How Duchenne Affects What Siblings Look for in a Partner

Most days, my husband, Jason, and I take our kids to school in the same van. It’s an excellent time to be with them before school, and I get a nice 10-minute date with Jason after dropping off Charlie, the last of the kids to exit.

I was especially excited to go on Tuesday because it was my birthday. I’m not the best at celebrating myself, so when the kids wished me a happy day, I joked about how old I am. That somehow morphed into jokes about who would take care of me when I was older and whether the kids would send me to a nursing home.

It was a fun conversation. At one point, Max, the oldest of my three sons with Duchenne muscular dystrophy (DMD), said casually, “I’ll just go live with Nick and Lexi when you get too old to take care of me.”

I was laughing, but the more I thought about his comment, the more I smiled.

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Lexi, my oldest child, is 21 and will graduate from college in May. Nick is her boyfriend. They’re not engaged yet, but we all know that, for a thousand reasons, he’s the one. Today, I want to write about how people like Lexi, who have siblings with rare, progressive, invasive, and fatal diseases, consider their siblings when choosing significant others.

Both Lexi and my 15-year-old, Chance (my only son born without DMD), have voiced that it’s hard to meet new people or join new teams because they inevitably have to talk about their brothers and explain DMD. Most people in our hometown have heard about our family and have a basic understanding of why the boys use wheelchairs and experience gait difficulties and lordosis, or an unusually curved neck or lower spine. Outside of our hometown, explanations can be challenging.

All of my children are protective of one another, but my healthy children are particularly protective of their three brothers with DMD. And because they know that not everyone will be accepting and supportive, they’re protective of their own hearts, too.

That brings me back to Nick and Lexi. I believe they’re a perfect match. His calm and quiet personality meshes with her outgoing and competitive nature. She draws him out, and he keeps her balanced. I love them together.

I pray for my children’s future spouses. I pray they know love, are cared for with kindness, and can love fully and faithfully when they finally meet my child. Nick is everything I ever prayed for for Lexi, and more.

Part of that is because he instantly connected with Lexi’s siblings — all six of them.

He had long hair when he met Lexi, and Charlie, my youngest son with DMD, would sit on his lap and play with it. Since then, Charlie has visited Nick’s farm and asked Nick to be his confirmation sponsor, and they regularly play a farm simulator game online together. I’m sure Rowen, my middle son with DMD, has run over Nick’s feet at least a dozen times with his wheelchair, and Max has no qualms about walking around in his underwear in front of him (which is a good thing, I guess, if he’s going to live with him someday!).

When Nick is with us, he helps out, pushing the boys’ chairs through snow banks and, one summer, helping me attach a threshold ramp to our back deck. It’s as though he’s been around kids with DMD his entire life, even though he hasn’t.

It makes me happy that Lexi has found someone who can support and love her and everyone in her life. Chance is currently dating a wonderful and accepting girl, too.

DMD can make most things difficult, including relationships, for people living with DMD, their caregivers, and their siblings. I know this sometimes makes my children stressed and sad. But the right people will see past Duchenne. I’m glad my daughter has found that, and I pray my other children do, too.

Note: Muscular Dystrophy News 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.