We just want to have fun!

After I was diagnosed, Mom was sent to a place called DuPage Easter Seals.  It was highly recommended to her, and is now one of the best early childhood therapy interventions places in the country. This was where Mom started to learn about my disability and it was overwhelming to her, as you can imagine.  

She wanted to give me every opportunity to improve, to become “normal,” so she had signed me up for physical and speech therapy by the time I was nine months old. My sessions lasted 45–60 minutes with a therapist, and there was always follow-up work to be done at home. My mom was faithful about following orders and doing these exercises—she spent hours with me every day, and even my tears and whining would not dissuade her. 

Mom also wanted my therapy to be a family affair. She taught my brothers and sisters everything she had learned from the therapists. She gave them specific instructions about how to handle me, how to sit me up, how to move my arms and legs. She corrected the kids when she saw them doing it wrong.

I don’t know how long this lasted, or how many times my mother had to yell at my siblings, but I do know that Jeff, my oldest brother, was at the breaking point. He had had big plans for his new little brother since the day I came home from the hospital—plans that involved sports and roughhousing and guy stuff. He was annoyed by the fact that I wasn’t living up to his dreams. Mom’s cautious protection and rigid handling rules only frustrated him more. 

Jeff, Pam, Scott, and Missy were trying their best to do whatever they could for their little brother, but this was a shock to them as well.  They didn’t want it to be a chore to play or take care of their brother, but it was starting to become just that.  

Finally, after one more corrective lecture, Jeff revolted. “Mom,” he said, “you do whatever you have to do with Chris. But I’m going to treat him how I want to because I don’t want him to grow up like a dork.”

From that point on, the therapy Mom was so insistent on was enhanced with Jeff’s creative ways of introducing me to life as a normal kid, a life that didn’t involve him being “careful” with me.

Now when the neighborhood kids came over to play football in the back yard, I played too. Jeff and Scott set me in the end zone, and the teams changed the rules to include me: if the football hit me, it was considered a catch! 

One afternoon, the game was tied, and my team had the ball. They were marching toward my end zone, getting closer to where I might be involved in a play. The other team knew they had to keep me covered—I had already been hit twice for touchdowns. So with my team at the five yard line, the defense placed a guy right in front of me, blocking any chance my brother Scott, the quarterback, had to hit me. For three plays we failed to score, so on fourth down everyone was desperate. The ball was snapped, the runners scattered, and coverage was tight. No one could get open! 

With no other choices, I decided to do something. I leaped off my stool and tackled the guy who had planted himself in front of me. Scott saw his opening and threw the ball my way, hitting me in the head for the winning touchdown! The other team called pass interference, but in the end everyone agreed that it was the only way I could get open, so the score counted. I felt like a hero.

My brothers found ways to include me in all the sports they played. In baseball, if I stopped the ball, you were out. Throughout the winters, my brothers and sisters would take turns strapping me securely on a sled and dragging me around. I think it was as much fun for them as it was for me when they pushed me down a steep hill and I made it all the way to the bottom without coming loose and rolling off.

1979 was a year of record-breaking snowfall in the Chicago area. In my own yard the snow was so deep that one Saturday afternoon my siblings were entertaining themselves by jumping off the second-story porch into the giant drifts next to the house. My parents were gone, and my Aunt Kay was watching us kids. I was thrilled and amazed to see, one by one, my brothers and sisters plunging into the snow. When my sister Pam turned to me and asked, “You wanna do it too?” my six-year-old heart jumped with joy. They bundled me up in as much winter clothing as they could find, and then Missy jumped into the snow drift, positioning herself as sort of a spotter. From the porch, Pam yelled to Missy, “Are you ready?” “Ready!” came the reply. And Pam tossed me over the ledge. It was exhilarating! Missy caught me before I sank too deep into the snow, but I felt like I got the full experience. And I don’t think my Aunt Kay ever knew about it!

That same winter, since we had two or three feet of snow, Pam once dug a hole in it, stuck me in, and buried me up to my waist. Then she went to get the camera to record how straight I was standing. 

In addition to outdoor games, we used to play sports in the house, too—football on our knees (I was able to get around on my knees), Nerf basketball, and, our all-time favorite, living-room hockey, which we only played whenever my parents left the house for the evening.

One night my parents were out, and my sisters were gone too, so just we three brothers were home. We moved all the furniture out of the living room and started to play hockey, me on a wheeled stool that I was able to maneuver around pretty deftly. Our next-door neighbor stopped by to see if we wanted to go to the arcade with him; he was meeting some of our other friends there. When he saw the hockey rink we had set up in the living room, he called the gang and told them, “Go ahead without us; we won’t be there!” 

The four of us played hockey for the next two hours as if a championship were on the line. As the game heated up, my brother Scott’s adrenaline kicked in. He wound up for a hard shot, and his stick hit the ceiling, leaving a definite dent in the tile. We all stopped and stared, but Scott’s adrenaline was not deflated in the least. Play continued, and the score was close, and by the end of the evening there were six or seven dents in the ceiling! We had no idea what we would tell my parents when they noticed. They did notice the next morning, but somehow nobody knew what happened to the ceiling.  They decided they were nail dents, and the games continued to go on.  

In my early days of hockey I was assigned the goalie position. But when I received my first power wheelchair, I found I could play offense as well! My brothers would Velcro a hockey stick to my left leg, and I used my right foot to power the chair around, line myself up with the tennis ball, wind up, and shoot. It wasn’t until I achieved this new level of play that I realized something: You don’t know how much you can do until you do it.

Think about it. My first involvement with sports was simply watching my brothers play. But then they found a way to let me do more. By propping me up in the end zone or the goal, they let me actually experience the game—the anticipation, the rough-and-tumble physical contact, the teamwork. I had never imagined myself actually playing football or hockey, and I was thrilled to simply be on the field, the target of their passes. It seemed like enough because it was more than I had ever known up to that point.

But then that first wheelchair helped me realize there’s even more. There’s more I can do, more ways I can contribute, more fun I can have.

For some of us reading this, we haven’t bought into this God/Jesus thing, so our circumstance becomes an excuse for why we can’t try new things.  It may be hard to do, so we just feel more comfortable not trying to do it.  Whether it’s our circumstances, or something else, something is holding us back.  

I fully believe that there is more for me—in sports and in life. I don’t know what it is yet, but I’m open to the idea. As good as my life is right now, I can’t help believing that it can be even better. New technologies become available all the time, and each one is a tool to help me be even more involved and connected.

I was a part of every game my sports-loving family played because they took the time to adapt rules, embrace technology, and include me. They helped me find a way to play. That philosophy has shaped my life.

When I was in seventh grade I came up with an idea to help other people find a way to play, as my family had done for me. At the time, the company providing my therapy had just bought an abandoned school building. It had a gym, so I talked with my therapist about using it for a new Wheelchair Soccer program. She and I presented the idea to the social worker at Easter Seals, and after a few meetings and some waiting, we got the approval. That abandoned gym hosted Wheelchair Soccer every other Friday night. We started out with six or seven participants, but as they began having fun, word spread, and by the time I went to college at least 25 wheelchair Pelés were finding a way to play.

Now, let me make clear that I fully understand that the discipline of therapy is important too. I do appreciate my mother’s faithfulness about bringing me to therapy and doing all that follow-up work at home. Forty-four years later, I am still seeing the same therapist who first began working with me, and I am blessed to count Rozalie, Kathy, Judy, Linda, Stacy, Celine, and many more as friends and professionals whom I truly love and respect. They have always treated me with care and pushed me beyond what I thought I could do.

But I’m also grateful that my brothers saw the need to balance all that care with some normal fun. 

“I don’t want Chris to grow up like a dork.” I am not sure if Jeff fully achieved this goal. I do have some dorkiness in me. But what if he had never said anything? Would I have turned out different? I often get asked, “When was the first time you noticed you were different from other children?” The answer is, “I don’t know.”

I consider myself fortunate to have been born into a family who didn’t treat me like a dork. If you are not that blessed, you will have to take it upon yourself to make sure you counteract your dork potential. You’ll have to find a way to get into the game.

It probably won’t be easy. It will take some creative thinking, some daring, and probably some special people who are willing to give you a chance. Some days you’ll succeed; some days you won’t. 

But keep trying. Find a way to play! Find a way to live life abundantly!  

2 thoughts on “We just want to have fun!

    1. They are incredible! I have had incredible therapists who have supported me all of these years! Let’s not forget that!

      Like

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