This time, new medical equipment is hard for me to accept

Our house is getting a new piece of medical equipment this week. That’s happened before, as we have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. Over the past decade, in fact, our house has been a landing zone for lots of equipment as we’ve adapted to their disease progression. But this time, I feel disappointment, grief, and a loss of hope.

Charlie is my youngest son, and I’ve been holding onto hope for his abilities. His brother Rowen fell and broke his leg when he was 11 years old. He never walked again and now uses a power wheelchair and home hospital bed. He could no longer get in and out of bed independently, and my husband and I wanted a bed we could raise and lower to help us with his care.

Rowen’s hospital bed was a good thing, and we appreciated the problems it alleviated. He couldn’t sit on the edge of his regular bed to help with transfers, nor could he roll himself to his side or adjust to get comfortable. With the hospital bed, however, he can lower it to assist with transfers, and the side rails allow him to pull himself to his side. He gained further independence because he can raise and lower the head and foot of the bed.

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Charlie’s experience has been more like Max’s. Max walked until he was 17 and got his hospital bed a year before he lost ambulation. Because Max was walking, he wanted to get in and out of bed independently, and a hospital bed allowed that to happen. When he lost ambulation, the hospital bed helped him in the same ways it helped Rowen. It, too, was a good thing.

Because Charlie is the youngest of three brothers with Duchenne, he’s been the third to experience these stages. He was the third of my sons to get a power wheelchair, for example. My sons with DMD have always used mobility assistance, whether a piggyback ride, stroller, or mobility scooter. Walking long distances has always been a struggle for them, so they’ve always needed some help.

Since Charlie was not using his power wheelchair full time — only when he was at school or somewhere else that required long walks — I had little trouble accepting it.

What the new addition means to me

But it’s different as we await this new piece of equipment: a third hospital bed for Charlie. It’s something Max and Rowen didn’t need until disease progression significantly affected their lives. Part of me had held out hope that Charlie wouldn’t need it so soon.

I’d hoped we had time because he’s the youngest and still walking. We’d tried so hard to buy him that time, to slow down the disease progression so that he’d have skills to save, like upper body strength, ambulation, and independent transfers, for when improved medications and combinations of therapies became available.

For years, we’ve traveled hundreds of miles to see the country’s top specialists. We’ve enrolled in multiple clinical trials and used newer therapy combinations. We’ve tried things that hadn’t existed until my sons’ generation of children living with DMD. We’d hoped to change the outcome for our sons.

I wanted to save Max’s and Charlie’s independent ambulation, even though Rowen had lost the ability. When Max stopped walking, I’d still hoped we could save Charlie’s ambulation. But now I see the signs. Charlie needs the hospital bed and wants to use his power wheelchair more and more. Charlie’s decline is happening just as Rowen’s upper body strength diminishes and Max can no longer stand during transfers.

All I see is loss, despite all we’ve done, despite the love we pour into them. Duchenne continues to win these small battles.

Charlie needing a hospital bed feels like defeat. Perhaps I was naive to hope we had enough time to keep Charlie walking. But the new bed symbolizes yet another loss my sons have endured. And with that, my hope has diminished. It feels like everything we’ve tried to stop still happens, regardless of what we do.

At this moment, everything feels hard. As we adjust to Charlie’s new bed, though, I know that rays of hope will return to our view in the following weeks.

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.