We Got Our Diagnosis in the Last Place I Would Have Guessed

I’ll never truly be able to face the cat litter aisle in Walmart again.

In my mind I imagined getting Ryder’s diagnosis (whatever it was going to be) would be much, much different. Perhaps there’d be a long, dark-colored table, an impressive collection of highly educated and specialized individuals in long white coats, boxes of Kleenex and maybe even a doctor with a single tear falling from the corner of his or her eye. I had the scene all figured out.

For months our family had gone through what I would later find out was the standard rigmarole of having your child diagnosed with Spinal Muscular Atrophy. First, there was concern over Ryder’s inability to achieve the walking milestone. Then there were the visits to the family physician and two separate developmental orthopedic specialists who assured me I was essentially a neurotic and overbearing mother who carried her child too much. Eventually, Ryder did walk… but it was never right, and I knew it.

Eventually I found someone who would listen to me, which was both comforting and terrifying. For months we watched our son get poked, prodded, stretched and shocked. Phrases like Muscular Dystrophy, Spinal Bifida, Cerebral Palsy and Inborn Errors of Metabolism were tossed around like the freshly folded laundry on my son’s bedroom floor. And yet, despite all my efforts to figure out what was happening with Ryder, I was in denial. And each negative test result fed into it. So when I received a call from a woman with the Children’s Hospital calling herself a “Genetic Counselor,” I had no problem taking it in the cat litter aisle of Walmart. Because after all, the result would be negative. Obviously my assumption would be incorrect or there would be no point to this tale. When the woman on the other end of the line quickly relayed that my 2-year-old son had a confirmed diagnosis of Spinal Muscular Atrophy Type 3, I found myself befuddled. There was no table, no white coats, no Kleenex, no tears from anyone except for the ones beginning to manifest deep within me.

If I go back in time to see my confused, panic-stricken 6-months-ago self, sandwiched between the Tidy Cat, I’d whisper into my ear the word “breathe.” I’d want myself to know that in the months that follow, life will be different, of course — part of it spent in denial, part of it spent in reflection — but most of it spent in awe. Awe for the inconceivable outpouring of support and genuine concern from family, friends (both old and new) and a community that would stand behind Ryder and cheer him on for every accomplishment he attains. Awe for T-shirts worn across the country in my son’s honor and for the buzz cut that now bestows my head (where trademark pigtails once hung). Awe for a boy, now 3, who is so small yet so big — a boy who is so weak but so completely strong. Defeat will never be an option. And then I’d remind myself that when in doubt, when you can’t believe this is happening, when you watch him fall as he struggles to walk, when looking in the mirror forces reality and stifles your denial, when all else fails, remember this: Strength is greater than muscle.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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