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His Diagnosis Does Define Him

April 11, 2016

Happy update! This post has been published on The Mighty! Check it out and give it some love @ These Words From a Genetic Counselor Changed the Way I See My Son’s Apraxia Diagnosis.

New grief needs compassion and tenderness and space to breathe, when wave after wave overwhelms and leaves you so tender and raw. Sometimes you need someone to tell you another story just to keep your head above water


When Reed was first diagnosed, 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. When all I could see was what felt like a death sentence, those words gave my heaving soul 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 himDoesn’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 that 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 notice about him first. His genetic disorder is one of the most profound, influencing circumstances in his life, defining much of who he is and 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 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 and throw rocks and blow bubbles and write the letter “e” and play hide-n-seek. How he loves his baby sister.

With Reed, we live both within the constraints of his disorder and yet beyond those borders, because there’s much more to know about him.

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, bringing new strength and new joy.

4 Comments leave one →
  1. kwilkins permalink
    April 11, 2016 10:15 pm

    I love to read your blogs!

  2. Lila Oringderff permalink
    May 10, 2016 11:56 pm

    Allison, I just love your story’s, I also have a special need child, she is 14 now but when I first got her at age 2, she couldn’t talk, wasn’t potted, couldn’t feed herself, she wouldn’t even take a bath, she would screen to the top of her lungs and really fight you. I adopted her, she was my step son fourth child and his wife didn’t take care of her, so I took her. Between my 2 older daughters and i, we have gotten talking and now she does really well with her education, but has to have help. She doesn’t do well with loud noises, what is funny is she can tell you when it is going to rain before the weather man can. But threw alot of crying, praying, screaming why, we have gotten this child, where she can play softball, reads fair, but there is still alot of things this child, can’t do and probably won’t ever do. Like she will never be able to take care of herself,by herself, you have to tell her what to do evertime she takes abath, or washes dishes,or sweep a floor. Or whatever it is you need her to do.
    But the most funniest child, most loving, most helpful, child you can fine. She loves everyone and know no stranger.
    The point is love this child, learn when he learns, which is amazing to see, just never give up on him they will shock you, in what they can do, specially when all the dr. You go to tell you differently. God is the only one that know what these special need child can do, and I guess God gave them to us to just love.
    Love You
    Aunt Lila

    • May 11, 2016 12:00 am

      Thank you so much for sharing all this with me Aunt Lila. I really love the last thing you wrote that God gave them to us just to love. At the end of the day that is what matters.

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