Today I share one of the most important pieces I have written — My Father’s Day Pledge from 2011 — along with an update for 2017. Bryson, now 10, is in the middle of the group selfie that accompanies this piece. My son Connor, now a teenager, is on the left. That’s me on the right.
My son Bryson is a gift. His blue eyes and smile light up the world for everyone around him.
He is also disabled.
After years of tests and zero results all we know is that he has a rare but undiagnosed genetic disorder. Almost five, he can’t play hockey or video games or hide and seek or all the other things that five year olds are supposed to do. He can’t even walk or talk or crawl.
But he makes progress every day. Today’s big achievement was that he used a regular sippy cup by himself for the first time instead of drinking milk from a bottle. These are the moments that make me as proud as I would be if he had just scored the game winning soccer goal.
Most importantly, Bryson is happy. And innocent. He’s never had a time out or been sent to the principal’s office or done anything mean to another human being. He is simply incapable.
There are phases of mourning that you go through when you learn that your child is disabled. I’ve been through them all.
I’ve arrived in a place where I feel okay about it, mostly. But once in a while something happens that reminds me that this world is not kind to those who are different.
Tonight we took our two boys out for dinner to a new Thai/Japanese restaurant that opened around the corner. It’s all-you-can-taste: You order what you want from the menu and they bring it to your table. We brought a thermos of food for Bryson as it’s hard to find food he can eat in restaurants.
We ordered our first round of food and it came quickly — Tom Yum soup, mango salad, sushi, green curry, coconut shrimp, and spicy octopus. The food was hot and fresh and delicious.
We ordered our next round. Mango chicken came quickly. But 30 minutes later we were still waiting for more sushi and barbeque ribs. We asked our waiter to check on the order.
Despite the wait, the kids were in good spirits. My seven-year-old son Connor was passing the time by inventing a new variation on Pokemon which he called Connormon. And Bryson was communicating with us from his wheelchair the only way he knows how — through songful, deep-throated vocalizations.
Another 15 minutes later we asked to speak to a manager, who explained to us that the owners were trying to save on staffing costs and there weren’t enough people on duty to service the busy restaurant.
I asked to speak to the person in charge. A few minutes later, a woman dropped by our table. Naturally, I assumed she was there to hear my complaint. She wasn’t.
“You need to tell your son to be quiet,” she said, pointing at Bryson. “Other guests are complaining that they can’t enjoy their meals in peace.”
We were flabbergasted. We pointed out what we thought was obvious — that Bryson has severe mental and physical disabilities and that we can’t just tell him to be quiet.
“It’s more than one table that has complained,” said the woman in charge, before agreeing to expedite our order and put it in take-out containers.
Fifteen minutes later the food arrived, along with the bill, which the waiter had discounted by 10 per cent. I paid the bill and did something I’ve never done before — I declined to tip.
Before leaving I set out to find the most senior person in the restaurant. I told my story — not just about the food delay but also about the request that we shut up our disabled son — to a man who apologized profusely and offered to credit the entire meal. He also agreed to my request that the restaurant itself pay our waiter a $15 tip. For this reason, I’ll refrain from naming the restaurant here.
We live and love Bryson’s differences every single day. Nights like this one remind me that there are people who can’t accept difference for a single meal.
As Father’s Day approaches, my pledge to Bryson is to be by his side to protect him from the judgments of this world until the day I die.
My single greatest fear in the world is that there will be nobody to protect him after my wife and I are gone.
I published this post six years on keithmcarthur.ca, and I’m sharing it here ahead of Father’s Day 2017.
A few updates since 2011.
Bryson is turning 11 in August. And after years of tests, he was finally diagnosed with a rare genetic condition called GRIN1 in 2015. He can’t walk yet, but he can make choices for himself by pressing buttons on communications devices. He is a huge fan of the Toronto Blue Jays but I haven’t been able to take him to games this year because of my recent surgery.
Something happened recently which reminded us all of this terrible incident from seven years ago.
Laura’s mom Kathy was staying over to help out with Bryson while I was in hospital recovering from my kidney transplant. One evening they took Connor and Bryson for dinner at Windfield’s, a local diner.
Towards the end of their meal, the owner stopped by their table to let them know that another table had complained about Bryson’s noise. But this time things were different.
The owner told them Bryson was welcome in the restaurant, but they were not.
I’m grateful for people like the owner of Windfield’s, who will stick up for people who can’t stick up for themselves.
But when Donald Trump mocks a disabled reporter or the Toronto Police mock a woman with Down Syndrome, I am reminded that Bryson’s life will never be easy.
For this reason, I take my Father’s Day Pledge as solemnly today as I did in 2011.
Tears well up in my eyes for Bryson. Tears surface thinking about the many times our daughter, Livi, has endured unkind behaviors from others, too. This had led to your advocacy for Bryson and others. It has made you stronger. Our kids with disabilities will change the world through parents and loved ones like you advocating. Keep writing, Keith! You have a gift to be shared!
I’m so sorry for what you and Olivia have had to endure over the years. I’m sure it gets even harder as our kids get older. I’m really looking forward to seeing you all next week!
As Bryson’s grandparents we could not be happier that he has the support of his family. We have also had our tears as we see what our children and grandchildren have to deal with on a daily basis. We love this little man with our whole hearts. We also pray that someday there will be a breakthrough to help him and his family. His smile lights up rooms! Jim and Kathy
Thank you! Bryson is blessed to have amazing grandparents in his life.