Here are some facts about me: I am an introvert, I am quiet, and my strongest voice is the written word. I grew up in the foster care system and experienced childhood trauma that makes it hard for me to know how to be around people. I am a mom to seven children: Lexi, 25, Max, 20, Chance, 19, Rowen, 17, Charlie, 15, Mary, 11, and Callie, 4. I am a caregiver to Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD).
When I became a mom 25 years ago, I began a journey to heal from those childhood wounds and break the cycle of poverty and abuse that I had known. I wanted my children to never know the struggles I experienced.
I have a happy marriage. It’s not without challenges, but it’s good. When we had our daughter and later welcomed four sons, I thought I had my happily-ever-after. But life had more in store for us. Learning that my three sons had Duchenne MD could have broken me, but it made me stronger and — more importantly — a better mom.
Loss of independence
My column may read like the start of a book I hope to write someday, but for now, I want to focus on how, even after starting to heal from childhood, I was still very introverted and preferred my family’s company. I was never comfortable around others and always felt different.
None of that changed when my three sons were diagnosed with DMD. I became a person with a past like no one else I knew and a future unlike anyone else’s. I am different and I will always be.
What did change, however, was my sense of responsibility to my boys. When my sons with DMD were little and ambulatory, they were invited to birthday parties and over to friends’ houses for play dates. Life for them didn’t feel so different from my oldest daughter’s or from her social life at that age.
However, as they lost ambulation and entered high school, they began to miss out on the new independence their peers were experiencing because they needed so much help. Their wheelchairs became an obstacle to hanging out, and over the years, Max, Rowen, and Charlie have become quieter versions of themselves, and they came to care less about being seen.
I prefer a quiet life, but I didn’t want this isolation for my sons.
A better me
This past year marked a major transition. My desire to help them connect pushed me outside my comfort zone. When their wheelchairs kept them from going out to see friends and family, I started bringing friends and family to them.
The mom I have been for the past 20 years is gone. I used to dread play dates and sleepovers because my home was my haven; I could be myself there. However, I find that I no longer care if I say the wrong thing, am too quiet, or don’t quite fit in.
Now, I care only that my sons have connections with others. This year, I began hosting events so the boys could see peers, neighbors, and old friends. Previously, the thought of having people over would have overwhelmed me. Doing this for my boys now feels natural.
We hosted a Christmas party at our home, reconnecting the boys with people they hadn’t seen in years. When Rowen and Charlie attended prom with their cousin, we organized a dinner for a dozen kids (my sons said this was the highlight of their prom), and Chance recently asked if he could bring teammates over. We ended up hosting 20 college baseball players!
Max, Rowen, and Charlie need people, and so do I. Life as a mom of three children with DMD is hectic and hard. We need support. Helping my boys connect has also helped me grow, making me a stronger, better mother.
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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