One of our best parenting tips for families with DMD is to be present
Some of the best gifts as parents have no monetary value
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Siblings are the greatest thing I have given my children. They are built-in friends who share the earliest memories, parents, and everything else. As my kids have gotten older, they have many “remember that time” stories they love to laugh about as they reminisce.
Duchenne muscular dystrophy (DMD) doesn’t change that. It actually intensifies my children’s bond, adding levels of protectiveness, caring, and kindness. But it also adds a degree of difficulty for parents.
I have three sons who live with Duchenne — Max, 17, Rowen, 14, and Charlie, 12 — and four other children — Lexi, 22, Chance, 16, Mary, 9, and Callie, 21 months. My children without Duchenne are healthy but still very much affected by their brothers’ diagnoses.
How do we, as parents, help the boys with DMD manage the disease? How do they help their siblings deal with witnessing what Duchenne does to a person? And how does a parent provide their children with Duchenne all the care, love, and support they need while still having enough to give the other children?
The answer is that it takes work. Parenting with Duchenne in the family is Olympic-level stuff. It doesn’t matter if it’s one child with Duchenne or three, as in my case. It doesn’t matter if you have only one child or a large family. It’s all difficult.
So how do I ensure that all seven of my children feel loved and supported by Mom and Dad? How do we manage to spend time with each of them?
The main thing we’ve done in our family is to find everyone’s “thing” separately from Duchenne, and go after the dream. For Lexi, that “thing” was basketball; for Max, it was theater; for Chance, it was baseball. Rowen loves broadcasting, and the three youngest are still finding their way. But once they find it, Mom and Dad will prioritize supporting them at the highest level possible.
Lexi and Chance have played on elite traveling teams that required us to drive two hours each way for practice. We also traveled the country for competitions. Max has participated in choir and theater nearly year-round. We chase dreams.
When Max, Rowen, and Charlie were diagnosed, I used to say that I’d drive to the moon and back to save them. I wanted to make that same level of commitment for all of our children, independent of Duchenne.
We aren’t perfect at it, by any means. We’ve had seasons when it was tough to do it all. We’ve heard those dreaded, heart-wrenching words: “You only care about the boys.” Of course, it isn’t true; we love and care for all of our children the same. But I know why kids sometimes say those things. Max, Rowen, and Charlie get much of our attention out of necessity during those seasons, and we often need the other kids to help.
A different kind of remedy
When we have failed to give our kids an equal part of us as parents, we have learned to give the gift of presence. This was something we started at Christmas a few years ago. It was one of the Christmas presents we gave to each child. Each of them got to pick one parent and choose an activity. The time spent together doing the activity was their gift of presence.
We went to the movies and dinner theater, we went sledding, we had a date at a museum, and we went out to eat. The kids loved it, and it was an “aha!” moment for us as parents. It was a treat to our children, because we had not intentionally spent individual time with them until then. It became apparent that it was necessary as we lived and navigated a life with Duchenne.
So now, when life has been chaotic or messy — as life with Duchenne tends to be — we know that our kids need us, and we give the gift of presence.
These things we do to help our kids feel loved and supported on this challenging journey are acts of love. For us, that is all we’ve needed.
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.
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