Helping My Little Ones Understand DMD

I’m late to pick up the kids from school a lot now. I haven’t always been this way, though. Last year, I’d arrive 10 minutes early every day and use it for some quiet prayer time. But since having a baby earlier this year, I arrive late to school about two or three times a week.

Last week, on one of the days I arrived early, my 7-year-old daughter, Mary, ran to meet me with a hug. She hopped on our vehicle’s wheelchair lift and rode it up with her brother Charlie, my 11-year-old son who has Duchenne muscular dystrophy (DMD). As she neared eye level with me, she whispered something so softly I didn’t hear it the first time: She said she didn’t like it when her friends asked about her brothers.

My initial response was fear; I worried that someone had said something cruel. But that wasn’t the case; some of her friends have been asking her why her brothers are so short.

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I told her that it’s OK to talk about these things. The boys have a disease, and it is OK to explain it. It’s also fine if they ask questions, I said.

I told Mary she could tell her friends that her brothers are short because one of their medicines makes it hard for them to grow. My three sons all take a long-term corticosteroid and deal with short stature as a side effect. But Mary whispered that she still didn’t want to talk about it with her friends.

My husband, Jason, and I had previously decided that we would talk about it. We would raise awareness by sharing our family’s story with the goal of helping our boys grow up in a community that understands what they are experiencing. We hoped that by sharing our story, we would help other families affected by Duchenne.

But looking at Mary’s worried face and listening to her hushed concerns, I realized she is experiencing some big feelings about her brothers and their disease, and she’s trying to make sense of how it all affects her first-grade world. The fact that her dad and I are comfortable sharing our experiences with DMD doesn’t necessarily mean our children are ready to share.

When I write something about one of my older children, I’ll ask them if it’s OK to share first. I understand that it is their life I am talking about, and they need to be OK with what I’m saying in public. However, I may have overlooked Mary’s feelings. Duchenne was a part of our family before we even knew Mary would join it. We knew the boys had DMD years before Mary was born, and she has only ever known her brothers with DMD.

Mary also has always shared a special bond with her older brother Rowen, my 13-year-old son with DMD. She always seemed to know when Rowen needed help, and she’d intuitively help him.

We’ve talked to her about certain things, such as the importance of being gentle with the boys and avoiding rough play, because they could fall or she could hurt them. We’ve asked her to give up her seat to the boys because their legs were tired. But I don’t think we’ve ever really sat her down and told her why. We haven’t told her what the disease has done to the boys’ bodies and what it will continue to do.

It’s possible she didn’t realize they are smaller, weaker, or just different because she has only known them that way. They are her brothers. By pointing out these differences, her friends may be causing her to think about things differently.

I need to sit down with her and listen. I want to hear about her feelings and thoughts. I have an idea about what she might be going through, but I can’t presume to know. I want to hear it in her own words and understand her specific worries.

It would be easy to tell Mary about the things her older siblings who don’t have Duchenne have experienced, and how they have worked through it, but I feel I’d be doing her a disservice. Mary’s her own little person trying to make sense of something very big — something so big that, at times, I struggle with it even as an adult.

I hope my husband and I can help Mary understand what her brothers are experiencing and why they look or move the way they do. But more importantly, for Mary, I hope we can help her with what she is feeling.

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.