These Words From a Genetic Counselor Changed the Way I See My Son's Apraxia Diagnosis


young boy holding stuffed frog to his chest
Allison’s son.

When Reed was first diagnosed with hypotonia and apraxia, some of the most healing words spoken to me were from a stranger — a genetic counselor tasked with talking to us over the phone about the life-altering condition Reed had. She told me the story I didn’t know yet: Reed’s diagnosis didn’t define him; it simply explained some things about him. Those words gave me a different story to tell.

And that story became my mantra every time my heart tried to throw up confusion and guilt and sadness and anger — all those grief-torn emotions. Doesn’t define him. Just explains some things about him. Doesn’t define. Just explains. Not defining. Just illuminating.

But five years has sanded off the ragged splintering grief and given me a new story.

His diagnosis does define him, just in a way that, at first, I couldn’t understand without waves of grief crashing down. Now I can acknowledge straight-forward that there’s not one facet of his existence those three extra chromosomes don’t touch. I don’t know — and never will — a Reed without hypotonia and apraxia. The way he walks, the way he talks, the way he holds his head cocked to the left, the way his frustration sparks fierce and just as quickly dissipates, the way his anxiety can overwhelm him — all of those are the sum of his multiplied genes, the most prominent qualities others often notice about him first. His genetic disorder is one of the most profound influencing circumstances in his life, defining much of what he does.

But here’s where the story takes a new direction for me: There’s more to know than what defines him. His diagnosis can’t account for how he loves to laugh at his own wicked sense of humor. How he is gentle and sweet and loves holding hands and cuddling up on the couch. How he adores dogs. How he could eat bread all. day. long. How he loves to run. How he observes and he asks questions about everything. How he’s a genius at hidden picture puzzles. How he loves to slide, throw rocks, blow bubbles, write the letter “e” and play hide and seek. And how much he loves his baby sister.

With Reed, we live both within the constraints of his disorder and yet beyond those borders, because there’s so much more to know about him than the existence of those three extra chromosomes. I’ll always be thankful for what that genetic counselor originally told me because her words probably saved my life a million times that first year. But sometimes as our grief changes, we need a new story — one that walks us through the present season with new strength and new joy.

Follow Allison’s journey on Writing Is Cheaper Than Therapy.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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