As parents, we dedicate our lives to raising our children. We work long and hard, striving to meet their needs, teach kindness, encourage a strong work ethic, and foster self-advocacy. Our goal is to help them grow into successful adults.
As a mom of many, I can see my and my husband’s hard work and dedication to our family paying off. Most of our children are adults or young adults: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie live with Duchenne muscular dystrophy (DMD).
Our oldest is married and working. She and her husband own their home, and she volunteers in her community and is a successful salesperson. Two of our children are in college and doing well, and two are in high school, making plans for what’s next.
I do miss the people my children were when they were little, though. Watching them grow up can be bittersweet, and I’m happy to have two young daughters who allow us to continue experiencing those special moments, but seeing my older kids in this phase of their lives is also very cool.
My favorite part of the kids getting older is the way our communication has changed. As they become adults, they talk to me more often. They tell me about what matters to them and how their experiences have shaped them. Two conversations come to mind.
Connecting with my young men
I’ve long carried guilt about being a Duchenne MD carrier, and was afraid my sons would hate me for passing on the genetic disease to them.
But when I talked to them about it, they were shocked that I felt bad. They could not understand how I would feel any blame and said that they had good lives. Realizing they didn’t blame me and had never considered it my fault brought such relief, and released pain and guilt I had carried for a long time.
Another conversation was just as insightful.
After returning from a retreat with other Duchenne moms, where we’d discussed older men with Duchenne not having many friends or things to do, I talked to my sons and asked if they were worried about that happening. They were very open and told me they didn’t think they would experience it because they have each other. As a family, we are always going places and doing things. Their words were assuring.
It is a great feeling to see my children mature, both physically and emotionally. As a caregiver to Max, Rowen, and Charlie, I was often their sole decision-maker when they were younger, but as they get older, they are better able to express their own thoughts about what they want for their lives. It is so satisfying to see. Engaging in meaningful conversations with them as young men reassures me that we are on the right path and that we’ll continue to support one another and thrive as a family.
I look forward to the exciting things that lie ahead.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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