Summer used to fill me with dread. As the parent of a child with a rare disease, the season my other kids lived for was one I had learned to fear. But one summer, something shifted and I made a choice. Here are six things that helped our family stop waiting for a perfect summer and start building a joyful one.
Summer vacation…
I remember a time when just hearing those words filled me with excitement and relief. It meant lazy days, family trips, and time outside making memories. The possibilities felt endless.
And then…
When I became the parent of a child with a rare disease, everything changed. Thoughts of summer brought sadness, anxiety, and dread. I had two other children who eagerly looked forward to those carefree days, but I also had one who required continuous support. She didn’t get a summer vacation. She needed tutoring year-round just to keep up with her peers. While her siblings played outside in the summer sun, she was often confined to a hospital bed enduring eight-hour infusions or being shuttled to medical appointments.
Even on good days, she had to wear full sun protection, not just a little sunscreen. She needed a wide-brimmed sunhat (think: middle-aged woman on the beach in Saint-Tropez) and a sunscreen so thick and white it left her looking ashen rather than kissed by the sun (back then, sunscreen was not formulated to blend with brown skin tones). Our life was anything but carefree.
We endured several summers of dread in those early years. But then one summer, something shifted. I made a decision to stop waiting for things to feel “normal” and instead make the most of what we had. In the words of Andy Dufresne from my favorite movie, The Shawshank Redemption: “Get busy living, or get busy dying.” I chose the former.
So what did that look like? It meant mapping out experiences I wanted our family to have and finding creative ways to make them happen. Instead of skipping vacations out of fear, I researched the nearest children’s hospital before booking any trip. I packed a pop-up tent for beach days so my daughter always had shade. And sometimes it meant choosing flights over long car rides, because sitting for hours exacerbated her pain.
I stopped waiting for the life I had imagined and started building upon the one we actually had.
Our summers didn’t become perfect. In fact, we had some epic fails. But even in those missteps, there was often laughter, happiness and surprisingly, a little joy.
So if you are new to this Rare Disease Life or are dreading having to navigate yet another summer, I’m here to tell you that I get it, and you don’t have to figure this out alone. Here are six things that helped our family reclaim summer that might work for yours too:
1. Scout your medical safety net. Before traveling, locate the nearest children’s hospital or specialist. Knowing it’s there allows you to enjoy the trip with greater peace of mind.
2. Build a “summer ready” kit. Keep sunscreen, cooling towels, medications, snacks, water, and comfort items packed together. Having everything ready makes it easier to say “yes” to spontaneous moments
3. Choose connection over perfection. A beach trip with extra shade, a shorter outing, or leaving early is still a successful family adventure. Don’t let perfect become the enemy of meaningful.
4. Make a family summer wish list. Ask everyone, including your child with JM, what they hope to do this summer. Work together to find creative ways to make those experiences possible. When children are part of the planning, they also become part of the solution.
5. Give yourself permission to pivot. Flares happen. Energy changes. Plans will sometimes need to change, too. Flexibility isn’t giving up; it’s one of the greatest strengths rare disease families develop.
6. Lean on your Cure JM community. Other families have already discovered helpful products, travel tips, and creative solutions. Don’t be afraid to ask questions. Sometimes the best encouragement comes from someone who’s walked a similar path.
Summer will never look exactly the way I imagined it years ago, and sometimes I still grieve that. But I’ve learned that joy isn’t found in waiting for life to return to what it once was. It’s found in embracing the life we have today.
So get busy living!
By: Ronda Thorington, MA, LPC
July 2026
