Happy Diagnosis-versary (or why I celebrate my worst day)
It occurred to me, as I mixed cake batter to celebrate my diagnosis-versary, I remember very little about that day 7 years ago. It’s the day, September 4, 2013, when an MRI was taken and revealed a hole in my cerebellum. However, if you ask mom, the details of the day are clear and present. She’ll tell you how she cried as she drove 100 miles from Philadelphia to her beach home in Wildwood, New Jersey. How she called her best friend and had her Google: cerebellar+ atrophy. And how her best friend read the causes, the symptoms, the treatment, and the prognosis of cerebellar atrophy. And how mom wore sunglasses all day.
Her boy’s life was about to– not only change– but medical imaging revealed a sudden missing part of his brain. An important part. A part you need. A part that was not coming back and was beyond repair. And there was nothing mom could do about it. Except bare witness, bite her lip, straighten her sunglasses, and accept, or fail to accept, tears that fell.
But today, I’m alive. And Dylan, my 7 year old son, steps in the kitchen and swings open the refrigerator door. Two activities he’s perfected. And not to sound like an over-boastful dad–but my kid is a snacking prodigy.
“Whatcha making dad?”
I pour the chocolate batter into a greased tin pan. Dylan rummages like a raccoon through a bag of grapes. My worst day came two months after Dylan was born–7 years ago. When I look at Dylan, when I look at the MRI, I’m pressed with the same question, “Where did the time go?”
Being my youngest child, Dylan has no knowledge of me being well. To him, I’ve always been stumbling, walking with Clark Able, and making cakes on September 4th. He was gifted a limited dad. Smiling, hardworking, resourceful but limited. He’s never seen me run or play soccer or share my shoulder on a roller coaster. And I know–what he doesn’t know yet–we will never be able to play 1-on-1 basketball or dive in the ocean together or go for a hike together. Writing that last sentence was hard. So hard I could have used mom’s sunglasses.
Children are their parent’s bookmark. Dylan is mine. His beautiful, passing life keeps time. Blonde hair, freckles, and sweet-tooth mark where one chapter of my life ended and another began.
With a mouthful of grapes, Dylan slurs, “Dad, why are you making a cake? Is it someone’s birthday?”
One of my favorite things since I created this blog 5 years ago is that my friend and fellow writer, Deb Duaer, who was battling ALS, read my 2017 post about celebrating my worst day, decided to celebrate her diagnosis-versary with a cake of her own.
Deb has since passed. But her defiance, her fighting spirit sprouts goosebumps on my arm as I smooth the batter with a spatula. As I feel the strangle tingle of joy and sadness reserved only for the living.
“I make a cake on September 4th every year. It’s a special day for me.”
Dylan shuts the refrigerator door and chews down the grapes.
“Is it because we have to go back to school?”
I laugh. “No, but maybe we should celebrate the first day of school.”
“No we shouldn’t.”
Most of the memories from life B.D. (Before Dylan) are hard to remember. Cindy and I often ask ourselves what we did before having kids and we just stare at each other, unable to conjure up a solid thing.
Seriously, does anyone remember life before kids?
I open the oven door, slide in the pan, shut the oven door, and turn to find Dylan standing in the middle of the kitchen staring at me.
“When is it going to be done?”
“Can I have some when it’s ready?”
“Sure, but the cake is to celebrate something bad.”
“So, it’s still cake.” Not only a snacking prodigy but profound like a philosopher as well.
Dylan scurries away. He starts second grade next week. When I think back to being seven I can remember my teacher’s name, Mrs. Tozzi, and that my t-ball team was the “Trappers” and we wore light blue jerseys. And that’s about it.
I don’t recall what struggles my parents were dealing with. Martial problems? Financial strains? Health concerns? I have no idea. And why should I. I was 7. I was just a boy living fiercely in the moment. Eating grapes before they spoil.
And that is why I celebrate my diagnosis-very. My worst day. To recognize the turning point chapter in my life. To defiantly prove my aliveness. To fiercely live in the moment.
A moment soon-to-be plucked from the vine.
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