A boy, an awful disease, and a Magic 8 Ball
Do you believe in fate?
How about destiny?
How about the prophecies delivered by a shaken Magic 8 Ball?
I believe in fate. I believe in a higher power–God. Buddha. Walt Disney. I believe someone, something is up there sprinkling dust on us, hoping that we look up from our 4G lives to witness this magic dust dancing barefoot about our earthly lives.
A few weeks ago a friend sent me a story about a boy in his neighborhood– Connor Dobbyn, an 11 year old boy recently diagnosed with Sanfilippo syndrome, a form of childhood Alzheimer’s.
I read Connor’s story. My heart fluttered, I shook my head, and I whispered, “That’s awful”, but one of my own kids called “Dad!”, the tea kettle whistled, there was a knock at the front door and, again, I’m off–answering the noises of my own life.
Then someone in China gets sick.
A few weeks pass.
Someone in Italy gets sicks.
A few more weeks pass.
Then, someone in America gets sick and America transforms into something absurd.
We are quarantined. Hope, like Lysol, is hard to find. Schools are closed. Churches are closed. A public cough is met with private horror. Shopping stores shelves lined with toilet paper are rolls of gold coins. Birthday parties now consist of kids hanging and screaming out car windows like Hollywood stuntmen. And hugging has become a forgotten art.
Welcome to life on Earth.
The other day another friend– yes, I’m a 40 year old suburban male and I have two friends (not including my wife)–sent me a message through Facebook messenger. In my world, Facebook messenger is saved for 40th surprise birthday party information and weird memes sent by the aunt I never see.
Anyway, my friend forwards me the story of Connor Dobbyn.
My friend says they’ve been following the story and it’s just heartbreaking. My friend says, because of the Coronavirus, the family is having a hard time raising money and gaining news coverage. My friend suggests I write about Connor. Maybe my writing can help spread Connor’s story.
That night at dinner, I mention it to Cindy and she tells me her sister who, lived in Tennessee at the time, worked with a boy who has Sanfilippo syndrome. My heart flutters. Another connection.
I push around my beans and wonder, “Should I write about Connor and Sanfilippo syndrome–a vicious rare disease that affects 1 in 100,000 U.S. children?
A unseen hand shakes a Magic Eight Ball.
“Signs point to yes.”
If you don’t know who I am– my name is Jay Armstrong– husband, teacher, writer, reader, music lover, a pro-wrestling historian, an almost-handsome soccer dad who has a hole in his brain.
Doctors found it six years ago when I wasn’t feeling well. To this day, doctors don’t know if the hole is going to get bigger and there is no medical dirt to fill the hole. I have lost some physical skills like running and jumping. I can’t ride a bike. Balance can be a problem. Vision can be a problem. And I’m prone to migraines.
With little options, for six years, I filled the hole in my head with this blog.
Each story was a shovelful of dirt I poured into the hole–attempting to fill the hole with hopeful stories. Stories of resilience. Stories that tussle the human spirit–which seems better than filling the hole with potato chips and Nicholas Cage movies.
This morning I received a message from a kindly stranger, “In this dark time, your writing gives me hope. Thank you.”
I sip on my coffee and think about Connor Dobbyn. I watch my own kids bounce carefree around the house, unaware of how lucky they are to have healthy bodies and minds. I think about my grandfather who spent the last seven years of his life afflicted with Alzheimer’s. I think about how my mother took care of him. Wiping his chin. Cutting his food. How he would sit there, repeat the same questions, and stare at the world like a child, like someone who has never been here before. I think about how unfair, how cruel this life can be. And I think about hope.
I have never met Connor Dobbyn, yet all reports indicate this kid is all heart.
Always happy. Always laughing. Always positive. I Googled. I read more about Connor and Sanfilippo. The details are not good. His disease will strip away his IQ, his ability to communicate, his motor skills. He will most likely die before he reaches adulthood.
I was 33 when I was diagnosed with the hole in a brain–an adult, or at least I was trying to be. My reaction was self-indulgent. Angry, sad, and bitter. It took some beer, some darkness, a lot of second guessing, and six years of writing to make my neurological lemon into a weird, tartly literary lemonade…this blog.
Connor’s story gives me hope. And why wouldn’t it. Here’s a kid, facing terrible circumstances, choosing to be something that’s difficult for most adults–hopeful.
Connor’s story is important because, since reading it, his story has rippled through me. I’m making an effort to smile more. Be more cheerful, like a child undaunted by circumstance.
Because there’s a brave 11 year old out there who’s facing his afflictions with cheerfulness and happiness and hope. He knows life is only going to get more difficult and yet he chooses to make the best of it.
Magic Eight ball…
“Can we face our own struggles with the same cheerfulness as Connor?”
Life’s beautiful reciprocal is this: Connor’s story gives me hope and my story gives a kindly stranger hope.
That’s how hope works.
Like a good virus, hope spreads from person to person. And despite social distancing efforts–hope is, and will forever be, contagious.
Your story of hope remedies my despair.
Welcome to life on Earth.
If you can take a few minutes, click here, and read about Connor and if you can donate a few dollars that would be awesome!
I look out the window. It’s raining and the sky matches my grey sweatpants. The TV tells me gas prices are dropping. A good time to fill up the tank. I look out the window again. I think about it. But there is really no place to go.
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