Wheelchair accessible home renovations are an ongoing project

While the boys are away, it’s time to play! Well, not exactly.

My three sons with Duchenne muscular dystrophy (DMD) — Max, 17, Rowen, 14, and Charlie, 12 — are away this week at Muscular Dystrophy Association Summer Camp. But instead of rest, my husband and I are doing some wheelchair accessible home renovations.

When we found out the boys had DMD, our house was not equipped for what that entailed. For the last 10 years, we have slowly but steadily made our house the home the boys needed it to be. We live in a five-bedroom, two-bathroom, ranch-style home with two additional bedrooms and a bathroom in the basement.

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My husband works from home and has a makeshift office in the basement. I do all my writing and advocating from a small desk in my bedroom. As a family of nine, we need every inch of our home.

When I was pregnant with Charlie, our sons Max, Rowen, and Chance (who doesn’t have DMD), shared a room in the basement. We moved them downstairs to make room for a nursery on the main floor.

I vividly remember the neurologist who diagnosed Max telling us how hard stairs were for boys with DMD. Our first step toward making our house what the boys needed was moving them back upstairs.

That was followed by installing a chairlift in the basement, because when the boys were little, they went up and down the stairs to use a play area. Then we put a ramp in the front of the house. The following year, we installed an accessible bathroom, glue-down laminate flooring in the bathroom and bedrooms, and wider bedroom doors.

Next we installed a ceiling lift system to move Max, Rowen, and Charlie around their bedrooms and the bathroom. And last summer, we installed a pool lift on our deck to get the boys in and out of our above-ground pool so they can stay as active as possible during warm months.

These things are all expensive. And that’s in addition to the out-of-pocket expenses related to DMD, such as supplements, appointments with specialists, durable medical equipment, and more.

We had to be patient and plan. We’ve been fortunate to have a supportive family that plans fundraisers to allow us to purchase and install things we otherwise wouldn’t be able to afford. Still, it’s taken a decade to get our house where we want it to be.

Our current project

Something always needs to be fixed. Having two power chairs in the house is hard on it. We still had floating cork flooring in the living room, dining room, and kitchen. The weight of the power chairs was too much for it, and it began to shift, creating large cracks in the flooring. Also, Max went off his feet earlier this year and started using his chair in the house, so we no longer have enough room for our sectional couch.

So this week, while the boys were away, we tore out the old floor and replaced it with more glue-down laminate flooring, which withstands the power chairs much better. We also replaced our sectional couch with a smaller sofa to have more space in the living room for the boys to drive and park.

I feel petty saying this, but one difficult thing about DMD is the challenge of having an aesthetically pleasing home while also making it functional for our needs. We no longer need dining room chairs for Max and Rowen, but that means the table only looks right when we’re sitting at it. I also prefer a cozy home with extra blankets and pillows, but we’ve had to design one with less furniture and more space.

In the end, though, our house is a home that needs to feel that way for everyone. I want it to be the most comfortable place for the boys, so I accept the challenge and find a way to make minimalism feel cozy.

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.