Friday, April 16, 2010


When I was writing my last post, I went looking around Barbara's site, trying find where she'd written about Down Syndrome. I failed to find it, but became mesmerized by a picture of a child climbing into the bathtub. The picture surprised me so much that I called my husband over to take a look. The child scales the edge of the tub like a miniature mountain climber. I've never thought of that. I mean, it would be quite a feat for Charlie at his current size, but I never even pictured that scenario. Right now I lift him into the tub and in the future I hope to have a roll-in shower. It was black and white in my mind and now, someone had shown me some gray.

You think I'd be used to this by now--the constant change. Ever since I gave birth to Charlie I've felt like nothing is sacred--as if my beliefs have been thrown up into the air to land where they may.

I had to change my mind about parenting. I had to learn that his accomplishments and failures aren't a reflection of my parenting. These are his battles; this is his journey--I am merely a guide.

I had to change my mind about teaching--about learning. I've had to accept that there are things that Charlie will never do--not because he can't, but because he doesn't want to. I've had to accept that I will have to bring him to the learning because he can't always get there himself. I've had to get down on the floor and do things for him so that he can have that experience.

I have to change my mind about independence. In this country we put such a premium on independence, but why? What's so bad about interdependence? Truth is, it doesn't matter--me, my husband, our parents, our siblings--we're all in love with this kid. What do I care if he needs me? I need him too.

I've had to change my mind about intelligence--that holy grail. As someone who was constantly rewarded for her academic achievements, I grew to really value smarts, but I'm starting to see that smarts don't equal happy. I am still completely dedicated to helping Charlie learn as much as he can, but his cognition doesn't rule my world. The ability to find joy in this life is worth so much more.

This boy. . . he's teaching me so much.