The news about scientists turning off the extra copy of the chromosome behind Down syndrome means that someday, gene therapy could treat the condition in the embryonic stage. Published in the journal Nature, the study has made headlines around the world. It's made an impression on many parents, including me.
Max has cerebral palsy, yet the idea that special needs should be "fixed" or cured is unsettling. At the same time, it's made me wonder what would happen if cerebral palsy were curable. If Max had never been born with it, if it were to go away tomorrow, he would be a completely different child than the one I know and love.
Max is running to the car, excited to go for a drive. I love the way he runs; it's not so much a forward-propelled motion as a side-to-side fast waddle, like a penguin on speed. It is so Max.
Max is pointing to a photo he's pulled up on his iPad.
"Max, do you want a Cars 2 Talking Lightning McQueen for your birthday?" I ask.
"Yeah!" he says, happily.
"And are you having a bowling party?"
"Yeah!" he says.
"And are you having a chocolate and vanilla ice-cream cake?"
"YEAH!" he says.
I love his "yes." It is so Max.
Max is holding a French fry in his fingers. This is quite the feat, because it's an oversized soft one and not easy for him to grasp. He's hooked his thumb and pointer finger around it, and he's dunking it in ketchup and carefully bringing it to his mouth. He does it in this slow-mo motion. It is so Max.
Max is giving me a kiss, a big, slurpy open-mouthed kiss typically accompanied by a smile. It is so Max.
Max is about to go downstairs, on his butt. He is capable of doing this upright if he holds the rail and I hold his hand, but he feels more comfortable going down on his rear. I watch him descend, his hair flopping, arms raised for balance whenever he lifts his butt. It is so Max.
It's bedtime, and Max holds his hand to his mouth, fingers straight, and waves it back and forth. It's his sign for water. A bit later, he draws an arm across his body in a Napoleon Bonaparte-like gesture, his sign for "It's cold in here, turn the AC down!" The gestures are so Max.
"Ohhmmy!" I hear. It's Max, calling me from the basement where he's been hanging out with Sabrina. "Ohhmmy!" is my favorite word in the whole world. It is so Max.
The cerebral palsy is in Max's movements, mannerisms, gestures, stance, sounds. It does not define him, but it is an integral part of who he is, same as his little sister has her ways. While I sometimes wonder how Max would would move, sound and behave if he didn't have CP, in the end I can never conjure up anything. He wouldn't be the kid I know and adore without the CP.
But then, I think, I'm being selfish. Because the CP creates obstacles for him. I see all the time that the world isn't an easy place to navigate physically or otherwise for a kid with special needs, and it pains me and makes me anxious about Max's future. What I wish is that there were more research dedicated to treatment for the medical issues that accompany disabilities, including the muscle spasticity and even pain some children and adults with cerebral palsy have and the heart problems that can plague those with Down syndrome. I wish, too, that there were more acceptance of people with special needs so that they weren't made to feel so different.
Before I had Max, if you'd asked me whether I would have wanted to avoid the cerebral palsy, I would have unhesitatingly said yes. And now, would I make all of Max's muscles move fluidly if I could? Would I give him full range of speech? Yes, I would, assuming he'd agree. And this is where it gets utterly and completely befuddling. Because what I do not wish is for the boy I love to become some other child.
I will do whatever I can within my powers to pave the road Max walks on and make his path in life easier. But I love this kid, the one I got.
More from Ellen Seidman at Love That Max:
18 things special needs moms shouldn't feel guilty about
A Bill of Rights for parents of kids with special needs
Max goes to a movie theater for the first time. SHRIEK!
Follow Ellen Seidman on Twitter: www.twitter.com/@LoveThatMax