3 power wheelchairs are forcing the question — remodel or move?

I love my house and the home life my husband, Jason, and I have created. My family lives in a four-bedroom, two-bath, finished-basement, ranch-style home in south-central Nebraska. It was brand-new when we bought it, and we were its first owners.

Jason and I had been living in a small rental house with our daughter Lexi, now 24, when we moved into our new home. The furniture that had filled our rental barely furnished the main floor. The house was much bigger than what we needed. It was a home we could grow into.

We have welcomed six children since we moved in: Max, 20; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 4. As our family has grown from three to nine, furniture, home decor, and toys have all seemed to accompany each of the kids, and now the house is full, loud, and too small.

Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD). Max and Rowen use a power wheelchair full time. Recently, Charlie has been using his power chair more in the house. That change, having a third power wheelchair in the house, has us questioning if this house still meets our needs.

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Crowded out

We have worked to make the house accessible. We have a ceiling lift system in Max, Rowen, and Charlie’s bedrooms. There is a ramp to both the front and back doors, a chair lift to the basement, and a pool lift on the deck.

We have an accessible bathroom, and our sons each have the equipment they need: power wheelchairs, shower chairs, Hoyer lifts, and cough assist machines. However, the equipment is starting to take up more space than the people.

When our sons are in their wheelchairs in the living room, dining room, or kitchen, there’s little room left for furniture or for the rest of the family to move about. Jason and I get frustrated when we turn around and get blocked by one of the boys. The boys grow annoyed at our constantly asking them to move.

Max, Rowen, and Charlie often argue over who will park where when we watch a movie in the living room, or how to fit around the dining room table.

I think about what it would be like if the boys did not have DMD. They’d be driving to activities, hanging out with friends, and going to practices. They would hardly ever be home at the same time.

Max wouldn’t come home on weekends or in the summer from college; he’d be living with friends. Rowen and Charlie would be off to college in the next couple of years.

That is not my reality, however. We don’t know what Max, Rowen, and Charlie will do as adults, but I think there’s a good chance they will live — or often be at home — with Jason and me. With our two young daughters, we plan on having five kids and a lot of medical equipment in our home for the foreseeable future.

Remodel or move?

We don’t have to rush a decision, but the house feels crowded right now, even more so when we have caregivers over to help us care for our sons.

We are considering a remodel, potentially converting the garage into an additional bedroom so that all three of our sons with DMD have their own room, and expanding our kitchen, dining, and living areas. We are also considering a new house with more square footage, more bedrooms on the main floor, and an open floor plan.

We’re going to have a contractor come over soon to discuss the possibilities and costs with us. We also have a realtor keeping an eye out for homes that might suit us. Remodeling sounds like a lot, but moving from the only home our children have known tugs at my heartstrings.

This won’t be easy, but time has proven that we can accomplish difficult things. I am thankful we are in a position to do either. I know not everyone has an opportunity to make a significant change like this. There have been times in our lives when we couldn’t do this.

I plan to navigate this next phase of life with a grateful heart.

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.