Thursday, March 5, 2009


Today. . .

. . . I showed Charlie each of the trees and bushes that are planted in our yard. He tries to touch the green ones, and tries to lick the ones that are flowering.

. . . I stopped typing, looked over at Charlie in his Rifton Chair, and he gave me a quick smile before looking away.

. . . I got three friend requests on Facebook and they were all people I actually know!

. . . I thought about Melanie's questions about coping with her special needs child.

. . . and I read this blog about a little girl who was sick and then gone so quickly.

I've gone round and round about how to describe coping when you find out your child is going to be disabled, and I've come to the conclusion that I'm worthless in that regard. Here's a bit of how I dealt/deal with Charlie and my role as his mother:

When Charlie was born I went through a small moment of "why me?" In the years before Charlie was born I felt like I'd really grown as a person. I'd taught special ed for five years and the last two I'd done it in a low-income school. I'd tutored kids free of charge. I'd gone back to church and started volunteering there as well. I felt good about the person I was becoming and felt like I didn't deserve to have a child who was disabled.

I knew in my heart, however, that a child's disability has nothing to do with their parents. Every person comes into this world with their own journey and while mine and Charlie's are linked, they are not the same.

And then one day I was sitting at the doctor's office and a man walked by me talking loudly on his cell phone and he said, " You need to ask yourself why God is bringing this to you."

It was a novel idea at the moment. . . that God was bringing me a set of circumstances for a reason. And why indeed?

Maybe all that stuff. . . the working with special needs kids, the praying , the volunteering. . . maybe all of that was just getting me ready for this job.

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know.

Is it conceited or crazy to think that I am uniquely suited to be Charlie's mom? Probably, but that's how I cope.