Rare Diseases Don’t Take a Summer Vacation
Earlier this month, both my sons finished school for the year. This last school year was busy, to say the least. Miles was finishing fifth grade, his last year of elementary school (can’t believe it), and the academics and homework were intentionally rigorous to prepare the students for middle school. Miles was also a member of the student council, and there were a plethora of activities that kept him busy as well. Mason finished seventh grade this year and spent the year studying hard for all of his classes and running to sports practices.
It was an awesome year, but it went by in the blink of an eye because the busy days turned into busy weeks, and somehow months flew by until, before we knew it, we were into the last leg of the school year.
The end of the school year was no exception to the quick pace. It rolled in fast and furious with events, projects, and performances. It was extra intensive than in years past because this year, we were working with the staff and administration to prepare for Miles’ transition to middle school. There were extra meetings, paperwork, and planning so that things will be in place upon returning to school.
So as the month of May whipped me about with all the happenings, I kept telling myself, one more month, one more month, and then things will slow down. We were desperate for summer’s slower days and less on our list of to-dos. Now, yes, perhaps it’s true that there will be fewer “school” to-dos on our list this summer, but there are not necessarily fewer to-dos in all the other areas of life. Rare diseases don’t take a summer vacation.
When I think of summer vacation, it conjures memories from summers when I was a kid. Playing outside all day and coming home only for dinner is what I think of when I think of summer break. Shoeless, curly hair astray from playing in the sprinkler, living in bathing suits or popsicle-stained t-shirts, was how you’d find me every day. When I picture summer, I see water slides, zoo days, amusement parks, pools, fireflies, fireworks, sidewalk chalk, sprinklers, and staying up late to watch movies!
But the reality for my kids is so much different. The reality is that we had four doctor’s appointments the first week out of school—FOUR! Not much of an exciting summer kick-off! Of course, this was partly due to the fact that I tried to push some of Miles’ appointments out of the last month of school so he wouldn’t miss all of the end-of-year/end-of-elementary school events. This is the juggle, right? Plan appointments when possible (often, it’s not possible) so that our kids don’t miss things. But these appointments still had to happen, so they got pushed into the first few weeks of summer. Not what I picture as the exciting start to summer or even the start to slower or less stressful days!
Yes, we want summers to be a time to “slow down” and “take-a-much-deserved-break.” But as we know all too well, rare diseases don’t always slow down just because we want them to. They don’t operate according to our schedules. Again, rare diseases don’t take a summer vacation. The therapies continue, the medications continue, the specialist visits continue, and let’s be honest, the stress continues too.
In fact, many rare families “use” the summers as just the opposite of slowing down. Many use it as a time to get surgeries completed. Many families are packing in as many doctor’s appointments as possible over the summer so that their children don’t have to miss as much school when the year starts up again. Many families are using the time for doing bursts of physical therapy, trying new medications, changing equipment, etc.
As rare parents, instead of getting a “summer break,” the caregiving often intensifies during the summer because our children are not in school, our in-home health aides are not as accessible and available, and many programs are out for summer.
So how do we still enjoy our summers with our kids despite continual health needs that don’t allow breaks? I’m learning to adjust my expectations. Summer may not be a two-and-a-half-month-long break for us, but we can at least plan for a few summer-like things, including time off, a change in the grind of the regular routine and schedule, and just some good ole fun!
As a family, here are a few things we’ve come up with to help us make the most of our summer vacation:
Slower Mornings– On the days we don’t have appointments, we decided one of the things we want to put into place is no rushing out the door before 10 a.m. We identified that we need a break from the rush, rush, rush to be able to sleep in later and not have to wake up and immediately start moving towards darting out the door. That break-neck morning pace of the school year is one of the things we want a vacation from. So, we are intentionally scheduling anything possible for a later start time.
Pool Day Meetups– Both my boys love going to the pool and being in the water. Miles can physically move freely in the water, which is a great feeling for him, not to mention good therapy. Going to the pool feels easy for me as a parent because we have one nearby that is not overcrowded, and we’ve been going there for years, so I know the routine. And let’s face it; the pool spells s-u-m-m-e-r. It’s a bit of a “happy place” for us! We don’t get there as often during the school year as we’d like. So this summer, we’ve decided to spend more time there intentionally and to make it even more fun by inviting friends to join us. This checks our box as a great way to “experience” summer because it’s fun, easy, and something we don’t get to do as often as we like during the school year.
Weekly Evening Fun– Summertime comes with longer days and sunlight until later in the evening. We will take advantage of it by adding in some weekly evening fun. Miles is learning adaptive tennis, and he loves it!!! I got inspired watching him and decided I wanted to learn how to play, too. My husband, Tony, used to play tennis in high school and still has incredible skills. Mason has taken up tennis, too, and is excelling at it. The beauty of tennis is that we can do it as a family. So we decided to add some tennis to the weekly routine. After my husband finishes work, we’ll use the extra daylight to play some tennis in the evening one night a week. It’s great exercise, it lets us be together, and it’s fun.
Vacation-Like Activities– A big summer getaway somewhere exotic wasn’t in the cards for us. But we’re still craving that family bonding that can often come when you’re spending a chunk of designated time together on a getaway. Plus, I still need the exploration and adventure that comes with travel. So we’re planning vacation-like activities so we can still enjoy time bonding as a family, explore new areas around us that we have still yet to see, and do some things that we don’t usually get to do when life is busy. Fishing, beaching, bike riding, and museums are all vacation-like activities that we can do right around home. Even though we’re not jumping on a plane and whisking off to a new destination, it still feels exciting and adventure-filled.
Those are just a few ways we hope to make the most of our time off school. It may not look like the summer break anyone else around me is experiencing, but it feels like a good fit for us. When I look at what these ideas represent, I see a slower pace, togetherness, and fun! Smells like summer to me!
Our family will still have daily schedules filled with our at-home physical therapy routines, daily reading to beat the summer slide, and chores that still need to get done. But at least we have some other ideas to help us feel like we’re getting that summer break we desperately crave.
Each of us rare families will have our own ideas and will find our own unique and custom plan on how to enjoy summer. But the point is to find ways to experience a summer break within the confines of what our rare diseases continue to require. This can help us physically, mentally, and emotionally get the break we all need.
So how will you spend your summer? Whatever you choose to do, I hope you’ll find a little respite from the daily grind, some beautiful togetherness, and perhaps even a popsicle. And when you notice that popsicle stain on your shirt, you might even think, AH…SUMMER!
