Paul wasn’t supposed to live. And then not past three. And then not past six. And now he’s thirty.
My new brother-in-law Paul has a disability, or to use his more enlightened vocabulary a ‘diverse-ability’. It’s a one-in-a-million condition, for real. We can talk about the science later, or not, because in some ways the details don’t matter. It’s like when the end of a movie doesn’t say what happened to the main character, or wanting to know the gory details of a crime. Curiosity is natural, but it can overshadow what’s really important about the story.
I married Alexi less than two years ago, officially joining houses with a family that is different from mine. What I noticed from the start is the openness and closeness of this new family. Emotions are stated plainly. Arguments happen. They can spend so much time together without a break. I found this remarkable, but it could make me feel uncomfortable.
Paul is Alexi’s younger brother. He is very social. His 30th birthday was packed with a mix of family, friends, rugby teammates, young entrepreneurs, and free-spirited souls. He has a ridiculous guffawing laugh that makes me stop whatever I’m doing to join in. His bright blue eyes have a wonderful mischievousness lurking just below the surface, which often manifests as a smartass comment that catches me off guard.
His stubbornness is at once his best and worst quality. He dreams about wheeling across Canada and doesn’t want to hear reasons not to, but has to confront his body’s limitations. He trained too much, which resulted in a cease–and–desist order from his metabolic specialist. He lives very independently and works hard to make it happen. But he also needs support to prep meals and clean because his fine motor control is varied. I admire Paul’s stubbornness, despite the worry it sometimes produces for those around him. It pushes him to live a great life.
Life’s most meaningful experiences are so memorable because they are the best and hardest things you will ever do. This has been true for me about joining my new family.
It has been amazing. I sat in a room while the whole family worked with Paul to make a “path.” A path is a life plan where you write and draw all your big dreams, hopes and ambitions, and then work back to create a workable plan to get there. It was in these few hours where I saw—really saw—how much love and closeness this family shared. The conversation was about living independently, finding love, finding meaningful work, and living well. I saw Paul’s courage as he talked about his dreams and some of his unique challenges. I heard overwhelming support, interspersed with some hard truths and reality-checks.
It has been hard. Before we got married, Alexi and I talked about having children and the possibility of having a child with a disability. I was terrified. I asked if we should find out before getting married. I asked if we should not get married if it turned out we couldn’t have kids. We went through genetic testing to see if we were both carriers of the particular gene. It was a game of chance. It was a conversation with doctors about probabilities. It turns out we’re OK.
It was during our conversation about children that I felt most loved, and saw my wife’s courage and commitment. She said, “I love you, and that’s enough. We’ll figure everything else out.” These two sentences changed me. I was coming from a place of fear. She was coming from a place of love, commitment, and faith.
Her parents are remarkable and candid. I see their joy and appreciation for life. I remember his mother saying, while we were sitting looking at the water, “You stop worrying about a lot of things when you’re not sure if your child is going to live or not.” I know it’s been hard for them having a child that needs more support through their life. A son that is very independent, but won’t launch the same way as their daughter.
Getting to know Paul has made me more compassionate. I am more willing to ask questions and try to understand people’s experiences. I am more willing to contribute to my community. I see the randomness, fragility, unfairness and most of all the beauty of life. We can’t predict who will be in perfect health, have a car accident, get cancer, or have a disability. I am grateful for the support that he and my family receives. Because the same thing could happen to me, to my neighbor, or to my friends. I want to live in and help build a compassionate community. It’s hitting home now because I will be a father soon too.
The Family Support Institute of BC, located in New West, strengthens and supports families faced with the extraordinary circumstances that come with having a family member who has a disability.
Vela is a Langley-based non-profit that helps families create a “microboard”. A microboard is a small group of committed family and friends who join together with the individual to create a non-profit society (board) to help the individual plan their life, advocate for what they need, and connect to their wider community.