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On World Down Syndrome Day, One Phoenix Mom Reflects On Possibility Of 'Fix-It' Pill
Today-- March 21st, or 3/21-- is World Down Syndrome Day, recognizing the third 21st chromosome that causes Down syndrome. And that has one Valley mom thinking about what it means to have a kid with Down syndrome.
Amy Silverman is managing editor of Phoenix New Times. Her book about Sophie, "My Heart Can't Even Believe It: A Story of Science, Love and Down Syndrome," comes out this spring.
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 with the promise of Snow White underwear 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.
(Parents, here’s a tip: Don’t let your babies grow up to love Piglet. Nudge them toward Mickey Mouse or Cinderella or Goofy. Piglet rarely appears at Disneyland.)
By the time we reached the front counter at City Hall on Main Street and Sophie received official word that no, Piglet was not coming out this week, there were tears-- and one giant sob. But within minutes she’d talked me into buying her a stuffed Piglet toy, solving her own problem by asking Tigger, Eeyore and Pooh to pose for selfies with her new Piglet.
“Wait,” Sophie asked as we were standing in line at Critter Country, eyeing a six-foot tall orange and white furry. “Is Tigger really the real Tigger or a person in a costume?”
“Oh my god, Sophie, are you kidding?” I wanted to say. “You’re almost 13.”
But trained over the years, I smiled. “It’s a costume,” I said quietly, so the toddlers in line didn’t hear.
Sophie is smart 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 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.
But it’s not that simple.
“Hey Sophie,” I ask her. “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 her morning Cheerios, nodding without hesitation.
“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.
But I do know that it makes me uncomfortable when parents and others talk about the limitless opportunities for our kids, about how they can do whatever they want if we just let them. Sophie teaches me new things about herself and what my expectations should be for her every day. But in many ways navigating the world is more of a challenge for her than for her typical peers. To look away from that is to do her a disservice.
If only there was a pill we could all take.