GRIN Disorder, Kidney Failure and Fathers Day How One Family is Surviving it All – CBC.ca

Posted: June 23, 2020 at 12:53 am

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 Brysons dad would continue to change my identity. While our familys COVID-19 isolation has been challenging, it has provided me with the opportunity to reflect on the evolving nature of my role as father.

Happy Faw-vers 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. Its a surprisingly expensive gift, but my wife Laura reminds me that this is a special Fathers Day. Shes seven months pregnant, and even though we havent met our second child, were already in love with the newest member of our family.

I thank Connor before leaning in close and kissing Lauras 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.

Baby Brysons first year has been tough. Hes missed all his milestones and doctors have confirmed that he isnt developing typically. Hes 10 months old but cant sit independently, or crawl, or track objects with his eyes. Hes nowhere near being able to say his first word or take his first steps. But doctors dont 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; theres less room for error. I need to get this right.

A few days before Fathers 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. Theres this sound he makes that we call singing but its really more of a happy wail. Were 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 whos going to protect him when Laura and I arent around."

We ask her to pack up our food and we head home, full of sadness and fear for Brysons future. Once hes in bed, I sit down and type out what I call my Fathers 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 whos going to protect him when Laura and I arent around.

You can listen to Keith McArthur and Bryson's story in his podcast Unlocking Bryson's Brainright now. Listen here.

This ones hard. My own father died of cancer a couple months earlier. Theres this massive hole in my life that cant be filled, and on Fathers Day, it feels particularly unbearable. Ive become so depressed over the past couple of months that I cant 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. Hes almost eight but he cant 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 cant figure out whats causing Brysons condition.

I love Bryson so much, but I cant help wondering if hes even capable of loving back.

It all feels too hard. I promise Laura Ill see a doctor about my depression. Two weeks later Im on anti-depressants. Life isnt easy, but at least its manageable again.

Were celebrating Fathers 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 were here in Pittsburgh, meeting other GRIN Disorder families from across the country. Bryson is no longer alone.

Weve agreed to host this years GRIN family conference in Toronto, so I spend Fathers 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. Im shocked when they tell us that a cure for GRIN Disorder might be possible. Bryson is perfect; I dont want to change him. But if new treatments could allow him to communicate and make more of his own decisions, wouldnt he want that?

My paternal identity changes once again. Im 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 Brysons Brain launches two years later in the midst of a global pandemic.

The world is slowly getting back to normal but not for my family. GRIN Disorder usually isnt fatal, but some GRIN kids have died suddenly from respiratory complications. Im also on post-transplant drugs that lower my immune system. We cant risk allowing COVID-19 into our family, so well be spending this Fathers Day much as we have spent the past three months in isolation.

Brysons medical appointments are all on hold. So is the physio and speech therapy he usually gets through school. And the Grade 8 graduation ceremony Id been looking forward to for years? Its not happening this year. Worse still, all the research Ive been pushing to help find a cure is on hold as labs that arent 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 Fathers Day gifts.

Bryson does well in his walker at school, but hes 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 Ive ever seen him move before. Its the best gift I could hope for.

"We cant risk allowing COVID-19 into our family...."

But theres 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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GRIN Disorder, Kidney Failure and Fathers Day How One Family is Surviving it All - CBC.ca

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