When I get overwhelmed by life as a caregiver, I count my joys

Pulling into a parking spot at my oldest son’s high school, I hit a parked car with my van. Thankfully, there was no damage to either vehicle, and the car’s owner, sitting in the front seat when I hit it, was amiable and understanding. I could safely unload my son Max, but I didn’t make it out of the circle drive before I started to cry.

I know it was an accident, but it was one thing too many for that day. I carry a heavy load as mother to seven children and caregiver to three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. I’m a stay-at-home mom who spends entire weeks without a minute alone, especially when my husband is traveling for work, as he is this week.

I wanted to go home, DoorDash some tacos, and indulge in the pity party I was hosting for myself.

But I’m trying to be healthier and lose a few pounds, so instead of ordering tacos, I got my youngest daughter, Callie, 2, down for a nap and got on my elliptical. It was the right choice because the endorphins worked, and I sweated away a little stress.

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I don’t like to be on the verge of tears as I travel through my days, but being a Duchenne caregiver and mom can cause heartache. And I let myself feel it; I cry it out.

I refuse to stay in that tearful place, however. I have children who depend on me, and I want to be there for them. So I do my best to dry my face and go on. For me to move on, I count my joys.

The practice of gratitude

I’ve shared this practice in my column before, and if you’ve spent time with me while talking about my family’s journey with DMD, you’ve also heard me say it, so my apologies for discussing it again. But it helps me. I think about all the little joys in my life and add them up; their sum is always greater than Duchenne.

The day I hit the parked car, my mind was elsewhere. With my normal workload as primary caregiver more involved with my husband away, I was exhausted, and life felt unfair. When I hit the car, all of that came leaking out.

I didn’t want that accident or Duchenne to be the dominant issue that day, however, so I counted my joys, adding them together until joy was the most significant part of my day. They’re not all big; most are small comforts. Gratitude takes practice, but the thankful mindset has been instrumental to my navigation as a Duchenne caregiver.

Here I’ll share with you the 10 joys I counted that day.

1. I’m a mom. Of all the things I’ve ever done, motherhood is the only thing that’s ever felt right. And I’m blessed to be a mom several times over!
2. Two of my sons are home from school by 2 p.m. each weekday, and after they arrive, they spend quality time with their little sister. It’s sweet to witness.
3. I have a dog named Murphy, and I’m his favorite human!
4. Max received a scholarship from a college theater department this week.
5. I have a lot of soft pillows and throw blankets on an oversized couch in my living room, making me both comfortable and happy.
6. I have at least a small tote of decorations for almost every holiday. I love seeing a heart garland hanging in my dining room for Valentine’s Day.
7. We have only limited physical help in our home for the day-to-day care of the boys, but we live in a community that roots and prays for us.
8. My sons have all the medical equipment they need.
9. We’re eating Italian this week.
10. I have a dishwasher that works!

Gratitude makes me feel better, especially as life with Duchenne is a series of losses; my focus can quickly shift to what we don’t have. When I count my joys, they’re bigger than Duchenne, and I can concentrate on the good things in my life.

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.