Finding a balance between fighting for healthcare and celebrating wins

Recently, our family had terrific reasons to celebrate. I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. They are doing things we never imagined they’d do when they were young.

Max, who recently graduated from high school, was in “The SpongeBob Musical” this spring. The cast was selected to perform in a showcase for Nebraska high school theater programs at the Orpheum, a famed theater in Omaha, on June 13. They were honored as both an outstanding ensemble and an outstanding musical theater production.

Our family was in the audience, tearfully and joyfully watching Max do what few with Duchenne have done. No word is big enough to capture the pride we were trying to hold in our hearts. And what we couldn’t hold was leaking from our eyes.

As Max experienced his last high school endeavor, we reflected on his four years of theater, which held more happy memories than I can count on my fingers and toes. Even when Max had a health setback, such as a broken bone, he was resilient and creative and never missed a curtain call. I’m so thankful for the experience.

As the common saying goes, “Don’t cry because it’s over. Smile because it happened.” There isn’t a more accurate way to express our emotions as Max wrapped up his high school acting career.

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We got home from Max’s performance after midnight, and Rowen started his first job the next morning. He’s working as a gatekeeper at the local softball complex. In last week’s column, I shared that I was nervous for him, but it turns out I didn’t need to be. Rowen had a great first day. He returned the following day for another shift and plans to work at a few more softball tournaments before summer ends.

Despite my trepidation, I was in happy tears when I dropped him off for his first day. Living with Duchenne could easily mean a life of limitations, but my sons don’t see it that way. They want to be typical teenagers. Life always looks different for them, but that doesn’t stop them. They don’t recognize DMD as an obstacle. As a friend said, “There are no obstacles, only hurdles renegotiated!”

We were flying high with so much to celebrate — milestones we were told the boys would never reach, experiences I had grieved at one point. But amid all the joy, my attention was diverted by the frustrating realities of managing DMD.

A difficult balance

Max told me he’d received an email about a benefit he qualifies for — one we spent weeks applying for. We logged into his account, only to find out that he’d been denied after a nonmedical review. It doesn’t make sense, and we will appeal. But the letter felt like a slap in the face.

After weeks of caregiving challenges, that was the final straw. Last month, it took me approximately 30 hours on the phone with insurance, the hospital, and a specialty pharmacy to get a medicine approved that the boys had been taking for years. I’m not usually rude, but I was so frustrated at one point that I hung up on the person I was talking with. We did eventually get the medicine, but the process drained me.

Then, last week, it was time to set up another refill. Max’s was approved, but not Rowen’s or Charlie’s. It turned into three days of phone calls — much less than the month before, but still exhausting.

When Max broke his leg last month, we had so much difficulty coordinating care between local doctors and our neuromuscular team. It took me two days to ensure we treated Max with best practices.

I’m so frustrated with a healthcare system that seems broken. The people who need the most help and benefits often get denied. Dealing with these issues requires a great deal of time and effort, but so much of my energy is already focused on caring for my sons and celebrating their successes. I end up feeling like I’m spinning out.

Throughout their lives, my sons have overcome progressively weakening muscles and medication side effects, and have endured clinical trials, medical travel, and so much more. That should be the hardest part of Duchenne — not fighting for benefits and insurance coverage. The paperwork is tedious and overwhelming, and the denials and hoops we jump through require a lot of us. The title of “caregiver” doesn’t seem to encompass all of that.

I’ll work hard to keep fighting and celebrating my sons, but finding balance is tricky. If you’re a caregiver dealing with the same challenges, you’re not alone, and I think you’re doing great.

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.