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Why We Brought Our Son to the Pediatric Geneticist
Kids are all mystery, and mine are no different, but the unknown has especially marked my son.
This is a new column by Taylor Harris on parenting, genetics, and the quest for answers to medical riddles.
What did I do—or not do—to cause my son’s delays, his hypoglycemia, and failure to thrive?
Then, inevitably, there’s a blip on the radar, and I have to remind myself that I’m not in the business of fabricating nuance.
My boy is who he is.
in the beginning,
That might sound spiritual or emotional or sappy, but it was actually quite physical and measured. Tophs’s lack of growth, his drops in blood sugar, his delayed speech—they weren’t disconnected from the boy behind those wide, brown eyes.
My chief concern as his mother was this sense that I couldn’t consistently get through to him—as though he was a place, and I was an eager but frustrated traveler who might never reach it. We hoped that by sending off his DNA, we’d be able to map him out, to discover what made him slow to respond to pain or his name. To know why he could eat ice cream and pizza before bed and still have dangerously low glucose levels by morning.
It strikes me now that the question Shelley really asked us was: “Are the odds stacked against your child?” Beneath that question, there lurks another I frequently ask myself: What were my expectations—of my child and his body, of myself and my body? Had I expected easiness, perfection even? And what about the man I married—did I expect him to be free of misspelled genes?
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Not knowing happens to all mothers, and to all of us—if we are breathing, we are without escape from things we can’t know.
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As a mother, I’ve had to ask myself: What would never getting an answer, or even no longer expecting an answer, look like?
How many days had we spent asking the same questions of God or doctors? How long had we wrestled with conditions that didn’t yet exist?
I’m not just advocating for a child whose challenges don’t follow a script. I’m also a black mother advocating for my black son in a room full of people who don’t look like us.