When Health Takes a Holiday
Parenting Teens with Health Challenges
What does it look like to incorporate rhythms of family life, including a family vacation, when your child is sick? How do you travel when your child struggles with mental or physical health challenges, and there is no end in sight?
These are the questions that my husband Peter and I faced in planning our annual summer family vacation.
Why Family Vacation Matters to Us
For context, family vacations are almost sacred in our home, most especially for my husband. In the past decade since we began the tradition of taking a family trip, Peter often spends months researching our trips, usually to a national park. Even though Peter drives a beat-up car whose odometer reads 230,000 miles and he is loath to spend money on clothes, home decor, or fancy dinners, he is thrilled to invest in a trip that brings our family together in a beautiful place. Peter needs an annual dose of the mountains the way some people need a Taylor Swift concert; it’s such a deep, rejuvenating connection that it’s worth the price tag.
One added benefit is that we often travel over a birthday, either mine or Peter’s. For birthdays, Peter insists on special adventures, as if experiencing new heights with our kids is his favorite birthday cake. One year, we hiked the Canadian Rockies, climbing breathlessly until we encountered a slanted rock face that William and Leah raced around as we gazed at multiple mountaintops. On another birthday, Peter buzzed with excitement as our family rappelled down Costa Rican cliffs, blinded by gushing white waterfalls. Before our kids entered puberty, we spent my 44th birthday traversing the long summit of a Swiss mountain, our sneakers sliding uneasily into snow and mud, with Ellie saying to me again and again, “Isn’t this your best birthday ever, Mom?”
It was a great birthday, because my favorite place to be is with my family in the quiet arms of nature.
But we knew this year would be different.
Travel with a Sick Teen
As we’ve navigated Ellie’s journey with debilitating conditions like POTS and Hypermobility Spectrum Disorder, we’ve had to embrace some hard realities. Our daughter struggles to walk for more than ten minutes. She becomes overcome with fatigue, dizziness, and nausea after standing. Rest has become an essential part of her lifestyle, along with avoiding hot weather. Any type of exercise is difficult, although using a stationary recumbent bike and swimming are the easiest ones to tolerate (yep, I know about Olympic swimmer Katie Ledecky’s POTS diagnosis). I’ve written before about using Spoon Theory to adjust expectations, and we support Ellie in pacing herself. While we expect that Ellie will be able to function better in the future, she isn’t there yet.
Adding in the fact that Ellie’s neurodiversity means that she is sensitive to large crowds and overstimulation, and needs alone time to stay regulated, we knew that our options were limited. Mountains, amusement parks, and big city tours were all off the table.
Finding a Compromise
Peter and I debated what type of vacation would work for everyone’s needs for both rest and play, adventure and quiet. We realized that even the option to take a family vacation was a privilege. Between the growing pile of medical bills and the time we had already taken off from work for Ellie’s doctor appointments, it felt harder to justify a vacation. But we also needed time together as a family outside of the usual grind. One of the invisible costs of having a kid with chronic health challenges is that you can become so busy thinking and talking about their health that you forget to enjoy being together. Yet the irony is that our children need to laugh and connect as part of the healing process.
Peter and I eventually agreed to a slow, simple trip within a half-day drive. We decided that a lake house would allow us to center our activities around what Ellie could participate in: boating and swimming. Renting a house near a state park would enable one of us to take our younger teens William and Leah on a short hike or bike ride while Ellie rested. We wanted a family room big enough to play board games and watch the Olympics. Hammocks offered a place for kids to read or gaze at the sky.
Accommodating a Neurodiverse Teen
Adjusting family vacations for Ellie’s needs isn’t new to us. Since Ellie’s mental health breakdown almost four years ago, we’ve worked closely with therapists to incorporate practices that would help her thrive on a family trip. Therapists gave us tools such as incorporating rest days and inviting Ellie into the planning process. We learned to choose lodging that would allow Ellie to have either a bedroom or a quiet space to be alone for self-regulation. Because mental health challenges don’t take a vacation, we also make space for Ellie to continue meeting with her therapist on FaceTime when we travel, even if that means adjusting the day around her appointment. Sometimes we have shortened a hike because Ellie’s anxiety spiked; sometimes we left later than expected, because she was having a bad mental health morning. It has not been easy, but with God’s help and a lot of communication, we have found our way through.
Finding Accommodations
Before our trip, I prayed that our family would find new ways to play together that would honor Ellie’s disabilities. Soon, I forgot all about that prayer, in the heat of stuffing suitcases, squirreling the dog away at the kennel, and hitting the “hold mail” button on my phone just as our minivan pulled out of the driveway.
But after we had settled into an Airbnb, whose sunset views took our breath away, I wondered, “What are we going to do for Peter’s birthday?” It would be the last full day of our trip, and I wanted it to be special.
We’d already begun enjoying the lake, sliding paddle boards and kayaks into the clear water. Most afternoons, all three teens and I would paddle away from the pier enough so that our feet wouldn’t sink into the slippery, slimy lake bottom. One by one, we slipped off the paddle boards into the water. Ellie floated on her back while her siblings splashed each other mercilessly and stole each others’ boards. We gazed up at the blue sky and marveled at how warm the water was for a few quiet minutes, until the water erupted with squeals and fervent splashing again. I would wipe lake water from my eyes and marvel at the laughter surrounding me like wind chimes as the sunlight glinted off the lake.
But I wanted us to hike at least one of the state parks nearby. Years ago, I had visited these parks on my own and found them charming and restorative. I knew my family would enjoy them, even if these midwestern state parks couldn’t quite compete with the brilliance of the mountains.
An Unexpected Gift
As I perused one of the park websites, I clicked on a tab that I had never needed before. Accessibility. Now that I have a daughter with disabilities, terms like accessibility have become welcome friends. They reveal what’s possible for my daughter. They offer options to participate in places primarily available for able-bodied folks. We’re learning to accept help in any place that we can find it.
The State Park has two outdoor wheelchairs that are available for free to checkout; a motorized all-terrain tracked wheelchair and a beach wheelchair.
As I read more, I felt like I had won the lottery. This is how we would spend Peter’s birthday! We could take Ellie on a beautiful trail through a gift of the state park system! Others had gone before us to make a path for someone like Ellie who wanted to enjoy the forest without using her legs.
That morning, park rangers told us that they had just acquired this all-terrain wheelchair and visitors had already proved its need by checking it out weekly. The rangers kindly showed Ellie how to operate the joystick to ascend or descend a hill and how to adjust the speed based on her comfort. They told us to keep the wheelchair as long as we wanted or until the battery ran out after a few hours. Ellie grinned as they waved us off.
So our family embarked on a different kind of birthday hike. I chose not to think about the times that Ellie had hiked ten miles in one day on the north rim of the Grand Canyon or when she’d scaled a thirty-foot rock wall. Instead of focusing on what Ellie had lost, I was filled with joy at what we had gained: family time in a beautiful forest hugging the lake, on a warm (but not too hot) day. Even though Ellie was in a wheelchair, we forgot about its presence, because it was doing what it was supposed to do. It gave us the ability to include our daughter in an adventure, while she invited us into hers.
At the end of the day, we all traveled up an accessible ramp to the top of a tower, some of us by foot and one on wheels, in hopes of seeing the sunset. When clouds blocked our view, we headed to the park beach. We all gingerly jumped in the lake as the sun went down, chasing each other around as the stars emerged.
It was a different kind of birthday and a different kind of vacation. But ironically, its simplicity gave us the gifts that we most needed: family connection, laughter, rest and joy.
I’d love to hear about how you’ve adjusted plans or expectations to accommodate your loved ones with health challenges.
Thankful for you,
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Such a beautiful story, all encapsulated in this: “It gave us the ability to include our daughter in an adventure, while she invited us into hers.” I admire your family’s intentionality and courage.
@SerenaMenken This piece is so powerful and filled with unconditional love. I have a child who lives with anxiety and depression. When we were both younger, I would find myself being inwardly impatient and stressed. Not anymore.
I learned to accept my child as they are, respecting that their troubles are real, reminding myself that they didn’t and wouldn’t willingly choose the anxiety or depression. Acceptance and passion allowed my heart grow in understanding and compassion.
I now allow my child to totally be themselves, and I’m much more mindful and attuned to when they’re starting to feel anxious. There is an instant pivot and a time of quiet or rest depending on what they need at the moment. If that means leaving a restaurant early because the noise is overwhelming or spontaneously changing “the plan,“ that’s what we do.
Talking calmly and quietly helps calm them. They’re receiving the necessary medical care and we’ve grown closer because there is an unconditional love there now that I wasn’t mature enough to pray ice or understand even a year ago.
Thank you for sharing your story. I see my own in your writing, which is so beautiful. May God bless you all 💟