by Amy Silverman
Not long ago, we let Sophie play hooky from seventh grade for two days, and took her to Disneyland. I considered it an educational trip – every time we go, it seems, Sophie gets a little smarter.
When Sophie was just shy of 5, she made her first real foray into potty training after the promise of Snow White panties in exchange for dry pull-ups. At 7, she showed compassion and maturity by befriending a Disney employee who happened to be a little person, a young man who later admitted to me that he often felt left out and shunned by kids visiting the theme park.
And on our most recent trip, Sophie demonstrated a pretty good ability to hold it together when told that her very favorite character would not be appearing at all during her time at Disneyland.
Parents, here’s a pro tip: Don’t let your babies grow up to love Piglet. Nudge them toward Mickey Mouse, Cinderella, or Goofy. Piglet rarely appears at Disneyland, even though there’s a whole “critter country” with AA Milne characters. Eeyore, Tigger and Winnie the Pooh – but never Piglet.
By the time we reached the front counter at City Hall and Sophie received official word that no, Piglet was not coming out this week, there were tears — and one giant sob. But the kid pulled it together with uncharacteristic maturity. Within minutes she’d talked me into buying her not one but two stuffed Piglet toys, one of which she initially intended to give to Pooh but ultimately decided to keep for herself, solving her problem by asking Tigger, Eeyore and Pooh to pose for selfies with her and stuffed Piglet.
“Wait,” Sophie asked as we were standing in line at Critter Country, looking serious and eyeing a six-foot tall neon orange and white furry. “Is Tigger really the real Tigger or a person in a costume?”
“Oh my god, Sophie, are you freaking kidding?” I wanted to say. “You are almost 13. You have to ask?”
Instead I recalibrated quickly, trained over the years, and smiled. “It’s a costume,” I said quietly, so the toddlers in line with us didn’t hear.
Sophie is smart (whatever that word means, I don’t know anymore) and getting smarter all the time. But I would be lying if I didn’t admit that yes, she is hemmed in by the impact an extra 21st chromosome has on her brain.
I came home from Disneyland to news that advances have been made in a drug that can basically undo Down syndrome by greatly improving cognition. There’s a big debate in the Down syndrome community about whether that’s a good thing. Many parents don’t want to be told that there’s anything wrong with their child, and I get that. I admire it.
But it’s not that simple.
“Hey Sophie,” I asked her one morning. “If there was a pill you could take and you wouldn’t have Down syndrome anymore, would you take it?”
She stopped midway through a bite of Cheerios, nodding without hesitation.
“Why?” I asked.
“Because then I would be like my friends.”
There it was — matter of fact, honest, and out there.
Should I have asked the question? I don’t know. Did Sophie fully comprehend it? Hard to say. I’m not sure I fully comprehend it.
If only there was a pill we could ALL take.
Amy Silverman is a writer, editor, teacher and — most important — mother. Her daughter Sophie has Down syndrome. Sophie is 13 and fully mainstreamed in the eighth grade in a public school in Tempe, Arizona, where she lives with Amy, her father Ray and big sister Annabelle, 15. Sophie is a cheerleader — both at school and with Special Olympics. She also studies ballet and drama and has appeared in performances with Center Dance Ensemble and Detour Company Theatre.
For many years, Amy has explored what it means to have Down syndrome in the 21st Century on her blog, girlinapartyhat.com. Amy has also written about Sophie (and a lot of other things) for New Times, the alternative newsweekly in Phoenix, where she is managing editor. In addition, Amy’s a contributor to KJZZ, the National Public Radio affiliate in Phoenix, and her work has appeared on the radio show This American Life, in the New York Times, Washington Post, salon.com and many other places. She co-teaches the long running workshop Mothers Who Write and co-curates a live reading series, Bar Flies, both in Phoenix. Amy’s first book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published in Spring 2016 by Woodbine House. To learn more, visit myheartcantevenbelieveit.com