Duchenne affects my entire life, down to a DIY project

I’m a mom to seven children: Lexi, 23; Max, 18; Chance, 17; Rowen, 15; Charlie, 13; Mary, 10; and Callie, 2. As part of that job, I’m also a caregiver to Max, Rowen, and Charlie, who all have Duchenne muscular dystrophy (DMD).

Additionally, I’m a chronic DIYer (do-it-yourselfer). Yes, you read that correctly. Perhaps you’re thinking, what does that have to do with being a Duchenne caregiver?

I do-it-myself for many reasons, one being that I’m cheap. I’m good at thrifting and creating because I was poor as a child. Poverty made me resourceful, which is a significant prerequisite for being a mom of seven, including three with Duchenne.

But there’s another reason: Care for one person with DMD is expensive, and we’re living it times three. We cut back on spending because we’re making sure we can provide for their healthcare needs.

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DMD is not only costly, but having three users of power wheelchairs in my home and traveling with me has also required creativity. We can’t always buy what we need to accommodate our large family, so we try to create it.

That approach means we have thrifted furniture because it’s less bulky, making more room for wheelchairs to pass by. We have a table that sits higher so a power chair can fit under it. We’ve permanently attached threshold ramps on the deck and the pathways throughout our backyard so that our sons with DMD have complete access. It’s often meant coming up with plans and implementing them myself.

But last weekend, my DIY obsession may have caused more harm than help.

The steps to an injury

It started with caregiving. My husband, Jason, was getting Rowen dressed for the day. Rowen can no longer bear his weight, so we get him dressed in his bed, rolling him from side to side to pull up his pants. We’ve been doing it this way for months.

In all of that time, we’ve never raised Rowen’s hospital bed, even though its height can be adjusted manually. In the months since Rowen stopped standing, he hasn’t raised it, either. And he’s always been against us raising his bed. Rowen has an autism spectrum disorder, and bed height was a significant enough change to his world that he didn’t want us to do it. So we bend over the bed to help him.

Jason tweaked his back on such an occasion, when he was getting Rowen dressed. Afterward, he should’ve rested and babied his back a bit, but he didn’t. He and I have been at this caregiving a long time, and as we were both college athletes, we’re used to pushing through the pain.

After I’d stained a desk I won at an online auction for $1, Jason, with his strained back, and Chance moved it into the house. I think that’s because Jason was excited about a desk in our home office. He’s worked there since the COVID-19 pandemic, but has used a folding table because we didn’t want to spend money for a desk. But moving the desk indoors could’ve also been because I was excited to get my newest project into the house. And for that, I’m sorry.

At first, all seemed well; Jason and Chance got the desk downstairs to our basement and into the home office perfectly. As they pushed the desk flush against the wall, however, something happened to Jason’s back. He fell to his knees in pain.

Since then, he’s been out of commission as a caregiver. He’s been to physical therapy twice and is calling to schedule another appointment. He’s tried dry needling, which seems to be one of the few things that gives him relief.

Meanwhile, he couldn’t lift, transfer, or shower our sons for days. I’ve been doing most of it, with some help from Chance. Jason, thankfully, has started using the Hoyer lift to help.

It’s not been easy to go from two caregivers to one overnight. We’re finding our way through the challenge, praying that Jason will soon have some reprieve from his pain. But this week, his injured status felt like the cost of my DIY endeavors. I should’ve never allowed him to move furniture when he was sore.

Duchenne indeed affects every part of your life.

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.