I love my conversations with C. He keeps me on my toes. There is never a dull moment as his topics are all over the place.
Sometimes I have to laugh out loud, like on Sunday as we were getting ready to go to the Packers game. He came downstairs wearing his cheesehead cowboy hat. When I asked if was going to wear it to the game, he just looked at me and said, “You know what they say. Go big or go home.”
Sometimes I am amazed by his sense of right and wrong. We went to see Catching Fire a couple of weeks ago, and he kept leaning over and whispering to me, “Why don’t they just say no? They know it’s wrong! Why don’t they just say no?” I tried to explain how fear played into it, and he said, “How can you be so afraid that you don’t do what is right?”
Always I am moved by the depth and complexity of his thoughts. He’s reading a book he can’t put down. It’s one I’ve never read, had actually never heard of until he brought it home, but I plan to read it when he’s done. For the last hour and a half, I have been fielding questions like, “What is Soho?” “What does he mean by P.S. 2?” “What is a gene mutation?” “Why would someone dress like Indiana Jones when they are studying Egypt?” “By stomach bug does he mean a virus?” “Wait, Chanukah is spelled with a ch?”
The book is Wonder by R.J.Palacio. It’s about a kid named Augie who was born with a face deformity and is attending a mainstream school for the first time as a 5th grader. It’s a book about bullying and empathy. It’s striking a chord with C. He’s talking about things he never talks about – his eyes.
C has a condition called Blepharophimosis. (Don’t bother googling it because the info there will scare the pants off you.) Basically, it means he has weak eyelid muscles. His vision is fine, but he looks like he’s half asleep all the time. He had five surgeries before he was seven; one of them took muscle tissue from his thigh to replace the weak muscles in his eyelids. He has tiny scars on the inside and outside edges of his eyes as well as in his brow line and on his forehead.
People stare. Sometimes they ask inconsiderate questions. Sometimes other kids call him names. Always I want to scoop him up and tell him it’s fine. He’s perfect just the way he is. The toughest question I have ever had to answer was, “When will my eyes look normal like yours?”
But, back to our book conversation: He was explaining to me that the kids play a game where if someone touches Augie, then they catch “the plague”. He then connected it to the “cheese touch” in Diary of a Wimpy Kid, and we talked about how mean it is to treat people like that. He pointed out that you could avoid the “cheese touch” by not touching the cheese, but there was nothing Augie could do to change how he looked. I reminded him, though, that any kid who touched the cheese was made fun of and avoided by other kids.
But, he was emphatic that it was different. “If you don’t touch the cheese you aren’t made fun of, but Augie’s face thing is kind of like my eyes. When kids call me a zombie, I just have to ignore them because I can’t change my eyes. The sad reality of life is that people judge you by how you look and most don’t bother to look any further.”
He was quiet after that. He read a few more pages before bed, and as he put his bookmark in, he looked at me and said, “I might be a little shocked by how Augie looks, but after that initial reaction, I’d take the time to get to know him. He sounds like a pretty neat kid.”