You Win Some You Lose Some
You win some, you lose some. It’s a cliché for a reason. Sports, dating (which is kind of like a sport), cooking (at least for me), and any social event where you have to put yourself “out there” earns this phrase. I get that. I can handle it…when it comes to me. But when it comes to Charlie, anxiety has me tightening my laces when he has to “perform.”
Take our most recent neurology appointment for example. We love his neuro. He’s funny and laid back. But we mostly love him because we only have to see him every six months. At each of these check-ups he asks me the rundown of questions about overall health, new interests, recent seizures (which luckily Charlie has not had in two years), and then he turns to Charlie and says hi. And I hold my breath. Charlie is watching trains on my iPhone. He does not look up. He prefers not to acknowledge the other human. When I take the phone away, he gives a smile, a small wave. But you can tell his mind is on the trains. Which leads the neuro, oh so casually, to ask me when our last speech evaluation was. I’m ready with the answers: “we’re working on using the iPad”, “his receptive language is perfect”, “expressive language is the problem”, “he’s so smart.” I fill in Charlie’s silence with all the words I can grab.
The Show Must Go On
Last week Charlie’s school had their Christmas pageant, a holiday sing-a-long. Music is Charlie’s love language. It’s his groove. The audience, however, is not. Last year, it went like this…Roll him in, cue the music, cue the tears. This year’s started off even more bleak, if possible. He spotted me hiding behind a post. The tears began BEFORE the pageant. So I slunk out from my hiding place and gave him a hug and my phone until his class went on. And then he did great. Weirdo. No, he didn’t sing. But he smiled and played with his santa hat. I’ll take it. That was a pageant I could breathe through.
I don’t think I’ll ever let go of my expectations for him. Of my need to prove that there’s more to Charlie than a pretty face and some stellar wheels. But I want to learn how. I want to try at least. I want to sit back and enjoy the show. I think Charlie would be okay if I stepped back a bit…if the pageant mom in me took it down a notch. We’ll find a way for him to have more of a voice. And then he can really let me know what he thinks.