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Why Can’t I Be You?

posted Monday August 29th, 2016


Years ago, as elementary school came to a close, Ray warned that Sophie’s Salad Days were ending, too.

I completely agreed. Gone, soon, would be carefree days of feeling accepted, of being fully included. That was more than two years ago, and I’m still waiting — against all odds, I’m pretty sure — for the universe to kick Sophie in the ass.

In fact, the first few weeks of eighth grade have pretty much cemented our younger daughter’s position as queen of her world.

That’s not to say that her life is perfect. Sophie has inklings (sometimes more than that) that the world has dealt her a shitty hand, that some things don’t come  as easily to her and never will. She loves the reality TV show “Born This Way” — I can feel the pride she has that there’s a “cool” show about people with Down syndrome. She begs me to let her watch. Inevitably, she winds up with her head burrowed in my shoulder, whispering, “I don’t want to have Down syndrome” as she watches several young adults and their families face the challenges of disability and adulthood head-on.

“Let’s change the channel,” she says, beating me to it. She’d rather watch re-runs of “Dance Moms.” She applied last month and wants to know if we’ve gotten an email back yet. No, I tell her. We haven’t.

I’m not sure if Sophie realizes she doesn’t have a hope of being cast on “Dance Moms,” a fairly despicable but addictive reality show about as different from “Born This Way” as it gets. The girls on the show are creepy-perfect and hyper competitive, and their moms are creepy, too. I’m sure I’d hold Sophie’s application back as much as anything. And really, it’s a numbers game. There have to be thousands of kids vying for a spot.

Sophie understands math better than I do, but she still thinks her chances are good, because — well, because she usually gets what she wants. Mostly because she asks. And asks, and asks, and asks. Believe it or not, I do say no. But when you ask as much as Sophie does, you’re gonna get — sometimes.

For example, on Saturday I took Sophie out to run errands and get our nails done.

She wanted to leave the house without brushing her hair. (I gave up and said yes, since we were about to miss our appointments.)

She wanted to play her ukulele in the nail salon. (NO.)

She wanted a dress from the used clothing store. (Yes. But just one.)

She wanted to invite a friend over for a sleepover. (No.)

She wanted to order an “affordable” outfit on (No.)

She wanted to buy herself a present while shopping for a birthday gift for a friend at a local boutique. (No. I told her she could spend the $20 Ray had given her earlier that day and that led to her texting Ray to say that I was trying to steal the money he’d given her for the school book fair.)

She wanted to go to Target. (No.)

She wanted to go out for Thai food. (Okay, fine.)

You get the picture. (That, by the way, was in the span of a couple hours.) It’s not just me. She does the same with Ray, the nanny, her big sister, her grandmother. And she has employed this method in junior high.

After the first week of school, we had a meeting of Sophie’s “team,” to talk about how things were going. The biggest challenge, it seemed, was not that Sophie (fully mainstreamed with an aide) couldn’t keep up or didn’t understand what was going on. It was that she was throwing her hand in the air every time any of her teachers asked a question.

“Please don’t call on her every time,” I said.

There was a palpable sense of relief around the table, even though I was assured that given the typical apathy of the eighth grade, it’s refreshing to have Sophie around.

I do get that. Sophie wears it all on her sleeve, including her heart. I had a crush on my eighth grade social studies teacher but God forbid anyone should have known. (Please, if he’s still around, no one tell Mr. Broderson, okay?)

Sophie, on the other hand, made up a cheer for her social studies teacher. And, noticing that he seemed like he might enjoy hiking (read: fit hipster), asked for his phone number so she could give it to Ray, figuring the two might like to hike together.

“You know, you didn’t have to give her your phone number,” I told the teacher, cringing as I asked, “Has she done her cheer for you yet?”

“Every day!” he replied. (The other teachers looked a little jealous.)

Sophie is making plans to attend Arizona State University (she’d go farther but she thinks she might live at home so we can cuddle) while I have a near-constant stomachache over what high school is going to look like. I’ve been like this my entire life — I worry. I don’t expect the best. I might beg, but I’m not surprised when the object of my affection doesn’t arrive on a silver platter.

More and more, I think, I would not mind being Sophie. And, given her lack of understanding of what it takes to make our world run on a daily basis, I wouldn’t mind if she knew what it was like to be me.

So I’m waiting for our “Freaky Friday” moment. (The Jodie Foster version over Lindsay Lohan, please.) In some ways, Sophie is simply a somewhat-spoiled teen and I her fairly-clueless, out-of-touch parent.

Of course, in many ways, it’s so much more. But I hope it stays like this a little longer.

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit and here’s a book trailer.

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2 Responses to “Why Can’t I Be You?”

  1. Okay, FAVORITE part:

    “And, noticing that he seemed like he might enjoy hiking (read: fit hipster), asked for his phone number so she could give it to Ray, figuring the two might like to hike together.”

    Seriously? Beyond wonderful.

  2. yeppers…cut from the same cloth. What is it with social studies teachers, raising your hand all the time, and always getting a yes…

    When Katie didn’t get called on earlier last week, she said her favorite “drat” word–da-nake, which several of the other students interpreted as a bad word. Such is life.

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.


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