When siblings take a back seat to their brothers with Duchenne MD

I don’t want to miss a thing. Yes, as I typed that, I sang the Aerosmith song in my head. It’s the soundtrack to my husband Jason’s favorite movie, “Armageddon.” But more than that, as a special needs parent and caregiver, I find that the lyric plays out repeatedly in my life.

I have three sons with Duchenne muscular dystrophy (DMD): Max, 18; Rowen, 15; and Charlie, 13. Their diagnosis comes with a shortened life expectancy, and because I know that, I try to be there for each of them for everything.

I don’t work outside of the home, so I’m the parent who takes them to most of their doctor appointments. Jason and I also ensure one of us is at every extracurricular event. It doesn’t matter to us if they are on the stage in a play or sitting on the sidelines as a team manager, one of us is at everything.

And maybe that sounds understandable to you, even dedicated. But truthfully, it makes me feel guilty.

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What about the siblings?

I have four more children: Lexi, 22; Chance, 16; Mary, 9; and Callie, 2. All of them are healthy but very much living with DMD, just like their brothers.

We live in Nebraska, but next week, Max, Rowen, and Charlie must be in Denver, Monday through Friday, for a clinical trial.

My only son without DMD, Chance, is a good baseball player, and next week is the season opener for his high school team. Chance was voted captain as a junior. His team and coaches love him, and he loves them and baseball almost as much as he loves us.

I’m going to miss his first game.

I have legitimate excuses. The clinical trial is structured, and we had the dates in our calendar long before the baseball schedule was released. But that doesn’t make me feel any better.

Chance, in many ways, is a typical teenager. Although we’ve had several conversations in front of him about the logistics of taking his brothers to Denver next week, and it’s on the family calendar, he only just realized it would interfere with his first game.

I was sitting on the couch with him as he figured it out. Chance looked at me and said, “Mom, you’re gonna miss my first game?”

It was a dagger through the heart. His dad will be there, but I thought he already knew I would miss it.

Unfortunately, I regretted my response as soon as I said it: “Chance, a potentially life-preserving medication is more important than a baseball game.”

Ugh. Why did I say it that way?

Yes, the infusion is more important than a game. But it’s not more important than Chance. To Chance, baseball and his team are just about everything, and because of that, they’re important to me, too.

All seven of my children are my entire world. I love with everything I have to give.

But because Duchenne lives within three of my children, the other four don’t get as much of me. Max, Rowen, and Charlie need me more, so they get more.

Jason and I do try to even it out. For example, we’ve always made sure that if we’re going to do everything in our power to try and save or prolong life for Max, Rowen, and Charlie, then we would be just as committed to our other four children in whatever way we could. For Chance, that has been baseball, and we have traveled the country with him so he can go to camps and play in tournaments. We have invested in his love for the game in every way.

And yet, Duchenne takes priority when it comes down to baseball or the disease.

That is why I wanted to write about this situation. The siblings of those with DMD make sacrifices, too. It feels like they never get to come first, which is completely unfair yet often impossible to avoid. It hurts me that it hurts them. It’s bad enough that Duchenne harms Max, Rowen, and Charlie. It shouldn’t have to harm the siblings, but it does.

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.