Thursday, October 29, 2009

A Fine Line

Parenting is a delicate process. There are so many conflicting statements and opinions. So much information. There are doctors, other mothers, newspapers, magazines, the Internet--it seems like everywhere you turn there's someone else talking about the best way to do something.

When you're parenting a special needs child, there are even more voices. There's a legion of therapists, more doctors, and a many, many well-meaning people who saw this thing on Oprah, heard about this supplement, or know a child who completely recovered after blah, blah, blah.

There's a second, more insidious message in all this well-meaning advice, however. In a way, these messages tell us that our children aren't good enough just the way they are. The miracle of their being is insufficient. We need to fix them, alter them, make them more acceptable to the world at large.

This is OK. I understand that the world at large might not be able to understand the joys of a disabled child. I've been on the other side of the looking glass and I've pitied my future self. I've felt sorry for women as they pushed children through the mall in a wheelchair. I've wondered how they could appear so optimistic, so upbeat.

It's fine that the world wants to fix my child. It wants to make him as close to "normal" as is possible. In many ways, I want this myself. I want the world to see his value and worth and I know that this will be easier if he can talk and walk and eat with a knife and fork. I shoot for the big goals, the ones that often seem impossible. I dream big for my child because he deserves big--he deserves my optimism and deserves to have his light seen.

But I also have to be careful. I have to remind myself not to take it too far. Because in this moment, just the way he is, he is beautiful. He's not a jalopy that needs tune up. He's my child. He doesn't have to earn my love or affection. He has it. All of these things are for the outside world--not for me. I have to be sure that in the whirlwind of therapy, lessons, and supplements that this message is heard: I love you just the way you are.