Spending more time with my Duchenne MD kids is bittersweet

The diagnosis of Duchenne muscular dystrophy (DMD) for my sons Max, 17, Rowen, 14, and Charlie, 12, left me with layers of emotions that continue to make their way to the surface more than a decade later.

I recently saw a post on a parenting social media page that mentioned how most of the time we spend with our children happens before they turn 12. The post was designed to get parents to put down their phones and be more present with their kids.

As a mom of seven children, four of whom don’t have DMD, I saw some truth in the post. My daughter Lexi, 22, and son Chance, 16, were busy with travel sports teams, practices, and social life by the time they were 12. After that, I spent most of my time with them in the car. But once they turned 16 and were able to drive themselves, that time disappeared, and we mostly caught up during dinner. Often it was just Lexi, Chance, my husband, Jason, and me, as the other kids had already gone to bed.

However, while the social media post held true for some aspects of my parenting journey, it didn’t reflect my experience with my sons with Duchenne.

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The extra time brings conflicting feelings

I first thought that getting to spend so much time with my Duchenne sons during their teenage years and beyond would be a silver lining of the disease. I miss spending time with Lexi and Chance and would love more opportunities to be with them.

I have many reasons to still spend time with Max, Rowen, and Charlie. First, they don’t drive. It’s possible for guys with Duchenne, and I hope we can make it happen for them one day, but for now, I’m their ride — that is, if they have somewhere to go.

Max, who will start his senior year of high school soon, is involved in several extracurricular activities, and I’ll drive him to and from school as often as necessary. I’m thankful for all that time. Rowen, who will start high school this year, hasn’t gotten as involved and often stays home due to the social isolation of DMD. And Charlie, although involved in middle school band, is also home a lot.

In addition, they often need my help with tasks such as using the restroom. I usually accompany them to appointments and procedures because I’m their primary caregiver.

I love spending time with Max, Rowen, and Charlie. The reality is that I might outlive them, so I want to absorb each moment and make it last forever. Nevertheless, I often wonder how much time they want to spend with Mom.

Today was a perfect example. Lexi is off living her life as a recent college graduate, and Chance spent time with his girlfriend before a baseball workout and then football practice. My 8-year-old, Mary, was invited to the water park and then a sleepover.

The three boys with Duchenne were home and bored. I know they would’ve loved to spend that time with friends, a girlfriend, or a team of guys. Instead, they got me.

Navigating the layers

Going a layer deeper, I know it’s natural for children to grow up and have their own lives, and I want that for all seven of my kids. Jason and I are pursuing every possible avenue to make it happen for our sons with DMD, but we know that their care will likely cause us to give up much of our golden years — that one-on-one time many couples enjoy after their children have all reached adulthood and gained independence.

I’ve learned on this journey that I can’t worry about every layer all the time. Although I can’t change these layers, it’s important to let myself feel them.

So today, when the boys needed a place to go, we loaded up the van and drove. Mariachi was playing on the radio, and even though we don’t usually listen to that, I blared the music. Max sang along as best he could, and the rest of us laughed. When we changed the station and heard winners being announced for some on-air competition, Charlie screamed “Yes!” like he’d just won. That memory is now ingrained in my heart.

I’m grateful for every moment I spend with my boys.

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.