Taking a Break During Clinic Week, Feeling a Little Guilty

My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start this week. A couple of weeks ago, I shared in a column that I wouldn’t be going to these appointments because one parent needed to stay home for activities that are scheduled for two of our three other children.

I can’t remember when the house was last this quiet. The dogs are staring at me, as if asking, “What are we supposed to do now?”

My youngest, Mary, 7, will be home from school soon, and tonight my only son without Duchenne, 14-year-old Chance, will be here. Mary and Chance are my most independent children — except for my daughter in college who is living independently 100 miles away. Chance wakes up before me, gets dressed, and makes himself breakfast. The only thing he needs from me is a ride to school. Mary will need help fixing her hair, and I’ll get her breakfast, but that is it. She’ll get dressed by herself and have her backpack and water bottle ready to go.

Part of me is celebrating this little break, but guilt begins to trickle in even as I type these words.

Recommended Reading

November 17, 2021 Columns by Adeel Rizvi

What Effect Does Constant Decision-making Have on Our Lives?

I love being a mom and a caregiver, but if I’m being honest, sometimes it’s hard. Not having time off leaves me feeling tired. I’m the primary caregiver, and on top of that, 12-year-old Rowen is very particular about who helps him. It’s difficult to take breaks.

I feel bad for missing the neuromuscular clinic visits, but this is the first time I’ve missed one in 11 years. If I went, however, I would feel bad for missing days that are important to my other children. My husband and I have learned over the years that having a large family sometimes mandates the divide-and-conquer strategy of parenting. So we divided, and I’m conquering the admittedly easier part of our week. I’ll take the two kids to school and attend Chance’s first and second high school basketball games. Our family is both a family living with Duchenne and a family living with talented athletes, so games — especially the first ones — are important to us.

If this were more than a routine, biannual visit, we both would be at the clinic. We have come to expect some changes and new recommendations after clinic visits, but we don’t expect surprises, and I hope and pray there is no bad news this week.

At home, I’ll keep my schedule free and Jason can call or text me with questions during the appointments. I will also look at the test results on their online health portal as they come in, and I’ll call or text Jason with any questions or concerns I have. I am thankful for technology that allows us to participate in appointments from hours away.

My husband asked me what I was going to do with all my free time. I listed off several things, telling him I’d be productive, but that I’d be sitting on my butt to do most of them.

I think that is the thing that is different about this week. I never sit down during the day. I know that many caregivers and parents understand what I’m saying. I want to enjoy sitting down and resting for the next three days. There will be no lifting or transfers, stretches, or ankle-foot orthoses, no hyperinflation therapy with the cough assist machine, and no therapy appointments. These things are what fill my days. With the boys at the clinic, this becomes a week where — instead of doing these things for the three boys — we will measure how successful all of that effort has been.

I love my boys and will do everything in my power to give them the best of everything. Max, my oldest son, shared on Thanksgiving that the one thing he is most thankful for is doing as well as he is as a 16-year-old with Duchenne. Me, too, Max!

I am so happy for his health and for my younger boys, who, although at different stages, still have strong hearts and lungs, and we prayerfully hope many healthy years are ahead of them. My husband and I will do whatever it takes, but accepting rest when it comes our way is how we can take care of ourselves — to take care of Max, Rowen, and Charlie.

I’m trying to navigate through the guilt I feel for not being at the clinic, but also celebrating that my boys have a great dad and care team in Denver that allows me to be here with our other children and get some much-needed rest.

***

Note: Muscular Dystrophy News 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.