Playing Hide and Seek as an Uncle in a Wheelchair

“…28, 29, 30.” Ready or not, here I come! My niece yells as I hurry to shut the door to the laundry room in my brother’s suburban Chico, CA home.

Hiding spots are limited when playing Hide and Seek in a wheelchair.

Both my niece and nephew were apprehensive about Uncle Kyle for several years. Much of this is because I live 3,000 miles away and most of our interaction has been over Facetime, but some of it has to do with the fact that at age 36, it takes Uncle Kyle several minutes to get up off the living room floor to rush outside when the activity changes. Uncle Kyle can’t run, or catch a ball, or make his way across the grass without someone to tilt his wheelchair onto the back wheels and move him like a load of merchandise in a warehouse.

Whenever I arrive at my brother’s place, after my awkward flop into my chair out of the car, I roll up, lean in for a hug and they both cling for dear life to Daddy or Mommy’s legs. I always try to give them space and allow them to warm up on their own time. When I near the end of a visit, I wonder what I could have done differently to win their approval or get closer with the limited time I have.

This Christmas things changed.

I am the director of a bike ride fundraiser called rideATAXIA. It started as a close family effort as we attempted to take back some of the control that Friedreich’s ataxia (FA) had taken over our lives. Now as a program of the Friedreich’s Ataxia Research Alliance (FARA), we have six locations across the country, welcoming over 2,000 people who raise over $1 million for FA research annually.

A few years ago, before my nephew was born, my niece Aubrey saw me on stage with a microphone in my hand announcing the top fundraisers at a rideATAXIA event. The crowd of 300 cheered as I announced the awesome fundraising accomplishments and some people even politely laughed at my jokes.

When I came down the ramp off the stage, Aubrey was the first one to greet me. She ran up and gave me a big hug, then jumped into my lap to take a selfie.

After that, things were different between us. One of our favorite things is to time each other on laps around the kitchen in the wheelchair. She is quite competitive and wins every time.

With my nephew it took a little more time to find common ground. Like many little boys, Keller can’t get enough trucks and tractors. So I gave him his gift on Christmas eve, before he was distracted by any of the other gifts. It was a John Deere tractor/flashlight. We spent an hour rolling it back and forth in his room with the lights turned off.

We followed this game with a few rounds of “I’m gonna get you!” I would make a slow and awkward move toward him with a growl. He would scream, laugh and run into the living room where he would wait for me to slowly wheel down the hall. While he giggled with anticipation, my brother asked: “What are you doing?” Catching his breath he replied: “Uncle Kyle is getting me!”

Disability threatens to increase the distance between us and our loved ones, especially children who may have a limited understanding. Most of the time they don’t even recognize the concept of disability unless we point it out.

When we put our self-image aside and tune into the nuances of the relationship, we can make the effort to meet those we love on their own terms with a healthy dose of humility.

Remember it’s not about us. Put the focus on them and realize the wheelchair doesn’t matter as long as you can make them laugh.

Later in the trip we went for a bike ride, and Aubrey was surprised when Uncle Kyle didn’t let her win the race back to the house. Uncle Kyle needs to win sometimes too!