What success looks like for me as a DMD parent

Parenting is the most challenging job I’ve ever had. When my role as a parent expanded into caregiving for three of my children, challenging didn’t even begin to describe the path that lay in front of us.

I share seven children with my husband, Jason: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Max, Rowen, and Charlie are all living with Duchenne muscular dystrophy (DMD).

These days, my gray hair and need for bifocals have me feeling like an older mom, but once upon a time, Jason and I were young parents with a growing family. Like most young parents, we had our hands full trying to figure out how to meet the needs of our young children. However, I don’t remember feeling stressed or worried about the future. We laughed a lot and played with the kids, and although exhaustion crept up on us, I was happy and excited about whatever might come next.

I never thought that Duchenne would be a part of our future. When my sons were diagnosed with DMD, the wind left my body. My dreams for my sons’ future vanished, replaced with fear of the unknown and agony over the things my boys would have to endure while living with DMD.

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Somehow, perhaps by the grace of God, Jason and I found our footing as parents of young children facing the debilitating future that Duchenne offered. As we sat in a specialist’s office and learned what DMD would do to our beautiful boys, without even looking at each other, we both steeled ourselves, ready to battle for our sons’ lives.

We never talked about what we wanted to do; we knew we’d do whatever it took. As former college athletes, we were familiar with the work necessary to win. And as we started our journey with DMD, winning was just what we planned to do.

Redefining what success looks like for our family

Over the years, our definition of “winning” has changed. Early in our journey, it meant saving our children’s lives. Beating Duchenne was measured in the number of years our sons would live. But as time went on, we realized that winning was measured in smiles, love, adventures, and experiences. And at my last tally, we were still winning.

Jason and I have traveled the path of parenting sons with DMD. It’s required hard conversations about what Duchenne could do, the losses our children have endured because of the diagnosis, and our fears and hopes.

Our conversations always share certain themes: that life can be challenging but still good; that if we work together as a family, we can overcome anything; that God will provide, and we must look for the helpers he sends. We admit that our journey is difficult, but we’ve never allowed that to be an excuse to give up or try less.

Today, Jason and I are 15 years older than we were when our sons were diagnosed. That decade and a half has worn on us. I’m tired, and this year, as we’ve endured job changes, financial strain, changes in our sons’ abilities, and our recent setback of not having an accessible van available, I feel beat.

But when I’ve explained situations that sometimes felt dire to my children, they responded positively. They’ve said things like, “Everyone is helping out; it’ll be all right,” “Mom, it’s OK. Vertins can do this. We just have to stick together,” and “We’ve done harder things than this; we’ll be fine.”

I’ve been on the brink of tears for the past 12 months. Life has been challenging, and we’ve been tested. If it weren’t for my children’s willingness to find positivity, I might be wallowing in anxiety and fear. It feels like we’ve come full circle. The lessons we preached early in their lives are coming back to us.

Parenting when Duchenne is involved has always been difficult. We’ve had no guides or promises of success. But having our children know how to look for the good in a situation and feel confident that things will work out, even when life gets tough, tells me that Jason and I have done OK.

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.