Learning to journey on in the face of disease progression with Duchenne
A columnist struggles to watch DMD progress more rapidly in her middle son
He’s getting weaker. That’s the thought that keeps me up at night.
Rowen, 14, the second of my three sons with Duchenne muscular dystrophy (DMD), is declining.
Rowen has always been the weakest of my three boys with DMD, and the disease has progressed faster for him than for his brothers.
I distinctly remember sitting in the neurologist’s office with my older son Max before the younger boys had been diagnosed with DMD. As the neurologist explained Duchenne, I thought of then 2-year-old Rowen at home with his grandparents, who were babysitting so we could take Max to the specialist.
As the neurologist discussed large calf muscles and difficulty walking upstairs, I was sad for Max. Of course, I was sad for my husband and me, too. But I was already scared that Rowen had Duchenne, too, because his calf muscles were more prominent than Max’s, and at 2 years old, Rowen couldn’t brush his teeth using the step stool in the bathroom. We always had to lift him.
The neurologist moved on to genetics and explained that if I was a carrier, all our sons would have a 50% chance of having Duchenne. Of course, I didn’t know if I was a carrier, but I was already sick because part of me knew Rowen also had it.
Once testing confirmed that three of our sons had DMD, it was evident that Rowen’s Duchenne was worse, already affecting him more, and it continued to progress faster.
Even before Rowen transitioned into a power chair, he needed his mobility scooter far more than the other boys. He could never walk as long or as far as his brothers, and his fatigue was always more significant.
My oldest son with DMD, Max, walked until he was 17. My younger son, Charlie, is still walking at age 12 and should continue for a couple more years, barring nothing traumatic.
‘I know what’s happening’
Rowen fell walking across the backyard and broke his leg when he was 11. He needed his chair almost full time after that. Using a wheelchair for more years than his brothers has unfortunately taken away many experiences that his brothers continue to enjoy.
However, for the last three years, Rowen had been taking steps in our house if he held on to my husband or me, even from the living room to his bedroom. But a couple of months ago, seemingly almost overnight, he asked us to bring him his chair; he didn’t feel strong enough to walk those distances. Although he wanted to continue standing to use the restroom, at some point in the last 30 days, it no longer was safe for him to do even that.
“I don’t know what’s happening, but my legs are weaker,” he remarked.
It broke my heart to tell him that it was because of Duchenne.
As a mother of three boys with DMD, I know what’s happening. I know they will get weaker and lose their abilities. But expecting it doesn’t make it any easier.
He’s still helping us transition him into and out of the shower and onto the toilet, but I know the strength that those things require is fleeting. Our house is ready for that, as we installed a ceiling lift system about a year ago, but Rowen has never wanted to use it. However, it may soon be a necessity. I’m glad we have the lift system ready, but we’re not used to it and will have to develop new routines to get him ready in the mornings and for bed at night, and help him with showering and toileting.
I know we will figure it out, but sometimes I don’t want to figure things out.
As he transitions to high school next fall, his peers are reaching new levels of independence, and it just seems so unfair for him to need us more.
These past few months of rapid decline have been heartbreaking for me and frustrating for Rowen. I can cry at night and write about it here, but he needs me, and I plan on being there for each stage of this difficult journey. So, as I’ve learned to do, I dry my eyes, take a deep breath, and journey on.
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