Please enjoy this great guest story from our friend Sandy!

I’m not going to pretend that managing our son’s rare spine disorder, his multiple surgeries, or our frequent hospital stays are fun. It’s a huge challenge to coordinate doctor visits, time off work, daily care, insurance, and our older son’s missed school days four weeks a year. We don’t take vacations – we travel from Oklahoma to the Greenville Shriners Hospital in South Carolina every eight weeks. So, you might wonder how we can find anything positive from the medical chaos.

Maybe we’re just suckers for positive thinking. Would we rather spend those 36 days each year on vacation? You bet. But we don’t have the ability to do that, so why dwell on it? Instead, we make the best of what we have, and hope our children can later handle tough situations with a little humor and a problem-solving state of mind.

Why We Appreciate Medical Travel

1) Our Kids Can Sleep Anywhere

This family is forced to travel do to a rare medical condition, but their medical travel isn't all bad. Here's why they're thankful for it!

We struggle like most families with getting our 3-year old to sleep. He starts each day at 100% and ends each day only when that 100% is completely empty. He sings, he talks, he calls for us 652 times. But when he finally does fall asleep, he’s usually out for the night. It’s 10 hours of bliss. Thankfully, it’s the same when we travel.

On the way to and from South Carolina, we stay at various hotels with their own sounds and character. We’ve stayed in dives with no heat and 4-star hotels that give us discounts for his condition. When we’re in Greenville, we stay at the hospital for two nights. We hear patients in the middle of the night, and the whirring of hospital machines. Our overnight stays have quite the variety. But no matter where we stay, as long as our bedtime routine stays mostly the same, our kids can sleep anywhere. They can sleep in strange beds, nap in the car, sleep on the floor, or snooze on a hospital couch. I love that they are learning how to settle their little bodies into sleep no matter what’s going on around them.

2) Instilling the Love of Travel

This family is forced to travel do to a rare medical condition, but their medical travel isn't all bad. Here's why they're thankful for it!

Even though we go to the same place most of the time (using the same two routes), our kids love it because we get them excited for the trip. We involve them in packing and preparing, which amps them up even though they are fully aware of where we’re going. We keep the drive positive and avoid blanketing them with the stress we are experiencing (What if he gets sick on the way? What if the x-ray doesn’t show improvement? What if there is another delay and he can’t eat for 12 hours again?). By keeping the experience positive, we’re passing onto them that travel is something to look forward to, and that it can be separate from the hospital part. We have fun with car games, new movies, fun snacks, and new stops.

This has helped tremendously when we want to travel to other places, usually to see family. They help pack and quickly settle into their seats, excitement in their eyes. In some ways, I suppose the excitement is that they aren’t going to a hospital. But that’s OK – I think it makes them appreciate the non-medical trips more, and hopefully this sets them up to love and appreciate travel when they’re older. Preferably the optional kind.

3) We Learn Along the Way

This family is forced to travel do to a rare medical condition, but their medical travel isn't all bad. Here's why they're thankful for it!

We usually don’t have extra days to build into our trips. It takes four ten-hour days of travel and two days of pre-op and surgery every eight weeks. That’s a lot of time to take off from work. Instead, we combine all of our needs into one überstop when we can – eating, stretching, going to the restroom, and getting gas. While truck stops accomplish this, we like to go to a park visitor center, rest stop, or city center where we can learn something about the area and run around. Our older son’s favorite is when we can walk around a new sports stadium, though nature centers are wonderful when the weather isn’t good.

These kinds of stops are more fun, get the energy out, and instill the love of travel. When we do have trips to other places, they are more open to learning and exploring because we emphasize stops where we can experience new things. On a recent trip to Indiana, we stopped in Illinois and my oldest son walked up to the visitor center counter and asked if we could visit where Abraham Lincoln was born while we were in the state. The kind lady smiled and said, “Sure, but you’d have to go to Kentucky to see that.” Then we spent the next 30 minutes in the car learning about Abraham Lincoln’s childhood.

4) Patience

This family is forced to travel do to a rare medical condition, but their medical travel isn't all bad. Here's why they're thankful for it!This is my husband’s favorite, but it didn’t come easily or quickly. We had some rough patches, especially when Jack was around 18 months old. Toddlers want to move! But sitting in the car for four days, six times a year, will eventually reap its rewards. Our kids are normally movers and shakers all day, but can sit calmly in a car for four hours at a time. We see the change at home, too. They can get through the grocery store without temper tantrums (usually) and can wait in long lines. This trait is especially helpful at the hospital, where we do a lot of “hurry up and wait” for pre-op, x-rays and surgery. Learning patience is not easy, and we are heartened that our kids have a leg-up on it. When they are adults, they’ll make wonderful co-workers, leaders, spouses and fathers.

5) Adaptability

If you asked me which benefit I appreciate the most, it’s adaptability. Boy do we have this one down! There are many times we have to change plans due to weather, unexpected road closures and traffic jams. We don’t hiccup a bit when we have to go around Talladega during race days, or when an interstate bridge collapses in Atlanta. One time, we got three hours up the road when the interstate closed because of an unexpected ice storm. We stopped for the “night” and had to spend way more time in a hotel room than we wanted. But the kids never balked at the sudden change of plans, and we easily came up with fun activities to occupy ourselves until we could travel again the next morning.

I admire families who travel with their kids frequently. I don’t think adwe would do it as much if it was optional. But I’m thankful for our journeys because it shows us that we can do it no matter the circumstance. Travelling is a powerful experience for kids, and while we can’t do the kind we wish we could, the benefits keep me going, knowing that the day we can travel for fun will be appreciated that much more by us all. Where should we go when our medical travel is done?

 

Sandy is the voice behind Nature Girl in a Technical World. She’s a former Park Ranger who left in 2014 to care for their infant son and his rare spine disorder, for which he wears a plaster “Mehta” cast around his torso. She writes about their lives “wrapped in plaster” and how they aim for a life in nature, even when their son’s disorder is at odds with it.

This family is forced to travel do to a rare medical condition, but their medical travel isn't all bad. Here's why they're thankful for it!