I share seven children with my husband, Jason, including three sons who have Duchenne muscular dystrophy (DMD): Max, 20, Rowen, 17, and Charlie, 15. Most of my columns talk about caregiving and my sons with DMD. However, in our large family, many other dynamics are at play, including the sibling dynamic.
This week, I want to write about my 11-year-old daughter, Mary. She is a very special girl, and by highlighting her strengths, I hope readers will learn more about the interplay between DMD and siblings.
What inspired me to write this was that Mary was recently named student of the week at her middle school. In nominating her, her teachers wrote that “She’s a delight, she’s got a great sense of humor, [and] she takes her classwork seriously but still has fun — you could watch this gal for tips on how to succeed at HMS!”
Mary is smart and has been identified as a high-ability learner, so it’s no surprise that she’s a great student. She’s also lots of fun to be around, and it makes perfect sense that her teachers would mention her sense of humor.
Of course, I was extremely proud of the recognition. I picked her up from school and took her to one of her favorite places in town to buy a cookie. I’m proud of her success at school, but I’m even prouder of the person she’s becoming. I feel blessed to have a front-row seat to how amazing she is everywhere. But I’m especially thankful for the type of sister she is at home.
Making a big difference
Mary is wonderful to her three brothers with DMD. We never intended for her to help care for her siblings, because she is younger than all of them. When my sons were younger, they helped me take care of Mary by holding her bottles when she was a baby and playing on the floor with her when they could still walk.
However, in our family, there’s been a transition. Her brothers with DMD have grown weaker and more dependent on others, while Mary is growing by the inch and becoming more independent every day. Now, she’s the one who helps them.
I’m a full-time caregiver in our home, and two other caregivers help out a few days a week. However, Mary will also fill in when one of her brothers needs something and I’m busy.
Mary makes a big difference in their lives. If one of them drops a phone, she’ll pick it up for them. If someone runs out of water, she’ll refill the water bottle. If something is blocking a wheelchair’s path, she’ll clear the way. I know these might seem like minor things, but to her brothers, they’re not.
She does more than that, too. When Rowen wants to hold his dog, Mary will often put a table on his wheelchair, pick up the dog, and set him on the table. Max and Rowen don’t like to wear their shoes once they get home, so she’ll often beat me to taking them off. Those small acts are a big contribution.
I don’t have to ask her to do any of these things for me. As a younger sibling, Mary has watched her brothers grow weaker. She remembers when they could walk. By watching the disease progress and seeing her father and me having to gradually increase the care we gave them, she’s learned to do things without being taught. She always chooses to make their day better, often putting their needs before her own.
I’m a proud mom, but these qualities aren’t unique to my family. Over the years, I’ve met several families affected by DMD. While each of them is different, one thing that appears to be consistent is the fact that siblings are exceptionally caring and wise beyond their years.
DMD siblings often face difficult experiences. It’s not easy to watch your brothers grow weaker and endure pain and loss. I wish I could spare all of my children from the effects of DMD. Nevertheless, the situation is shaping my children into caring, wise, and amazing people.
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.
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