Finding solace: Why I need July’s slower pace

July is my favorite month. Many people who know me might be surprised by that, as they’re aware that I’m a Christmas enthusiast who loves to decorate, making my house look like the North Pole for nearly eight weeks every winter. I spend the other 10 months of the year thrifting for the perfect Christmas decorations to add to my collection.

However, Christmas is a holiday, and decorating is a hobby, and my favorite one at that. But July is my favorite month because, for the past decade, it’s been slow and easy — a welcome reprieve from the steady hum of the schedule we keep as a family of nine. My husband and I share seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3.

There’s some irony to the fact that July is a respite. Max, Rowen, and Charlie are all living with Duchenne muscular dystrophy (DMD). Max was diagnosed 15 years ago in July 2010. Sometimes, I wonder if I create a slow and soft July for my family in response to the trauma we experienced all those years ago when we learned our son had an incurable, fatal disease.

As my family settles into this July, I find myself needing the slower pace more than ever before, and I’m grateful for what I call the dog days of summer.

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My oldest daughter has been married for almost a year. My two oldest sons have graduated from high school and are now pursuing their college endeavors. We stopped one clinical trial so all three of our sons with DMD could start another. We stopped one medication Rowen and Charlie had been on for years to try something new, only to find it wasn’t working as we’d hoped and have now begun the process of switching back to the first medication.

We’ve just experienced several significant life changes, and while we navigated them one at a time, I didn’t realize how tired I was. As we’ve started to slow down this month, however, I’ve realized that I’m both emotionally and physically drained.

As a caregiver, I didn’t take into account how much I was asking of myself to do those things, as well as dress, shower, and toilet my sons with DMD. And I didn’t realize how much time I still needed for their medication management and appointments.

It all came to a head last weekend. My son, Chance, played six baseball games in six days — four of them in an area outside of Denver that required a six-hour drive and a three-night hotel stay. We took everyone but our oldest daughter and her husband.

Once we arrived in Denver, we made a vacation of it and had a lovely time. We went out for nice dinners and attended a Colorado Rockies game. Chance also played a great tournament, hitting a home run and several other extra-base hits. Baseball is slow-paced, matching the vibe we were going for. We sat in the shade and spit sunflower seeds into the grass, chatting with our friends on the team.

However, the preparation for the trip was tremendously taxing. We had to do a lot of preparatory work to ensure that everywhere we went was accessible. We packed medicine and a Hoyer lift and needed to take both of our vans to get there with all of our kids and supplies. Packing is never just packing; it’s laundry and lists, all while still meeting the needs of Max, Rowen, Charlie, and their younger sisters.

I was up until midnight before we left at 7 a.m. the next day. We got the kids dressed and the vans packed, and then it was time to go. My husband somehow managed a shower, probably because he left early with Chance, our most independent child, but I didn’t have time.

My self-care that morning was changing my underwear. I wore the same shorts and tank top that I wore to a baseball game the previous night. I didn’t shower, put on makeup, or run a brush through my hair. I just got in the accessible van and drove to the first game in Colorado.

That’s too busy. That’s not enough time for me. It’s not a healthy pace for anyone. Needless to say, I’m happy that we had a lovely weekend away, and now I’m more than ready for a slow couple of weeks before my kids head back to school.

The kids and I plan to spend lots of time at the public library, movie theaters, and our backyard pool. We’ll spend a lot of time reading, eating snacks, and lounging around. It’s going to be magnificent!

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.