The other day I noticed that a friend of mine had changed his Facebook profile picture to a picture of his daughter. At first glance, I wasn’t sure whose picture it was.  Upon further inspection, however, I realized that it’s just a regular kid–one of those crazy neurotypical types–looking a little funny. I thought to myself, “I wouldn’t put that picture up of my child.” Mouth wide open, eyes looking askance–it’s probably a great capture of her personality, but not the most flattering image of her.  I consistently try to only put really great pictures of Charlie up on the Internet.

And it got me wondering–am I too worried about appearances? When I put up pictures of Charlie, I try to select only the best. I try to avoid eye crossing, drool, or anything that’s less than flattering.

I wonder if I’m being overly sensitive. I wonder if I’m choosing pictures where he looks less disabled. I hope that’s not it. I feel like I’m completely comfortable with who he is, but maybe not? I don’t know.

Looking at me a tad cross-eyed while working on the study of Africa

I yelled at my mother this past weekend. Not my finest moment by any stretch of the imagination.

It was pretty much a given that something would get to me after typing up a post about how accepting I am of Charlie’s disability, and this past weekend something did.

It started on Thursday. Charlie had a Feldenkrais session and at the end his practioner noted that “he was trying so hard to talk.” That little phrase hit me harder than I expected, but I brushed it off in the process of getting one disabled preschooler and two infants out to my car.

Two days later my mom made the same observation with a smile on her face, and I lost it. I yelled at her to just stop saying that.

And why? I’m still not exactly sure. I mean, I should be excited to hear this–my mostly silent boy making attempts at communication.

But it feels the opposite. I can do nothing to help him with this. I can’t move his tongue for him, I can’t make it easier to vocalize. I have no choice but to sit here and see him struggle to do something that comes effortlessly to most. I’m helpless. A part of me wishes that he wouldn’t even try because it would hurt me less. Great mom, huh?

I can accept that my ideas and thoughts about the future will be different than what I thought. I can accept that there are things that my child will never do. What’s harder is accepting that there are things he wants that are out of reach, things I can’t give him. That’s the hard pill to swallow.