Finding time for some quiet thoughts amid the travel and doctor visits

I’m one of those people who can get lost deep in thought. As a busy mom to many in a bustling household that could seem like chaos to others, my thoughts are often my only quiet time.

I share seven children with my husband, Jason: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD). Most of us spent the past week in Colorado at the children’s hospital so the boys could see their medical team for their biannual checkup and complete their clinical trial appointment.

I drove the first half of the trip so my husband could take work calls, but when we stopped for gas, we switched. Callie fell asleep, and the three boys were on their devices with their earbuds in. I had time to sit and think.

It was a luxury to be able to do this on the way to the clinic, and it was good for me. I can think through things and let go of some of the anxiety I always feel before these types of appointments.

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A positive experience at the PT office

My mind wandered over a few things, some related to the appointment and some to other aspects of caregiving for my sons.

We’ve recently begun visiting a physical therapy clinic near our home in Nebraska. When our sons were younger, we took them there for water therapy, but we stopped taking Rowen and Max when it became difficult to get them into the pool area, and then we struggled to find time to take Charlie after I began working outside the home.

But we have started going again this year, first Charlie and now Max, too, for rehab following his surgery.

The boys enjoy their visits, and the therapist and assistants are so friendly, always greeting us by name and expressing genuine concern about our family and our sons’ well-being. Max has decided he’d like to continue there even after he has recovered from surgery. I’m going to start taking Rowen again, too.

The boys sometimes get lonely for conversation and interaction outside the family, and I think it would be good for them to continue weekly appointments, if for no other reason than the social aspect.

Eager for a conversation and some downtime

My thoughts also drifted to appointments we would have during the week. I was eager for the endocrinology appointment and was planning a conversation with our doctor. Corticosteroids have taken a toll on my sons, especially when it comes to weight gain.

New weight loss drugs are now being used in the Duchenne community, and I think two of my sons could benefit. Of course, there are many things to consider, including risk versus benefit. More specifically, will they be allowed to take these drugs during the clinical trial? I was eager to speak with a specialist to see if they could be included in my sons’ care plans.

I also wanted to have some fun on our trip to Denver, not all hospital stuff. All three days would require at least six hours of appointments and up to 10 hours, depending on how things went. On these trips, my sons like to go back to the hotel and watch TV, lie in bed, order food, and chill. However, I start to feel a little cooped up. And Callie would need something to look forward to after long days at the hospital.

My thoughts led me to consider some small excursions for the late afternoons, an arcade or a movie, something to get us out of the hotel for a bit. Then we could grab an easy dinner out or find something to take back to the hotel.

I never know whether the things I think about will work out, but I know that thinking it all through ahead of time helps us be prepared.

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.