Finding beauty in how Duchenne has shaped our lives

The last few days have been spectacular for the Vertin family

by Betty Vertin | August 2, 2024

Duchenne muscular dystrophy (DMD) touches every part of my family’s life. Jason, my husband of 23 years, and I have seven children. Three of them — Max, 18, Rowen, 15, and Charlie, 13 — live with DMD.

We’re now in the middle of what could be one of the most exciting periods of our family’s life. Our three oldest children are in the process of making important decisions and life-changing moves.

Chance, our 17-year-old baseball-loving son, committed to playing in college after a successful campus visit on July 25. Our daughter, Lexi, 23 — our firstborn — is marrying the love of her life on Aug. 3. Max, our oldest son and the first member of the family with Duchenne to go to college, moves into his dorm on Aug. 10.

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All of this is a little hard on my heart as a mom, but the goal of raising children is to prepare them to live on their own and find their way in the world. I’ve shed tears and had a few bouts of anxiety in anticipation of all the changes going on in our family, but I’ve mainly focused on the joy I’m experiencing watching my children take flight.

In much the same way, as I see Duchenne’s imprint on the decisions being made for both the wedding and for college, I’m embracing the beauty it brings into view.

A grand slam

Having three sons with Duchenne entails considerable challenges. Their power wheelchairs occupy a lot of space, and we often have trouble finding somewhere to sit at restaurants, churches, and elsewhere. Cutouts or areas intended for wheelchair users rarely leave space for three wheelchairs, so we’re usually staggered about and often stick out into the aisles. In restaurants, we use spaces intended for servers or other patrons.

I could list additional difficulties, but space alone is an obstacle we must solve every time we leave the house as a family.

The challenges are the same for Lexi’s wedding. Our four boys are ushers, and I can’t wait to see them interact with the wedding guests, whom they’ll walk or roll to their seats. It’ll be fantastic to see the awareness they’ll bring to topics like wheelchairs and Duchenne for guests who don’t know our story.

I’m focusing on that part, not wondering where the boys’ power chairs will fit so that they can sit with the rest of the family during the ceremony. Nor am I dwelling on the fact that the accessible entrance for the reception is a loading area, not the front doors. Things will never be perfect with DMD (or life in general), but they can be beautiful, which is exactly what the boys will be in their stylish black suits.

It was the same during Chance’s college visit. Jason and I wanted to be there because we felt he’d pick that school. We didn’t have someone to stay with the other boys, so we took them along. I was worried it’d be too overwhelming for the coaching staff and might diminish Chance’s experience that day.

Instead, it was something I’ll never forget. The staff from the baseball program made us feel like our entire family was being given the opportunity to play college baseball. In a locker room large enough for all of us to fit, they offered Chance a scholarship.

Then they took us to the indoor baseball facilities, where the boys used their power chairs to test the strength of the turf while racing through the building. The coaches treated Chance’s brothers as if they were prospects on campus, too. They made the boys feel welcome. As a result, that school earned a few new fans that week.

If Max, Rowen, and Charlie hadn’t come along, I know we wouldn’t have seen the true spirit of the coaching staff, particularly their heart and compassion. I now know that when Chance arrives on campus, he’ll have coaches who care about him and who’ll help him develop into a better baseball player and man. That was the beauty that Duchenne allowed us to experience.

As with the stained-glass windows that adorn the cathedral where our daughter will be married, you can choose to see the lines of the metal frame that holds the glass together or the picture that the pieces create with all of the parts. I prefer to see the beauty that the pieces of our family create to form a whole.

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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About the Author

Betty Vertin Betty Vertin is a mother and writer living in rural Hastings, Nebraska, with her husband and seven children. Betty is a caregiver to three sons, Max, Rowen, and Charlie. Her oldest was diagnosed with Duchenne muscular dystrophy in 2010 at 4 years old. The other boys were diagnosed with the same in the following year. Although Duchenne occasionally crashes the party, it has not kept her large family from celebrating and enjoying life. She writes her column in hopes of sharing her family’s experiences with others on a similar journey.