March 18, 2006
The birthday boy himself is one of the more severely affected kids in the class. He's confined to a wheelchair and is only slightly ambulatory. (More lingo; "ambulatory" means you can get around under your own physical control.) I believe he works his Big Box of Words with his head, although I've never actually seen him in action.
Here's why I love Schuyler so much, and why she's a better person than both you and me. When she saw him, she let out a squeal and ran over and kissed him. (One more reason being in a wheelchair is tough: you can't get away from Schuyler's slobbery kisses.)
Schuyler doesn't judge and she doesn't hesitate to love and accept. Every day, in about a hundred different ways, I am so proud of her that my heart swells and breaks a little. She loves the whole world in a way that it will never ever love her back, and that says as much about this grand rough world as it does about her.
She spent the party seated next to her best friend in the world, a little girl named Sara (I've mentioned her before) who is similar in language skills and mobility to Schuyler. I sat and watched them for the entire party, and took about seventy photos of them together (again, I wish I could share them, because they are super cute), and here's what I can tell you about Schuyler and her best friend. They love to laugh. They both got dealt a shit hand by God, and their birthday friend got an even worse hand, and yet for the duration of that party, the three of them laughed and played as hard as a six year-old can laugh and play. The "neuro-typical" kids, for all their words and mobility, couldn't match the three broken box kids in enthusiasm or in sucking every bit of joy out of every minute they had.
Schuyler's monster has taught her a lot of hard lessons, and the hardest ones are probably ahead of her. But sometimes, on days like this when she's laughing with her broken but happy little friends or running and stomping messily in the rain puddles outside, I can see that her monster is teaching her to live her life turned up to eleven. And perhaps she's teaching me the same thing.
Incidentally, as I write this, we're sitting around watching cartoons. The one that's on right now centers around the characters burping. There's a lot of burping going on, as you might imagine, and we're both laughing like monkeys. Schuyler thinks burps are funny, which of course they are, and she keeps fake burping and then making me do it for real. I'm starting to feel a little queasy, to be honest. Performance art is difficult work.
One day, I'll teach her how to make herself burp. It'll be my legacy.