Our family’s all-star football player also lives with Duchenne
Our only son without DMD is strongly connected with his brothers' lives
I’m a mother of seven and a caregiver to the three of my sons who have Duchenne muscular dystrophy (DMD). My oldest daughter, Lexi, 24, lives a few hours away with her husband. I live in rural Nebraska with my husband, Jason, and our six youngest children: Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3.
Of my four sons, Chance is the only one who doesn’t have DMD. Because he’s so close in age to his brothers, though, he’s still been enmeshed in their life stories and has lived every minute of Duchenne with them, albeit in his way.
Chance is a talented athlete. He won a total of nine varsity letters in football, basketball, and baseball in high school, where he also collected numerous conference and state accolades. He graduated last month and leaves for college in the fall; he’ll play baseball there, too.
All-stars for children with disabilities
A week ago, my family and I traveled to Kearney, Nebraska, to attend a banquet and then watch Chance play in an all-star football game. He’d spent the week in Kearney preparing for the game and forming relationships with the other young men selected to play. This particular all-star game, the Shrine Bowl of Nebraska, serves as a fundraiser for the Shriners Hospitals for Children, an organization that supports children with disabilities.
Going into the week of camp and the game, I knew that Chance, more than any other player, would understand that he wasn’t just having the chance to play football; he’d know the Shrine Bowl was more than a game. As the only boy without DMD in our family, Chance has always known it was a privilege to play a sport, and he didn’t waste any time jumping into a leadership role during his week away.
When we got there on Friday night, the coach had selected Chance to give a speech on behalf of the other players on his team. His speech was interrupted by applause at one point when he specifically talked about the children they were playing for. As his parents, Jason and I couldn’t have been more proud.
Many of Chance’s teammates approached my family to say that he’d told them all about us, and they made a point of shaking hands with Max, Rowen, and Charlie. The week at a football camp designed to help others made a lasting impact on those young men, and Chance, who shared his own story, was a part of that.
I’ve often thought about their experience. While Chance was at camp, Charlie, the only one of his brothers who still walks, had a hard fall; unable to stop himself, he landed on his face, which was bloodied. At first I thought he’d broken his nose, but he was OK; his legs just gave out on him.
I sent Chance a text letting him know. He didn’t say anything, but I wonder if that didn’t fuel him. He scored the first touchdown of the game on a 50-yard pass reception.
The motto at the heart of it
Just weeks ago, as I was helping Chance write an essay for a college scholarship opportunity, he chose the topic of strength. When he had me proofread it, I cried.
His essay detailed how he’d always dreamed of being an athlete. When he was a little boy, he looked up to the baseball and football players he’d watch on TV and thought they were the strongest people. That was until his brothers grew too weak to play with him anymore, or to be on any team with him. He even mentioned how hard it is for his brothers to brush their teeth. He then talked about how his brothers never give up, and that’s how he learned what strength is.
Chance had never verbalized that to me.
He’s now 6-foot-2 and weighs 210 pounds. He looks like the guys he used to watch on TV. He’s a phenomenal athlete, but the best part about him is that he has a servant’s heart. I worry, though, that the weight of Duchenne is too heavy.
When his brothers became too weak to play with Chance, Chance became their legs, carrying things for them. Eventually, he started to carry them. He’s as much of a caregiver as a brother.
The motto of the all-star football game was “Strong legs run that weak legs may walk.”
Two of Chance’s brothers will never walk again, and eventually all three, but that’s never stopped Chance from picking them up. I’m sure his heart during the all-star game was chanting its own motto: “He ain’t heavy, he’s my brother.”
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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