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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.

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Tags: Filed under: Down syndrome by Amysilverman

3 Responses to ““I just want to be like my friend,” she said in a tiny voice.”

  1. Well, you made me cry. :)

  2. 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.

  3. 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.

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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