How it feels to get recognition for my life as a caregiver

I’m no longer a young mom, but I was once. In fact, I was a very young first-time mom, as my oldest daughter, Lexi, 24, was born when I was 21 years old. Six more children followed: Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. The four boys were all born within five years of each other, all before my 31st birthday.

I was young and energetic then. I could carry a toddler and a car seat while keeping an eye on the other kids. It might have been tempting to stay home to keep them contained, but I kept my sanity during those years by taking advantage of the free day care that came with our membership at the local YMCA. It offered us two hours a day, so I often ran on the treadmill and took a shower while someone watched over those sweet kiddos of mine.

Life gradually changed, and the years passed quickly. By the time our little Callie joined the family, I was 41, and Max, Rowen, and Charlie had been diagnosed with Duchenne muscular dystrophy (DMD). The energy I once had to run for hours is now expended on caregiving. I spend the mornings getting my three sons up, out of bed, dressed, and into the bathroom, plus feeding all the children living at home. It feels like a hardcore workout I did a decade ago. I often wipe sweat from my brow and stop for a drink of water. It’s hard work.

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However, it’s not a workout, because it doesn’t stop. My sons with DMD depend on me for almost everything, and I often feel like I go nonstop until my husband, Jason, and I get them into bed. Jason can help in the evenings, when his workday is over.

I struggle to write the 700 words or so of this column each week because in the time it takes me to expel my thoughts through my fingertips and onto the keyboard, I might’ve stopped twice to help someone pee, once to refill a water bottle, and once to serve dinner to Max, who’s played video games in his room during the time I fed everyone else.

Caregiving is a way of life. Although it’s complex and demanding, especially with three children with special needs, I’d always choose it. I love to be the one who gets to care for Max, Rowen, and Charlie.

Someone who gets it

A recent experience made me grateful that someone else understands the demands of caregiving, as well as the love and dedication that go into it. Not everyone is meant to be a caregiver.

I went in for my annual physical, which these days feels like self-care. I’m 45 now, so it’s time for my first colonoscopy. My doctor and I also discussed other potential medical procedures that I don’t necessarily want to share in my column, but that would alleviate some pain I’m experiencing. My doctor was the one to ask me if that pain interfered with caring for the boys, and the honest answer was yes.

My doctor is aware that I’m a caregiver. He and I have children who attend the same school, and he understands Duchenne and its impact on me. As we discussed the colonoscopy and other possible procedures, he made sure to inform me exactly what the recovery time would be like. At one point in the discussion, he told me I’d be a less-than-perfect caregiver for only half a day. He made sure to steer me away from procedures that would lead to weeks of recovery.

That all might sound so simple. To me, however, it meant that someone outside my family could see me and what I do to care for our children, especially our sons with DMD. The doctor also recognized that I do it well.

I’m not often told that I do caregiving well. I take care of three teenage boys who are frustrated with their bodies, and I’m the one safe place where they let it out. My husband works full time, and when he comes home to help me care for our sons, he’s as exhausted as I am. I owe him gratitude as much as he owes me, and neither of us is great at giving it.

Therefore, to have an outside force recognize and speak of my successes, well, I’ve been walking with my head held a little higher. I’ve felt seen, as someone reminded me that I can’t take good care of my sons if I’m not well. I’ve scheduled all the appointments and procedures and feel a renewed sense of taking care of myself — so that I can take care of others.

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.