Lessons From My Children About Frustration, Disability and Wanting it All

I realize that a big part of my son’s appeal in playing soccer with me is the chance to beat an adult. And not just beat him. Even if I’m trying my hardest (fueled by a cup of coffee, with new gloves glued to my hands, and having done some warm-up exercises), Dad’s game against Ewan feels like a high school game with Lionel Messi playing him. Or, if you’re not a soccer fan, like Rocky chasing a chicken.

For Ewan it’s a lot of fun. He plays on the field and I play defence on the paved car park in front of our house. The goal is a cheap, sun-faded folding net. I chase him around in my usual wheelchair, playing in the chair position to block his path. He’s already learnt that wheels don’t change direction like feet do – he guides me hard in one direction, before cutting back. As I turn around he’s already hitting the ball into the net. If I give him too much room he just runs forward and kicks it past my limp feet. Ewan 2, Dad 0.

I have fun with it, too, if I can get through it. There was a long period in my wheelchair life (starting immediately after my C7 spinal cord injury and continuing for about 15 years, during a Paralympic career that relied heavily on wheelchair speed and agility) when getting beat up by a 7-year-old would have been incredibly annoying to me. I don’t know at what age I expected my kids to surpass my own athletic abilities, but I was hoping to endure more than this.

Ewan inherited obnoxious levels of competitiveness from both me and my wife. While I try to teach him that not everything has to be a competition and that we can’t always win, I, at 41, am still trying to come to terms with these feelings as well. I’m getting a good workout, I tell myself. It’s satisfying to watch Ewan revel in that unique feeling of getting better at something. It doesn’t matter that I can’t stop more than one in ten shots, that I can’t force him to try harder, that I can’t show him how to improve his footwork… we’re having fun… who am I kidding?

During a recent session, I got tired of being beaten. I stood in front of the net and told him he had to shoot from distance. At first, he loved kicking the ball at me with all his might. Then he realized my size obscured all but the far edges of the goal. The tables had turned. Somewhere around my ninth block, Ewan’s frustration center went into overdrive. “Baba!” — he’s called me since he learned to talk — “This isn’t fair! You’re too big, it’s too hard!”

—Ewan. When we were playing, how many shots did you make without me blocking any?

He paused. Anger spread across his face as he realized what she was getting at. “Very much.”

“And what did I do when they called me over and over again?”

“We keep trying.” Her anger turned into a pout as she said this. She didn’t like the lesson, but she had no objections either. We kept playing.

Ewan wants to be the best at everything and he wants it now. A big part of sports is learning how to win without getting too cocky and how to use defeat to grow and motivate yourself instead of using it as an excuse to shut down and stop trying. He got to work on both of those things a bit today. I tried not to be cocky.

Same genes, different results

My daughter, Lou, helps us balance. She’s about to turn 3, and if she has the competitive gene, it hasn’t kicked in yet. While Ewan started running with me down the sidewalk shortly after he learned to walk, Lou doesn’t care who’s in front and who’s behind.

Ewan watches professional baseball players on TV and then goes outside and tries to emulate their perfect form. I watch a baseball game, then grab a ball between my three quad fingers and throw it in a shot put. Lou watches us, then grabs the ball and a stick, twists her torso into a discus throwing position, and does a spinning throw that sends them both in opposite directions. “Baba! Did you see my awesome Lou throw?” In sports and in life, Lou plays Lou, and is often pleased with the results.

It’s not that Lou’s life isn’t without its frustrations. Quite the contrary. Lou wants to do everything herself and isn’t afraid to scream (in a high-pitched, bald-eagle tone) and throw and stomp when her uncoordinated limbs don’t do what she wants. I feel her wrath. Last month, I let out an “Aha!” and threw a plastic strap across the driveway after my fifteenth failed attempt to zip-tie it to the frame of my handcycle. I felt silly after throwing it, but also calmer. My childish outburst had released some of my bubbling anger. A few tries later, I managed to get the plastic strap back in place.

So I try to remember that outbursts, whether from toddlers or adults, have their uses. “It’s okay to be angry. It’s not okay to be cruel,” my wife tells Lou. And that seems like good advice for dealing with disability, too.

New perspective

The first time Ewan told me he wished I wasn’t in a wheelchair, we were sitting at a turnoff for a bike path overlooking the Columbia River Gorge. We were about 200 feet above the river and could see its snow-covered waters winding between cliffs, mesas, and rolling hills. We’d just climbed a couple of miles to get there, him on his mountain bike and me on my handcycle. There were high clouds over a blue sky, a cool breeze, and we were both rosy-cheeked from the effort. I was as happy as could be—until he made that wish. I looked at him for a second as he bit into his granola bar and asked, “What’s that like?”

He finished chewing and said, “You know, so you can do more things with me.”

That hurt me. “Well, now here we are, riding bikes together, playing basketball and soccer and mountain biking…”

“Yes, all of that is fun, but we could still do more. Like hiking or jumping on the trampoline.”

“It would be fun,” I said. “I guess we just have to enjoy the things we can do as much as possible.”

“Yeah, sure,” he said between bites.

I wasn’t bothered by the fact that he didn’t like my answer. I didn’t find it very satisfactory either.

I thought back to a recent day on the mountain bike. Lou was on my lap and we chased Ewan down the trails while my wife took a quick break to pedal at adult speed. The dogs ran alongside me and Lou laughed and yelled, “We have to go fast! Go get him!” as Ewan pedaled furiously down a winding forest trail. Everyone was there. Everyone was happy, and I felt like the most capable father in the world.

A few days later, after dropping Lou off at her hippie, outdoor preschool, I got stuck in a patch of deep gravel while walking back to the van. I had to ask another parent to rescue me from what might as well have been quicksand. That was the extent of my capabilities. I got grumpy and angry, angry at myself and the world, and it ruined most of my morning.

Before I became a mother, I thought the feeling of always wanting more was mainly due to the various discomforts that come with living with a disability. But the more I’m around two little people who are learning to process their emotions, the more I realize that I’m not that special. I want it all, but I can’t always have it, like everyone else.

Other essays in the Parenting from a Wheelchair series: