Finding balance while parenting children with DMD can be tricky

Here in the Midwest, June brings warmer temperatures. I live in Nebraska, where warmer weather is welcome after bitterly cold winters and brisk, windy springs. It’s also necessary for the crops growing in the large fields that line most of the highways.

I wait all spring for the temperature to rise above 90 degrees. I love the heat and spend hours outdoors in the garden, in our backyard pool, and at baseball and softball games.

My husband and I bought the pool in 2020, during the COVID-19 pandemic, because I couldn’t imagine a summer without swimming. As a child, I grew up at the pool, and as a mom, I’d spend hours every week at the local water park with my oldest children.

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Not only do I love the water, but buoyancy also makes water play particularly enjoyable for my sons who have Duchenne muscular dystrophy (DMD). I have seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. Max, Rowen, and Charlie have DMD.

We designed our above-ground pool with Max, Rowen, and Charlie in mind. It’s only 48 inches tall so that the boys can reach the bottom. We built a deck that connects our house with the pool so that they can walk or roll right up to it in their wheelchairs. We installed a pool lift to help them get in and out, and this year, we installed steps to sit on while resting in the cool water instead of on a hot deck.

We love our pool, which has given us countless family memories over the years. My husband and I agree that we’ll always have a pool. However, the water park is also lots of fun. But our youngest two girls haven’t been able to experience it much because it’s increasingly difficult for Max, Rowen, and Charlie to use it. So I avoided it, knowing that it’d be hard for the boys.

Part of me feels that was a mistake because I’ve deprived our younger girls of the experience. It’s something I struggle with as a parent. The water park is one example, but it also happens in bigger situations.

The choices I face

For example, our daughter Lexi was married last August, and as part of the wedding preparations, I had to meet up with her to pick out my dress. The night before that, Max fell and broke his leg. I nearly canceled my plans with Lexi but didn’t, and as a result, I showed up after a sleepless night and cried to her. I eventually found my dress, but I was a hot mess on a special occasion with just the two of us before her wedding.

Another example happened last April, when we left Chance home alone over Easter and missed an entire week of his senior baseball season to go on Charlie’s Make-A-Wish trip.

Both of these examples are extreme. How could I not be upset after Max broke his leg? How could I miss Charlie’s Make-A-Wish trip for baseball games? Nevertheless, I felt guilty both times and wanted a do-over.

People often think I’m a supermom because I have a large family with significant needs. But I wish I had the superpower of being in multiple places at the same time, catering to of my children’s needs, big or small.

I’m not a supermom. I’m just a regular mom trying to figure everything out as I go, on this journey that doesn’t come with a guidebook. Some situations require me to put the needs of my sons with Duchenne first. Other situations don’t.

Given all of this, I ended up buying a waterpark pass for Callie and Mary. We now go a couple times a week for a couple of hours. The other days we swim at home with the boys. The girls have fun in the wave pool and the lazy river, and they like the funnel cakes from the concession stand. Most importantly, they’re making memories with me, just like my older kids did.

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.