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GLASA works: A mother’s story of her son, who has spina bifida

Jennifer Burkhart sEthan (front).

Jennifer Burkhart and son Ethan (front).

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Updated: March 1, 2013 7:08AM

Last Saturday, my oldest son, Ethan, took first place in his division of the Great Lakes Adaptive Sports Association fifth annual Run, Rock, & Roll 5K. He’s been carrying around his medal ever since. Ethan wrote the following in his classroom blog. (SIC)

“Yesterday i was in the lake forest (5k) twilight shuffle and there was over 1528 people in the race. There were lots of people like me in the race and since those people can’t walk they raced in hand bikes and i raced on my bike. There were also people that can walk so they ran but insted of us all going together they let the kids on the bikes go first because there are different divions. One divion was the able body divion and the other was the males hand cycling para divion wich was the one that i was in. And since that was my first race i have ever been in i did got really tired but i pushed though it and finished and sirprisingly won first place in the males hand cycling para divion!!!!”

Well, that just about sums it up. I don’t think it could get any better than that for him. Well, it just may …but for now we’ll take it. The funny thing about this situation was that up until two hours before the race began, Ethan DID NOT want to do the race. Only my middle son, Aiden, and I were signed up to complete the 5k.

Earlier that day, I had gone to pick up the race packets in order to be prepared ahead of time.

While in line, I overheard another woman ahead of me discussing her children and how they would be using bikes in the race. I couldn’t help myself and had to interrupt their conversation … “Excuse me, are individuals with disabilities allowed to use a regular bike in the race?” They both turned to me and one of the women asked, “What kind of bike?”

I continued, “My son has a trike that he uses because he has Spina Bifida. He is very capable and rides all over our neighborhood on his own.” I was justifying his ability and reasoning ahead of time why I thought he SHOULD be allowed to be in the race. “Well, of course!” She replied enthusiastically. “Sign him up!” and she immediately flung a registration form at me and began typing in his information into her laptop computer.

Just as I was finished signing up Ethan, I turned around to walk to my car when a familiar face spun around the parking lot in a three wheeled motor scooter. Tom, one of Ethan’s sled hockey teammates, stopped in front of me and belted out amongst the sound of motors churning, “Hey, where’s Ethan?” “He will be here tonight and I just signed him up for the race!” I belted back. “Good, tell him I asked!” he ended as he spun away.

All the way home, I kept thinking of how much fun we were going to have and how much I knew Ethan was not going to want to do the race. When I returned, Ethan was standing outside in the driveway. I got out of my car, took the race packet over to him, and plopped it down in front of him.

“You are number 1528.” I said without a flinch. I was attempting to act like I knew he would want to be in the race even though I could feel deep in my bones that he was going to reject the idea.

He looked at me with an unmistakable angry surprise and asked, “You signed me up for the race? I told you I didn’t want to do the race and you signed me up? Mom, I’m not doing the race. I don’t want to do the race. I just want to watch.” I then attempted to explain to him that this race was for people just like him and that I had signed him up because I had seen Tom and he said that you should do it.

Ethan continued to do some more freaking out about the event and some more restating that he was not doing it. He even went to his room to be alone and to remain angry.

Finally, at the last minute, I felt the guidance to go and speak with him about the race. I knocked on his bedroom door and asked to come in, he let me inside. I didn’t say anything. Instead, I sat down and listened. He told me how he was still not going to do the race and how he was angry and very mad at me for signing him up. He told me he wanted to watch it this year and then maybe do it next year.

When I thought he was done, I spoke … I told him that I understood, I was sorry that he felt this way, I know he would do a great job, and that he should still at least come to watch. At this point I realized it was time to ‘let go.’ When I went to leave the room and walk downstairs I heard, “Mom?” coming from his room. “Yes, hunny?” I replied as I ran back up the steps and stood at his bedroom door. He looked at me with a smirk, “I’ll do it.”

My heart sprang up and before I could leap across the room and hug him I controlled myself so that he wouldn’t change his mind, “Really, are you sure?” “Yes”, he said smiling. I made a thrusting motion with my left arm and fist and said, “Yes!” He went to get ready to go and I finished getting the rest of our family ready.

From that moment on he was committed and excited. With only moments to spare we rushed off to the race. We arrived on schedule and had plenty of time to spend mingling with friends he knew from sled hockey and other sports Ethan has done in the past.

The whistle blew and all of the bikers took off! Ethan took off like a bottle rocket. He left me and his little brother in the dust. I was concerned about him fatiguing or needing help during the course but these were worries that needed no attention.

Instead of helping Ethan, I ended up hanging in the back and running with Aiden while at the same time assisting some of the hand cyclists along the way.

As it turns out, Ethan had so much fun that he immediately announced to me at the end, “I’m doing this again next year.” We had no idea that Ethan would win first place in his division on top of all his hard work.

At the GLASA 5k, there were kids and adults just like Ethan everywhere. Even more exciting was that we were all competing together with able and disable bodied people. This got me thinking … who’s the one with the disability?

The guy on the hand cycle that has limited use of his legs who goes all out, is having fun, and believes that he can do anything?

Or is it the guy with two perfectly good legs who is worried about wearing the right aerodynamic clothes, worried about being situated in the front of the pack, and worried about navigating himself perfectly so that he can be in first place? Who is the one who is having fun? Who is the one living in the moment, living in joy? There is much to learn from these kids that are more able bodied than most of us typical humans.

They truly live in the moment. They are not worried about what other people think. They are out to live life without restraints. Their bodies may not work clock work like ours but that does not keep them from pressing forward and pressing on in life. It just gives them a reason to keep on going, keep on doing, and keep on being. That’s how I want to live.

Thanks Ethan for showing me how. Love, Mom

Jennifer Burkhart is a volunteer worker for the GLASA. This was part of her blog on this very special occasion.

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