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Half Full… Or Half Empty?

posted Wednesday November 21st, 2012

Today is Sophie’s half birthday.

She really goes for that sort of thing,  so  I got a brightly colored cake from Fry’s and cut it in half, then raided the Hanukkah stash for nine and a half candles. Sophie was thrilled when she woke up and saw the cake, and when she blew out the candles she insisted on telling us her wish, which was more of a proclamation: “I love Mommy and Daddy and Annabelle.”

A nice start to a nice day. The girls didn’t have school (when did THAT start, getting the Wednesday off before Thanksgiving?!) so I made arrangements with my friend Rachel, the mother of Sophie’s BFF Sarah, to watch Sarah for half the day; the girls would go to Rachel for the other half so I could run to the office. It seemed appropriate — half a day off on Sophie’s half birthday.

Perfect, right? And it was a perfect day — the weather was gorgeous, I made cookie dough and caught up on work emails while the three girls played school, then I fed them baloney sandwiches and ran them around the park before we headed out for ice cream. At the ice cream shop they played a board game and sang songs in the car on the way home.

I’d like to say it was one of those days where I forget Sophie has Down syndrome — but to be honest, I never have those days. After what happened left I’m wondering, maybe Sophie doesn’t, either.

We were almost home when Sophie asked a question from the back seat. Totally out of the blue. I hadn’t heard the topic come up for months.

“Mommy, why I have Down syndrome?”

“Well,” I said slowly, trying to not botch it like I usually do, “when you were born — I mean, when you were created — some science happened, and so every bit of you is just a little bit different than everyone else.”

“You’re special!” Annabelle said quickly. “Sophie, it’s awesome that you have Down syndrome.”

Silence from Sophie. And then, “I don’t want to have Down syndrome.”

“But Sophie, we’re all human beings,” Sarah said. “Really, we’re all the same.”


“Why did you mention it, Sophie?” I asked.

“I want to be like Sarah,” she said. “I want to be bigger.” Sarah is a good foot taller than Sophie — and it’s hard for my kid to keep up with her in other ways, too. They’ve been best friends since kindergarten.

Sarah began to reminisce. I’d never heard the story of the first time they met. “Sophie asked me to help her onto the toilet,” Sarah said matter of factly. “I didn’t even know her name then. Later we were walking down the hall and Sophie told me, `I’m sick. I have Down syndrome.’”

“You’re not sick!” Annabelle interrupted. “You’re just different, Sophie. And it’s okay. You’re the smartest person I know! You try your best and work really hard and that’s all that matters.”

“Yeah,” Sarah chimed in. “You’re not sick.”

In a very small but matter-of-fact voice, Sophie said, “I have special needs.” (That killed me.)

More silence.

And as quickly as it started, the conversation ended. We pulled into the driveway, and talk turned to the location of Sophie’s Justin Bieber nightgown.

Of course, I kept thinking about the previous conversation. I wonder if Sophie did, too.

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Tags: Filed under: Down syndrome by Amysilverman

5 Responses to “Half Full… Or Half Empty?”

  1. Ryan, now 37, is similarly high functioning; he detests having Down’s.
    Maybe he & I can (re)connect over this post, which I think I may share with him.
    (wiping my eyes)

  2. Oh, Amy … my heart aches.

  3. One, she is a person first and foremost. A person with down syndrome. Like I am a person with red hair. It isn’t who she is, and I know from reading your blog, that is how you feel. I think your daughter sounds like an amazing, wonderful person. That will do wonderful, crazy things in her lifetime. ;-)

  4. Sweet smart Sophie – I wish I had words to address that.

  5. Very cool running in to you today, and meeting you both. A belated Happy Half Birthday to Sophie. Bella truly appreciated making a new friend!

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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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