Dear Marshall . . . with love from Tante Mariann

Dear Marshall,

I hope that this finds you running, laughing and playing freely…free from the constraints that SMA put on you and your body.

I really didn’t get a chance to tell you everything that I would have liked to during your short stay with us. I want to tell you how special you were to me. When your mommy called me one night in February of 2002 to tell me she was going to have a baby…I was so excited! I felt special because she wanted to tell me in person. I don’t know if you realized it or not but your Mommy is very special to me. We have developed a unique relationship over the years while she used to take care of Ben and Nicole (your cousins) for me during the summer. We have had a lot of nice talks and really talk about all sorts of things in life. So, it only makes sense that I would be overjoyed that this special person was having a baby, which also meant that the baby (you) would be very special to me.

I like an element of surprise so I made your mom promise to NOT tell me whether you were a boy or a girl. She promised and tried to make sure that other family members didn’t tell me either. Well, that got ruined one day…we were at Uncle JP’s and Tante Cecile’s house and mommy accidentally said “he”. Oh well, I handled that…I wanted to know your name then but she refused to tell me.

As time went on and the pregnancy progressed, we were all overjoyed…your mom looked great (especially since you could see her bellybutton poking out under her shirt-she hated that). We were so excited that the time was coming that we would all get to meet you. Mommy could tell us at any given moment exactly how many days (not weeks) it would be until you would arrive. You were with us in Walden NY when we did the family CD (which came out great by the way). You were due to arrive in I think 62 days or something like that.

August 16th, 2002 (twelve days before you were due)…I got a message on my machine from your Memere telling me she was a grandmother!!! She was so excited! So were we…we knew of course you were a boy, how long and how much you weighed but NOT your name. It was a great day !! I didn’t get a chance to come up and see you, mommy and daddy because I had to work that night. Nicole had a birthday party. The AMAZING thing was that Uncle Norman and Ben came up to see you (this is more proof of how SPECIAL you were because men and boys don’t usually go to hospitals without the girls !!!). When they were leaving they said goodbye to all of you and Ben said that you waved to him (we didn’t know at the time the significance of this). Uncle Norm called me at work and told me that I had to go see you because “he is so damned adorable”…cutest baby he had ever seen! Now that’s something. I found out your name…thought it was a mouthful and had a particular reason for not being instantly thrilled with your name (Mommy knows why and I hope it makes her smile when she thinks of it). But don’t worry…I love your name now and absolutely love you. Nicole and I came up early the next morning and Uncle Norm was right!!! You were absolutely precious. I helped daddy put on your first Red Sox outfit…how cute and cuddly were you ?!?!?!

Mommy brought you to my house when you were 10 days old…remember? I am sorry that I had you positioned in a way that your leg turned blue…I hope I didn’t hurt you. I held you for a long time…I did that a lot when I saw you. We were all so excited to see you whenever we got the chance. One Saturday when you were 5 weeks old, you and mommy came over and mommy was upset and nervous because you had a checkup and they said that you were “floppy and had low muscle tone”. They said not to worry and that by 15months you should be OK. I think Mommy knew better though…2 weeks later…same thing and then the appointments and the real fear set in.

October 10, 2002…I was at work and your Memere called me. I knew it was bad when I heard her voice. I left work immediately and went to see you, Mom and Dad. I was so scared for you Marshall, I didn’t know what to say or do ! How can I fix it? I can’t ! I held you in my arms and wanted to protect you…what a whirlwind…I didn’t get it!!! How unfair is this??? Were some of my thoughts. I didn’t sleep much at all that night…I was on the internet trying to find out about SMA…something that even as a nurse I had never heard of before.

The next morning I went up to the hospital to see you and your parents. They were being really brave…I was in awe of them. I held you in my arms while they were talking to the social worker…remember we were playing with the Mickey balloon and we were singing “Oh Mickey you’re so fine…” I don’t know if you know this or not but I wanted to just cuddle you and run away and hide so that SMA couldn’t find you…I wanted to protect you. I felt so helpless (like we all did). It wasn’t fair that such a precious and special boy be delivered a fate such as death.

We all gathered many a time over the next several days and weeks to show you how much we all cared for and LOVED YOU!!! You were truly the “angel with the golden glow”…looking at you made people feel warm and loving. You had the ability to touch more hearts than ANYONE I have ever met before. You were so lucky to have the parents that you had…they love you more than life itself. I truly believe now that God gives SPECIAL babies to SPECIAL people and SPECIAL families. I am sure you know that you were a big part of a very large and special family. We are all truly blessed to be a part of this family and were truly blessed to have been able to know you.

I tried to help Mommy and Daddy as best I could. I have to tell you that as a nurse, it was tough to have knowledge of medical things and to discuss such tough issues with family ( a lot harder for Mom and Dad of course !). Your Mommy and Daddy had to make a lot of decisions for you (hard ones). I am still in AWE of how they handled themselves…you must be so proud of them!

I wanted to also tell you how ADORABLE you looked at Tante Caroline’s wedding, what a great day that was! You did so well. On Sunday at my house what a nice time too…your first family Christmas party! It was such a FABULOUS weekend…but I guess that was what you held out for. You did what your Mommy asked of you…what a good boy!

I will always cherish that night I spent with you on that big comfy couch ( I wish Mommy could have slept more though). I hold dear to my heart that day when we were doing “Mugga, Mugga” and you didn’t look away when Mommy called…didn’t I feel special then?

Your last day with us…I PRAY that you realize that we ALL wished you nothing but “Godspeed Little Man…Sweet dreams”. I also hope that you realize that I did everything in my power to HELP you and not hurt you. That was the ABSOLUTE hardest day in my life to have to watch all the suffering you and everyone else in that room had to do that night. I hope that your trip to heaven was a joyous one and I am sure that Papa Mo must have been so happy to see you…tell him I said HI!

Thanks for teaching me the true meaning of unconditional love. Thanks for also letting me be a witness to such unbelievable courage and strength. You did your job, and did it well…I am just sad you did it so quickly.

Marshall, you will never be forgotten! Watch over all of us…tough job for such a little man, but I know you can do it. Please take care of Mommy (please make her smile and help her to cope) and Daddy too!!

BHK & ILY,

Tante Mariann

 

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