What We’ve Learned About Marriage as DMD Parents

My marriage is one of the most important things in my life. Shortly after my sons were diagnosed with Duchenne muscular dystrophy (DMD), I heard a staggering statistic about the divorce rate among DMD parents. Issues like financial strain, stress, exhaustion, depression, and grief can create problems in the healthiest of marriages.

My husband, Jason, and I got married in our early 20s. We were barely 30 when our boys were diagnosed. Everything we learned about DMD scared us. We were frightened not only at the thought of losing the boys, but also of losing each other.

We promised each other early on that we wouldn’t let our marriage be a casualty of Duchenne. It hasn’t been easy, and we’ve been through ups, downs, and times we didn’t agree or even like each other very much, but we’ve remained committed to loving each other and making our marriage last.

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Following are some of the lessons that have helped us get through the tough times and enjoy the good ones.

1. Everyone copes differently

After the diagnosis, I was a mess, just beside myself with sadness and grief. I thought my husband should have reacted the same way, and when he didn’t, I thought he didn’t care as much as I did. This assumption wasn’t good for our marriage.

I finally realized that people respond differently to things. This doesn’t mean they don’t care or feel as deeply, they may simply be processing and responding to an event in their own way.

I eventually learned that my husband was having an equally hard time coping with the diagnosis and seeing me hurting because of it. Jason was hurting just as much, if not more, than I was.

2. It’s easier to go at it together

This includes taking care of our boys, understanding Duchenne, attending appointments, and managing prescriptions and individualized education programs.

I’ve never done it alone, but I can’t imagine how difficult caregiving would be without my husband as my partner. Our experiences remind us to give each other the benefit of the doubt, and to be forgiving and kind, even when we’re tired and burnt out. We recognize and appreciate how much the other does.

3. We carve out time for each other

Duchenne can be all-consuming, but our marriage needs its own time and space. We don’t have much help in the evenings, so dinner dates are hard. But we can plan lunch dates while the kids are in school, and we have dates after the kids go to bed. Lately, we’ve been recording new episodes of “Yellowstone” so we can watch and talk about each episode late on Sunday nights.

We’ve also found that intimacy is necessary. We recently welcomed our seventh child into the world, so I feel like we understand that part of it.

4. We’re best friends

I tell my children every day that when the time comes for them to get married, they should marry their best friend. It is so helpful to have someone with whom we can laugh, joke, and share all-knowing smiles when a son does something that pulls on our heartstrings. We give each other a shoulder to lean or cry on.

5. We show love through caregiving

Caregiving is hard work, but it can create a special bond between two people caring for their own flesh and blood. Providing care for our children together is a pure form of love. We recognize that not every couple will share this responsibility and love, and we cherish what we have.

Marriage is hard, and so is Duchenne. No marriage is perfect, mine included, but making our relationship a priority strengthens it. When our marriage is healthy, it gives both my husband and me an anchor as we navigate caregiving for three sons with DMD.

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.