Being a parent and caregiver to boys with DMD changed my career path
For parents of children with rare diseases, life is filled with the unexpected
When I stopped working at a job away from home in 2007, I never imagined it would be a permanent change. I was pregnant with my third child, Chance, who is now 16, and had decided that I wanted to stay home full-time with my kids.
On my last day of work, my comedic husband, Jason, sent me flowers with a “Happy Retirement” message. But I was convinced at the time that I’d be back.
My career path — check that, my life path — took a completely unexpected turn when my three other sons, Max, 18, Rowen, 14, and Charlie, 12, were diagnosed with Duchenne muscular dystrophy (DMD) in 2010.
Naturally, the diagnoses changed my life. Before learning about DMD, when I thought about my future, I saw a mother raising healthy children, not a caregiver having to witness the health of three of her children slowly deteriorate. I took it for granted that I’d continue with my career.
I do know many moms of boys with Duchenne who have continued to work as teachers, lawyers, nurses, and professional advocates, but I couldn’t figure out how to make that work for me, and still haven’t.
Instead, I wanted to be home with the boys so that I wouldn’t ever miss a thing as they grew up. I knew DMD would eventually cut their lives short, so I needed to be there with them as much as possible. I know all mothers of children with rare and fatal diseases feel like this, but I could never figure out how to do both. I’m always inspired by those who do.
A new mission in life
I also believe my past as a foster kid left me with a fear of trusting others, particularly when it comes to the care of my children. Growing up, I witnessed too much abuse and neglect. That’s why, as a mom, I felt more than a need to stay home — it was more like a compulsion. That pull on me is as strong today as it was 14 years ago.
So, after the diagnoses, I devoted my life to my children and to being a good caregiver. I gave up the contractual work I had been doing to supplement our family’s income. I even homeschooled the children for the first year so that I could soak up every minute with them.
In hindsight, homeschooling was a snap decision in response to my broken heart. I don’t regret doing it that year, but my boys performed better and enjoyed learning more in a typical school setting.
Although I don’t regret giving up my career, I do occasionally miss working away from home. I miss having work friends, and even doing my hair and makeup before going to the office.
Sometimes I wonder what I’d be doing now if not for Duchenne.
Writing this column, “Party of 9,” has been a blessing. It allows me to be creative, but I don’t have to leave the house. Plus, it’s a flexible job so that if one of the boys is in the hospital, or we have a week of appointments, I have the time I need. I enjoy doing it, and it has motivated me to pursue other writing opportunities that allow me to be a caregiver first and foremost.
Duchenne may have changed my career path, but it has also given me countless moments with my children — and it’s brought me to you. No regrets here.
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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.