GRIN Disorder, Kidney Failure and Father’s Day — How One Family is Surviving it All
By Keith McArthur
Family photo by Brian Tao/Luxography; All other photos submitted by Keith McArthur
Jun 19, 2020
My life changed forever the day I became the father to a son with extreme special needs. But I could never have imagined just how much being Bryson’s dad would continue to change my identity. While our family’s COVID-19 isolation has been challenging, it has provided me with the opportunity to reflect on the evolving nature of my role as father.
Father’s Day 2006
“Happy Faw-ver’s Day.”
My two-and-a-half-year-old son Connor stumbles toward me, carrying a gift almost as big as he is. I unwrap a PlayStation 2. It’s a surprisingly expensive gift, but my wife Laura reminds me that this is a special Father’s Day. She’s seven months pregnant, and even though we haven’t met our second child, we’re already in love with the newest member of our family.
I thank Connor before leaning in close and kissing Laura’s belly. “Thank you, baby.”
If you'd like to make your Father's Day crafty, have your little ones try a fun printable — print it here.
Father’s Day 2007
Baby Bryson’s first year has been tough. He’s missed all his milestones and doctors have confirmed that he isn’t developing typically. He’s 10 months old but can’t sit independently, or crawl, or track objects with his eyes. He’s nowhere near being able to say his first word or take his first steps. But doctors don’t know why.
When Connor was born, my identity changed. I was no longer just a guy. I was a father. Becoming a special needs dad has changed me once again. The responsibility feels weightier; there’s less room for error. I need to get this right.
Father’s Day 2011
A few days before Father’s Day, we go out for dinner at an all-you-can-eat Asian restaurant. The food is tasty but the service is slow. And Bryson is loud. There’s this sound he makes that we call singing but it’s really more of a happy wail. We’re accustomed to it, but the diners around us are not. Someone complains and a manager drops by our table.
"You need to tell your son to be quiet," she says, waving at Bryson. "Other guests are complaining."
"My single greatest fear is who’s going to protect him when Laura and I aren’t around."
We ask her to pack up our food and we head home, full of sadness and fear for Bryson’s future. Once he’s in bed, I sit down and type out what I call my Father’s Day pledge, “to be by his side to protect him from the judgments of this world until the day I die.”
My single greatest fear is who’s going to protect him when Laura and I aren’t around.
You can listen to Keith McArthur and Bryson's story in his podcast Unlocking Bryson's Brain right now. Listen here.
Father’s Day 2014
This one’s hard. My own father died of cancer a couple months earlier. There’s this massive hole in my life that can’t be filled, and on Father’s Day, it feels particularly unbearable. I’ve become so depressed over the past couple of months that I can’t seem to handle life anymore. I find myself leaving my desk at work and sneaking off to my car to hide, sometimes for hours.
Fears about Bryson are also weighing heavily. He’s almost eight but he can’t walk or talk. His brain seems to be locked at the developmental age of 12 months. He also has violent episodes where he hurts himself and those around him. Hopes that he might just grow out of this are a distant memory. Doctors have performed so many tests — dozens of blood draws, MRIs, muscle biopsies — but they can’t figure out what’s causing Bryson’s condition.
I love Bryson so much, but I can’t help wondering if he’s even capable of loving back.
It all feels too hard. I promise Laura I’ll see a doctor about my depression. Two weeks later I’m on anti-depressants. Life isn’t easy, but at least it’s manageable again.
Father’s Day 2016
We’re celebrating Father’s Day in a hotel room in suburban Pittsburgh. Connor hands me some gifts, including a barbecue cookbook and a broken picture frame, the casualty of an overpacked suitcase and a six-hour road trip.
Our lives have changed dramatically over the past two years. I got off the anti-depressants, then experienced kidney failure, then got a second chance at life when my sister Stephanie donated one of her kidneys to me.
And after nearly a decade of searching, we finally got a diagnosis for Bryson. A genetic sequencing test revealed that Bryson has a mutation in his GRIN1 gene — one of several genes that encode receptors in the brain that play a critical role in learning and memory. Pathogenic variants in this cluster of genes are known as GRIN Disorder.
The diagnosis is why we’re here in Pittsburgh, meeting other GRIN Disorder families from across the country. Bryson is no longer alone.
Father’s Day 2017
We’ve agreed to host this year’s GRIN family conference in Toronto, so I spend Father’s Day finalizing plans. Families travel in from across North America and we line up a panel of scientists who can help us understand this rare disease. I’m shocked when they tell us that a cure for GRIN Disorder might be possible. Bryson is perfect; I don’t want to change him. But if new treatments could allow him to communicate and make more of his own decisions, wouldn’t he want that?
My paternal identity changes once again. I’m no longer just a father or a special needs dad, but a rare disease warrior putting my life on hold to chase down a cure. I make a podcast series about this journey. Unlocking Bryson’s Brain launches two years later in the midst of a global pandemic.
Father’s Day 2020
The world is slowly getting back to normal but not for my family. GRIN Disorder usually isn’t fatal, but some GRIN kids have died suddenly from respiratory complications. I’m also on post-transplant drugs that lower my immune system. We can’t risk allowing COVID-19 into our family, so we’ll be spending this Father’s Day much as we have spent the past three months — in isolation.
Bryson’s medical appointments are all on hold. So is the physio and speech therapy he usually gets through school. And the Grade 8 graduation ceremony I’d been looking forward to for years? It’s not happening this year. Worse still, all the research I’ve been pushing to help find a cure is on hold as labs that aren’t focused on COVID-19 shut their doors.
On the plus side, pandemic life means more family time. And on a cloudy weekend in May, my son Bryson delights me with two early Father’s Day gifts.
Bryson does well in his walker at school, but he’s been struggling at home. He just plops down on the safety seat instead of moving forward. So Laura has an idea. She removes the seat. And suddenly Bryson takes off, walking better than I’ve ever seen him move before. It’s the best gift I could hope for.
"We can’t risk allowing COVID-19 into our family...."
But there’s a bigger one yet to come.
Bryson loves it when I kiss him on the left side of the neck, just under his ear. When he wants me to do this he puts his hands on the back of my head and pulls me close. But this time, he pulls me in close and, for the first time, starts kissing my face. The kisses are wet and toothy, and make both of us erupt with laughter.
And they are unmistakable acts of love.
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