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The glitter on this shirt is blinding.<\/p><\/div>\n

Take our most recent neurology appointment for example. We love his neuro. He\u2019s 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\u2019m ready with the answers: \u201cwe\u2019re working on using the iPad\u201d, \u201chis receptive language is perfect\u201d, \u201cexpressive language is the problem\u201d, \u201che\u2019s so smart.\u201d I fill in Charlie\u2019s silence with all the words I can grab.<\/p>\n

Last week Charlie\u2019s school had their Christmas pageant, a holiday sing-a-long. Music is Charlie\u2019s love language. It\u2019s his groove. The audience, however, is not. Last year, it went like this…Roll him in, cue the music, cue the tears.<\/p>\n

This year\u2019s 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\u2019t sing. But he smiled and played with his santa hat. I\u2019ll take it. That was a pageant I could breathe through.<\/p>\n

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Not pointing to mama…pointing to the iPhone of course.<\/p><\/div>\n

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Post performance nap at the lunch table.<\/p><\/div>\n

I don\u2019t think I\u2019ll ever let go of my expectations for him. Of my need to prove that there\u2019s 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\u2026if the pageant mom in me took it down a notch. We\u2019ll find a way for him to have more of a voice. And then he can really let me know what he thinks.<\/p>\n

<\/p>\n

Special thanks to Amanda<\/a> as always for letting me Think Out Loud<\/p>\n","protected":false},"excerpt":{"rendered":"