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