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We were on our way to the pediatrician yesterday when Sophie asked the question again.

“Why do I have special needs, Mommy? Why do I have Down syndrome?”

The appointment was about a rash, not even with our regular doctor, but I figured the fact that we were en route to a medical professional was a sign.

“Hey, why don’t you ask the doctor?” I said.

She made me ask, because Sophie can’t pronounce the words Down syndrome.

The doctor stared — first at me, then at Sophie.

“Well!” she said in her best Voice to be Used with Toddlers and the Developmentally Disabled, “That’s just how you were born!”

Sophie stared at her. So did I.

“Um, can’t you at least toss in a chromosome or something there?” I asked.

The doctor looked panicked. She promised to prepare our regular pediatrician for the next time we come in. “Boy, I bet Sophie really keeps her Mommy and Daddy on their toes!” she said in her best Voice to be Used with Parents of Special Needs Kids. Then she developed an overwhelming fascination with listening to Sophie’s heart. At least I walked away with the prescription for the antibiotic we needed.

Driving home, Sophie said, “I don’t want to have Down syndrome.”

“Why?” I asked.

“I feel left out.”

She went on to explain that a bunch of her friends were playing that day — without her. Then she said she was sad when she went to choir and her best friend went to the playground. We talked about how everyone is different, how we all have varied interests.

“I really don’t think it’s because you have Down syndrome,” Annabelle told her.

And maybe it wasn’t — yesterday. But let’s face it, it is. And it will be — more and more.

Later at home, I showed Sophie a video about Down syndrome that one of my friends shared on Facebook. “That helps,” she said. “Now can you read me some news stories about Down syndrome?” (Ah, the daughter of journalists.)

So I googled “Down syndrome” and came up with stories about abortion, depression, physical maladies — nothing Sophie-worthy. Luckily Ray came into the room just then, took Sophie on his lap, and told her stories about people he’s met with Down syndrome,  like some really strong weight lifters he interviewed a few years ago for a story. “Cool!” Sophie said.

“Did that help?” I asked, when she crawled back on the couch next to me. “That helped,” she said as she put her thumb in her mouth, finding a comfortable spot on my shoulder.

And soon she was asleep.

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Tags: Filed under: Down syndrome by Amysilverman

One Response to “One of These Things Wants to Know Why She’s Not Like the Others”

  1. kathymonkman’s rules for sharing the planet with Soohie:

    1. Always know where the paintbrushes are…not if, where.

    2. When in doubt, the answer is in the realm of *soft* (physical and mental realm)

    3. Listen. Listen more. Pay attention to all the words esp. the ones that seem to come from nowhere like “where is your husband?” Then proceeding to tell me.

    4. Never lock in a pre conceived notion about limitation or definition of how far a person can go. (Including me)

    5. Remember Sophie’s a record keeper…just remember that.

    6. Treat her as ordinary but never forget she’s holding the keys…to something.

    7. There is a place for a new breed of human, one we don’t know much about. Keep a broad lens open.

    8. Low stimulation and plain foods can be a remedy for many ills.

    9. Soohie is a natural anti depressant – remember this.

    That’s 9 for now. Reserving the right to be added to along the way.

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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
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