Monday, August 24, 2009

A letter to Max: I do not regret your disabilities



Dear Max,

It's the night before your stem cell infusion at Duke University.

We've both come light years away from the week after your birth when you were in the NICU and I sat at the kitchen table in our house, our too-empty house, and desperately Googled "treatments for brain damage." I was terrified of what lay in store for you. That's when I first learned about stem cell therapy. I couldn't find a single doctor in the country who was doing it. There was one I got on the phone who said he would be willing if we got special dispensation from The Food & Drug Administration for a life-or-death situation. Then it became clear that you were going to make it; it was less clear you were going to thrive.

We lost track of the stem cell therapy, caught up in a whirlwind of doctor visits, other alternative treatments, Early Intervention and finding private therapists to work with you. You made progress on your own timeline, proving the NICU doctors wrong along with the so-called specialist who said your future looked "ominous." And then, this spring, I learned about the Duke University stem cell program from Kate, an incredible woman who somehow found this blog and who keeps a journal about her son. Kate, there are no words strong enough to express how grateful I am. I am also eternally thankful to my friend Wendy, who's watching Sabrina while we're away and who told me to bank your cord blood at birth. "You never know," she said. So true, so true.

Max, if you are someday reading this blog, I need you to understand something very important. Your dad and I are not doing this because you are lacking in our eyes. It's not because we want you to be like other kids. We are doing this only because it might make life easier for you in some way. We try our hardest to give you the best life possible, but if there is a chance you might be able to use both hands a little easier, to eat a little easier, to speak a little easier, to think a little easier, then we need to go for it.

Back when I first started talking with other moms of kids with special needs, I remember one in particular telling me that she would never trade her child for a "typical" kid. I thought she was in deep, deep denial. But now I understand. I look at you and I see only an amazing kid, not a disabled one.

You are a boy who is full of enthusiasm and sweetness and brightness and good humor and all sorts of wonderfulness. You are fascinated by cars, planes, trains, garbage trucks, tow trucks, dump trucks and basically anything that has wheels (last month, you were able to steer a toy tractor by yourself for the very first time); you can play baseball and enjoy watching it, too; you can count to ten, speak a bunch of words and recognize some in writing; you can down seemingly endless amounts of chocolate ice-cream and birthday cake; you get a wicked kick out of pulling your sister's hair; you adore rain, but not the thunder; you're obsessed with the movie Madagascar, Curious George books and, tragically, the TV show Spongebob Squarepants; you like room service and demand it when we travel; you give the most delicious slurpy kisses; you adore computer games; you enjoy all sorts of music and sometimes break into this crazy dance move that kills me every time; you have a happy squeal that makes strangers smile and a giggle that makes the world laugh with you. I am not exaggerating when I say that you charm everyone who meets you. Even grumpy people.

On this day, in the seventh summer of your life, I want you to know that I love you infinitely. I could not possibly love you any more if the stem cell therapy were to work miracles. And if it doesn't do a thing I will, of course, love you just the same.

I love you as you are, Max.

28 comments:

  1. AMEN, ELLEN. THAT'S ALL THAT YOU NEED TO SAY! WE ARE PRAYING FOR MAX'S MIRACLE!

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  2. So beautifully written.

    Praying that the stem cell therapy will help Max in some way; there is nothing wrong with wanting to make life a little easier for you child, and to not have to struggle.

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  3. Barbara from BostonAugust 24, 2009 at 11:48 PM

    That says it all. You love both of your kids FIERCELY. This is patently obvious. May what is supposed to happen, happen. Max and Sabrina are such blessed lucky kids. How I wish all children had such champions. Love and blessings to you all.
    On to the next adventure...

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  4. Tissue... I need a tissue! Ellen, that was so beautifully written. Thank you for sharing.

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  5. Oh Ellen! You have me in tears. What a beautiful letter to the amazing Max! You are in my thoughts and prayers for the treatments. I cannot wait to hear how it goes. You all continue to amaze me!

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  6. This is Joyce. Oh Ellen, the tears, how amazingly beautiful. My heart is with you and your husband as this day has finally come. There is no question of your love for Max.

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  7. Lovely Post!

    Hope stem cell therapy goes well.

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  8. no words right now.
    too choked up to get anything out really.
    you've got me in tears yet again!

    Hope all goes well with the stem cell therapy.

    BTW - you are an amazing person.

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  9. Whatever happens with the therapy, sounds like you're a very lucky lady to be taking this charmer home with you!

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  10. I hope things go well for you all tomorrow. You'll be in my thoughts.

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  11. Praying for you guys....
    and thanks a lot for making me cry at work... now everybody knows I was reading a blog instead of, you know, working! :)

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  12. Dear Max,
    Your Mommy is so cool. You are lucky.
    Love,
    gavin.

    Dear Ellen,
    I like it better when you make me laugh. *sniff sniff* That post was beyond words.
    Praying that all those signs were really pointing to Max's miracle.
    xoxo
    kate.

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  13. Thanks for the good cry Ellen!

    Both you and Max have come a long way. And there is nothing wrong with wanting to possibly make life a little easier for the man. Nothing.

    Hope all goes well!

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  14. As I dab my tears away from my eyes I send you hugs and prayers! Beautiful post. I was honored to read it and to glance ahead into the future once Jeremiah is home! Your son is beautiful as are you.

    Blessings,
    Tami
    PRAYING JEREMIAH HOME QUICKLY
    www.tillGodbringsthemhome.blogsopt.com

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  15. I was recently talking about just this with Jess (of Connor's Song). We both agreed that if we could heal our sons and make their disabilities go away, we would but there would always be a little part of us that missed who they are NOW. Watching these boys work *so* hard for things that come easily to others, witnessing daily how happy they are just to BE, the love that these little guys give so easily...well, that in itself is a miracle, isn't it?

    Good luck, Max. No matter what happens, you have a lot of people who love and support you.

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  16. Beautifully said, Ellen. As lucky as you are to have Max and Sabrina- they are equally lucky to have you as their momma. Best wishes to your family today!

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  17. Oh, thanks! Now I have to go re-apply my mascara!

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  18. I saw your comment to Jess on Connors Song blog about facing the life you're given (if someone had told her how things were to be with her baby...) and just wanted to tell you how wonderful of an answer I thought that was. I stopped by here to see your blog. Wow. My now 4 year old grandson I have custody of spent the first two weeks of his life in NICU and has been developmentally delayed and in special ed. Moms like you and Jess are an inspiration to me as I go through "Mom, the Sequel" with my grandson.

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  19. Ellen, thanks first of all for the good cry. It felt very cleansing. I have always felt that way about Regan too. I want to make her life easier, but I wouldn't change a thing about her either. She is so amazing as she is and has inspired so many others.

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  20. What a beautiful post.
    Max is a handsome boy who can capture hearts.
    Praying for Max and you during this time.

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  21. Now that's a letter worth treasuring down the ages! Max is a lucky boy to have such a beautiful momma and such a wonderful family. And I'm sure he knows it, too. How could he not with all that love around him?

    Wishing you the best, hoping for a grand result.

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  22. Absolutely beautiful post! Praying for your family today. : )

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  23. I've been reading your blog for a long time but I never commented before. Good luck :) I really hope everything works out!

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  24. That's beautiful! I wish you and Max all the best, he's an amazing little man!

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  25. Hey!

    I gave you an award on my blog today (8.25.09). Please stop by & check it out. Hope things go well. I'll be praying!

    Blessings,

    Shannon

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  26. Frickin cryin' on the keyboard here. Beautiful. . .

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  27. Oh Ellen, I LOVE this letter to Max. It's so wonderful and shows your layers and layers of love. Please know I am here for you if you need anything anything at all.

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  28. Wow...I saw a request on my facebook (simsfourk@yahoo.com) with this amazing picture of a little boy that stole my heart immediately. This is truly amazing as today is my daughter, Kiera's 3rd birthday and it seems I have been searching for stem cell information since birth. My entire families thoughts and prayers are with you all and I look forward to chatting with you when ever you have time. Sending lots of healing thoughts... The Sims Family

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Thanks for sharing!



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