Monday, August 24, 2009
A letter to Max: I do not regret your disabilities
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.
Posted by Ellen at 9:10 PM