“I just want to be like my friend,” she said in a tiny voice.
posted Tuesday October 15th, 2013
Last night, Sophie and I settled in on the couch for what I euphemistically call a “reading party.”
Well, I settled in. Sophie was back and forth to her room for more books, finally deciding on Judy Blume’s “Then Again Maybe I Won’t,” begging for another round of Go Fish, scooting all over the place trying to find the right spot in the crook of my arm.
I was a little annoyed — two-thirds of the way into “Wonder,” a really amazing YA novel, and sick of the interruptions. Which didn’t mean they were going to stop.
“Mommy, why I have heart surgery?” Sophie asked, putting her book down. I put mine down, too. This one required full attention.
“Because you have Down syndrome,” I thought, automatically.
But something told me not to go there.
“Because there was a little hole in your heart and the doctors needed to sew it up,” I said, stroking her hair.
Satisfied, she turned to other topics — should she get another book? When was Daddy getting home from the gym? Frustrated, I hushed her. Defeated, Sophie picked up her book, burrowed her head into my side, and took my hand, carefully placing it on her chest, where the bones still make a big bump.
I put my book down again.
“You’re thinking a lot about your heart tonight,” I said, a little worried. I always wonder if Sophie knows something I don’t know. “Why?”
“Because I don’t want to have Down syndrome,” she said, carefully pronouncing it — sin-drum — like we’ve practiced. “I want to be like you and Sarah.” (Sarah is Sophie’s best friend.)
She’s said it before, so I wasn’t surprised. But I’m no more prepared now for how to respond than I was the first time it happened, a year and a half ago.
“I love you, Sophie,” I said into her hair. “I love you so much.”
“I just want to be like my friend,” she said in a tiny voice.
“I know,” I said. A few seconds later, she was asleep. I stayed awake long enough to finish “Wonder,” and looked up at the end, startled to find myself in my living room. I love it when a good book does that to you. I put the book aside and stood up carefully, even though I knew nothing would wake Sophie now. I stared down at her beautiful, peaceful face (and if you’ve read “Wonder” you’ll get this part) and thought about how lucky Sophie is — and how she’ll never really fully grasp that, even though her teacher read the book to her class last year.
And then I hoped that someday she can read well enough to be able to lose herself in a good book.
It seems like a reasonable wish.
Well, you made me cry.
I think she does know something you don’t (always) know–but it’s about your heart, not hers. You are such a great mom, Amy.
I love Elizabeth’s comment. I need to read that book. I love your reading and writing parties. I wonder what SHE really means when she says that- what she sees as the difference. I wonder because I think someday I’ll have a version of dejavu as we sit on our couch down here in SC.