Parenting in a Duchenne Family Is Hard, But What About the Siblings?
It’s tempting to label the siblings of those who have Duchenne muscular dystrophy as the “unaffected siblings.” But I can never seem to get those words out of my mouth.
Siblings are indeed affected by Duchenne. In my family, the siblings, Lexi, Chance, and Mary, experience Duchenne daily, even though they don’t have it.
Max, Rowen, and Charlie, my children with Duchenne, have physical needs they can’t meet on their own. Meeting those needs, in addition to attending physical therapy, behavioral therapy, appointments at the clinic, school meetings, and other activities, takes a lot of parenting time away from Lexi, Chance, and Mary. It can be a little too easy to let the siblings fend for themselves or look to them for help.
I’m not sure it’s possible to spread my time equally when the needs of Duchenne outweigh the physical demands of Lexi, Chance, and Mary. Time spent at pool therapy, for example, means missing out on reading to the other kids at bedtime, missing their ball games, or being unavailable to help them with homework.
When my oldest daughter was in high school, we were late to parents night and missed escorting her out to the court. We were late because we were waiting for a respite caregiver.
Being a kid with any difference can be challenging. It is hard to be the kid in the wheelchair, and it can be hard if your brother is the kid in the wheelchair. I know they imagine what it would be like if life were different.
There are other big emotions, too. When Lexi was 9, she asked me if her brothers were going to die. So, there is a real fear of losing their siblings to this disease.
In our family, we can go without talking about the current status of our boys’ health for a long time. But when we are at the clinic, Chance and Lexi are waiting for our phone call to tell them how the boys are. Of course they worry about their brothers.
We are very open when they have questions or concerns. We try to create an environment in which they feel comfortable asking questions. My husband is great about staying up late with the teenagers and just letting them talk.
It can be easy to let Duchenne take over our lives. It’s a significant diagnosis and can be all-consuming. But that doesn’t make it fair to their siblings, and that hurts my heart. I want all of my children to know and feel that they have equal parts of my heart and are loved.
The first and often most challenging thing I must do is give myself grace. We are on a challenging road as parents of children with Duchenne. But we are doing the best we can.
I have found that it’s important to tell everyone’s stories. Initially, I created a Facebook page dedicated to our boys’ experience with Duchenne, where I posted updates for family and friends. However, it felt wrong to share details about only some of my children, so I now make sure to share things about Lexi, Chance, and Mary, too.
An unexpected advantage to sharing openly about our children has been the love we have received. People have poured their love on my children. Even when I can’t be present somewhere, I can be sure that someone who loves them will be, and a hundred more are cheering them on from afar.
We celebrate all of our kids. We celebrate the little things and the big things for every single one of them. We have a lot of dances in the kitchen. Alexa might be the most used tool in our house.
We promised to drive to the ends of the earth if that’s what it took to save Max, Rowen, and Charlie and give them the best life possible despite Duchenne. We promised to live!
We find ways to show all of our children that kind of sacrificial love. We find the one thing they love most and make it a priority. For both Chance and Lexi, that has been sports. They both excel at athletics, and travel teams have been a good outlet for them.
We cherish the car rides and travel with just one child. That way, we have no interruptions and can talk about their days, hopes, and dreams.
We are still figuring it out. My oldest child, Lexi, will agree with me that we have made a lot of mistakes along the way. She had a front-row seat to all of our grief and other emotions when we had no idea what we were doing. But we kept at it and got better, and when she’s called me for the third time in a day while at college, I think we did OK. She is a happy, well-adjusted, young adult.
I hope we will find all of her siblings in that same place one day, if we continue our hard work.
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