Steve Carlin
Steve Carlin lives in North Carolina with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome. Despite living with Dravet, she’s happy and according to Steve, has a “crazy sense of humor”—a trait Dawn says she gets from her Dad.
Steve Carlin lives in North Carolina with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome. Despite living with Dravet, she’s happy and according to Steve, has a “crazy sense of humor”—a trait Dawn says she gets from her Dad.

As you may have read in my recent contribution as an Everyday Expert, my wife, Dawn, and I recently loaded our two daughters, our two dogs, and (essentially) our lives into a fully-loaded RV and embarked on a trip across the country. Our goal was to spend some quality time together, make some memories, and put as many pins in the map as possible. What transpired was all of that, and oh so much more… 

As you can imagine, there are an incredible amount of logistics to consider when driving cross-country in an RV—especially when one of the passengers has Dravet syndrome. Not only did I have learn how to operate the vehicle itself (after all, you’re maneuvering a house down the highway) and then get enough insurance to cover the possibility of my backing the thing into a telephone pole anyway, we also had to make sure Zora was covered. This meant packing just about everything: numerous changes of clothes, every medicine in the cabinet (her prescriptions, acetaminophen (oral and suppositories), antihistamines, you name it…), a portable air conditioner, a lifetime supply of Band-Aids, all of her familiar favorites (her iPad, her watch collection, her giraffe, her Elmo, her movies) and of course bubbles. Lots and lots of bubbles.

 

Girl Looking at Canyon
Zora in bubble-blowing
bliss over the Grand Canyon

 

Some people definitely thought we were crazy, taking 2 kids and 2 dogs across the country. We’d tell them our plans and they’d just smile and shake their heads. But we were excited. Beyond excited. We’d get to set foot in nearly three-quarters of the states in the country! Not to mention the fact that we’d finally get to attend the The Dravet Syndrome Foundation’s 3rd Biennial Family and Professional Conference in Aurora, Colorado. 

 

Believe it or not, for the most part the trip went off without a hitch. We had our Griswold moments, of course. The toilet clogged and we had to make a pit stop at True Value to buy a snake. And no sooner had I fixed that than the water line clogged. I threw out my back in Oklahoma City. We got off course at the Grand Canyon. But it was nothing we couldn’t handle. And as for Zora? Despite being completely off-schedule, and completely out of our comfort zone, her seizures were actually less frequent than normal. It was incredible. A blessing. Care to hear more? Let me take you through the highlights reel.

 

DAY 1

After getting a late start (due to needing a refill on Zora’s benzodiazepine prescription a day earlier than allowed by law) we spent our first night at an RV park somewhere between Knoxville and Nashville, Tennessee. It wasn’t a planned stop. Just a sign on the side of the road. But that’s the beauty of an RV: you can literally sleep anywhere. Even in the parking lot of a shopping center if you need to (which, fortunately, we never did). So after grabbing my flashlight to make sure the place looked legit, we parked and hunkered down for the night.

 

DAY 2 

From Tennessee we drove to Arkansas. Dawn had found an App on her phone that lists all of the state parks, national parks, private RV parks, heights and widths of bridges (so you can make sure your RV won’t get stuck getting you there). Another quick night stay in an RV park there, and we were back on the road in the morning.

 

DAY 3 

Next stop was Oklahoma City where we spent the afternoon at a natural hot springs. It’s okay that Zora only had a banana and a Nutty Buddy for breakfast, right? Road rules! I couldn’t swim, but the cold water sure did feel good on my sore lower back.

 

 

Family Selfie
#familyselfie
Family Picture
Eva and Dawn after jumping
off of a waterfall

 

DAY 4 

From Oklahoma City we drove to Texas—just drove through, really. Made a pit stop at a rest area so we could claim the bragging rights. Then it was on to Albuquerque where we spent the night. Not sure Zora was able to grasp it entirely, but for the rest of us, being able to see the different landscapes was just spectacular—each one, so different from anything on the east coast. So much quieter without the insects to drown everything out. Eva even made a comment about a book she was reading—about how the landscapes in the southwest reminded her of the book—and for her to get that different perspective was amazing. Zora loved the giant windmills. She called them fans (which are another one of her obsessions). It wasn’t the easiest travel day, if I’m being honest. Zora just didn’t want to stay in her buckle. She was much happier lying on the couch with the dogs. We weren’t exactly comfortable with the arrangement, but sometimes you just have to go with what works. Again, road rules.

 

Girl With Dog
Zora with Marley, our
God-given service dog

 

DAY 5 

Next stop, Arizona: where we had to check out an attraction called “The Great Meteor Crater” (how could we not?) before finally making our way to the Grand Canyon! I’d only ever flown over it before, and Dawn hadn’t been there since she was Zora’s age. Which is really important to note, I think. Because so many Dravet families find themselves unable to make what most families consider typical, right of passage-type memories: first trip on an airplane; first visit to Disney World; first time seeing the Grand Canyon. Which was the exact reason we were inspired to take this trip in the first place. We wanted to make the kind of memories with our kids that Dawn and I were fortunate enough to make with our parents when we were their age.

Family Selfie
#makingmemories
Father and Daughter Selfie
#daddydaughterselfie

 

As for the Grand Canyon itself? Let me tell you, I was blown away by what I saw. My jaw was on the ground the entire time. Zora’s stroller made things a little difficult, yes, but it was absolutely worth it. Even when Dawn had to push Zora through unbearable heat to try and find Eva and I who had inadvertently gotten ourselves onto a trail that led us to the bottom of the canyon—even as poor Dawn was sitting on a stump, sucking air, trying to catch her breath—it was still worth it. (I’m pretty sure she’d agree with me.)

The landscape there is just incredible. No picture can ever do it justice. You walk 100 feet in any one direction and everything looks completely different. And those differences are amplified by a thousand every time the sun rises or set. In fact, we watched the sun go down after walking the entire south rim. And it was so spectacular that, two days later, we got up early to watch it rise—and I’m talking early, really early, 2:30 in the morning early. Early enough for me to get everything packed before waking everyone else up in time to watch the sunrise at 5.

After that unforgettable sunrise, we hit the road. We stopped at the famous four corners, of course, to claim our four map pins, and then we headed on to Colorado for the DSF conference in Aurora. You can read about the amazing time we had at the DSF by checking out my other recent Everyday Expert article: Reflections on the Dravet Syndrome Foundation’s 3rd Biennial Family and Professional Conference: Four days of information, motivation, and rejuvenation for one family living with Dravet.

 

Sunset Over Mountains
Family Selfie
Claiming four states
at the famous four
corners

 

HOMEWARD BOUND

Since I consider myself a bit of a fisherman, my family was fully prepared to spend our first night post conference at a campsite near the Big Thompson River (or “The Big T” as us fishermen so affectionately refer to it). So while I was fishing (and catching, too, I might add!) Dawn and the girls caught public transportation to Rocky Mountain National Park. They picked a trail on the “easy” list and Zora was able to hike 1.6 miles of it BY HERSELF! #prouddad

After leaving Colorado, we drove through Wyoming en route to Scottsbluff, Nebraska, where Dawn’s uncle lives. Zora got to ride on a tractor, and Eva learned how to drive a stick!

From Nebraska, we headed to Wind Cave in the black hills of South Dakota where Eva and I took a 5-hour spelunking tour! I’m talking kneepads, helmets, flashlights…the works. The smallest cave we passed through was 3 feet tall by 10 inches wide. No joke! We loved it, and plan to do much more spelunking in our future. Meanwhile, Dawn and Zora were picking a park ranger’s brain about their hiking trail options (not too many steps, nothing too delicate for Zora to touch) when they learned that the National Parks Service offers families like ours a lifetime Access Pass that will get us into any national park in the country, for free!

 

Father and Daughter Spelunking
Eva and I after a day of serious spelunking!

 

From Wind Cave, we made it to Mount Rushmore just in time to watch the monuments be lit. It was very cool, but Dawn and I agreed that, personally, we’re more impressed with natural wonders than man-made ones. Zora was disappointed that there weren’t fireworks. She really thought the occasion called for pyrotechnics of some sort. But alas…

From Mount Rushmore, we drove through the Badlands and hung out with a pack of prairie dogs, then we cut through Iowa and Missouri on our way to the arches in Saint Louis. We spent the night at a campsite in Kentucky (where they were very accommodating with our request to be far, far away from their pool—if Zora knew there was a pool, she’d have never gone to sleep), and then finally made our way home. Dawn had to work. It was time to get back to reality.

 

“Step outside your comfort zone and see what happens. There’s a whole world out there, and you might be surprised by what you discover.”

 

All told, we drove through a total of 17 states and covered over 6500 miles of highway during our two weeks on the road. After we returned (and I suspended my self-imposed social media blackout), a man from Brazil sent me a message. He’d been following our journey on Zora’s Facebook page and he wrote: “Man, your trip just gave me so much hope—hope that some day we can take a trip like this with our little girl.” This message truly gave me a whole new level of appreciation for the trip we’d just taken, the adventure we’d been on. I’m not looking for accolades, but if something we’ve done in our lives gives hope to other people in their own, then it makes me incredibly grateful to have had the courage and the will to do it in the first place. And I’ve reminded myself every day since not to take it for granted.

When we were passing through Iowa, we saw a billboard that read: “Fear is contagious. So is hope.” How true that is. Before we left home, we felt that it was going to be incredibly important to keep Zora on her schedule, stick to her routine, etc, etc. But the reality is that we ended up pushing her pretty hard—what we consider hard, at least. We were running around every day. Her sleep schedule was completely off kilter. But you know what? Zora did great. Better than great. Which made us realize that she is able to handle way more than we initially thought she could. So I guess if I had one piece of advice to add to the list I proposed in my first road trip article, it would be this: if you’re a Dravet parent, don’t be afraid to stretch your child’s limits a little. Reevaluate his or her list of triggers. Step outside your comfort zone and see what happens. There’s a whole world out there, and you might be surprised by what you discover.

 

Please check with your child's physician prior to embarking on a vacation or road trip.

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