How a son’s MRI stirred up fields of dreams and hopes
While consumed by DMD, we want all our children to feel our support
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This week, one of my boys had to get an MRI. Three of my four sons — Max, 18, Rowen, 15, and Charlie, 13 — are living with Duchenne muscular dystrophy (DMD), and they’ve had annual MRIs for the past 14 years (well, fewer for Charlie). Sometimes they’ve had more than one a year because of their participation in research and clinical trials.
This time, though, the MRI was for Chance, who’s 17 and my only son without DMD. He’s an athlete, and he hurt his shoulder during his summer baseball season. This single event has made me stop and think.
Chance dreams of playing college baseball, so being sidelined with an injury devastated him. It happened at a baseball tournament that my husband, Jason, was able to attend. Chance was sore when he was pitching and then, in another game, felt a sharp burning pain through his shoulder when he threw in a ball from the outfield. Being a great sports dad, my husband knew something was wrong just by watching him. He talked with doctors, who had an MRI ordered and scheduled by the time they were home from the tournament.
Chance told his brothers about his shoulder and his MRI. He was upset and frustrated about needing his third such scan, all because of sports. Charlie showed no sympathy, saying something along the lines of, “Chance, I’ve had like 20 MRIs.”
At first, that made me chuckle. The boys were teasing their brother about his MRI, a big deal to him but common for the others.
But then it hit me that even if Chance hasn’t had as many MRIs as his brothers, I understand why he finds the experience scary or nerve-racking: His results could have a life-altering impact. Depending on the injury, a surgical repair could take months of recovery, causing him to miss his senior year seasons of high school football and baseball.
Fields of dreams for all our kids
Duchenne is important to us, and rightfully so. In fact, it’s often all-consuming in my life as a caregiver to three sons with DMD as well as the awareness work I do in the community as a weekly columnist who shares her family’s story.
However, Duchenne is not all that’s important. Chance is important. Baseball is important to me and our family because it’s important to him. I never want him to feel that what’s going on in his life is not as significant as Duchenne. Still, I know it might come across that way sometimes, such as when his brothers were teasing him.
Early after we learned three of our children had Duchenne, we decided we’d do whatever it took to get them the best treatment. We’d do things that had never been done, all in hopes of changing Duchenne’s outcome.
But we also decided to give just as much of ourselves and as many opportunities to our other children. We wanted all of them to know we’d do whatever we could for them.
That’s why we’ve made substantial sacrifices for Chance to chase his dream of playing high-level baseball in college. He’s played travel baseball nationally for two summers. From our home base in Nebraska, Chance and his dad have traveled to tournaments in Iowa and Missouri. He would’ve made it to Tennessee if he hadn’t hurt his arm this season. In the recent winter months, Chance and his dad went to college prospect camps in Kansas, Oklahoma, and West Virginia.
It’s a financial strain for us, and it’s been hard on Chance to be away from home, missing football team workouts, his friends, and his free time. Jason has had to work between games from his laptop in the hotel, baseball stadiums, and the van. But for me, as a caregiver to teenage boys with Duchenne, the most significant sacrifice has been to do that duty solo, without my husband, for weeks at a time.
But I would do it again. It’s worth watching Chance pursue his dreams. Duchenne has taken so much from our family. My dreams have revolved around my children’s health. In the early years, I thought I’d save the boys from losing their ambulation. After they lost that, I set out to save their upper-body strength. So far, Duchenne and time have combined to defeat me.
But the years as a mom and caregiver in the battle against DMD have steeled my determination. Duchenne won’t take our dreams. If we lose those, our hope might be the next to go. And that will not do.
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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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