In the dance of who does what with Duchenne, it’s OK to ask for help

“What can I do to help?”

It was my husband’s answer to the long rant I’d just finished. I didn’t know I needed an answer, but his caught my attention. Beyond the weight of my responsibilities, I was trying to carry myself — and the heft of that was crushing me.

Of my sons, three have Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. In the past few weeks, I’ve been overwhelmed with travel for their participation in a clinical trial; Max’s transition from high school to college; and applying for benefits relevant to Max, now that he’s considered an adult.

I’ve always been the secretary in our family. I’m in charge of appointments, correspondence with doctors, and coordination of benefits (except for insurance, which my husband, Jason, handles). I’m the one who talks with teachers, researches educational plans for our children, and attends most school meetings.

Only sometimes have we both known the dance steps to determine who does what for our sons living with Duchenne. In the early years, that process was rough. We each reacted our own way to the realization that our sons’ lives, and our lives, wouldn’t be anything like we’d imagined. I was mad at him for not doing it my way, and he was mad at me for not doing it his. But we’ve figured it out.

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As the boys have grown older, needing more assistance, Jason does the heavy lifting, helping with showers and trips to the bathroom. He’s also been the social parent who goes with the boys to events and makes friends with other parents. He’s available to help the boys with whatever they need while managing the financial side of their care and all our lives.

However, the boys’ physical needs have grown; therefore, Jason’s responsibilities have also grown, as has the paperwork. I’ve been spending hours on the phone each month to order one of the boys’ specialty medications. Meanwhile, Max has a lot of paperwork to complete before his first semester of college, which requires a lot of support from me. Meanwhile, I’m also trying to get Max an adult benefit to help support him through college.

When Jason asked if he could help me, I’d just learned that Max was denied the benefit — even though, because of his diagnosis, he should’ve been granted it as a compassionate allowance. That set me off. I was mad and walked out the back door to our deck, listing everything I’d been trying to do and talking about how defeated I felt.

I wasn’t pointing blame or asking for help; I just needed to vent.

But my husband offered to help, and that was what I needed to hear. I said yes and asked him to handle several phone calls for me.

At that moment, I did feel better. But I was still losing sleep over Max being denied the benefit. I so badly wanted to set things up to make a lifelong impact on his quality of life, getting him a source of income that would allow him independence. I felt that I’d failed.

Remembering how much Jason’s help improved my frustration, I decided to find more help. After a few inquiries, I found a Duchenne mom from Nebraska who had much experience with what I was experiencing. She called me and walked me through an appeal.

I finished the the appeal request several days ago and have been sleeping better since.

I get caught up in this race against Duchenne and think of it like a track meet. I’m in my lane running against family and friends in another lane. But I know it’s not like that. We’re not running against one another, but together. We’re a team and can lean on and help one another.

I’m thankful that during this challenging time, I’m reminded that it’s OK to ask for help — and to benefit from it.

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.