to have you in our lives. Surely Marshall agrees, and is dancing today in heaven with his best pals, and even his little girlfriend! *wink, wink to his girlfriend's mom!

And now, onto the winner of the SMA x-stitch blanket! Our own fundraising queen, Pat Cuneo (Giggles the Clown) was the original winner of the blanket. Later in the night, I spoke with her and she told me to put all the names of the SMA families who had purchased tickets back into the container and redraw the names. We ended up pulling the Reilly family, so they are the new owners of that beautiful blanket! Congratulations, Bill, Karen, Tim, Owen and sweet little Connor!

This marks the closing of all of our fundraising events for the year. This week I will total the final amount, post it here, and get that check off to Families of SMA, where it is very much needed! Thanks again to everyone.

We will have pictures of Marshall's garden soon . . .

Love to all,

Laurie, Mark, & Draco's BRIGHTEST star, Marshall Potter

August 15, 2003
As tomorrow marks the happiest day of our lives - and should be something we are celebrating WITH Marshall, once again, we are reminded of the devastation brought upon by SMA. This time though, it's not about Marshall. SMA has won yet another battle. GodSpeed to heavens's newest angel, 2 month old Charlie Park. Charlie passed away at 12:17am.

About 12 hours before Charlie went to heaven, I was driving home from work, and had strong feelings of him. I had just spoken with his Mom the day before and she kept telling me she wished Charlie would go peacefully and not suffer. I remembered this, and I said to Marshall "Please go and get Charlie's hand - it's time for him to be with you. Do it today, Marshall." And he did.

I am heartbroken for this family, as I always am for the families who suffer such a loss. Please keep Chuck and Jemma in your prayers as they grieve the loss of their only child. This is all too familiar for us and it breaks my heart to know exactly what they will have to experience.

Fly, Sweet Charlie. Fly and Be Free! We will remember you always.

August 15, 2003
Thanks to the review committee and to Harvard Pilgrim Health Care for honoring our request on the 5'th and final attempt. We truly believe this decision is in the best interest of all involved and are so thankful we can be writing this today! Thanks again to all who made this happen! Especially, all of the SMA Angels in heaven and their parents, and the parents of those children with SMA who are still here, who still took the time to write a letter, or mail out some vital information. We cannot even properly convey our thanks using words right now - just please know how grateful we are to all of you!

Love to all,

L, M & M ^i^

*I always knew your face was irresistable, Marshall! There was no way that they could look at your little face and possibly tell us NO again! Thanks for all that you are, Pal, and all that you have helped us become. We love you.

August 14, 2003
"Who says that every wish would be heard and answered, when wished on the morning star? Somebody thought of that and someone believed it - look what it's done so far. What's so amazing that keeps us stargazing? And what do we think we might see? Some day we'll find it; the rainbow connection, the lovers, the dreamers, and me."

~ from The Rainbow Connection (Kermit the Frog)

August 13, 2003
We want to thank so many people today! Especially, those who took the time to write us a letter in hopes of winning the war on our health insurance company. We've acquired about 6 WONDERFUL letters and are expecting 2 or so more before Friday. Thank you SO much for doing this to help us out. We will definitely keep you posted on our outcome! Also, thank you to so many special people who have sent special things for Marshall's garden. It is looking amazingly beautiful out there and we owe it all to everyone who has participated in making it what it is so far! We look forward to seeing it Saturday afternoon, after more plants have been added. Thanks again, everyone!

Love,
L, M & M ^i^

August 12, 2003
I have two dear friends right now who are struggling terribly with SMA. Charlie and Cole have both had a rough day today. This breaks my heart to know that SMA is winning STILL. When will it stop!? Please pray for Charlie and Cole and their families, that they will all be comfortable and peaceful. Charlie and Cole, we love you dearly, and Cole, we hope you enjoy your birthday tomorrow!

My heart is broken for what this disease has done to SO many children and families. DAMN YOU, SMA! Some day, our dreams will become a reality and you will NOT win anymore. Some day you will not be able to hurt our precious babies.

Marshall, you know what to do. I love you, my special boy. Keep picking those wild flowers and chasing butterflies and I will see you soon enough.

August 10, 2003
I just wanted to share a few links from the FSMA site on the progress they are making with drug trials. http://www.fsma.org/curesma.shtml and http://www.fsma.org/wirth2003.shtml

Just in case anyone is interested in reading about that. I found it interesting!

*********************************************************
Also, a reminder to those who took tickets from me to sell for Maria's x-stitch SMA Angels blanket. The drawing is August 16'th. That is 6 days away! So, if you want those tickets entered in the drawing, then I will need them (and the entry money) by Saturday! Thanks everyone, and good luck!

L, M, & M ^i^

August 6, 2003
I wanted to share a small story . . . Many months ago (or was it years?! Time seems to run together . . .) I came across this beautiful quote about children in heaven and how time is different on heaven and earth. At the time, I had NO idea how meaningful a quote like this would be, and how badly I would need it! Anyway, I began talking with my friend Julie online about her sweet girl, Lainie (another victim of Type I) a few months back and I wanted to share that quote with her; but I could not remember it! I searched and searched for months and kept coming up with nothing. Well, 2 days ago, I began emailing yet another mom of another victim to Type I (this one's name is Maryclaire). On the first email she sent to me, this quote was on the bottom:

"They say that time in Heaven is compared to the 'blink of an eye' for us on this earth. Sometimes it helps me to think of my child running ahead of me through a beautiful field of wildflowers and butterflies; so happy and completely caught up in what he is doing, that by the time he turns around to see if I'm behind him...I will be"
~Anonymous

Although I replaced the "she"s with "he"s, I was stunned to finally find the quote that I had spent months searching for! I truly believe it was a sign from our special SMA angels. Thank you Marshall & Maryclaire. And, to Aiden, who was born on the same day as Marshall and shares his angel date with Maryclaire. We don't believe in coincidences - these things happen for a reason!

August 2, 2003
Just wanted to say that yesterday we received a plant via the mail from a caring friend in Ohio . . . so, those of you who live far away and think that you can't contribute to our garden from yours are wrong! Please consider over-nighting something, as it will be MUCH more meaningful if it's from YOUR garden!

L, M, & M ^i^

July 31, 2003
I just wanted to clarify something . . . We've been asked on a few occasions about August 16'th. There really is no invite list - we did distribute some flyers to those whom we don't believe to stalk our journal regularly - so that's why not everyone got "invites". The invite is open to all! If you feel that Marshall touched your life and you'd like to add something special to his garden, then you are more than welcome to do so! We just ask that you let us know how many will be coming on that day so that we may plan accordingly for food. We would love for everyone who knew Marshall (and those who came to know of him after the fact) could come and add something to his garden. We would prefer something from your own yard, but if you must buy and bring something, then that is okay too. It also doesn't have to be limited to plants either - if you come across something meaningful that is pertinent to Marshall or your relationship with him - (dragonflies, butterflies, hummingbirds, horses, rainbows, etc. - stepping stones, plaques, etc.) and you would like to add something like that to the garden, then you are more than welcome to do so. There are no rules here. We just want this little place to become one that says "Marshall". It is for him, in honor of him, and in total and complete loving memory of him. So, please feel free to join us and add something to Marshall's garden while giving Mark and I a special place to sit and remember him. Also, if you can't make it on the 16'th, you are welcome to add something to the garden anytime! Thanks!

L, M & M

July 30, 2003
We just wanted to say that we've gotten a bit of news on our "procedure". We now have dates of everything that will be occurring over the next few months. We are hoping for the best but preparing for the worst - that way we won't get too disappointed if something should go wrong. We are getting accustomed to the fact that we don't always get what we want. We are no strangers to the saying "It's not fair!" NO, it certainly isn't and we are learning that with each passing day. But, we haven't lost hope and we will try our best to keep the faith and are just praying for the best - we hope you will do the same for us! We have decided that we will wait to share any "news" if there is any at all. If and when there is something to share, we will do that when we're good and ready! :o)

On another positive note, we received Marshall's bench today. It's just beautiful - it is actually much nicer than I thought it would be. I fell in love with it as soon as I saw it. I'm so glad that it's here. For the past 2 days, I've been thinking of how dreary the garden looks - everything's green, nothing blooming, and no bench - which was supposed to be the center of the whole thing! Tonite, while I was outside, running my fingers over the letters "MARSHALL" on the bench, I felt that someone was watching me and when I stood up, I turned around and I realized that 3 plants had new flowers on them. You see, this is significant because yesterday there were NO flowers there. The garden is really beginning to come to life - courtesy of our Little Man. I can't wait until all of the plants have been put into the ground and the garden is complete. It is going to be so beautiful. We hope to see everyone on the 16'th for a time of remembering and planting!

Just a reminder, please be thinking of and praying for our friends who are having a hard time struggling with SMA right now: Cole, Charlie, Nathan, and others. And please keep supporting us as we fight for that cure. If SMA were gone from our lives, I wouldn't have to get excited about a stupid granite bench with my child's name on it. I might be excited because he'd be learning to walk instead - or even that he might still be alive. Please, please, please help us find that cure.
www.curesma.com and www.smasupport.com
I'm meeting too many families who deal with SMA daily, and I know TOO many bereaved parents (courtesy of SMA) and it's all starting to scare me. Please SMA, please, please, please disappear from our lives forever and ever.

L, M, & M ^i^

July 27, 2003
"Faith is the strength by which a shattered world shall emerge into the light."
~Helen Keller

July 26, 2003
Just wanted to ask you all to say a prayer for so many families. If you came to this site today, my guess is that you care about us, but that you also care about fighting SMA. Recently, we lost 2 babies (that we know of), and we know of one who is struggling quite a bit right now. We also have heard of 2 new diagnoses, and of course, there are TOO many bereaved parents to count anymore! I hate this disease more than anything in the world and I am SO heartbroken every time I hear that it has claimed another life, or sentenced another innocent child to a short life of being trapped in a body that does not work. I often wonder when the madness will end. We pray that our little guardian angel can help bring some sort of peace back into the lives of all these families (including our own.) SMA continues to terrify, control, and decimate innocent children and their families. I know it terrifies us. It definitely controls us. And, it has certainly decimated us. It also drives us to continue the fight; and fight we will. I just wish we knew how to make it disappear. I'd give anything in the world if Marshall could be back here right now, in a body that would do justice for him. Unfortunately - he's gone from this earth forever. Forever is a long time, a very, very long time. My heart is still broken with each passing day. I know that Marshall lives on within our hearts and truly, that is a blessing - but we would have liked to believe that in our arms is where he belongs. Damn you, SMA. You continue to steal our babies left and right. You are unforgiving, unmerciful, and just so WRONG! When will this end?

Please keep all of the SMA families in your thoughts and prayers; for that is all we have right now - a little ray of hope through thoughts and prayers, and nothing else.

*Charlie, we're thinking of you and praying for your whole family.

L, M & M ^i^

July 25, 2003
Since so many of you took the time to write those letters in support of increasing funding for SMA a while back, I wanted to share this with you:

Dear Members and Supporters of Families of Spinal Muscular Atrophy,

Our grassroots lobbying efforts have paid off! The House of Representatives has approved an Appropriations Bill which includes SMA report language and the Senate Appropriations Bill has been submitted for vote with SMA report language included. For more information see http://www.fsma.org/lac12.shtml

Thank you to everyone who took the time to write a letter, send an email, make a phone call, and participate in the SMA Day on the Hill! We could not do this without your support!

We invite you to keep the momentum going by keeping in touch with your Members of Congress. Invite them to your fundraising events. Send them regular notes and emails about key SMA legislative activities. Meet with them in their district office. Please call or e-mail me if you need any help in your lobbying efforts.

Thank you again for your efforts.

Kimberly Symonds

kimberly@fsma.org

(330) 264-0974

July 23, 2003
. . . NEWSFLASH . . . NEWSFLASH . . . NEWSFLASH . . .

Thursday morning - that would be tomorrow - at 7:20AM, there is going to be a bit about SMA on the radio, on 93.7 FM. Amy Benoit wants to bring awareness about the disease, and also tell how one group of generous little girls have helped make a difference in the world of SMA. I have no idea who is doing the talking or telling the story - and I have no idea what they will actually say - but it's worth a listen, so try to make yourself available to a radio at that time! Thanks!

L, M & M ^i^

July 22, 2003
We just wanted to thank Amy Benoit, friend of my cousin-in-law (if there is such a thing!) for hosting a Hula party for her little girls and their friends. She has decided to donate funds raised to FSMA in Marshall's memory! The party was on July 20'th, and they raised a wonderful total of $250 for FSMA. Thanks Amy and girls! It means so much to us that you were willing to do this for us and for all of the other families who need that cure! We really appreciate the efforts of you and all of those who care to help us - and there are SO many out there, fortunately! The thing that touches our hearts the most is that the children have been so generous with their donations! It's natural to expect adults to be generous but it says a lot to me when a child is willing to give up her birthday presents in favor of donating to a VERY needy cause! So thanks again everyone who participated in this event!

*Today marks 7 months without Marshall. On one hand I think that it has felt like FOREVER. Then I think - GEEZ, 7 months already!?!? I can't decide where I stand on this because any amount of time I spend without Marshall is too much time at all . . . We miss you Pal.

L, M & M ^i^

July 20, 2003
Just a reminder - Fundraising Committee is meeting at our house in Douglas to write Thank You notes to all of our sponsors. This will take place Monday night, July 21,2003 at 7pm (or earlier if you want to come right from work.) See you then!

Us

July 20, 2003
We wanted to thank the mysterious "leaver of the gift" on our porch this afternoon. I have to say - I know you picked it up because of the dragonfly (which is awesome - our Little Man in true form!) But, what you probably didn't know was that the lady bug at the bottom also has special meaning to us. The ladybug is the known little symbol given to us by Taylor Costa, to her best bud, Peg.(www.oursmaangels.com/Taylor) So, that gift just allowed me to remember that Taylor and Marshall are together right now and I suppose they both wanted to make themselves known today! So, thank you for that little reminder. I've already put a picture in that frame . . . and it just looks so beautiful. Marshall was so beautiful; as was Taylor . . .

July 19, 2003
The following note was sent to me from a Mom in Florida. We've been writing on and off for a few months and have become fast email friends. The following is pure evidence to me that Marshall is around all of us; even in Florida! I got chills after reading this and I think you might too. Here's Lori:

"My husband and I took Spencer to the beach today. While we were walking along I saw a man & woman pushing a stroller towards us. They were a young couple and as they were walking they came across some other folks they knew. They were all hugging one another and looking at what must have been a very young baby in the stroller as it was in an infant carrier and I could see no evidence of it due to its size. The young mother looked a lot like you so it made me think of you and Marshall. A couple steps later I told my husband I would like to pick up some shells to put on a frame for the pictures we were going to be taking today. Then I mentioned how I would really love to find some sand dollars to put on the frame as well. My husband said it would be hard searching as they aren't found in one piece very often. Not 4 steps more I just happened to look down and found a perfect sand dollar as a huge breeze passed by ! I got chills and the hair on the back of my neck stood up. I know it was him. Tears flooded my eyes and I simply said "Thank you Marshall." Later we were eating lunch at our favorite pizza place by the beach and that same young couple was eating there as well. The young mother was holding a little boy with bunches of black hair and those same chunky cheeks Marshall had. I asked how old he was and she said 7 weeks with tremendous pride. And his name was Daniel Marshall!! I am still in awe."

Lori, thank you for sharing this story with us! You know how meaningful it is for us to know that Marshall still touches the hearts of so many. He is around us every day and we LOVE knowing he's around so many other people also! He continues to do his work . . .

July 18, 2003
Happy Birthday to Charlie Cowan! http://www.caringbridge.org/mn/charlie/
Charlie is celebrating his second birthday in heaven. His mom tells me that he is like a big brother to Marshall so we know they are taking good care of eachother. (Kind of the way their Mommies do down here!) We love you, Charlie and we hope you enjoy your day!

L, M & M ^i^

July 18, 2003
Yesterday, I was talking with my adorable, special 9 year old cousin, Nicole. We were on the lookout for dragonflies - pictures of them. She heard me mention that I wanted to get another tattoo for Marshall (this time a dragonfly). Anyway, she said "Lau, if you get another tattoo, you'll wear Marshall in THREE places on your body!" I said "How so?" And her reply was so beautiful, so honest. She said "Well, you'll have the new tattoo, you'll have the old one, and you know that you wear Marshall on your heart too!"

How this child has this type of insight at just 9 years old, is beyond me. I love you, Nicole! You are so special to me!

Love,

Yau

July 18, 2003
I just want to take a minute to say thank you to all of those who sent birthday wishes (even though the birthday itself was unwelcome . . .) And, a special thanks for those who recognize Marshall's presence in their hearts and lives each day. There are a few true believers - most of who got to know and love Marshall while he was with us here on earth, but I am also continually amazed how Marshall has touched those who didn't have the pleasure of holding his beautiful being while he existed here on earth with us. I guess it's like what Nicole said . . . he lives on inside our hearts. It makes me feel good inside to know that Marshall graces the lives of others, and that when he does make an "appearance", he is truly recognized. Marshall is so good at showing up at the most opportune times! Some of the things he has done are nothing short of amazing. (You will get to see them when our story gets published in the new book in late December! We'll keep you updated on its progress . . .) Anyway, I have a friend who tells me that everything happens when it is supposed to and that "there are no coincidences." We must believe that Marshall has his own ways of making himself known and that everything happens when it is supposed to (whether or not we are ready - we truly are NOT in control here and I firmly believe that!)

We got the coolest thing in the mail today. It was an invite to the home of friends of ours for a touching event. They are planning a butterfly release in memory of their precious girl. We think this is an amazing and beautiful thing for them to do and we are touched that they want to include us. We are definitely going and can't wait to be a part of what promises to be a beautiful experience. I'm going to hold onto my special heart the whole time we're doing the release . . .

Marshall D. we love, love, love you so very much! We ask for a bit of assistance from our favorite guardian angel, as we undertake a new task. Mommy is nervous because it is unfamiliar to her but we will try to have faith that things will work out alright. We are so very thankful for the people in our lives who are making every effort to try to help us with our future plans!

NO thanks to the folks at Harvard Pilgrim Health Care HMO who have NOT been helpful to us in the least. We do have a wonderful case manager who is encouraging us to further appeal this issue. We've decided to take this matter up with the state of Massachusetts and hopefully we will get some more positive results. In the meantime, we are moving forward with our intended plans. Please keep us ALL in your thoughts and prayers.

We miss our little Slimmie Slim SOOOOOOOOOOOOOOOOOOOO much.

Tons of Smothers and MMM (BHK & ILY) for MD
from Mommy & Daddy

*Please continue to keep Cole Webb in your prayers - he is still struggling, and getting so tired. We love you, Angel Baby Cole.

July 17, 2003
Happy Birthday in heaven to Nathan Barnett, who shares the same birthday as me! Nathan, I hope you had a nice day with all of your buddies!

July 16, 2003
Envy. Or is it jealousy? I'm not sure, but I find it ironic - as much as things in my life have changed from exactly one year ago, those are the feelings that I felt last July 16'th, and those are the feelings I've got exactly a year later. The thing I find interesting is that the feelings exist for the SAME reason - only this time in a slightly different and more permanent capacity.

On July 16, 2002, my best friend and her husband welcomed their son into this world. This was special for me, as it was the day before my own birthday. But, there I was, still a month (exactly!) left to my own pregnancy. I knew my own child would be arriving soon enough, but I was a bit envious of my friend, who had already done the hard part - and now had her precious son in her arms. The waiting was SO hard for me. I wanted to meet my son SO badly! I was also a bit nervous about the upcoming labor (which turned out to be a day in the park anyway!) Mostly, I saw the mother/child bond that existed between my friend and her little boy and I was envious that my child was not yet here to share in the moment. Ah, little did I know that a year later - he also would not be here to share in the moment once again! So, here it is - a year later, July 16'th again. And again, the feelings are here - envy and jealousy because my son is once again not here; and sorrow for what was supposed to have been. When I am around her little boy, not a second goes by, that I don't think of Marshall, and why couldn't he be doing all of the things that this little guy can do . . . like drinking from a cup, sitting up, rolling over, learning to eat solid foods, blowing kisses, waving, crawling, and probably by now - walking. I feel badly because if Marshall didn't ever encounter SMA, I'd have been a much bigger part of this little guy's life. Wasn't that the way it was supposed to be? In the old days (last year . . . sure feels like the old days!), I -cluelessly thinking we would both have healthy children and breeze through parenthood- would envision us taking walks together, the boys napping together, learning to walk together, sharing together, playing together, and just spending time together. We were supposed to share our experience with motherhood with eachother. That's how it was supposed to be, wasn't it?? I've since realized that the way I wanted things to be - and the way that things are really supposed to happen - don't always work out together in the same manner. Believe it or not, I STILL believe that there is some greater plan out there. There has just got to be some reason that Marshall is not here on earth with us and can only live on within the hearts of those who loved him so. I can't understand it though and I won't pretend to try. But, I will believe in it with the hope that some day soon, I will be reunited with my angel - and that sweet day will be the day that my heart is healed. Until that happens, it remains a broken, sad mess, trying to salvage the memories and keep our Little Man's memory living within us. I try so very hard to hold onto what is good, and block the flashbacks from my mind. I want to be continually reminded that Marshall lives within us and that he is all around us. I feel that my purpose in this life is now to create awareness for SMA, and do what I can to fight it. And in the process, I make damn sure that my son will NOT be forgotten. This is the reason I carry on; there is no other explanation for my existence here on this earth. I am a martyr for Marshall's memory. I know that there are others also, and for that, I am so thankful. I know that our little birthday boy, Gage, will grow up knowing all about Marshall, and that he was his best friend for 4 months and 6 days. This will happen courtesy of his mother - who also will not let Marshall's memory die and without a doubt, will foster the knowledge and thoughts of a best friend whose time here was brief. So Gage, on this - your first birthday - I wish for you to feel the presence of the angels (but Marshall especially) who will guide you and protect you and live on within your heart for eternity. Know that while it is very hard for me to be physically be around you and continually live through "what might have been" thoughts, I do miss you. I hope that you have been happy and healthy. I also hope that my pain and "envy" will disappear with time. You have a bright future ahead of you and with time, we do want to be a part of it. I hope Marshall will continue to visit you forever and ever! Happy Birthday to you, Gage.

Now, as you might have figured out from this entry, tomorrow is my birthday. While birthdays are normally happy days, this one brings great sadness for me. I feel so horrible, that I get another year - when Marshall couldn't even have one. I don't want another birthday. To me, there is nothing to celebrate. The ONE wish that I have cannot possibly be granted. Because of this, my birthday feels so useless to me, and so very unwanted. The most positive thing I can get out of it is that it brings me another year closer to being reunited with Marshall.

I will try to look on the positive side here and say that on this, my first birthday since becoming a mother, I am SO very thankful for the 4 months and 6 days that I did get to spend with Marshall. That was truly the best gift in the whole universe and I am so blessed to have been his Mom, even if for such a short time. Marshall continues to be my everything, my whole world. I feel him within me and he is my sole source of inspiration for everything I do. I still love him with my whole heart and soul.

I just wish SMA would go far, far away. I wish that all of our children stood a better chance against beating it. I wish that they wouldn't suffer and that the cure would not be so far away. I know it's close - but NOT close enough.

We are still so new to this journey of grief. There are some days we feel that we are getting accustomed to this process, and other days - just functioning seems impossible. We continue to go through the motions every day, but continue to be dying inside, every second of every day. We carry on and try to resume some sort of "normalcy" but at this point, we have to ask ourselves, "Exactly what qualifies as normal now?" We don't even know. Please continue to hold all of us in your thoughts and prayers. This continues to be a long, hard road - one that we hope will ease with time.

Please hug your children extra today. We long to hug Marshall so much every day, but will never be able to do so again. Please appreciate them every second of every day - unless you've lost a child, you truly can't possibly know how lucky you are to have them.

Be well everyone.

Laurie, Mark & our guardian angel in the sky, who would be 11 months old today ~ Marshall ^i^

"Faith is the strength by which a shattered world shall emerge into the light."
~Helen Keller

July 14, 2003
So often, I get asked about our pal, Cole Webb, from St. Louis. Cole was born 3 days before Marshall. (He also has Type I - you can visit his site at www.oursmaangels.com/cole) I thought I'd better do an update here on him. Cole hasn't been doing very well. In my heart, I know that his body is getting tired. I just talked with his mom this morning, and Cole had a terrible day on Saturday - he threw up and most likely aspirated some into his lungs. He is on oxygen full time to keep his levels up to a comfortable zone. He is sleeping more and not tolerating his therapies the way he used to. It is getting scary for everyone who knows and loves Cole. No child deserves to go through the horrible effects of this disease.

I've been in touch with Cole's Mom since right after Marshall died. Prior to that, I hadn't heard of them. So, it's been almost 7 months since we began talking. Though I've never met them personally, Cole has become one of "my own". He graces my thoughts hundreds of times daily. The joy he has brought his parents has become my joy as well; unfortunately, the same goes for the pain of knowing his struggle. Please keep this family in your thoughts and prayers. We wish them nothing but love and peace.

We're here for you Kristin, Dan & Cole - just say the word.

*FYI - Kristin reminded me today, that August is SMA Awareness month. (We find this interesting - since both of our boys were born in August.) You can bet you will be hearing from Marshall's family during that time - we are ALWAYS looking to raise SMA awareness. Please keep fighting everyone, NOW - more than ever - is the time for that cure!

L, M & M ^i^

July 13, 2003
Just wanted to thank my little pal for making himself known so much lately. Marshall's little glow has so far been noticed all the way in Minnesota, and in Ft. Myers, FL - and everywhere in between! It's nice to see so many "believers" everywhere - we KNOW Marshall is around us but it's great to know he's around you also!

I love you so much, MD - my heart is so lonely for you. Keep coming around like you've been, okay? GS, Little Man!

Your Mama

July 12, 2003
Anyone wishing to help us thank our many sponsors for our events; please meet us at Tante Celia's house in Sutton on Monday evening, 7/21 at about 6pm or whenever you can arrive. We have some 500-600 thank you notes to write! I'm sure we won't finish them that evening, but we should be able to get a good jump on them. Thanks everyone, see you then!

L

July 10, 2003
Okay, we're back online - Here's what happened:

My loving husband decided that he needed to build a front room (more of a 3 season room - with glass windows and doors). It's really coming along quite beautifully; but the outside of the house is really a mess - all torn apart and completely open to the weather. Anyway, he mentioned the other day "If it starts to rain during the night, WAKE ME UP"! It didn't rain that night so I didn't wake him up. BUT, yesterday, it was raining for a while - HARD! Well, in the evening when I went to my computer, it was sitting in PUDDLES! As it turns out, the roof leaked (we knew it would) but we didn't think that the ONLY spot it would leak would be above my beloved computer! So, the whole thing was literally sitting in water. By the grace of God and our little guardian angel, we only lost the scanner and keyboard. Everything else works just fine at this point. In another unrelated incident, I did also get somewhat electrocuted today at work so our luck just keeps getting better and better! Leaves me wondering . . . hmmmmm, what will happen next???

July 9, 2003
You just have to love the stupid laws that the state of Massachusetts has regarding health care coverage for infertility treatment. Mark and I are dealing with yet another challenge - I know, the story of our lives! (The people who make these laws just don't take genetic illness into consideration - especially a fatal genetic illness.) I've thought about spending more time fighting these for everyone - not just for us (because others must be facing the same issues also) - but right now I'm more interested in fighting SMA. Besides, once there is a cure for SMA, there will be no need for infertility treatment for those who carry genetic flaws.

If anyone has a clue on how I can get health insurance to pick up the cost of this, please let us know! I thought I'd tried everything but maybe I haven't. I am going to be persistent - I have 2 more chances to get this right.

I long for the days when I was clueless about everything. I wish we could just have more children without the risk - but the risk itself is too great - one that we're not willing to take knowingly.

Please keep us in your prayers.

L, M & M ^i^

July 9, 2003
Hello everyone, this is Stacey, Laurette's friend. She wanted me to let everyone know that her keyboard is currently waterlogged. She can read everyone's emails, but can not respond until she buys a new one. She will be in touch soon. Thanks!

July 8, 2003
For some reason, I've not been able to receive email from my info@marshallpotter.com email address, so for any correspondence, please use frosty4@gis.net.

*Okay, I can understand the toys, flowers, baseball mit and glove, and even the seashells. But, I can't for the life of me figure out the marbles! Anyone want to help here??? I've been working on this for about a month and I just can't figure it out. Thanks!

L, M & M ^i^

*Just wanted to send a special thank-you to my friends Kathy & Gina (Moms to Charlie & Andrew, respectively). You two have been wonderful since the beginning but with each day that goes by, I find myself more and more thankful for both of you! I love you guys!

July 8, 2003
Most of you will get this in the mail but here it is anyway:

Please join us in honoring the life of our son, Marshall,
on what would have been his first birthday:

Saturday - August 16, 2003
Any time after 1pm, with food being served around 4pm at
Our house

*We would like to invite you to bring some perennials from your yard, to plant in the memorial garden that we have created in Marshall's memory. It will be an honor for us to have Marshall's garden be made up of so many different flowers and plants, which will be symbolic of the love that comes from so many people.

We will also be drawing the winning name for the SMA Angels x-stitch blanket generously crafted and donated by Maria McEachreon and we plan to release balloons to heaven that afternoon in memory of Marshall and all of the children who have lost the battle to SMA
(Time for this has yet to be determined! We would have liked to do this on the exact moment that Marshall entered this world one year ago but we thought attendance would be poor at 5:56am!) You can bet we'll be at the cemetery at that hour to let our balloons go (and anyone else is also welcome at that time) but we'll do it again later in the afternoon!

RSVP - regrets only- once you get your notice. Hope to see you here. Thanks!

Laurie & Mark

July 5, 2003
Said Jesus:

"It is not the will of my Father who is in heaven that one of these little ones should perish." ~Matthew 18:14

July 2, 2003
Yesterday we lit candles for Mia. One on Marshall's gravestone, and one here at home. I am heartbroken for her family and so very angry at SMA for stealing another special one. I'm just at a loss for words and can think of nothing else . . . I'm just so sorry.

July 1, 2003
Another SMA Angel has earned her wings. Mia Jasmin Haq passed from this earth at 2:48pm today. I am so heartbroken for this family. Please keep them all in your prayers. Mia is a beautiful angel now, but I can't help from feeling SO SO SO sad (and angry too) that SMA has claimed another victim. Mia is the second one this week. When will this stop? Why, Why, Why our innocent children???

Please keep Mia and her family in your prayers.

L, M & M ^i^

"A life so young released to heaven . . . Left on earth, we wonder 'Why?' But some are sent among us briefly; Some have spirits meant to fly." ~Author Unknown

June 30, 2003
This from Laura Stants: (creator of www.oursmaangels.com)


Candle Lighting and Prayer for our SMA Community.---------------------------------------------For those who would like to participate...let's each light a candle and say a prayer at 8pm (Eastern) 7pm (Central) 6pm (Mountain) and 5pm (Pacific) on Tuesday July 1st. There are so many little ones fighting so many struggles right now, and there are many of us who would like to send a united prayer for them, their families, and for all whose lives are so closely linked with ours.

-----------------------------------------------------------

This from Marshall's Mom:

Let's remember all of the children whose lives have been affected by SMA - past, present, and future. Thanks everyone. We'll see you at 8pm with the candles.

L, M & M ^i^

"We enjoy warmth because we have been cold. We appreciate light because we have been in darkness. By the same token, we can experience joy because we have known sadness."
~David Weatherford

June 30, 2003
I've gotten several emails from those who are wondering how the event was on Sunday. It was a great success and I want to extend a HUGE thank you to everyone who participated. I apologize because it started late and as a result, also ran late. But, other than that, it was a wonderful event, bringing in close to $10,000 - bring our grand total to somewhere close to $30,000. We have one more minor expense to deduct still, and then we will have a more accurate total. But it is safe to say that it was a huge success!

Thanks again to our committee - lead by our very own Giggles the Clown! You all have been amazing and on behalf of Families of SMA, I thank you! We're going to have a "thank-you card writing party", so we hope you will join us for that at some point! We'll let you know more about that really soon! Other than that, please remember to join us on 8/16 for Marshall's birthday celebration (and "wishing he could still be here party".)

Take Care Everyone.

L, M & M ^i^

June 30, 2003
Please pray for Mia - another child affected by the cruel unfairness of SMA. Mia crashed recently (possibly yesterday?) and was without oxygen for an extended period of time. The outlook is not good for Mia. Please keep her and her family in your prayers.

June 26, 2003
Heaven gained another SMA angel yesterday. Cole Webb's mom emailed me with the news. I didn't know the family but the little boy's name was Christian. May God Bless Christian and his family as they go through this process that TOO MANY of us unfortunately understand. Please keep his family in your prayers.

Please, Everyone, continue to support the causes that are helping to find that cure. Every time we lose another child to this dreadful disease, we are reminded of how very important the cure is. We need to find it NOW!

"Each Life Affects Another's"

We may not always realize that everything we do, affects not only our lives, but touches others too.

For a little bit of thoughtfulness that shows someone you care, creates a ray of sunshine for both of you to share.

Yes, everytime you offer someone a helping hand, everytime you show a friend you care and understand, everytime you have a kind and gentle word to give, you help someone find beauty in this precious life we live.

For happiness brings happiness, and loving ways bring love, and giving is the treasure that contentment is made of. ~Amanda Bradley

June 24, 2003
Now that we've been back from DC for a few days, I've had a lot of time to think about many things that went on there and I figured I'd share them here. My last entry about this conference was just not long enough. First off, I want to thank all of the folks from FSMA who made this event what it was. I can only imagine the amount of planning and work that went into this to make it the success that it was. I also want to thank all of the families for attending the conference and supporting FSMA all the way. I do believe this is a great part of how we will find that much needed cure. I also wanted to thank the Wyatt Kyle Sutker Foundation for putting on a great luncheon on Saturday for all Type I families. This was a great time of discussion and sharing with others who are parenting or have parented special Type I angels, like Marshall. You can visit Wyatt's Foundation at www.wkswithsma.org

Also, another thank you to the Fimbel's and Andrew's Toybox for providing gift bags for all of the attending children at the conference. Visit their site at www.andrewstoybox.org And still another thank you to the Reilly's, smasupport.com, and to the Jacob Isaac Rappoport foundation - www.ourshootingstar.com - and to anyone else I may have missed, for sending many families to the conference without having to pay the fees. I know this was a help to many, many people who otherwise would not have been able to attend and each person's attendance was SO important.

I wanted to share some of what I saw this weekend that still sits within my heart and probably will be there for a long time to come. The fundraising video on Sunday morning was amazing and I definitely want to obtain a copy of it for our future events. It was a beautifully put together slide show / video to display at events. It depicted kids of all ages, types, and abilities. It was set to music (which made it that much sadder to watch). I think it will be very effective in the future and I thank everyone who had a hand in putting that together (The Swanson Family, I think?) I didn't see a dry eye in the room after everyone had watched it, though my eyes were clouded by my own tears, so I may be mistaken!)

The continuous power wheelchair races throughout the weekend in the lobby of the Hyatt Regency were absolutely priceless. It gave me great joy to see the levels of independence that many of the Type II's and III's have, despite being affected by an illness of this magnitude. Mark and I were both continually amazed with these kids. We enjoyed meeting so many little ones. It warmed my heart to see Skyler's happiness while playing with her buttons and putting them into cups with the help of her Mommy. I also fell in love with Lily's big grin, the minute she flashed it at me from behind her Bi-Pap! Jenny does the cutest blown kisses you've ever seen! And, Carolyn has a level of spunk and ambition that made me tired just watching her! Little Callie was precious while eating her lollipop - I think she ended up with more in her lap than in her mouth! These children (and many, many others) are a HUGE source of inspiration for Mark and I. They are the reason we will keep fighting until we can stomp out SMA for good. We think that this is just a small way we can honor Marshall - by fighting what has become our nemesis.

In addition to the children at the conference, there were a group of parents and grandparents toting pictures, proudly displayed everywhere they went. They had pictures because that is all that physically remains of their children as a direct result of this monster that we call SMA. There was a powerful feeling of great understanding and support when we were around these parents. Words weren't necessary because it was understood that these other parents shared our feelings totally and completely. We were thankful for their support but brokenhearted that they know our pain all too well. SMA is such a cruel disease. We want to remember all of the angels here but unfortunately, there are really too many to list and so I won't try to do that. But, I do want to thank the few bereaved families who took the extra time to spend chatting with us. It meant a lot for us to be able to share about Marshall and to learn about your children in the process.

I've shared a few websites already in this entry but I want to add one more. www.sawyersmithfoundation.com I had the pleasure of meeting Sawyer's parents who do an amazing job of honoring his memory while working tirelessly to help us fight SMA. Please go and read his story, along with the others that I have posted in the upper part of this journal entry.

We ask now that you continue to support our fight. We are thankful that so many people were at our big fundraising event but also a bit disappointed at the number of those we didn't see there. Perhaps you did not realize how important it was for us to have you there. We hope that you will at least remember Marshall and honor him in your hearts the way we do; it's all we can ask of you. We would like it if everyone who knew Marshall remembered him forever and wasn't afraid to speak about him. He was our whole world for several months and we will never, never forget him - we hope you don't either. We also plan to aid in the fight against SMA until we are no longer needed to do that - until the day that the cure is found. We will be needing lots of love and support over the coming months (and maybe years!) to reach these goals.

I am proud and thankful to belong to the greatest family I know. It helps us to know we could count on you when Marshall was here and that we still can - even though he's no longer on this earth with us. Thanks for all you do, everyone. With love and gratitude,


L, M & M ^i^

June 23, 2003
To those of you (family and friends) who live in the area (and even those who don't are still welcome to come!), please mark your calendars for August 16'th. Originally, we wanted to have a motorcycle ride that day, but that is going to require more time than we have right now. The motorcycle ride will take place another time. For now, we want to do the best we can to celebrate Marshall's first birthday on Saturday, August 16'th. This will also be a celebration for our fundraising committee who worked tirelessly for 6 months, planning our events.

We plan to provide most of the food for that day. We will also draw a winner for the x-stitch blanket made by Mom's cousin Maria. This raffle is still open at $2 per chance.

We anticipate this day to be a difficult one. Marshall's birthday was the happiest day of my life; and to know that it has been taken from me is devastating, to say the least. Today, I drove by the hospital where he was born and it triggered thoughts of August 16'th of last year and I had a super-meltdown in the car. I miss him so much it hurts. So, Mark and I decided we wanted to spend this day surrounded by those who loved Marshall like we do! We're contemplating having a balloon release or maybe something else - not sure. This would be a GREAT day to bring something dug up from your garden to add to Marshall's - but only if you want to. Just keep it in mind.

"We make a living by what we get; but we make a life by what we give" ~Norm MacEwan

L, M, & M ^i^

June 22, 2003
So, we are back from Washington DC - back from the FSMA conference. Both of us found this weekend to be extremely fulfilling. It was emotional; sad to see how many children really are affected by this disease; and knowing that they weren't all able to attend the conference. It was sad to see how many bereaved parents there really are out there. It was sad to see the newly diagnosed children and their parents struggling with decisions (just as we have all had to do). But, it was a great feeling to finally put faces to the MANY, MANY names of the people who are Families of SMA. We met many other parents whom I have been speaking with for months. We met others we had never known of. Some people had a lot in common with us, and others not much was shared. But, we all have the common bond of SMA and the support there from everyone was incredible. It was promising to hear about the strides that are being made toward finding that cure. We know it will happen - some day - hopefully sooner rather than later.

Kim (Mommy to Skyler - www.oursmaangels.com/skylerbing) was nice enough to make buttons (the pins) with pictures of our children on them. This way, we could proudly wear our children and display them all around the conference. Mark wore Marshall's button because I couldn't wrestle it from him! But, I proudly wore the buttons of Charlie Cowan (www.caringbridge.org/mn/charlie)and Cole Webb (www.oursmaangels.com/cole) because their parents couldn't make the conference. I did have to explain to everyone who asked - that I wasn't wearing my child's picture, but it gave me a perfect opportunity to share a bit about the lives of Charlie and Cole and I was happy to do this in the absence of their parents. I also wanted to share in this journal entry, that Marshall and Charlie followed me everywhere this weekend - I saw their names EVERYWHERE I went! I even saw C. Cowan written on a truck. If that doesn't say Charlie, I have no clue what does! Marshall made himself known a bit less obviously than Charlie did, but he certainly was around us at times - right there with his pal Charlie! So thank you to my 2 special and beautiful boys for being near me all the time!

Also, there is a special family I met at the conference. Their son Nathan is newly diagnosed as a Type I. They are now faced with the terrible decision of what to do next, as well as everything else that goes along with this horrid disease. I assured her I would support her no matter what and I will. I spent a good part of this morning just talking with her and we shed many tears in the process. Little Nathan reminded me so much of Marshall and I wanted to pick him up and shelter him from SMA but I knew that I couldn't do that for him. Seeing him really brought me back to the time when we were dealing with Marshall's diagnosis and I remember that I began wishing I could turn back the clock because not knowing what Marshall had was better than knowing he was fighting a losing battle. I heard this on the radio on the way home and it really fit my thoughts . . . "Sometimes I wish to God I didn't know now the things I didn't know then"

Please say a prayer for Nathan and his family. His parents need strength right now. I remember this stage with Marshall and the decisions that go along with it. It is not easy at all and I am so heartbroken for this family. *Tiffanie, please contact me when you return.

I will leave you with that for now. Be well Everyone.

L, M & M

June 16, 2003
Happy Belated 10 month birthday to Cole Daniel Webb. We wish you comfort, happiness, and all the love in the world! Sorry you didn't feel so great on your special day, Cole - we hope you are okay for today. Thinking of you always,

Laurie, Mark & your guardian angel in the sky, ^Marshall^.

June 16, 2003
*Marshall, you keep flying around like you've been doing for the past few days . . . I love to see you go zipping by me all day long. I know you're close, Little Man! Pat told me that those special things were you, and at first I thought she was crazy, but they show up at all the right times - I know she was right - they are you! We love you, Slimmy Slim!

Mom & Dad

June 16, 2003
Happy 10 month birthday in heaven to the Little Man. Lots of tears for you from Mom today, Marshall. Love you.

June 14, 2003
On behalf of Families of SMA, I want to thank everyone for their participation in our event last night. The guestbook includes 289 names, but I know there were more than that present! We won't be posting a "grand total" yet, as many of you have asked for us to do. The reason is that we have one more event on June 29 (The first Annual Marshall Potter Golf Tournament) and we still have to pay the country club for the greens fees and we will be getting many more entries for raffle tickets, so we anticipate the total to rise a bit more. So once the golf tournament is over, we will then be posting a final total. I can tell you that it IS over $20,000. It's not quite the amount we would have liked to see, but we are still proud of that amount. We worked hard to achieve it and will be honored to send it in to FSMA in Marshall's Memory, as soon as the golf tournament is over. Currently, there are no more vacant spots in the tournament - 144 golfers was the limit set by the country club, and the spots are all full now! If anything changes there, we'll let you know!

Last night was a boatload of fun and it was nice to celebrate Marshall's life. We were quite pleased to see several families from the SMA community come out to support us at this event. YOU are the ones we are doing this for and we thank you for inspiring and supporting us all the way! We also had Elissa Al-Chokhachy (author of my favorite story - "The Angel with the Golden Glow") present last night and she sold her books and autographed them upon request. She was generous enough to donate 50% of her profits to FSMA. Thank you for your generosity, Elissa - it was great to meet you and we are all so glad you came! To my family and friends, you sure know how to party, and we are so appreciative of your generosity and your continuous expressions of love and support for Marshall, Mark and me.

Thanks again, everyone! We'll see you on the 29'th for golf!

Laurie

*Marshall, I know you were at the event last night too and I saw you all over today! We miss you Little Man - Thanks for blessing our lives with your presence.

June 13, 2003
Please join us tonite for "A Celebration of Life in Memory of Marshall Potter", being held at the Leicester Country Club, 1430 Main Street in Leicester, MA from 6pm-12am. Tickets are available at the door for $15/each - children under 12 are free. Food, raffles, entertainment and FUN! All proceeds to benefit Families of SMA (www.fsma.org). We hope to see you there!

Laurie, Mark & Marshall (the Little Man of Honor!)


"A small boy looked at a star and began to weep. The star said 'Boy, why are you weeping?' And the boy said 'You are so far away - I will never be able to touch you.' And the star answered 'Boy, if I were not already in your heart, you would not be able to see me.'"

~John Magliola

June 12, 2003
Months and months of planning, meeting, organizing, acquiring, cutting, stapling, writing, numbering, soliciting, brainstorming, giving, receiving, talking, sharing, remembering, crying, laughing, (and who could forget EATING?!) have finally come together. Our big event is finally here. Sitting here writing this entry is something I did not imagine having time to do; but due to the efficiency of my family (and friends - but hey, they're all family!) there is nothing left to do tonite, so we can take it easy and relax until tomorrow.

I want to recognize my fundraiser work crew. Your devotion to this cause is amazing. You are amazing. There is no way we could possibly ever thank you properly. You have given of so much of your time to support this worthwhile cause. I especially appreciate those of you who have children - you still found the time to work so hard for this cause when you could have been home spending time with them. Businesses from the area and neighboring towns have also been extremely generous and have helped tremendously in our journey to raise as much money as possible for Families of SMA. All of you are the reasons that we have made this event the HUGE success that it will be. Never in a million years did I think that Marshall would affect so many people in this way. Obviously, as our son, he has deeply affected us in so many ways, one being that we want to fight the fight. We want SMA gone and out of the lives of everyone forever. We are amazed every day at the amount of people who share our feelings about destroying SMA and are willing to work actively to support us in doing so. This can only happen with the type of support that you have all so unselfishly given! So, from the bottom of our hearts, THANK YOU ALL!

Now, I'd like to take a small trip down memory lane - Last January, to be precise. A little birdie tells me it was on the 28'th. I remember my aunt telling me her sister-in-law was going to bring a friend to our first fundraiser meeting. She said that this friend has done tons of fundraisers and wanted to help us with ours. My initial thought was "Ha, we don't need help! We can do this all on our own!" But, because I don't like to make waves, I agreed that the friend could come; but I didn't feel like getting to know a new person and I was certain that we could pull this off without her help! Haha, was I EVER wrong! From the very first meeting, I knew that this woman knew what she was doing and that I was crazy to even think that we could attempt something like this without having a true leader in our group - one with so much experience - and so many contacts! From that evening, we realized how much work this truly was going to be - but we were up for it! We wanted so much to make this event the greatest success it could be and something to remember forever. . . and as I am sitting here one night before the event, I do believe we have been able to make it just that - a great success (time will tell for sure - but we're feeling pretty confident!) that will be remembered for a long time to come.

Anyway, as time went on, and we had our weekly fundraiser meetings - we all learned how to be organized and efficient for this event. More important than that though, I was becoming extremely comfortable with this new person who was taking charge of our event. Besides learning about fundraising, I was learning other things from her - survival skills through my grief - skills that I needed for my life. My dealings with our new fundraiser guru became more than weekly - in fact, we began talking daily and before long, I realized that I had made a great friend through this process - someone who shared feelings with me, believed in me (and told me so!), someone who encouraged me, helped me, and allowed me to deal with my life at my own pace - something I don't find in a lot of other people. She accepts me for who I am and enables and encourages me to become the person I still want to be. She lets me know that I am loved and knows that my whole family loves her back! So, Patty Cuneo, for everything you've taught me and allowed me to experience in a mere 5 months, I thank you in the best way I know how. I only hope that some day I can become as important to someone else as you have been to me. You are a true gift in our lives - one we are sure was sent to us by the gentle guiding of our Little Man, Marshall. We hope you will carry Little Marshall in your heart every day, just the way that we do. We love you and we hope that you will remain part of our lives forever and ever!

Love Always,

Laurie & Mark and the star of tomorrow night's event, Marshall D.M. Potter

June 11, 2003
Due to the fact that I'll be so overwhelmingly busy over the next several days, I wanted to post an early birthday wish to my friend Katsie Brock. Happy first birthday Katsie!

Love,

All of us!

June 11, 2003
Several people have called or emailed to ask what the attire will be for Friday night . . . so to that, I say wear whatever you want to! Be comfortable (but be covered, please!) Wear whatever makes you want to spend tons of money so we can reach our goal! Hahaha!

*Fundraiser people - whoever wants to come help load trucks tomorrow (Thursday) is welcome. We don't need many people, so if you can't do it, then it's fine with us - we'll work it out. We'll have dinner here for whoever does show up. Thanks again everyone - I can't believe it's almost here!

L, M & M ^i^

June 9, 2003
Our deepest sympathies to the family of 16 year old missing lifeguard, Molly Bish, of Warren, MA. Molly's remains were positively identified today in the woods of Palmer, MA. She had been missing for nearly 3 years. My heart is broken for her family as they no longer have the hope that she may be alive and well somewhere on this earth; instead she is up in Heaven with all of the angels, never to return to this earth again. I hope she is playing with and loving our sweet Marshall!

To the Bish family - we understand; and we are so sorry . . .

L, M, & M ^i^

June 7, 2003
Thanks for leaving Marshall such a nice present, Brooke! We love you Sweetie-Pie!

L, M & M ^i^

June 6, 2003
Dear Marshall,

Here it is . . . the month of June. This month signifies 6 months of missing you - and Boy, do I ever miss you. It really feels like an eternity since you left us. Literally, there are days that it feels like it has been years since we have held you; yet, not a day goes by that I do not long to hold you and feel your soft hair against my face. The thing I miss most is every night, when you would sleep next to me - so close that I could breathe in the air that you had just exhaled. I felt that you were breathing life into me - something that despite how hard I tried to, and how badly I wanted to, I could never do for you. With every breath, you sent so much love into me. It is only that love that gets me by without you, each day. I feel the love from you so often - you know just when to make your presence known - always when I need it most, and for that, I thank you Little Man!

Lately, I have been realizing a few detailed things that I had forgotten over the past few months and it hurts to know that I cannot remember and savor every second of your life. Looking at your pictures helps bring back a lot, and I do that so many times each day. I am so thankful that we had the time to do the things we did while you were here . . . making your footprints on the door, bringing you to all the places you went, letting you spend so much time with everyone who loved you - you truly were EVERYBODYS baby. We took zillions of pictures and movies (which I cannot bring myself to watch yet. I accidentally did this the other day when I hit the play button on the camera, I did not realize your video was in there and it was so, so, so sad to see you on there. I cried for a while . . . just wondering, how could this have happened to you?) I am really starting to forget exactly the sounds of what little noises you did make. I know I could so easily be reminded by turning on your tapes, but that just hurts me so badly to see you on the screen, and not be able to touch you. I cannot do it yet. I am sure you understand.

Truly, I am a better person for having known you - we ALL are, Marsh. And it has been hard for me to accept that part of knowing you was losing you. I think we probably all feel that way. I do have a few regrets. I do wish things could have been different. I wish we could have done more and experienced less. I could never justify losing you, but I also do realize that you were definitely a little messenger; so very much a part of Gods Plan. You have touched so many hearts here on earth - some while you lived here, and still others after you died. Since you left this earth, we have educated thousands about SMA and our special boy. We have raised thousands of dollars for research (We are close to $20,000 now!) We have inspired others and along the way, we have made lifelong friendships. We have learned who our true friends are; and we have an even greater appreciation for those we call FAMILY. Still, I would give it all back in a heartbeat, if you or even one of your Angel pals were still here and free of SMA. I know that cannot be done, so I will stop wishing for it. But, just know that our thoughts are with you (our thoughts are nothing BUT you!) every second of every hour of every day.

In the weeks that followed after you went to heaven, I would often find little things of yours around the house while I was cleaning. Those items would make me feel so good - like part of you was still here with us. The sock from under the bureau, the beanie babies that would turn up everywhere, the pacifiers that would come out of nowhere, even the peed-on cloth diapers in your pail. I found a few of those several weeks after you were gone. I held them for a little while before tossing them into the wash. I constantly want to hold onto remembrances of you. I remember being so sad a few weeks after you were in heaven, I was cleaning and I realized that I had finally cleaned the whole house and nothing of yours would ever be found hanging around again. That was a sad moment for me. While most of your things are too painful to keep in plain view, there are some things I need to keep out all the time; like your beloved Boppy in your room and your little shoes which hang from my rear-view mirror in the Jeep. You know what is inside those shoes, and you can thank Rachel Rollinson for that! (And give her a kiss from her Mommy!) Those are the beautiful things left of you that I need to hold onto. They are the only physical, tangible parts of you that I still have left. Daddy and I want to feel close to you again, so badly. I remember a few weeks after you were gone, we found one of your half-eaten popsicles in the freezer. I let your dad have the rest of it, but first he let me feel it against my mouth. I cried when my lips touched the part that your lips had melted into the shape it was in. I missed you so badly at that moment; but I was so glad that I was able to experience it. And to think I did not even want Billy to give you a popsicle that time! I am glad I allowed him to do that - I remember you enjoyed it so much. Even though we do not have the actual item anymore (because we ate it!), we are still so glad to have the memories and the feelings that went along with it!

Now instead of looking for your actual items like your socks, clothes, and pacifiers when I am cleaning, I look for you in different ways. To me, Marshall, you are: a bright star in the sky, a warm sunshine on a cool day, a colorful rainbow in a previously dark sky, a fuzzy animal in the grass, the laughter of a small child playing, and the feel of gentle raindrops on my back. You are my priority, my determination, my focus, my biggest want, my true inspiration, my greatest teacher, my love, my angel, and my very best friend. You are the true meaning of love; love that shall never, never be forgotten. We now know all about true, unforgettable, LOVE . . . and we learned it all in the name of a little angel named Marshall.


"To love and be loved is to feel the sun from both sides." ~David Viscott

June 5, 2003
Just wanted to thank Marshall and Shelby for the tricks they were playing on their Mommies today! My friend Melissa called from Texas and it was unseasonably cold there; she figured Marshall sent some New England weather there. She wanted to know if her Angel Shelby had sent us some sunshine, but I told her that she hadn't. It was equally cold here (maybe colder!) with dark, gray skies. I was staring out the window, while we chatted for a minute, and then all of a sudden, in one quick second, the clouds broke and the sun came streaming through; all bright and pretty! I interrupted the conversation and said "Missy . . . the sun just came out!" And at that second, she said "It's here now too!" We know it was our little angels, just letting us know that they are STILL here! We love knowing that they are around us! After I got off the phone with Melissa, the skies went gray again - and I was not a bit surprised by that!

I love you, Little Man!

June 4, 2003
Special thanks to my cousin John for putting together a very moving slide show for us (it's to use at the fundraiser, but I'll probably watch it a hundred times a day between now and then!) And thanks Auntie Cis for use of your computer and programs. We couldn't possibly have done anything of this quality without either of you! If anyone wants a sneak preview, you'll have to come to my house to see it (or if you have a computer with a DVD player, I'll be happy to show it to you at your place - depending of course, on where you live!) Thanks again John and Auntie Cis! This is a great way for all of us to remember Marshall and his time with us.

"It's not what you take, when you leave this world behind you; it's what you leave behind you when you go."
~Randy Travis

June 3, 2003
Teena,

Thank you so much for that tree! By the time I had realized whose truck was in my driveway, you had already backed up and were gone! It's beautiful and so perfect. We're touched that you want to remember Marshall right alongside us. Thanks again . . .

Laurie & Mark & Angel Marshall too!

June 2, 2003
Happy Birthday, Cousin Tracy!

*Reminder - the fundraising committe is meeting at our house tonite! Lisa, Pat (and anyone else, for that matter) you can come early - I'll have dinner ready!

Two quotes for today (they may only make sense to one very special person - but I'm posting them nonetheless!)

"You fight dandelions all weekend, and late Monday afternoon there they are, pert as all get out, in full and gorgeous bloom, pretty as can be, thriving as only dandelions can in the face of adversity."
~Hal Borland


"I wonder if we are given kids to teach or to learn from? No wonder God loves the little children! Enjoy the little things in life, for one day you may look back and realize they were the big things. I wish you Big Mud Puddles and Sunny Yellow Dandelions!!!"
~Author Unknown

*Marshall, my pal, I hope there are lots of big mud puddles and sunny yellow dandelions up in heaven for you, Charlie, Taylor, Aiden, Alec, Rachel, Andrew, and Jacob and all of your angel friends! Michelle said she hoped you liked your pizza on Friday night! I thought it was so nice of her and Matt to share it with you - especially since I missed you for lunch that day! It was nice to find 4 small rocks for you on Sunday - I'm glad you had some company (besides me!) over the weekend. How about a sign, Little Man? You know for what. It's been a while since I've "seen" you. As Daddy always says to me, "Love you THIS much" (you know what I'm doing!)

M.M.M., Little Man!

Mum & Dad

June 1, 2003
FYI:

The golf tournament is filling in quickly. We've now secured a donated car for a hole in one (the hole is TBA). So, for those of you who were contemplating whether or not to golf, this should be enough incentive, shouldn't it? More than half of the spots are now taken, so if you are planning on golfing, please send in the info as soon as possible! Email me: info@marshallpotter.com if you need to know where to send the check and registration. Thanks everyone!

"The best and most beautiful things in the world cannot be seen, not touched; but, are felt in the heart."
~Helen Keller

May 31, 2003
I found this quote today and found it fitting:

"Great harm has been done to us.
We have suffered great loss.
And in our grief and anger we have found
our mission and our moment."
-- President George W. Bush, September 2001

We all know what the great loss was. I consider our mission to contribute as much as we can to assist in finding the cure. We'll see everyone on June 13'th to fulfill our mission!

L, M & M ^i^

May 30, 2003
Dear Marshall,

"Quand le soleil
Dit bonjour aux montagnes
Je suis seul et ne veux
Penser qu'a toi"


Love,

Your Mommy

May 30, 2003
Happy 2'nd birthday to Miss Lily Barnett! Have a Super Day, Lily - we'll be thinking about you!

L, M, & M ^i^

May 29, 2003
My cousin Lauretta called from California this afternoon. She spoke with me for a minute and then put her 7 year old daughter on the phone to tell me something special! Hannah recently had a birthday party (Happy Birthday Sweetie!) and invited her entire class. Instead of bringing gifts, young Hannah requested that they donate to FSMA instead. Her classmates raised a total of $245! I thought this was a very special thing for Hannah to do in Marshall's memory. I don't know many 7 year olds who would give up their own birthday gifts to help someone else's cause instead; but Hannah chose to do just that. Thank you to the entire Muzio family and to Hannah's classmates! We are so appreciative of what you've chosen to do!

Love,

Laurie & Mark and Marshall (in spirit)

May 29, 2003
Just wanted to share a comment made by Mark, after hearing about what Hannah has done for us and for Families of SMA. "One little girl CAN make a big difference." I think we all agree that this is true. Another comment by my dear friend Kristin "Hannah-- You go girl!! That's just AWESOME!" And then later (still from Kris) - "That's really amazing for a 7 year old. You should be so proud."

Thanks Hannah Banana - we love you and we ARE so proud of you!

Laurie & Mark and Marshall D.

May 29, 2003
Thank you to whoever left Marshall such a beautiful item today. I love that it's a star for our little Star! And, the angel in there is just gorgeous. Thanks for not forgetting about him and us, everyone. It's so important to me that no one forget him.

May 28, 2003
I removed the last post because of those crazy symbols that popped up. I have no idea why that happens.

L

May 27, 2003
An Update for my Fundraising Committee:

If you have any ads or any donated items that will need recognition in the book, PLEASE get them to me or to Pat by Thursday - THIS Thursday - May 29'th. We need to send the book to be printed as soon as possible and we want to include everything. As far as I know, the next meeting will still be June 2'nd, as long as everyone has turned in everything in the meantime. Thanks so much for all of the hard work everyone! There are no words that are great enough. We could NOT have done this alone. June 13'th is coming fast and I can already tell this is going to be a huge success. Thanks to Giggles too - you are amazing!

I wanted to also put another thought out there. Probably most people know that we've started to construct a memorial garden for Marshall. (Has anyone driven by and seen this mess in my yard?! It'll come together soon!) Anyway, my cousin Ted's wife, Sherry had a wonderful idea! Anyone who has perennials in their yard, who is willing to share, could separate some of them and plant some in Marshall's garden. That way, we'll have a great variety of beauty in there and it will all be from those who knew and loved Marshall. I think this is a great idea and I can't wait until we are in the planting stages! Let me know if you want to be involved in this meaningful project. Thanks everyone!

Love,

L, M & M

May 27, 2003
For several days now, I've been meaning to leave a Thank You note here for the person who left Marshall that gorgeous snow globe at the cemetery. As soon as I noticed it, I turned it over to see what song it would play, and I will admit, when I noticed that it didn't play You are my Sunshine, I was a bit disappointed, but when I read the front, it said "And a Child Shall Lead", my first thought was "Isn't that the truth!?" I got tears in my eyes and felt chills right away - and I do love Amazing Grace! So, thank you for leaving that. (Fran?) It sure is beautiful; and sure does speak the truth!

" . . . And a little child shall lead them . . ."
Isaiah 11:6

May 25, 2003
Cole, we're thinking of you and saying a prayer for you too! Kris, call if you need to talk! We hope you both feel better soon . . .

L, M & M

May 24, 2003
Do dogs go to heaven? That's something I've asked myself all day . . . if they do, Marshall's doggie is there with him today. Ginger lived for 18 and a half years. She outlived my dad and our son for whatever reason . . .

She was so old, we have been prepared for a while that she could go anytime, so it was definitely not a shock. But, it still hurt. It was still another loss for Mark and I in this period of time which seems so unforgiving to us. (Yesterday's news was a helpful bright spot though!) Anyway, as she was leaving us, I told her "Tell Marshall we love him . . ." I hope she does; because we do - so very much.

May 23, 2003
Prayers for our pal, Connor Reilly, please. Connor is having a tough day. We're praying for you and thinking of you Connor. We hope you feel better soon! Stay Strong, Buddy!

L, M & M ^i^

May 23, 2003
Just an update on us . . . without giving too much info! The results we were waiting for came back with Good News! Hooray! This is one less thing for Mark and I to worry about. Those of you who know what the test was for are probably wondering something else now . . .but it's nothing that I want to post on the web, so if you knew about the test and if you truly want to know the rest of it, then go ahead and ask . . . we just might tell you!

Have a wonderful weekend, everyone!

Laurie & Mark and our guardian angel, MD
(I saw you twice today, Little Man! How lucky am I?!)

May 21, 2003
Plans for the motorcycle ride have been put on hold. We are more than overwhelmed with our current events and a few other issues that we are dealing with. Hopefully we can do the ride next year. We are still thinking of a small barbeque on Marshall's birthday and we will still draw for the x-stitched blanket on that day.

*MD, I love you and it pains me that you've been gone for 5 whole months as of tomorrow! I miss you with all my heart. Thanks for being OUR little boy always and forever.

May 20, 2003
Happy Birthday in Heaven to Alec Roberts. (www.oursonalec.com) Alec would have turned two years old if he were with us today - but instead, he is spending his birthday (and every day) in heaven with Marshall and Charlie and all of the children who have lost their lives to SMA.

Please keep fighting to find that cure everyone!

Alec, we hope you have a happy day. Stacy, Kirk and April, you'll be in our thoughts today.

L, M & M ^i^

"Life can only be understood backwards, but it must be lived forward" ~Soren Kierkegaard

May 20, 2003
To my Fundraising Committee: Next meeting will be June 2'nd, 7pm, my house. Please bring with you a pair of good scissors and a stapler! Things will be much more efficient if you can do that . . . Also, because next week is the deadline for ads and we're not meeting due to the holiday, please make sure to get ALL ads to me by next Monday! Thanks everyone!

May 20, 2003
I sent out a mass email earlier today, regarding a cross stitched throw that my mom's cousin made. If you didn't get the email, tickets are available for $2 each and I can email you a picture of it if you want. For those of you wishing to buy tickets, please make out your checks to The FSMA Marshall Potter Fund. (We opened up an account at the bank specifically for our events. When the events are over, all funds from the account will be sent to Families of SMA). If you need my address to purchase tickets, send me an email. Thanks!

L, M & M ^i^

May 18, 2003
Special Thank You's to the mysterious music box people! We love it. We were apprehensive about leaving it there; but we did. We don't want it to get wrecked in the weather. So, if you return and see it missing, know that I have taken it home to keep it safe, but will definitely bring it back daily to play it for Marshall.

I also want to thank Underwood's Hickory for the special time last Friday. Hickory, you have inspired me to again pick up something that I LOVE doing (and haven't done for about 5 years.) I look forward to spending time with you again really soon!

*Nicole, once again you were awesome today. Thanks for letting me tag along to see you dance! I love you.

*Little Man - We miss you so much - You're in my heart every second of every day. Thanks for the warmth today - and I'm not talking about the weather - you know what I mean!

BHK & ILY to the faithful journal stalker & to the Angel with the Golden Glow!

L, M & M ^i^

May 17, 2003
Fundraising Committee will continue to meet every Monday night. But, there is a switch in location. The meetings will now be held at our house in Douglas. If anyone needs directions, let us know!

Thanks again, all you fundraiser people, for the help and dedication. We are sure to make a difference! How lucky we are to have such an amazing person overseeing most everything for this event! Every week, I am continually amazed at the dedication shown by our committee, and the generosity shown by area businesses and neighbors. It is sure to be a success. Thanks everyone!

Love,
Laurie & Mark (and the source of our inspiration . . . Marshall D)

May 16, 2003
Mark and I wanted to thank Kathleen M. for designing and sewing a gorgeous quilt out of Marshall's clothing, blankets, and special toys. Although she is an experienced quilter, it is my understanding that this is the first quilt of its kind that she has made for anyone, and we are honored and blessed that she volunteered to make it for us. I remember when my mom first told me that Kathleen wanted to do this for us - my first thought was "How in the world can I give up Marshall's special things to be all cut up"? That same night, it was just a few weeks after Marshall had died, and as I went into his room to pack up and put away the rest of his things (it had been much too painful to leave things the way they were: the crib in his room, the clothing hanging in his closet, his special toys and blankets, etc. I had to pack away all of it because I couldn't walk by his room daily and see it all in there - it was like a kick in the face) I began to realize that if I put everything away, it was true that it wouldn't be in plain sight to cause me any more pain; but I wouldn't experience the joys and happy memories that his things brought me either. It was then that I decided that I had to let Kathleen make us this quilt. I asked Mark what he thought and we decided to go through Marshall's things once more and put aside things that we wanted this quilt to be made of. We wanted it to be special; we wanted it to be unique to Marshall. We made sure to pick out things that were exclusive to him; for instance: The onesie t-shirt with a hole cut in the tummy for easy access to his feeding button, the outfit he wore to Tante Caroline's wedding, the Pooh blanket that I used to bring to every public place we went to so that I could nurse him discreetly, The lonely sock that mysteriously appeared weeks after Marshall earned his wings, the outfit he wore the day we took him home from the hospital, and the outfit he wore just hours after he was born, his special hat, favorite bib, favorite blanket, a patch from his diaper bag, the preemie outfit that fit him so well when he was 3 days old - and he had already outgrown it at 4 days old, the hedgehog outfit from my friend, Megan (he wore this after his baptism), the towel from Maureen with his name on it, and squares from the pillows that were made just for Marshall by Gina Fimbel's Aunt Edith. A piece of every single item is included on Marshall's quilt. When I look at it, I can remember exactly what each piece was. I remember exactly how old Marshall was when he wore it, and how old he was when he outgrew it. I am reminded of the sweetness and innocence of our baby; the agony and heartache of his death, but also the joy and glory of his life.

I'm probably going to be seen carrying this quilt everywhere I go for a long, long time because I want everyone to see it (as long as they will allow me to show it to them!)

Thank you, Kathleen, for making us such a special treasure that we will hold onto for life.

Love,

Laurie & Mark & our Laughing Star - Marshall

May 15, 2003
"In one of the stars I shall be living.
In one of them I shall be laughing.
And so it will be as if all the stars were laughing
When you look at the sky at night.
You - only you - will have stars that can laugh.
And there is sweetness in the laughter of all stars
And in the memories of those you love."
~ The Little Prince - Antoine De Saint Exupery

May 15, 2003
Looking back over the past 4 and a half months, I have discovered a few things. I have realized that I have been going through many different stages of grief (which I believe all began last October 10, when the doctors told us our little boy was dying.) One of the things I realized this past Tuesday, is that for the past (almost) 5 months, I have been completely numb. I have not felt physical pain. Sure, my heart hurts terribly. This has all been a pain like none I've ever felt in the past, and one that I hope I never have to experience again in the future (because I know this one will last my lifetime). I suppose my heart hurts so badly, that nothing else will ever compare. Even the tattoo that I got didn't hurt. It was somewhat uncomfortable but I do believe I was still numb, even then.

I'm not sure what happened, but this past Tuesday, I felt physical pain, for the first time since Marshall died. As I opened the back of my car, a glass jar (from fundraising, no doubt!) rolled out and as I saw it falling, I reached for it - but it was too late. I grabbed hold of it just as it was smashing on the floor of the garage. The result was a lot of broken glass all over the floor and a few small splinters - tiny glass pieces in my hands. I did get them all out, but my hands continued to hurt from the cuts sustained by the broken glass. I have no idea why it took me so long to feel again, but it did.

Maybe this means that I am learning to come to terms with losing my child. I have doubts that I'm ever going to heal from or "get over" this because I do not feel that this is possible. I do feel that with my family and friends and the support we've received, we can learn to cope with everything. Mark and I have been truly blessed to have the kind of love and support that we know in our lives. We are so thankful for so many people who have worked with us continuously to let us know that they love us and support us, and that they will never forget Marshall. Our fundraising events have also been a blessing. They allow me something to pour myself into - so that I have something besides Marshall to think about. Not that thinking about him is a bad thing, but once I get going, it's hard to think of anything else. (It's the story of my life, really. I don't find that I can often think of anything BUT my sweet little Marshall!) Those events are also allowing me to feel good about helping the SMA community. We want that cure to be found as badly as anyone else does and we won't stop fighting until that happens.

Because of Marshall, we have met MANY wonderful people who are now a big part of our lives. We are so blessed for that. Still, I'd give it all back if it meant that even one of the children were healthy and free of SMA today. Please keep fighting, everyone. That day will come.

If anyone needs to be reminded of our events, read up! June 13, 2003 from 6pm - 12am, we are hosting a huge kickoff party at the Leicester Country Club. "A Celebration of Life, in Memory of Marshall Potter". Tickets are $15 each and children under 12 are free. There is going to be food, entertainment (we have 2 bands and a DJ), and loads of raffles, balloons (Marshall's favorite!) and fun, fun, FUN!

June 29'th we are hosting the "First Annual Golf Tournament in Memory of Marshall Potter". Cost is $300 per foursome or $75 each and you will be paired up with someone. Most of our big raffles will be drawn at this event. This is something you don't want to miss! This event is also being held at the Leicester Country Club (1430 Main Street, Leicester,MA). Email us for more information on either event and if I can't help you, I will gladly put you in touch with our fundraiser guru "Giggles" the Clown.

We hope to see you there!

*All proceeds from BOTH events will be sent to FSMA (www.fsma.org)

L, M, & M ^i^

May 13, 2003
Happy Happy 9 month Birthday to Cole Daniel Webb. www.oursmaangels.com/cole

We love you Cole! I wish I was close enough to squeeze your big fat cheeks! Hang in there Little Mister - and go easy on your Mommy!

On another note, most everyone knows I am a quote lover - so here is one that a very good friend sent me today . . .

"Don't cry because it's over. . . smile because it happened" ~author unknown

Ah yes, I truly wish it were that easy. Marshall did bring us so many smiles. And because we lost the smiles, the tears will flow. But I do look back on his healthier days and can definitely smile about those. We love you MD.

*Thanks to my psychotic clown friend for sending me that quote and for those really big shoulders!

May 13, 2003
Just an update from the Murphy's on last Saturday's Walk SMArt . . .Silvia reports that the totals are nearing $30,000 and every day more pledges are still rolling in. This is an impressive total!

Thanks to everyone who walked on Marshall's team, in memory of him and in honor of all of the children who have SMA. Keep fighting everyone! The cure is getting closer!

I want to thank Marshall's pal (Rachel) and her family for the special gift on Saturday. It means so much to us and we will definitely treasure it forever!

"If you live to be a hundred, I want to live to be a hundred minus one day, so that I never have to live without you" ~ Winnie the Pooh

May 11, 2003
REFLECTIONS OF A MOTHER'S DAY DENIED

On this, my first Mother's Day, I asked myself, Do I have the right to celebrate Mother's Day? Have I truly been a mother this past year? The answer is Yes.

Each day I have cared for my child as every mother does, except differently. In every way possible, I have mothered him.

I have mothered him with every tear shed, through the agony of longing to hold him. I have rocked him in my heart if not in my arms. I have kissed his little cheeks in my mind, if not with my lips. Smelled his sweetness with my hopes, if not with my nose. Felt his skin with my memory, if not my hands. Tickled him with my wishes, if not my fingers.

Am I a mother? I truly am. My physical mothering has been limited to lovingly tending his grave. But, I am a mother all the same.

~Michelle Parrish
Columbia Chapter
The Compassionate Friends
Baltimore, MD

May 11, 2003
Dear Nicole,

Happy Happy Happy Birthday!!!!!!!!! You were amazing at your recital! I love you tons!

Yove, Yau

*Yook Yau, Yammas!

May 10, 2003
Just wanted to thank everyone for participating in Walk SMArt today. I'm sure I'll be hearing how successful it was and when I do, I'll post it here. It was great to meet so many families and special kiddos today! We're so glad we went!

On a different note, Marshall's stone is finally in - and it's beautiful. Not quite the Mother's Day that I would have ever wished for but I am glad that we have this closure, finally. It also gives me something to do (planting, weeding, etc.) I learned today that it's a Jewish tradition to place a small stone at the site when you visit. Someone did this a few weeks back, and I just learned today who it was. So, if you stop in, leave us a small stone, so we know you were there. (It's like signing the "guestbook" at Marshall's grave!)

*We love you, Little Man.

L, M & M ^i^

May 9, 2003
Just a reminder: There is an event on Saturday called Walk SMArt. The Murphy's are putting it on, in memory of their children, Cianan and Cecilia, who were lost to SMA, just like Marshall. The walk begins at 10AM in Hingham. We have t-shirts for "Marshall's Team" if anyone is interested. We're asking for a $5 donation for each one to defray expenses. Please come out and support a great cause and walk with us! It's an easy route, from what I'm told . . . 1.5 paved miles. All proceeds to benefit FSMA (www.fsma.org)

Thanks Everyone.

L,M, & M ^i^

May 8, 2003
Dear Marshall,

Some may say that it was just a hummingbird - but, in my heart I will always know that it was YOU, Little Man! I love you and miss you with all my heart and I thank you for coming back to visit me in the wonderful ways that you always do! *We're waiting for those results, Pal - we are hoping and praying that they are good ones! Take care of all of us, my special boy! And always remember how much you are loved, even by those who weren't blessed by knowing you on this great earth - you are such a blessing and inspiration to us all - but mostly to me.

Love & Hugs,

Your Mom

May 6, 2003
I wanted to share something . . . Today, while I was out, I ran into an acquaintance whom I haven't seen for a while (with the exception of a friendly wave in a passing vehicle). Anyway, the moment he realized that it was me walking toward him, he called my name, approached me with open arms (and a really sincere hug) and told me how sorry he was about Marshall. Before I left, I thanked him for talking to me. Maybe he didn't realize the significance of what he had done - but I will elaborate on this. Many times, since losing Marshall, I have run into people that I have known from years past. Most of the time, they turn their heads, pretending they don't see me. Most don't know what to say to a bereaved parent. I can't say that I would know either - until I was placed into this unfortunate position of being "bereaved". However, I can tell you that it actually feels worse to be ignored, or to have someone carry on a normal conversation, without at least acknowledging what I have been through - and more important, what my little boy went through. So, Ricky, I want to thank you for taking the time to acknowledge what has happened, and for wishing us well in our future. We also hope that time will be friendly to us.

I found this list from Compassionate Friends (the national organization for support of child loss). I hope that you will find it helpful in figuring out what to say or do, next time you find yourself around us (or others like us) and are at a loss for what to do or say.


I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.

If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears.

You have talked about my child, and you have allowed me to share my grief. I thank you for both.

I wish you wouldn't "kill" my child again by removing his pictures, artwork, or other remembrances from your home.

Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you; but, I also want you to hear about me.

I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

I know you think of and pray for me often. I also know that my child's death pains you, too.

I wish you would let me know those things through a phone call, a card, note, or a real big hug.

I wish you wouldn't expect my grief to be over in a short period of time. I wish you could understand that my grief will never be over.

I will suffer the death of my child until the day I die. Grief is a life long process.

I am working very hard in my recovery, but I wish you could understand that I will never fully recover.

I will always miss my child, and I will always grieve that he is dead.

I wish you wouldn't expect me "not to think about it" or to "be happy".

Neither will happen for a very long time, so don't frustrate yourself.

I don't want to have a "pity party", but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

When I say "I'm doing okay", I wish you could understand that I don't "feel" okay and that I struggle daily.

I wish you knew that all of the grief reactions I'm having are very normal.

Depression, anger, hopelessness and overwhelming sadness are all to be expected.

So please excuse me when I'm quiet and withdrawn or irritable and cranky.

Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.

I wish very much that you could understand understand my loss and grief, my silence and my tears, my void and my pain. BUT...I pray daily that you will never understand.

From the Compassionate Friends
http://www.compassionatefriends.org/

May 6, 2003
In honor of Nurses Appreciation week, I wanted to put out a special thank you to all of the important nurses in my life (past and present) and even to one who wished she was a nurse (you are also appreciated this week - and every week!). First of all, to Nurse Nancy, for everything she did for Marshall in the short time she knew him. We could not have asked for anyone better to direct his care at home. You are certainly appreciated - even still! We thank you for your love and dedication to Marshall in the eleven weeks that you knew him and us. *We're ready for the tree you promised Marshall.

I also want to send out a BHK & ILY to Tante Mariann - another super nurse in our lives - and special in the life of my little man Marshall as well! Annie, Kathy, Nikki & Ellen - you also took care of Marshall (some of you for just a day - others for weeks). No matter how much time you were able to spend with Marshall, please know that we appreciate the care he was given from you all. *There were also several of you at UMass - the weekend of the diagnosis and because that week will forever remain a blur to me - I cannot remember most of your names but I will NEVER forget your faces! Thank you all too! You all do an incredible job and I know that it takes a special person to do what you do. You are special people!

L, M & M ^i^

May 6, 2003
*Just a quick story - While at the cemetery the other day - I said to Mark - "Something's missing, but I don't know what!" I thought about it for a little while but then forgot about it. I figured I'd lost my mind and maybe there wasn't really anything missing. Well, tonite Marshall's Uncle Ryan called and said that he took one of Marshall's teddy bears from his site so that he could take it skydiving. Uncle Ryan always wanted to take Marshall on adventures (hiking, biking, diving, etc.) Don't worry Uncle Ry, he's with you every time you do those things - LOOK for him - you just might see him!

May 5, 2003
Fundraising committee is now meeting every Monday until the event has come and gone! Thanks, everyone.

L, M & M ^i^

"Memory is a way of holding onto the things you love, the things you are, and the things you never want to lose." ~From the television show - The Wonder Years

May 5, 2003
Marshall is in a sneaky mood today. When I got home from the store, Mark's dad told me that while I was gone, my garage door was going up and down. Very Funny, Marshall. Just don't let in any strangers or stray animals! Then, I sat here to type an update for today. I won't repeat what I wrote about because apparently Marshall didn't like it. Just as I reached for the submit button, the whole computer crashed. I had to turn it back on and everything.

I will tell you this . . . Marshall's music box at the cemetery is on it's way out. It's starting to break, I can hear it. It makes me sad because every time I lose something that was his - another little piece of him is lost as well and I try so hard to keep him "alive" within us. Anyway, so many of you often ask what you can do for us - here's something . . . we will need a new music box. It MUST play "You are My Sunshine"; no other song will do. If you find one, please buy it and I will gladly reimburse you. I'd like to get one before this one breaks for good. (I'm amazed it has lasted this long - through snow, wind, rain, cold weather, etc.) Or, if you see a music box that fits the criteria, let me know where you saw it so I can go get it!

*Gage, thanks for the present you left Marshall. I did notice it last night but forget to mention it to your Mom. Those were his favorite and it's so nice of you to share yours!

L, M, M ^i^

May 2, 2003
Happy Happy Birthday to my cousin, Tammy!

Also, please keep Skyler M. in your prayers as she's not feeling too well. Our thoughts are with you, Sky! Feel better soon!

For my Little Man:

It's been a few days since you've shown up; maybe you're busy doing some more of your important work but I want you to know that I've missed you! Come back to your Mom soon, Pal!

L, M & M ^i^

May 2, 2003
Thank you, Tante Mariann. You know I appreciate it.
BHK & ILY! (from all 3 of us!)

Jenny G, I'm so sorry, I neglected you in the last update. Last time I talked to your Mommy, she seemed to think you were starting to get better. I'm so glad. I hope you have a wonderful weekend! Stay strong, Beautiful!

L, M & M

May 1, 2003
A new month - maybe it will bring new hope!

Anyway, I wanted to make a small request of some of you. If you knew our Marshall and loved him (don't we all love this kid?!); and if you feel so inclined, then we would love to have you write a reflection for his Poems/Stories page. There is one there by my mom, Marshall's Memere and by my sister-in-law, Marshall's aunt. I've asked a few of you to do these in the past (Tante Mariann, Caroline, Nancy, Kathy) but haven't gotten anything back yet . . . please, please think about doing it! I might like to see something from Tammy and Pat also (yes, Giggles, I mean you!) And, if anyone else feels like they want to do it, please send it to me and I will have Jason post it on the site. It can be anything about your experience with Marshall or our family. It can include anything from Marshall's life, or the experiences you've had with him since he left this earth. I think it would be beneficial to know how you all felt when you were with him, what he taught you, and what he continues to teach so many now that he's an angel. Everyone knows my thoughts - it's time to see YOURS!

Thanks to everyone who has supported me this week. It was another major setback for us, but we are thankful to have the support of so many.

*Marshall, your dad is a really special guy and I am lucky to have him - even if our genes don't match up perfectly! You were perfect in our eyes - don't forget that! We love you, Curly!

~from your Mommy

P.S. - Missy (Mom to Braxton, Angel Shelby, Colt and Katsie) shared this with me and I wanted to add it to the end of today's entry.

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." ~Kahlil Gibran

April 29, 2003
Dear Marshall,

There are no words for a day like today. You take care of the Little One. We love you both.

Mom & Dad

April 29, 2003
"Sometimes there are no words, only love." author unknown

April 28, 2003
Fundraiser people ARE meeting tonite. Thanks!

April 28, 2003
Today is a sad day for me. Today makes 4 months and 6 days since Marshall went to heaven. Since Marshall's short life on earth only lasted 4 months and 6 days, he has officially been gone for longer than he was with us. This saddens me. It's a cruel reminder of how short his life on this earth really was.

But, we must not judge his life on the length of time it lasted; but on the importance of his life. I receive notes several times a week from people who let me know that Marshall's story still touches others, and from people who believe that Marshall has shown up to visit them; when they have least expected him to.

We still love you and miss you, Little Man, and we will never, never forget.

A good friend sent me this poem a while back and I still believe it really touches upon my true feelings.

"My Mom Is A Survivor"

My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom...through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her...And show her that you care.
For no matter what she says...no matter what she feels.
My surviving mom has a broken heart that time won't ever heal!

This poem was written by Kaye Des'Ormeaux

Thanks for reading . . .

L, M & M ^i^

April 26, 2003
I wanted to thank Marshall's best pal, Charlie Cowan, for visiting me yesterday. I was at the cemetery (my second home) of course, and I felt a very strong feeling that someone was watching me. When I looked up, the very first thing I saw was the name "Charlie". NOT Charles, mind you - it said Charlie! It was on a stone that was behind Marshall's; diagonal to the right. I am amazed that I never noticed it before as I walk the cemetery regularly and have become acquainted with all of Marshall's neighbors. (It has clearly been there for a long time.) Right after I looked up to the stone, the strong feeling of being watched disappeared. I knew right away that it was Charlie Cowan - making sure we don't forget about him either! Don't worry Charlie, we won't! Thanks for being Marshall's best pal!

To learn about Charlie, please visit his temporary site at www.caringbridge.org/mn/charlie

Don't forget to leave a note in his guestbook.

L, M, & M ^i^

April 25, 2003
*Anyone planning to do any of the upcoming walks for FSMA, please contact me immediately. We are putting together t-shirts for Marshall's team and I need to know how many to order. We want to make sure everyone who walks gets to wear one.

There is a walk on May 4'th in Norfolk (unfortunately we can't make it to this one - but YOU are welcome to go - email me for details). There is another on May 10'th in Hingham, and another in September (maybe in Chelmsford?) If you want a t-shirt for Marshall's team, we ask that you contribute $5 for each shirt. We are going to reuse them for each walk, so you'll get your money's worth if you plan on doing more than one walk! Also, for the May 10'th walk, if you are unable to collect sponsors (like me! We're so busy with our own events!), then the suggested donation per walker is at least $15. (This is in addition to the $5 shirt (if you still want one). Let us know! Shirts were ordered today, (2 dozen) and we broke down sizes as best as we could figure. I know for a fact that there are only 3 XL and 3 Small. There are lots of M and L. So, if you want XL or S, let me know so I can reserve you one!

Thanks for the support everyone! We look forward to walking with you!

L, M, & M ^i^

April 23, 2003
I just wanted to express my sincere thanks to those who visit Marshall's burial site. I'm sure he appreciates it also. It's comforting for me to know that others go there (besides just me!) and leave special things for Marshall. I know how much I love him; but to see that others love him so much still is touching for me! *If anyone sees any hummingbirds, let me know! I placed a feeder but haven't seen any yet. I thought it would be nice to see some LIFE in that cemetery - because it often looks so still. The stone should be in very soon and then I can start planting and adding things besides what's already there.

Anyway, thanks for visiting - we definitely appreciate it! Love,

L, M, & our little rainbow Marshall D. ^i^

"the colors of the rainbow are so beautifuuuuuuuuuuhhhhhhhhhhhhuuuuuuuuuuuuul"
~by all of the children in the family - but sung the loudest by Miguel! (3 years old)

April 22, 2003
Here is an update on another Casey! My brother-in-law Casey found out today that he does not carry the gene deletion for SMA, so my sister's children should not be affected by SMA. They will have a 50% chance of carrying the gene though. Yay for Caroline & Casey (and all of those future Daniel's!) This is the news that we had hoped for!

*Playing with fire is NOT a funny trick, Marshall!

Love,

L, M, & M ^i^

April 22, 2003
Today marks 4 months since the huge loss of our Little Man. We still miss him and love him as much as we did the day he left - and so much more than that. It's so hard to believe that he's been gone for almost as long as we had him. I still can't wait until I can hold him in my arms again (when it will be for real, and not just in my dreams).

*We love you and miss you, Pal. Watch over all of us.

L, M & M

April 21, 2003
Today, I received this in an email from Kim McAdams, mommy to Skyler Type I (www.oursmaangels.com/skylerbing) and also to son Luke and daughter Casey (both unaffected by SMA). Kim has given me permission to post it and so I thought I'd share it. I guess Kim had been talking with her children about Easter and other things, and . . .

"Casey kept talking to us about Jesus' gift of Life in Heaven...and we talked about all the kids who are now angels in Heaven...thanks to Jesus and his gift. We talked about Marshall and Alec and all the kids who have passed recently. She has always said that she thinks God has a box of wings and when an SMA baby passes, she thinks He gives them the most special wings of all. So, according to Casey, Marshall received a gift from Jesus and now has the best wings going."

I thought that was special and wanted to share it. Thank you for your insight, Casey! You are a special little girl!

L, M & M ^i^

April 20, 2003
Today was kind of a bummer - as it should have been Marshall's first Easter with us and instead, he spent it in heaven. I know he was around us as I felt his presence and saw his name in print almost everywhere I looked today!

On the way home, I was lost in thought, wondering about our future and being able to have healthy children and all of a sudden, I looked up in the sky and saw a rainbow. It was a very clear day with bright blue skies - it seemed like the only way a rainbow would have been visible today was because Marshall put it there for me to see! I just know that things are going to be alright.

We love you and miss you so much, Pal! Thanks for sending us all those signs!

"Gone too soon, like a rainbow fading in the twinkling of an eye". ~Michael Jackson

April 15, 2003
The Family CD (For Generations) is IN! If I promised you a copy of this, please get back to me. (Gaudreau's and Cowan's, I am mailing yours out today!) If I didn't promise you one, you can still obtain one by emailing me. The cost is $10 each and the profits will benefit The Little Sisters of the Assumption. Log onto www.littlesisters.org to learn more about their organization.

Thanks!

L, M, & M

*Marshall, you are amazing and I love you!

April 13, 2003
Happy 2'nd Birthday to Skyler McAdams! (Sorry Sky, I know I'm a day late!)

I'm happy to report that our first of four major events (our spaghetti dinner) was a great success. We were able to raise over $1300 for FSMA. There was a consistent flow of people for dinner and we drew 10 raffles. Congratulations to all the winners . . . but especially to a special little girl named Gilly Powell who won one of our handmade quilts! Thanks to all who came down to support us and please remember to join us on June 13'th!

L, M, & M ^i^

April 13, 2003
Happy 8 month birthday to Cole Webb. You can learn more about Cole at www.oursmaangels.com/cole

We love you, Mr. Cole!

L, M, & M ^i^

April 13, 2003
Reminder: Fundraising Committee IS meeting Monday, April 14. Thanks!

L, M, & M ^i^

April 10, 2003
"If I could have a lifetime wish;
A dream that would come true
I'd pray to God with all my heart,
for yesterday and you.
A thousand words can't bring you back,
I know because I've tried.
Neither will a million tears,
I know because I've cried.
You left behind my broken heart,
And happy memories too.
I never wanted memories,
I only wanted you."
Author Unknown

April 8, 2003
Coming home from the meeting tonite, I turned on the radio and the first thing I heard was " . . . Spinal Muscular Atrophy" Naturally, my attention was had, so I listened for anything further, but the DJ went on to talk about something else. So, I called the radio station and asked him to tell me what he just said. He was talking about the Make a Wish Foundation and said that Faith Hill was going to visit a child who has SMA.

I commend Faith on reaching out to this child and I hope that everything the DJ said will bring more awareness about SMA. Knowledge is power and we believe that with enough knowledge and funds, we can beat this horrific illness. Thank you, Faith Hill for making someone's dream come true, and for bringing some much needed awareness about SMA in the process.

L, M, & M ^i^

April 6, 2003
Monday's meeting for the fundraising committee has been cancelled due to possible threat of snow. We have rescheduled it for Tuesday!

Also, if everyone attending would bring a non-perishable food item with them, it would be appreciated. We are reaching out beyond the SMA community this week. More explanation will follow at the meeting. Try not to forget your food item! Thanks!

L, M, & ^i^

April 1, 2003
"Gone are the days we used to share,
But in our hearts you are always there,
The gates of memory will never close,
We miss you more than anyone knows,
With tender love and deep regret,
We who love you will never forget." Author unknown

March 30, 2003
The fundraising committee will NOT be meeting Monday, March 31, 2003; however, we WILL be meeting Monday April 7, 2003. Please make a note of it! Thanks!

^i^

March 28, 2003
Yay Marshall for finally getting Daddy to notice you! Or, maybe it should be Yay Dad, for finally noticing Marshall! In either case, it finally happened.

To those who don't know, we have a large barn and people often store their "stuff" in it because it is currently unoccupied by horses (that will change in the future but we have different priorities right now). Anyway, Mark was in the barn last night and he picked up an item that belongs to my cousin Eric; and just as he did that, Marshall turned off all the lights in the barn! Mark came running in to tell me this (so he had to believe it was Marshall, finally!) I've been seeing signs from Marshall daily since he joined the angels and Mark always seems skeptical of my experiences, so this is a major breakthrough for him!

Recently, I was sitting at the computer and I felt something touch my cheek and then it tingled. I brushed my hair back away from my face, thinking that it might have tickled my cheek. Again, I felt a touch, and then a tingle. I suspected it was Marshall and by this time I had tears in my eyes and chills running up and down my spine. I begged him to do it again so I would be sure it was him. He did it 3 more times. Still needing further confirmation that it was him, I begged him to do it somewhere else; then I would be sure it was him! After that, my scalp began to tingle. I knew it was him; his presence was felt so strongly! I just know that these are his ways of telling us he is doing okay; maybe he doesn't want us to forget about him either! That CERTAINLY is NOT going to happen, as I can't seem to think about anything or anyone else these days.

I continue to visit his burial site daily (okay, okay, sometimes 2 or 3 times a day!) It's kind of twisted to me, but that is actually my favorite part of the day - to go "see" Marshall. It might seem weird to you but if you were in my situation, you might feel differently. It's as close as I can feel to his "rusty worn out car". (Read past entries if this part confuses you). I am anxious to get his stone placed and every day that passes is another day closer to that day - and another day closer to me being reunited with Marshall forever. I remember the first time I took Marshall to visit my dad's grave; which would coincidentally become his own as well. He was 8 days old. I remember crying terribly because my dad would have loved Marshall and it seemed so unfortunate that he couldn't have known him. How ironic that he now holds him in his arms daily; and we can't hold him anywhere but our hearts and our memories.

I've been doing a lot of thinking lately, and realizing how Marshall has really put my life into perspective. I remember when we found out at 20 weeks gestation, that he was a boy, I was actually disappointed that I wasn't having a girl. I know now that things like that simply do not matter. I wondered if I could have prayed harder for the health of my son, but I DO believe now that God definitely had a plan for my Little Man. He was destined to become an angel earlier than most do. We just didn't know it at the time.

I've definitely learned some valuable lessons over the past few months. I've learned about the true meaning of love. I've learned about how agonizing decisions can be. I've learned that everything I did for Marshall I did with love and though I definitely wish I could change some aspects of the past, I've learned that that is simply not possible. And so I accept the events of the past knowing that there is nothing I can do to change them now. I think this was a valuable lesson for me for the future. I've also learned the meaning of the words support, family and friends; all of which we would be nowhere without. We have made scores of friends because of SMA. While we adore these people, we very much wish we could have become acquainted with them under different circumstances. While we are glad to have had them throughout the most devastating time in our lives, we sometimes wish that we didn't know them . . . because only if we didn't know them, then that would mean that their child would not be affected by the same disease that stole the life of my child. My heart breaks daily for the families whose children live with this disease; and for those who have lost children to it. I will continue to fight the fight; in memory of Marshall and in honor of SO many other brave and courageous angels - those that are with us on this earth and also those with us simply in spirit.

We Love you, Little D.

L, M & M ^i^

March 26, 2003
Mark and I want to sincerely thank Greg Boutiette who held a fishing derby recently and raised a good amount of money in Marshall's memory. Thanks Greg, We really appreciate your efforts!

L, M, & M ^i^

March 25, 2003
Today I brought Marshall a new balloon. His other one was starting to look a bit dirty and had begun to lose a bit of air. This one is a Mickey Mouse balloon . . . his favorite! I can't wait until his stone goes in. I really need the final closure. His site looks so unforgiving with the fresh dirt still piled up on top of him (and on top of Poor Larry who lies next to him). I can't wait to see Marshall's adorable face looking at me from his stone. We did get a stone with a picture on it . . . and a very special quote at the bottom. If you want to know what it is then you will just have to go visit him once it is in. I've been going almost daily. I will probably do this for a while. I have so many plans for nice flowers and things that Marshall loved. I want to honor him the best way I know how. I suppose that is just one way of many. Everything I do, I do it in memory of Marshall. I miss him so much and I very much want his legacy to live on. I suppose no one could forget about him through the many fundraising events that will take place in his memory! Let's add another one to the calendar! This one is temporary - a mere thought for now; but nonetheless, we would like to make it happen. We want to host a motorcycle ride in memory of Marshall, and also in honor of Jenny Gaudreau (www.oursmaangels.com/jennifersworld) and the other children who battle SMA daily. The ride will probably take place on Saturday, August 16 (which happens to be Marshall's birthday). After the ride, we will have a HUGE barbeque at our house for all of the bikers and their families. Interested parties can inquire at info@marshallpotter.com

Ideas for this event are welcome, so let us know if you have any!

Take Care everyone and thanks for stopping by to read our journal. As Always, Marshall D. we love you and miss you endlessly. You know just when to show up and help us along. Keep visiting us, Little Man!

L, M & M ^i^

March 25, 2003
I was just watching "Crossing Over" with John Edward (I love that show). Anyway, John said something interesting . . .he said that a person with a progressive disease can be compared to a rusty worn out car; and that their soul is like the driver. When the rusty car is too worn out to drive any longer (that is when the body dies) the driver is free to get out (their soul "crosses over" for lack of a better term) and they are then free from the ill effects of their terrible disease. I find comfort in his statement. I like to know Marshall no longer suffers from his disease; that he can run and play and be comfortable and breathe deeply because he is not held prisoner by his malfunctioning nerves and muscles any more. Anyway, just wanted to share that.

I hope it is really that way, Star! I hope you can move freely now. You give your friends big hugs from their moms & dads and hopefully you will say goodbye to the Angel with the Tender Heart soon! Enjoy your Mickey! I send you a BHK & ILY from Tante Mariann (she gives me too many to keep all to myself!) Mushy Mush Mush, Little Man!

March 23, 2003
The fundraising committee WILL be meeting on Monday, March 24, 2003. Same time; same place! See you there!

March 22, 2003
"We are not put on this earth to see through one another, but to see one another through."

March 22, 2003
Three months ago today, Marshall was granted his angel wings. He is still every bit as loved as when he existed on this earth, and so terribly missed by many, many people. Please take a moment to honor his memory. Your Mama loves you, Marshall.

March 20, 2003
Lots of luck and prayers today for Mark, who takes his Master Electrical Exam this morning at 8:30. We would be so happy if he passed this the first time. Stay with Dad and help him out, okay Star?

Love,

Your Mom

March 20, 2003
Marshall's Daddy is now a Master Electrician! Mark passed his test today!!! Thanks, Star for helping your Dad! (Now, Mom needs help too! You know what to do!) Marshall, we love you more than words could say.
Love,

Your Mom and Your (really smart!) Dad

March 19, 2003
A bit of news to report . . .THIS IS IMPORTANT TO OUR RELATIVES: My sister, Caroline, called me tonite with the news that she also carries the deadly gene for SMA. So, this confirms that the fact that I have the gene is not some fluke of nature. It is in our family, folks! This means that because we have it, our moms (Louise & Pam) or dads (Mo & Jack) also carry it (in my dad's case - carried it)! Because they carry(ied) it, you, and your children are also VERY likely to carry this gene. We don't know which side it exists on so we have to assume it exists on both! If you or your children are considering having children of their own (or more children) in the future, I BEG you to get tested. This simple test can help you learn if you carry the gene, and what to do if you are a carrier. You are ALL aware of the devastation we suffered through losing Marshall . . . PLEASE take me seriously when I say that you DO NOT want to have to say goodbye to your own child this way. PLEASE RUN to your doctor's office and inquire about this test. SMA knows no gender, race, or age. It can affect anyone. SMA KILLS! Please remember this. I have the necessary paperwork on Marshall's illness and will be more than happy to give it to you so that your doctor can look into this for you. I would HATE to think that anyone else will have to go through the pain that we know too well. Please avoid this by getting tested . . . it is a simple blood test that is usually paid for by your health insurance. I hate the fact that Marshall is gone, but if his dying can make us aware so that one more baby in our family does not have to go through the same devastation that he endured, then I venture to say that he served his purpose and did his work well! Please work with him now, and get the damn test done! I hope you all take me seriously when I BEG you to consider this. Thanks! I wish you bountiful blessings in the future.

L, M, & M

March 19, 2003
Congratulations to my cousin Monique and her husband Steve, who welcomed Danielle Pauline Smith into the world last night. She weighed 7.47 pounds and is 19 inches long! Danielle is the first child of Monique & Steve and has been a LONG awaited arrival. Mom and baby are reportedly doing well.

Congratulations are also due to the Bourdeau family. Our friends, Ron & Martha welcomed Aiden Joseph Bourdeau into the world very early this morning. He weighed in at 7.9 pounds and measures 21 inches long. He joins big brother Harrison. This mom and baby are also reportedly doing well!

March 18, 2003
If anyone is interested in participating in another event (in addition to the 3 that we are hosting) then read up! Brian & Silvia Murphy (parents of Cianan 6/97 - 5/98 and Cecilia 4/99 - 7/00) are hosting Walk SMArt on Saturday, May 10, 2003, to benefit FSMA. It will take place at Wompatuck State Park in Hingham, MA at 10:00am (rain or shine!). I have copies of pledge sheets if you are interested in walking! If you do not wish to collect pledges, then the suggested donation to participate is $15 per adult. The route is 1.5 paved miles. Please contact me if you would like more information or need directions! Thanks!

L, M & M ^i^

March 17, 2003
Just a reminder: Our spaghetti dinner is approaching quickly! April 12'th from 4-8pm . . . All you can eat bread, salad, and spaghetti & meatballs. Dessert will follow. Raffles, fun, & surprises will also take place that evening. This is happening courtesy of JC's Place 138 Lake Street in Webster, MA. Tickets are $8 each, children under 12 are $4 each. ALL proceeds will benefit Families of SMA (www.fsma.org) It is better to purchase your tickets in advance . . . email me at info@marshallpotter.com to do so. Or, you can call me also! Looking forward to seeing you there! And, Come Hungry!

March 17, 2003
Dear Marshall,

It's 52 gorgeous degrees today . . . with the potential of nearing 60! Not sure if you had anything to do with that or not, but know that I appreciate it more than I could describe. Maybe the snow that keeps your site hidden can finally melt so that I can find you! I'll look for you and your Papa Mo today . . . and if I can't find you both, then I will try again tomorrow! I'm going to bring you something special . . . in the meantime, you keep that sunshine HERE for us! Lots of love to you, Star.

Mom

March 17, 2003
Well, I went to the cemetary to dig out the site. I found them alright thanks to the guy who is buried next to them! (Thanks Larry!) Larry has a stone that stands up (my dad's lies flat and Marshall's can't go in until May - so this is why I have such a hard time finding them in the winter!) Anyway, I quickly located my dad's stone under the snow and dug it out. I know that Marshall lies exactly below there, so I kept digging, and I found his mound of dirt and all of the stuffed animals that were placed there the day that we buried him. They were still all iced into the ground so I dug them out the best I could (they're still iced in there pretty good. . . more sun, Marshall D.!) Anyway, one of them has a music box on it that plays "You are my Sunshine". Tante Celia bought it for us when Marshall was born. I placed it there the day we buried him and begged Jerry (the funeral director) not to bury it with Marshall, but to leave it on the top because I wanted people to know my baby was under that mound of dirt! I knew his stone wouldn't be in for several months. Well, today when I shoveled all the snow off it, to my absolute delight, it STILL plays!!! Imagine that . . . almost 3 months of being under the cold, wet snow, and it STILL played just as beautifully as the last time I heard it - the day we buried Marshall. To me, this is another example of my Little Man STILL doing his work well.

I left Marshall a large duck and a balloon, which I tied to the duck. So, if you drive by, look up the hill and maybe you will be able to see it from the road! (Some of you seem to think you need concrete things to "see" that Marshall is around us all the time . . .) but, I "see" him every day!

Laurie

March 16, 2003
THERE IS NO FUNDRAISER MEETING ON MONDAY NIGHT, MARCH 17'TH. HAPPY ST. PATRICK'S DAY!

March 16, 2003
On Thursday afternoon, I was on my way home from work in the middle of a snowfall. Preparing to leave for my trip to Canada, I was doing what I spend most of my time doing; thinking about Marshall. When I drove past the road that leads to Marshall's burial site, I said outloud "Bye, Little Man, I'll miss you". Right then, a whole cloud of sparkling snow gently fell on the hood of my Jeep as I was driving under a tree. I just know it was Marshall recognizing what I had just spoken to him. I know he's still around us so often . . . Thanks Pal!

After I got home from work, I began my trek to Canada with my mom and one of her sisters. We met my grandparents, 3 more of my mom's sisters and 2 of their husbands at the halfway point, (in Bangor Maine) on Thursday night. We all continued the rest of the way on Friday. We had a good time up there with all of our cousins. It was refreshing to think about something else, besides SMA, for once. I even laughed a few times too; that is something that doesn't always come easy to me, as I am scarred with a pain that often doesn't allow me to enjoy myself. Of course I thought of nothing but Marshall the whole time I was there and although he let me know each day that he was around me; I still missed him terribly, just as I do each and every day.

SPECIAL THANK YOU'S TO: Maria McEachreon and Ronalda Gallant for donating two beautiful items to our raffles. We can't wait to begin selling tickets for the gorgeous SMA Angel x-stitch blanket from Maria and the beautiful 'winter scene' painting done by MaTante Ronnie. You will WANT to get involved in these raffles, folks! Email or call me for details! I'll try to post pictures of these prizes on the site if I can . . .

Also, MonOncle Bob and MaTante Colette, Nathalie & Mathieu, thanks for the hospitality and all of the great food all weekend long!


I also want to thank my mother's cousins; The Doiron family (an interesting fact for those of you who aren't familiar with our family - if you thought 10 children were a lot for one family, this family has 13!) The Doiron's showed a lot of support (buying tickets for our events even though they cannot make it for either event!) I received lots of hugs, prayers and support from all of them. They are a wonderful family!

Again, in the midst of my continual sadness, I realize how blessed we continue to be. Thank you Marshall for STILL doing your work well. We love you more than we could ever describe.

L, M & M ^i^

March 12, 2003
We all know that Marshall will forever be in my heart. As of today, He will be forever on my back also! I had a very symbolistic tattoo done today, in memory of my Little Man. Prior to loving my son Marshall, I'd never been a fan of tattoos; but this was something I felt that I needed to do, as a tribute to Marshall. It was designed by my friend, Monica, who loved Marshall dearly and completely understands the symbolism of it. (I'll be happy to explain it to you if you'd like to know what it's all about!) I'm very happy with the way that it came out. If you'd like to see it, I'd be happy to show it to you. Or, you can check back here for a picture of it (in a week or 2). I hope everyone is well. Cole Webb, we are still thinking of you and praying hard. We love you, Little Man.

Laurie

March 11, 2003
Hi Everyone, this is an urgent request for more prayers for Cole, please! A portion of Cole's right lung has collapsed. We don't want Cole to experience any suffering. Please pray for peace for Cole and strength and healing for his loving parents. Kristin & Dan, please call if you need anything. You have all of our support. Cole, we love you. Marshall, you look out for Cole. You know what to do! We love you too, Little Man.

March 10, 2003
Please say lots of prayers for my pal, Cole Webb. Cole is really struggling this week. Please pray for the strength of his parents, as I can attest that this is the hardest thing they will ever do. Kristin, Dan & Cole, we love you guys . . .

L, M & M ^i^

March 9, 2003
Mark and I would like to take this opportunity to thank everyone from our church (UPC-Whitinsville, MA) for their extreme generosity. Today, a luncheon was held in Marshall's memory, for everyone in the church, and a free will offering was taken. We were quite surprised at the amount that was handed over to us. Tomorrow, I will be mailing it out to Audrey Lewis and the folks at FSMA. We are getting closer to finding that cure!

Thanks for your support, everyone!

L, M, & M ^i^

March 8, 2003
I have a recommendation for anyone who loved (and still loves!) Marshall as deeply as we did and still do. There is a song out there called "I Believe" by Diamond Rio. Go look for it! It's a fairly new song, so I assume it would be on their most recent album. Anyway, this song speaks volumes to me. It's speaks of how we believe that angels are ever present, and that the loved ones whom have gone before us are continually present in our lives. I truly believe every word in the song and it has become a comfort to me. You could also download it from Kazaa for free, if you don't want to go and buy the whole CD.

Please continue to pray for my pals, Jenny Gaudreau and Cole Webb. Also, I have several friends in various stages of rebuilding their families after living through the devastation of SMA . . . some are awaiting genetic testing results, some are trying to become pregnant, some are awaiting CVS testing to see if the child they are currently expecting will be affected with SMA or not. They too, all need prayers! These are very scary times for all of them. And still, those families who have lost their children to SMA, as they continue to mourn the loss of their precious babies. We could all use a little strength and courage! Mark and I would also appreciate extra prayers, as you know there is nothing we'd like more than to have a healthy child ourselves, to love some day. We have faith in our shining star, to help us achieve this. We love you, Star!

March 8, 2003
I can officially say that I have finally grown accustomed to being childless again. I hate the feeling; but nonetheless, I am no longer a mother and I have come to realize that. It took weeks, and in a couple of instances months, before I stopped going to the back seat of the car (undoubtedly to get Marshall out), or getting up to make my way to the couch to check on him during dinner. Most recently, I found myself waking up at night and opening my eyes to see Marshall sleeping next to me. Needless to say, he's not there. (Not physically anyway - I DO feel that he's around me all the time, but not in the sense that I would prefer!)

I have forgotten what his little noises sounded like, and I have forgotten his smell. Those are the two things I miss the most. I could easily be reminded of what he sounded like, if I would just turn on the video that we had taken of him during his whole life with us. But, that would be entirely too painful and I'm not sure I will ever be able to watch it. Still, I find a bit of consolation just knowing it's there waiting for me to be ready.

There are 3 feelings I will never forget. I could never forget the unconditional love that I felt for Marshall. I never understood that type of love until I became a mother, and so I think that it will stick with me forever because I have experienced it even if only for a few short months. Something else that sticks with me vividly, is the way Marshall's tongue felt on my nose, when he would give me wet baby kisses there. I don't think I could ever forget that. He would try to utter a giggle when we played that little game. Most of the time he was too weak to create any type of noise, so he just smiled; and in his eyes, I knew what he was saying. The last thing I could never forget is Marshall's breath; that is what has sustained me. Even before I knew he was dying, I used to lie directly in front of him and time my breathing so that it was exactly opposite his. I would inhale each breath that would leave his little body. Once we knew we were losing him, I would literally lie in front of him for as long as he would stay sleeping, just breathing in his breath; enjoying every one, while it still existed. Most nights, his breathing changes were how I would wake up if Marshall needed me. (He slept next to me in the big bed because he was too weak to even make a noise - so I never would have heard him if he wasn't literally forehead to forehead with me - I enjoyed the closeness and I know he did too). If he awoke in the night, his breathing pattern changed, and that was the only thing that alerted me that he needed attention. Needless to say, I never really slept. But, that is okay because I got to spend so much time with my baby boy, and this was so very important to me since his time here was so brief.

It seems like years ago that we lost Marshall - when in reality, it has just been 76 days. We hope that as time passes, it won't seem to be in slow motion so much. Every day without Marshall feels like an eternity to me.

And, speaking of eternity, anyone in New England knows that this winter has been an eternity, so I think I speak for all of us when I say that Spring will be welcomed with open arms. We are hoping that the change of seasons will help us pick up and move on a little easier. We have many plans for honoring Marshall, including a memorial garden that we will build in the front yard. But, we can't begin this until the snow goes away, and so far, we just keep getting more and more and more and more!

Before ending this note, Marshall and I want to thank our good friends, Charlie and his mom, Kathy, for sending us a beautiful angel today. You can visit Charlie's site at www.caringbridge.org/mn/charlie Charlie has been in heaven for over a year now, and his mom is a huge part of the reason I have even made it through this whole ordeal. I will forever be grateful for her friendship and her ability to understand exactly what this has been like. She has been nothing less than completely understanding and supportive to me since last October, and always seems to know just when to shine through! I thank God for bringing her and so many others into my life, over the past several months.

I continue to meet many other wonderful people as time goes on. Most of these people come as a direct result of Marshall and SMA; I like to think that Marshall is STILL doing his work well. We'll always love you and miss you, Pal!

Laurie, Mark & Marshall ^i^

March 5, 2003
The following article was sent to me from Gina Fimbel, mom to Angel Andrew (08/26/00 - 02/17/01). I thought it was quite informative and made some good points. Thanks for passing it along, Gina!

Rare Diseases Force Families
To Fund Medical Research

By VANESSA FUHRMANS
Staff Reporter of THE WALL STREET JOURNAL

What's bankrolling the $5.2 million (€4.8 million) drug-discovery contract that deCODE Genetics Inc. just scored? Think bowl-a-thons, amateur golf tournaments and proceeds from homemade origami.

The money was given to the Icelandic biotech company by Families of Spinal Muscular Atrophy , a network of 5,000 families across the U.S. and Europe with children afflicted with a rare neurological disorder that causes muscle weakness and often death. With no treatment in sight, the families are working to develop their own by funding research. DeCODE's job is to identify and enhance the best of several possible drug compounds so that one will be ready for clinical trials in a few years.

While other patient organizations have funded drug research and testing, Families of SMA is starting to act like a virtual drug-research firm, using its dollars to drive a potential drug down the same traditional research and development path used by the pharmaceutical industry. Should the research lead to a treatment, the group hopes to keep some control of the treatment to make sure its families can afford it.

'Orphan' Diseases

The approach -- similar to strategies adopted by the Cystic Fibrosis Foundation and the Heritage Disease Foundation for Huntington's disease -- may provide another model for tackling dozens of other deadly diseases too rare for big drug makers to see profit potential. An estimated 25 million people suffer from 6,000 such "orphan" diseases.

"I'm not sure we had a choice," says Audrey Lewis, the group's executive director, whose 20-year-old son suffers from SMA. "If we were sitting back and waiting for someone else, we'd be waiting for a treatment for a very long time."

SMA is obscure enough that the family organization also doesn't have government funding (although some researchers the group supports have won government grants separately). Because many die before their second birthday, the number of living patients with genetic disease remains small, about 25,000 in the U.S.

Research into the disease hadn't made much progress until Mrs. Lewis and her husband, Joe, banded together with a few other Chicago-area families in 1984. A few months before, she had taken her son, Garett, then 13 months old, to the hospital to find out why he wasn't yet crawling. "I brought a healthy child in; I left with a child they told me would probably die before he was two," says Mrs. Lewis, a wispy woman of 1.5 meters who runs her own jewelry-designing business.

The families have raised $12 million by organizing events such as "fun runs," black-tie dinners and scavenger hunts. Mrs. Lewis also designed a special line of silver jewelry to sell for the cause.

The group went about finding the gene that triggered its current drug-discovery program in the same grass-roots manner. In 1986, the families began pooling their genetic histories and DNA samples. Four years later, researchers sponsored by Families of SMA used this data to trace the disease's roots to a specific chromosome.

But the most hopeful break came in 1997, when another group of researchers financed by the families zeroed in on not just one gene linked to SMA but a copy with which a drug might interact. Unlike the original gene, which is missing in patients with the disease, the copy remains but carries a mutation. Scientists believe the mutation prevents the body from producing normal levels of a critical protein. They reasoned that if there was a compound that altered the gene's biochemistry to bring protein production back to normal, that might treat or even cure SMA.

It was that finding that triggered the group to strike its first biotechnology deal in 2000 -- with Aurora Biosciences Corp., a San Diego biotech company that has since been acquired by Vertex Pharmaceuticals Inc. -- and to leap into the risky and costly business of real drug discovery. Until then, the families had given academic research grants of a couple hundred thousand dollars at most. The contract with Aurora to screen one million drug compounds for signs of interaction with the gene cost $2.6 million.

Chemical Properties

As in any drug-discovery project at this stage, it's far from certain whether these research successes will lead to a drug that isn't toxic, as well as being able to manipulate the gene to increase production. That's what it hopes deCODE will confirm as it examines the chemical properties of a handful of the compounds that showed biological activity in Aurora's tests. The vast majority of potential drugs never make it to clinical trials, and of those that do, many fail during studies.

The decision to take the next big step underscores the single-mindedness of Families of SMA and contrasts it with the commercial drug industry. But Families of SMA does have safeguards such as a scientific advisory board to help the group direct money toward the most promising research. Scientists who receive Families of SMA grants also are expected to report quarterly or semiannually on their progress.

Hard-Earned Funds

In its quest to find a treatment for one disease only, the families are willing to take chances a drug maker might forgo for more tests or another project. "They're focused on making sure their hard-earned funds are used to the best advantage," says Arthur Burghes, professor of genetics and biochemistry at Ohio State University, whose SMA research the group has financed. "But in the end this is personal, and they're inclined to take those risks."

Some patient groups argue the risks might be too great for an organization with such limited funds. Though the group also is financing research into gene therapy and stem-cell technology, much of its funds are committed to the drug-discovery program for which deCODE has been contracted.

"Nonprofit organizations should understand better than anyone: You don't put your eggs all in one basket," says Abbey Meyers, president of the National Organization for Rare Disorders, a U.S. group. She advocates a more traditional patient-group approach to financing research: help scientists on a broad number of fronts, then encourage them to seek government funding.

With the help of orphan-drug legislation, which gives the drug industry financial and competitive incentives for developing treatments to rare diseases, companies are willing to take on such projects. "But no company is going to help unless they can do it independently with full control of the price," Ms. Meyers says.

Mrs. Lewis says her group still has time to sort out what kind of partnership it will use to embark on clinical trials, when and if it reaches that point. The priority, she says, is to find a promising drug. For any less radical approach, she says, "we just don't have time."

March 5, 2003
We are finally selling raffle tickets for one of our raffles that will be drawn at our event on June 13, 2003. Tickets for this particular raffle are $1/each, and you don't have to be present to win.

This Raffle is called the Fitness & Fun Raffle . . .

The first prize is a 3 month membership donated by Fitness Management Systems in Worcester, MA.

The second prize is a Centrix Mountain Bike, donated by R.G. Shakour

The third prize is for 2 personal training sessions donated by Mary MacAdam

The fourth prize is a one hour massage donated by Therapeutic Massage of Auburn, MA

Contact Laurie (info@marshallpotter.com) for more information!

Thanks Everyone!

March 5, 2003
Please check out the following link to meet Jenny G. Jenny has SMA Type II and lives in Massachusetts also. I think you will find her site to be beautiful, inspirational, and informative. She has a great family as well! Enjoy her site.
www.our-sma-angels.com/jennifersworld

March 4, 2003
I decided to add a couple more comments that I have received recently, solely for the reason that they make me feel GOOD about what we've gone through in the past 5 months, so if one of these is your comment (only you and I will know that!), then thank you for sending it to me. I thought you all might want to read a bit of what I have received over the past week or so. Mark and I appreciate they undying support and love from everyone.

Here are just a few of the wonderful things I have read lately:

"You are some of the bravest most selfless people I know. Unfortunately there aren't more like you around."

"I am proud and in constant awe of the strength and courage you and Mark showed through both loving and caring for Marshall."

"Marshall was one of the luckiest babies ever to have
parents like you and he had more love in his short time here than most receive in a lifetime"

"Know this Laurie, the decision your husband and you made for little Marshall required faith. Faith in your conviction, faith in your courage, faith in love, faith in family, faith in your heart and faith in life. You helped him be all he could be while he was here. That's a mighty fine memory to hold onto and not many parents can say they did that for their child."

"Keep up the good work Laurie!! I am so proud of you and Mark. What a difference you have made in so many lives!!"

"KNOW that you are doing a good thing"

"WE ALL KNOW MARSHALL FELT NOTHING BUT LOVE."

"I am so proud of you and how you've come through all that SMA has thrown your way. You go girl! You are doing tremendous things to FIND THAT CURE! I know that little man Marshall is giving you all this undying strength to fight the fight!"

Thanks again for the support everyone! We love you all!

L, M, & ^i^

March 4, 2003
Our story (an abridged version!) has been featured on the front page of www.breastfeeding.com It will only be up for a short time longer, so if you get to the front page and it is gone, click the link to the left entitled "Reading" and it should take you there.

L, M, & ^i^

March 4, 2003
I forgot to say that you can see the t-shirt design by going to www.smasupport.com and clicking on the left on 4-4-4 for a cure (or something to that effect.) Thanks.

~L

March 3, 2003
Hello Everyone . .. It's been almost a week since I've done an update. The fundraising preparation is going well. In addition to the 2 events that everyone knows about, we are also going to host a Spaghetti Dinner at JC's in Webster. Starlette (the owner) is nice enough to donate all the food and sitting room so that we can raise more money for FSMA! That event will be on April 12, from 4-8pm. JC's is located at 138 Lake Street, in Webster. For $8 a person (not sure about the cost of children yet), you will get all the salad, bread and spaghetti & meatballs that you can eat that evening. This is a great way to support our cause, so come on over and eat spaghetti with us and know that you are supporting FSMA. Every cent we raise is one cent closer to that cure!

I want to add a special Thank you to Audrey Lewis, the Exec. Dir. of the National Chapter of FSMA. I appreciate all the phone calls and support and everything that you do for me and all of the other SMA families. I feel very lucky and blessed to know you.

On another note, please pray for Taleah English, who has been hospitalized for several days, awaiting extubation. Also, for the family of Ryan Nolan, who joined the Angels in heaven this week. Cole Webb, we're also thinking of you and hope you are feeling okay!

Happy, Happy Birthday to our Massachusetts neighbor, Connor Reilly, who turns ONE YEAR OLD tomorrow! YAY Connor! We will be thinking of you and hoping you have a great day!

Take Care everyone.

Love,

Laurie & Mark and ^i^ Marshall D.

March 3, 2003
I received the following message from someone who came to view our site. She has given me permission to post it and I am so thankful she wrote it. She has put into words what so many of us believe; this is the true feeling that MOST of us get when we view Marshall's site. Thank you, Lori Hart for your beautiful message. We are so glad you took the time to become acquainted with our story and our family.

Lori's message follows:

Someone once told me that happiness lies in the smile of a child and I have never been more sure of it then now. It was evident in your beautiful son's face that he was so happy. Bless you for loving him and giving him all you could. I'm sure he's watching over your family and he'll be back someday to share his beautiful smile with the world again.

Lori Hart

February 25, 2003
I just had a thought . . . If anyone would like to join FSMA, please feel free to do that. You need not have a child who is affected by SMA, knowing and loving Marshall was enough! If you would like to become a member, please visit http://www.fsma.org/joinfsma.shtml It's just $25/year per family to join. Your membership includes publications that will keep you up to date on research breakthroughs for finding that much needed cure. You will also become acquainted with many, many families whose lives have been affected by SMA. (If I'm not mistaken, Marshall's story/memorial will be in the next issue of "Directions" - the publication put out by FSMA.) Also, the money that you pay for your membership also helps with funding research that will bring us that magical cure. Please consider joining today!

February 25, 2003
I want to thank the Cyr family for all of the thoughts and prayers over the past few months. I had no idea how much of an effect Marshall and our family have had on your family. (There are probably so many more families that have experienced the same feelings, that I am not even aware of!) It is inspiring for us to know that we have a boatload of thoughts and prayers even STILL!

To Lori & anyone else who thinks they might benefit from it, please go out and get yourself a copy of my favorite book . . . "The Angel with the Golden Glow" by Elissa Al-Chokhachy. This story could have easily been written about Marshall without having changed a single word. It is easy for children to understand (it's great for adults too, as we too, may never truly understand why this happened!) After you read it, just know that we are NOT yet expecting the Angel with the Tender Heart, but are axiously awaiting the day that we will be graced with his presence. We look to our shining star in the sky to help us with that one! Did you hear that, Star? We're ready when you are!

February 25, 2003
A very dear friend sent me the following story. It comes at a time when I needed to hear it. I hope it is as effective for you as it was for me.

TWO TRAVELING ANGELS

"Two traveling angels stopped to spend the night
in the home of a wealthy family. The family was rude and refused to let the angels stay in the mansion's guest room.
Instead the angels were given a small space in
the cold basement.

As they made their bed on the hard floor, the
older angel saw a hole in the wall and repaired it.
When the younger angel asked why, the older angel
replied, "Things aren't always what they seem."

The next night the pair came to rest at the house
of a very poor, but very hospitable farmer and his
wife. After sharing what little food they had the couple
let the angels sleep in their bed where they could have a good night's rest.

When the sun came up the next morning the angels
found the farmer and his wife in tears.
Their only cow, whose milk had been their sole income, lay dead in the field.

The younger angel was infuriated and asked the older angel how could you have let this happen? The first man had everything, yet you helped him, she accused. The second family had little but was willing to share everything, and you let the cow die.

"Things aren't always what they seem," the older angel replied. "When we stayed in the basement of the mansion, I
noticed there was gold stored in that hole in the wall.
Since the owner was so obsessed with greed and
unwilling to share his good fortune, I sealed the wall so he wouldn't find it. Then last night as we slept in the farmers bed, the angel of death came for his wife. I gave him the cow instead. Things aren't always what they seem."

Sometimes that is exactly what happens when things don't turn out the way they should. If you have faith, you just need to trust that every out come is always to your advantage. You just might not know it until some time later...

I take this to mean that there was a reason that we lost Marshall. While I don't yet fully understand that reason, I do believe that some day I will. Perhaps it will be the day that I am reunited with my sweet Angel.

Happy Tuesday Everyone.

Lau

February 24, 2003
The follwing is a list of Marshall's contacts who have so kindly written letters to their senators or house reps. to support Senator Corzine's bill to increase NIH funding for SMA: Tony Lorenzen, Caroline Berube, Louise Berube, Mariann Allain, Julie & Jim Gadbois, Kimberly Morrow, Tammy Sena, Kathleen Quinlivan-Beck, Lori Beaudoin and Lisa Allain. Thanks everyone for your support. It's not too late to write your House Rep. Contact me for details!

February 24, 2003
Please say a prayer for Marshall's pal, Cole Webb . . . Cole lives in St. Louis and also suffers from SMA Type I. He is an only child and he was born just 3 days before Marshall was. His mom has become very dear to me. Cole's parents are starting to notice some real progression with the disease. His chest is caving in worse. We don't know how much longer Mr. Cole has on this earth, but we hope and pray that he doesn't suffer the way Marshall did. His parents are now feeling battered by the decisions that must be made . . . I know those feelings about decisions, and there is nothing easy about them. My heart breaks for them because the inevitable is approaching. I very much wish I could take away their pain . . . please pray for peace for Cole and healing for Kristin & Dan. I can only be comforted at this point, by knowing that Cole has a very special guardian angel right now, watching out for him. Please be with Mr. Cole, Marshall D.

*Our thoughts and prayers are with the entire Webb family.

February 22, 2003
To MY Little Man - 2 months ago you decided you had had enough of SMA. I can't say that I blame you; there was nothing fun about having that! I miss you terribly and can't wait to hold you again some day. Stay close to us and send more signs! We love you and we miss you (and we're STILL waiting - patiently, of course!)
Love,
Your Mom

February 22, 2003

A million times

A million times we've needed you,
A million times we've cried.
If love alone could have saved you,
You never would have died.
In life we loved you dearly,
In death we love you still.
In our hearts you hold a place,
No one will ever fill.
It broke our hearts to lose you,
But you didn't go alone.
Part of us went with you,
The day God took you home.

Ann Herndon

February 21, 2003
Last night before bed, I was watching the evening news. One of the reports was saying how the bad weather here has affected blood donations in all of New England. People seem to be less apt to leave their homes in foul weather . . .who can blame them? So, before I went to bed, I decided that today, I would go and donate blood(something I have never done before). When I woke up this morning and heard about the major tragedy in Warwick, RI last night, I decided that I definitely had to go donate right then because so many more people would now be requiring blood.

When I arrived at the Donor Center at UMass, they thought two things about me that were wrong. They were sure I didn't weigh enough . . . I proved them wrong! And, they thought I was about 17 years old. I told them I was surprised they gave me that many and they told me that they thought I was younger than that, but that the minimal age for donation was 17, so that's about what they figured. My, were they surprised when I told them the truth!

Anyway, when I entered the tiny room to give my history report at the computer, the woman entering my report was sitting there and as soon as I sat next to her, the computer screen went black. She couldn't get it to come back on and said "hmmmm, that's strange . . ." (Thanks Little Man - but I knew you were there the whole time anyway!) Then, they were asking me why I wanted to donate. I told them about last night, but I also told them that I was doing it in memory of my little boy. See, I never waste an opportunity to educate one about SMA, Marshall, and our fundraiser. (Coincidentally, I just so happened to have some posters in my bag too!) So, I gave everyone a poster to look at and the doctor said that he would definitely post it in the Donor room. I explained to them how I wanted Marshall's organs donated very badly and it didn't work out, so I was doing this in memory of him. They all thought it was a nice way to honor him . . . I did too. Just thought I'd share that story with you, and any of you looking for another way to honor Marshall, go ahead and give blood. They need it badly! Thanks!

February 21, 2003
Just an update on the "Call to Action". I am very pleased to see Massachusetts has been added, thanks in part to your letters, and to Senator Kerry!

Although Sen. Corzine’s sign-on letter is in the early stages, there are already six Senators who have agreed to sign-on to the letter! Congratulations to our families in New Jersey, Virginia, Massachusetts, Connecticut, and Oregon!

As always, there is another letter you can write. We now need support from the Representatives in the House. Please contact me for more info. or read ahead here. Thanks everyone!

HOUSE Call to Action

Thank you for your great work on sending so many letters to your Senators! We are well on our way to securing strong support for increased funding in the Senate. For those of you who have not yet sent letters to your Senators, it’s not too late!

We are confident that many more Senators will sign this important letter to NIH because of YOUR letters!

Now, we need everyone to write to their Representatives in the House. Rep. “Duke” Cunningham from California, Rep. Susan Davis of California and Rep. Eric Cantor of Virginia are leading the effort for SMA families in the House. We need to urge Members to sign-on to the House letter!

As the next step, please also participate in the SMA “Call to Action” to Members of Congress in the U.S. House of Representatives. There is another letter being circulated in the House, and Members of Congress are more likely to sign it if they know it will help the people they care about – their constituents! The Second “Call to Action” will take just a few minutes but it will make a great difference! Using the attached draft letter as a guide, write a letter to your Representative in the House. As best you can, make it personal! Since many Districts in the House have changed over the last year, and since there are 435 Members of Congress, the best way to identify and write your Representative is by following the simple, step-by-step instructions at http://www.house.gov/writerep/ . Please note: The Write Your Representative service does not allow for access to your message once the Send Your Message button has been selected. To keep a copy of the text for yourself and to avoid the hassle of re-writing the draft letter we have provided, please follow these steps before processing your message through the Write Your Representative service:

1. Write you letter based on the draft we have provided.

2. Perform a Select All (CRTL-A), then a Copy command (CTRL-C). This will save a copy of your text to the clipboard, essentially creating a temporary file.
NOTE: To keep a permanent copy of the message for your records you should also perform Save.

3. Proceed through the Write Your Representative service entering your State and Zip Code and click on Submit. After validation you will be presented with the Message Page containing a large text box.

4. Click in the text box on the Message Page to locate your cursor and perform a Paste (CTRL-V) command. The text that you copied to your clipboard should then appear in the text box on the Message Page.

5. Click the Send Your Message button to process your message.

6. Lastly, please send a copy to sma@wswdc.com so we can follow-up!

If you send by mail, please note that mail in the U.S. Capitol is still being screened for anthrax so it often takes weeks to get there! So if you can, email or fax! If you do not have access to e-mail, please send your letters to the SMA Coalition at the address below and we will send your letters for you, but please be sure to include your address, so we can identify your Representative!



SMA Call to Action

819 7th Street NW

Suite 501

Washington, DC 20001

Fax: (202) 589-1288



As your Representatives sign on to the letter, we will send you updates! When you see your Representative’s name, you will know that these few minutes have been worth your time! And if you don’t see their name, we will ask that you contact them again to remind them of your request! Remember, you are their constituent and their job is to help address the issues you care most about. With your help, we will get more research dollars for SMA and the NIH and NINDS will move quickly on translational research.



Please do not hesitate to call Jennifer Cruickshank at (202) 589-0800 if you have any questions or if you need assistance! The more letters we write, the more U.S. Members of Congress in the House of Representatives will sign on to this important letter to NIH!



Finally -- please stay tuned for future “Calls to Action.”



THANK YOU!



Jennifer R. Cruickshank

Associate

Winning Strategies Washington

819 7th Street, NW

Suite 501

Washington, DC 20001



202.589.0800 phone

202.589.1288 fax

www.wswdc.com

February 19, 2003
Marshall is still doing his work well. Today while I was out at the post office, someone approached ME and asked ME for fundraising information so that he could collect donations for US for FSMA. Maybe all of our efforts, plus me driving around the SMA-Mobile are starting to pay off. In any case, it was nice to be the ask-ee instead of the ask-er, when it comes to all of this fundraising stuff. Yesterday I met an angel named Terry. She seemed to be very touched by Marshall's story and is going to try to help us once business picks up again. I really enjoyed speaking with someone who was truly interested in Marshall, SMA, and our story. There was another as well, one named Bill. He was kind enough to donate to our cause and also was very interested in Marshall and SMA. It truly warms my heart to know that people are interested in learning about the disease that ravaged my baby, so much so that they want to help us.

I've been in touch recently, with a wonderful family who has also been affected by SMA. Their 17 month old daughter has Type II. They have been a great support to me over the past 2 or so weeks. They have helped me realize that it is time to stop questioning my decisions for Marshall; it is time to realize that I did the best I could for him and everything I decided for him was decided out of love for him. Thanks in part to Sue & Jim, I am starting to realize that I should stop beating myself up for what happened. I will always feel guilty for a lot of things, but this was not my fault. You can see Sue & Jim's beautiful little girl, Jenny, on www.fsma.org and click on the photo album, then the family photo album. If you "browse the album", Jenny is the first child featured on the second page. I've sent in a request for Marshall's picture to be placed on the "Memorial Album" but it has not been processed yet. The folks at FSMA are very busy, gearing up for the conference in DC, which takes place during the weekend that falls between our two HUGE events. Mark and I are having a very busy June, this year.

Before leaving the site today, Please say a prayer for Jenny, that she retains her good health and spirits. Also, to my Angel, Marshall D., you know of 2 things that I NEED right now. Please send them as soon as you can! I'm counting on you! Thanks Little Man!

February 18, 2003
If you have time to be reading this right now, you have time to write your senators! If you haven't done that, PLEASE do it right now. Email me if you need the template letter. We NEED to encourage the co-signing of our state senators (in ALL 50 states!) on Senator Corzine's letter to the NIH to support ongoing and new research efforts to find a cure for SMA.

Yes, it is too late for Marshall. It is NOT too late for the 1,000 new babies that will be born with SMA this year. Would you be more apt to write this letter if it were your child who were clinging to life because he or she had been affected by SMA? Remember that if you are a relative of Mark's or mine, this is a very real and scary possibility for you! (*It's not too late for genetic testing!) Remember also, the struggle that our Little Man Marshall endured. That should be enough ambition to make you write your letter to your state senator. Please do it now. It takes just a few minutes, and it can definitely make a difference. We appreciate your support.

Mark and I are hanging in there. This has not been an easy journey . . . we didn't expect it to be. I still cry for Marshall EVERY day and I may do that for the rest of my life. It hasn't gotten any easier, that's for sure. We thank God that we have eachother and the few people who can understand exactly what we are going through. To those who can only try to understand, we appreciate your love and support also. Take Care everyone.

Love,

L, M & the cutest guardian angel there EVER was - Marshall

February 16, 2003
I recently sent out an email asking you to write your state senators to support the "Call to Action". There is a generic template letter that you can use, and then it is up to you if you would like to personalize it with anything about Marshall. If you did not get this email, please ask me for the information. It is very important that we all support the signing of this bill. SMA NEEDS more attention in the form of awareness as well as funds. It sickens me to think of how many more children we will lose to SMA, before that much-needed cure is found.

To our dear son, Marshall: It is getting more and more difficult to be without you. We do not find that time makes things easier . . . .if anything, it only makes us feel further away from the time that we once held you. Things will never be the same for us again. We miss you and love you with our whole hearts. Please stay close, Little Man. Only you know what we need right now, and we believe you can help us with that. We love you Pal.

Mom & Dad

February 15, 2003
"For now be my friend,
Accept me as the person I am.
Don't force me to shut you out...
For now try to understand,
Don't tell me lies that will confuse me further...
For now be patient,
Inside me is a beautiful person,
Just give me time...
For now let me know you care,
Meet me halfway and I'll walk with you from there."

Author Unknown

February 13, 2003
"Could we ever forget your sparkling eyes
or the way you brightened each day,
or your smile which is etched in our memories,
so you're never far away?
Could we ever forget those priceless moments?
The answer, of course, is never.
For you were part of our lives for a brief time,
but you'll be part of our hearts forever." Author Unknown

February 12, 2003
I received this as an email today from FSMA. You may find it interesting. It certainly gives us a good idea of why it is SO IMPORTANT to raise money for FSMA. The cost of research is phenomenal and intimidating. Please continue to support this worthwhile cause and organization. Marshall's friends (and future siblings) are counting on you and your support.



Dear Members and Supporters of FSMA,

Families of Spinal Muscular Atrophy announced today the signing of an
agreement with deCODE genetics to carry out one of the most aggressive drug
development drives ever undertaken by a family based patients' organization.

This $5.2 million, 3 year drug development project will build upon the success
of the Families of SMA/Aurora Collaboration. deCODE, through its subsidiary
Medichem, will identify the most promising lead compounds and work to develop
a potentially effective new drug ready for clinical trials.

A copy of the press release is on our web site - see
http://www.CureSMA.com/decode2003a.shtml for details.

Families of SMA has committed to spend over $10 million in SMA research over
the next 3 years.

We thank you for your past support and ask for your continued support in
helping us fund this very important project.

Together we will find a cure!

The Families of SMA Board of Directors
http://www.curesma.com
------------------------------

February 10, 2003
Hi Everyone,

I'm not sure how often I will update this journal - I guess as often as I feel like doing it. Today was a difficult day. I don't know what was different about today, in comparison to any other day, but it was just a sad time for me. I miss Marshall terribly. There are some days I feel okay, and I can even feel myself smiling. Then, there are the days like today. I am constantly reminded of Marshall no matter what I do. Sometimes, they are good thoughts, but most of the time, they make me sad, angry and incredibly jealous. I am continually reminded of the things Marshall should have been doing at this wonderful age of almost 6 months. Children in strollers, in their carseats, being carried by their parents, in the store, in the parking lots, and everywhere I go. The thoughts that flood my mind are those of Marshall learning to sit up and do things like drink from a sippy cup. Still, there are even some simpler thoughts than that. I would have rejoiced to see my son kick his legs, even once. I would have given anything to have heard him cry out loud, or laugh out loud or even utter any type of noise beyond his 12'th week. I imagine the excitement he would have shown if he could have played with even one of those toys that we bought for him. DAMN YOU, SMA - for stealing my baby's ability to move, suck, swallow, smile, breathe, and ev