Riaan in the Rockies!
Riaan Travels to the Highest Paved Road in the US
by Jo Kaur, Founder of Riaan Research Initiative
(September 16, 2024) - Riaan’s Make-a-Wish trip to New Mexico emboldened us. Before, flying was off the table. It seemed too scary, too overwhelming, but after our successful trip to New Mexico, we suddenly felt brave and wanted to explore. So we (rather foolishly) thought, let’s try again!
When I plan a trip, I research it extensively. Trip planning, for me, is almost as fun as going on the actual trip. We’ve come to learn, however, that trip planning is not as fun with little kids involved, including one with a complex medical condition. Still, once you get there, it’s usually worth it, in our opinion. We hope this rather meandering yet intimately honest post, as well as our travel dos and don’ts, inspires other rare families to seek adventures!
For this summer, since we had recently gotten the kids passports, we considered an international trip. And that’s how we almost ended up in Belize.
I booked the flights, chatted with resorts, researched grocery availability, selected a travel insurance plan that covered pre-existing conditions, and learned everything I could about traveling to and around the country. Belize is a gorgeous jungle and beach paradise with rich Mayan history, ruins, and culture. I re-read one of my favorite books set in Belize to hype us up for the trip. (The Actual Star by Monica Byrne). I sought out travel tips from the Cockayne syndrome (“CS”) community. Another CS mom shared that her family had traveled to a tropical location with their child, and recommended we freeze as many of Riaan’s purees in advance and bring them along. What a great idea! We even got Riaan vaccinated for typhoid fever, and received clearance from an ENT regarding flying on a jungle plane.
Bye Bye Belize, For Now
A few days before we were scheduled to depart, I thought about bugs. I don’t know why. That led me down a Google dark hole, Reddit threads, and suddenly it seemed visiting Belize in the rainy, hot season wasn’t such a great idea. The town we primarily planned to stay in had so many potent bugs! I realized I’d never really seen Riaan scratch. His brother, Jivan (“Lu”), scratches all the time if he’s itchy. But Riaan, even when he’s had a mosquito bite, I can’t recall him really scratching it. Riaan’s primary method of independent mobility is rolling, and I just pictured him getting all kinds of bitten up, and there not being much medical care nearby. He also puts his hands in his mouth at times, and dealing with insect repellant, even the non-toxic kids’ formulas, all of the time seemed really stressful. So I canceled the flights. Is it possible the bugs were the excuse I was looking for because I was too cowardly to attempt this trip? Maybe. Just maybe.
I was bummed out. We’d cashed out a retirement plan to go on this trip. Basic living with only one working parent is challenging, especially when you reside in one of the most expensive cities in the world and have a child with a rare disease. We never expected that I wouldn’t be able to return to work after Riaan was born.
But given our situation, we especially need to live, and make the most out of the time we have together as a family of four.
I still really wanted to take my kids somewhere fun, on a plane, before summer ended. That’s when Richie suggested Colorado. It seemed like a beautiful place, neither of us had ever been, and ironically enough, the flight to Denver would take about the same time as the flight to Belize City (four hours). It was also a lot more cost-friendly than Belize. A bit sad, I tucked away all of the cute beach resort wear I’d bought for the kids and packed their sweaters and jackets.
With less than a few days until departure and not much time to plan, we were off to Denver!
The night before our flight, I was nervous. However, our Make-a-Wish trip had been successful, and I was confident we could do it again. Except this time, we were alone. We didn’t have the lovely staff at Make-a-Wish to help us. Could we do it ourselves?
#Ride4Riaan 2024
Before we left, we checked in with Winty Singh, who is taking on the hardest ride he’s ever completed for this year’s #Ride4Riaan. Our goal is to raise $10,000 by October 12th when Winty rides 200 miles in one day for children with Cockayne syndrome. Winty told us he’s been working hard to train! Please support his ride and donate here. We are also offering exciting sponsorship opportunities this year.
The Trek to Denver
Our travel day began at 5 am. I was up first, made myself a cup of cha (chai tea), and choked down a piece of toast with peanut butter. I knew I wouldn’t likely eat until we got to our Airbnb near Rocky Mountain National Park. Our car service came at 6 am. I’d been fortunate to find a car service that offers huge vehicles, and car seats for the kids, for a reasonable rate. This time, our luggage included two large suitcases, a car seat in a car seat bag (we planned to rent the second one from the car rental company), two strollers, and three carry-on bags, including a cooler backpack. I tried really hard to limit our carry-on luggage but had to plan accordingly for any emergencies. I especially wanted to make sure that Lu and Riaan had enough food and drinks for the day.
We arrived at JFK airport relatively easily. It was a Wednesday morning but there wasn’t much traffic, and we were able to check-in our luggage at curbside. Then it was time to go through security.
I have TSA pre-check but Richie does not. We had a plan for this situation. Sometimes they let us go through together through the pre-check lane as they had in South Florida but that was not going to work in JFK, I could tell already. Richie took Lu and the carry-on luggage without food through the Reserve line, and I took Riaan and all of the food/liquids through pre-check. JFK offers a Reserve line where you can make an “appointment” for when you’ll be screened. The Reserve line is usually shorter than standard security, and we had made an appointment for Richie and Lu for this very reason.
We wound up emerging on the other side around the same time because they always have to do extra screening on all of our food, milks, and drinks for the kids. We then headed to our gate area, which had Minute Suites next to it. Through my credit card, we were able to access a private suite for free, for an hour. We quickly took the kids inside, fed them breakfast and drinks, drank a little ourselves, washed their bottles, and then were off to our gate. Our plane had almost completed boarding!
We were able to get on the flights with relative ease. This time, I took the kids in first, and Richie packed up the strollers for gate-check and brought in the carry-on luggage. We settled in, and I breathed a sigh of relief. We put Lu in the middle seat, and I held Riaan. I was afraid the flight attendants would say something because technically Lu is the “lap infant” but Riaan can’t really sit well on his own in a seat, even with an extra harness belt. On the flight back from New Mexico, the Jetblue flight attendant forced us to put Riaan in the seat for take-off and he cried the entire time, screaming, until the plane took off. That really upset me.
It took a while for our plane to depart, as everything is always delayed from JFK, but soon enough we were in the skies, and had less than four hours of flying time to Denver.
I wish I could say it was an easy flight. It was not.
The kids had a terrible time, but Riaan did much better than his brother who was cranky and fatigued from not sleeping well the night before. To top it off, both of the kids wanted me to hold them which was hard to do, and Richie and I were struggling to keep them happy while barely being able to hear each other because of the loud noise of the plane and our masks. The entire flight I was shifting Riaan around because he couldn’t stay comfortable in one position for long. I laid him down, sat him up, stretched and massaged his legs and back, sang him songs, and read him books, etc. Riaan fortunately did fall asleep for a short while but then his brother’s cries woke him (and everyone else) on the plane. Lu refused to sleep at all. We tried to keep them as well-fed and hydrated as possible but for us parents, it was an incredibly stressful flight. On that plane, I swore off travel forever.
Landing in the Land of Never-Ending Airport
When we landed in Denver, I had no idea it is considered the largest airport in North America and the second largest in the world (what?!). After we deplaned, I was surprised to see a completely packed airport, with people sitting all over the floor. It was somehow worse than JFK, how?! I held both kids and waited for Richie to bring the strollers. Lu wiggled out of my arms and almost ran right into an open elevator. I’ve never screamed, “Stop!” so loud in my life.
The fun wasn’t over yet. After navigating our way through endless, overwhelming corridors, taking multiple elevators, and going on a whole entire train, we finally made it to baggage claim. Then we had to take the shuttle to the rental car with all of our luggage. When we arrived at the rental car agency, which was over 15 minutes off-site, the line out the door was over an hour long. I cursed myself for not having planned this trip better. It was so packed that there wasn’t even any room to stand inside, much less with two strollers. On top of it, the Denver sun was glaring down on us, and it was over 90 degrees. Riaan had decided this was a great time to refuse to wear his hat or sunglasses, which of course is problematic for a child with Cockayne syndrome.
While an understandably grumpy Richie stood in the line with our luggage, I took the kids to a covered parking garage on the premises where we at least had shade and a hint of breeze. I fed them snacks, some lunch, and gave them drinks while they were in their strollers. Lu spilled an entire pouch on his stroller. Once they were fed, I remembered I had a can of orange juice from the plane. I gulped down the entire can: it was my first drink since we left JFK. I don’t think I drank or ate anything up until this point.
Scrambling to keep two tired and cranky children entertained in that parking garage, I let Lu run around a bit, his shenanigans making Riaan laugh. Somehow I managed to even change their diapers (there was no way I was going to try and take them to some crowded bathroom inside an even more crowded building). Finally, we got the keys to our Jeep, installed the car seats, put up the sun shades for Riaan, and hit the road.
We had about a two-hour drive to Fraser, Colorado, climbing to an elevation of over 8,000 feet, to get to our Airbnb. We made a pit stop at In N’ Out which was the best part of the day so far. Both kids love sipping water out of fast food water cups so they were happy. Not too long after, we entered the incredibly high and winding mountain roads. Lu began crying hysterically. We pulled over to the side of the road, and I picked him up as fast as I could. He suddenly projectile vomited all over me, my face, my neck, my shirt, and just drenched me. By the way, you know you love your child when you’re not repulsed by them vomiting on you. I didn’t blame him though, the roads were making me queasy too. Riaan, surprisingly, was just fine. In fact, he was handling this day like a champ compared to his brother.
Finally, somehow, we made it. The house we had rented was absolutely breathtaking. A mountain palace set in a serene, enchanting forest, on a high dirt road. We saw the Rocky Mountains outside of our window, the soaring pine and juniper trees, and best of all, we had a gorgeous hot tub on the deck.
After we settled in, Richie drove off to pick up the groceries we had ordered online at the nearby market. Fraser is a tiny mountain town, with some shops, restaurants, and a grocery store. He didn’t even have to go inside: they brought them right to the car, saving us a lot of time. We showered, made dinner for the kids, ate, and then put them to bed, Richie and I falling asleep with them, completely, mind-blowingly exhausted.
We had left a sink full of dishes and our unpacked suitcases everywhere but at least travel day was finally over. We’d made it to the Rocky Mountains!
Rocky Mountain National Park: The West Side
We began the next day with a nice, long family soak in the brand new hot tub. The temperature outside was a brisk 65 degrees, and the kids loved absolutely every minute of it. We saw a family of deer nearby, and tons of beautiful birds flying above. Suddenly, we were all smiles again, and reinvigorated about our trip, our travel struggles from the day before fading away.
While we hadn’t done a lot of research given the last minute booking, we’d decided in advance that we didn’t want to spend the entire trip driving. There is a lot to see in Colorado but we opted to stay in the mountains for the full week. We thought it might get too boring to stay in one place the entire time so we split the vacation up into staying on the West and East sides of the park. We started with the West side, which is less crowded but also feels more remote. We were about 45 minutes away from the park entrance, but enjoyed a few hikes over the next few days, including one that was a modest half a mile climb to a gorgeous waterfall. Both kids were really excited whenever they saw other children on the trail although Riaan tends to favor adults. One man playfully teased Riaan for being “tired already” because his dad was holding him. People were very friendly on the trail!
When we got to the waterfall, we met a kind woman, a beautiful soul, who instantly tried to hold hands with Riaan, telling us she had worked with “special needs” children her entire career. She was incredibly sweet and we were so honored to meet her. She did, however, make me reflect on the term “special needs,” which is used to frequently describe disabled children. While Riaan is the greatest person I know, I don’t see his existence or his need for disability accommodations as “special” in that way and frankly, I find the term to be a bit patronizing. and off-putting. Many disability rights activists believe that the term can perpetuate stigma and discrimination against children with disabilities (and I agree with them). Riaan is entitled to every accommodation, there’s nothing “special” about his condition or existence (CS is rare but rare disease is more common than most people think!) or his need for accommodations and accessibility. Furthermore, disabilities of any kind are quite common among humans. I know the term is regularly used in educational programs but I think it should be retired. There’s nothing wrong with saying disability or disabled.
"My needs are not 'special;' they are the same, human needs that everyone else has, and I should be able to fully participate in society just as much as the next person." - Lisette Torres-Gerald, a Disability Rights Advocate
But I digress. Riaan really enjoyed the waterfall and the hike (his first official hike in life!).
We had a nice meal at one of the local restaurants: both Riaan and Lu enjoyed this outing and were actually fairly well-behaved. We explored a tiny town called Grand Lake which is right at the entrance of the West side of the national park. It’s cute, and has a lot of ice cream shops and restaurants. They also had a playground, which Lu loved, he adores swinging, and meeting other children. The locals were so nice, and kept complimenting Riaan and Lu on their good looks.
I worried about the intense sun and the altitude. We were higher than we’d been in New Mexico, almost at 9,000 feet above sea level. I felt the altitude immediately, as I always do. It takes me a day or two to adjust, and a couple of Tylenol. The kids, as they had in New Mexico, were both fine thankfully. Because of the dry air and the high altitude, Riaan got a rash on his face as we got closer to the end of the trip (he had a similar issue in New Mexico but it instantly went away once we got back down to sea level/more humidity). Other than that, he did pretty well, health wise. He doesn’t typically sunburn so we don’t have to do much more than apply sunscreen. He didn’t vomit the entire week we were in Colorado. We worked extra hard to push him to drink more water, and I think overall, he did okay. In fact, he ate more in Colorado. For some reason, the high altitude made him ravenous. He really is a trooper!
While the West side of Rocky Mountain National Park and the surrounding area was lovely, it was remote, and it did feel like we had to drive a bit to get to places. I started to feel like maybe it wasn’t the funnest trip, and it wasn’t as relaxing as we’d wanted. I think the reason was that we were looking for a trip where for once we as parents and caregivers would get taken care of a little too. We’ve been going nonstop for almost five years, and haven’t really had a “break.” That would have been the benefit of going to a resort in Belize: we’d shop, cook, and clean a lot less. Here, in Colorado, it felt like we had to everything we normally do at home but we were in a much more beautiful place with neat day trips and activities. Still, we were on a gorgeous vacation and that’s not an opportunity everyone gets. Maybe Richie and I wouldn’t get much respite but to our kids, this was a totally cool new adventure.
I also began to worry about our drive through the park to get to the East side where our next Airbnb was located. We’d be driving 48 miles of the highest paved continuous road in the U.S., with steep, hairpin turns, and little to no guardrails, climbing to an elevation of over 12,000 feet for several miles. Riaan tends to complain quite a bit on car rides, and I was anxious about that as well. There’s no cell service in the park, and it would be challenging in the event of an emergency. While we wouldn’t be alone - there’s other cars on the road - it’s still a whole new world, indeed even the top of our part of the world. We didn’t have much of a choice though: to go around and avoid the park would have taken three to four hours. No thanks!
Adaptive Equipment and Supplies
I want to take a step back for a minute and chat about supplies. When we went on Riaan’s Make-a-Wish trip, the organization actually ordered supplies for us in advance and mailed them to their office in Albuquerque, and delivered them to us at the airport. This included a high chair, diapers, wipes, cleaning supplies, toys for the kids, etc. It was wonderful. This time, I tried to order some items online in advance to send to our Airbnb but delivery was pretty slow in the mountains and we didn’t receive most of our packages. It turned out to be ok though. We had brought along most of what we needed, and were able to purchase baby necessities at the grocery store. The biggest issue was having a seat with a harness for Riaan to sit in. I had purchased travel high chair harnesses and they actually worked pretty well when strapped to a dining chair. This allowed us to feed him, and keep him safe and mostly upright. He would slide down at times, and was a bit hunched over but it worked well enough.
But we were certainly limited for regular seating since we didn’t have Riaan’s usual adaptive equipment or even a proper high chair. Fortunately, our second Airbnb on the East side of the park did have a high chair and that helped us out a lot. Plus, Lu was an excellent sidekick for his brother throughout the trip, helping to keep him entertained during meals by throwing a ball back and forth, or playing their favorite game: balloon volleyball (or “family balloon-ey” as we call it).
Driving The Highest Paved Continuous Road in the U.S.
Rocky Mountain National Park has an odd entry system during the summer but it’s designed to prevent overcrowding in the park. If you enter the park between 9 am - 2 pm, you need a reservation, and only a limited number are available each day. We didn’t have a reservation for the day we planned to cross the park to the other side but we arrived at the entrance gate at 8:30 am, our Jeep packed with bags and a cooler full of food/drinks, and were ready to go!
First, we took a long hike at a place called Coyote Valley, strolling along the Colorado River, enjoying the morning air, and the sounds of animals. We wanted to give the kids a chance to experience the great outdoors before we climbed to an altitude of over 12,000 feet. In those moments, looking at the gorgeous views, the radiant smile on Riaan’s face, everything felt right and calm in our world.
After our healing hike, we were off to continue our journey up Trail Ridge Road! I sat with the kids in the back, and tried to keep them entertained and calm. Riaan, bless his heart, can make the most experienced driver nervous with his car cries and complaints, and requests for various forms of entertainment. Riaan is not a patient person while riding in a car.
Very quickly, we reached the intense high altitude of nearly 12,000 feet. Riaan started to complain, and looked a bit pale. There is a park visitor center at the top, the Alpine Visitor Center - the highest national park visitor center in the US - and when we stepped out, the air was much thinner than it was even at 8,000 feet and change. The difference was palpable. Riaan seemed uncomfortable so we didn’t want to stay too long. We took a quick photo, gazed out at the bighorn sheep grazing away and hiding from their predators, and then went back into the Jeep. As soon as we began to descend, Riaan seemed a lot better.
We made a lot more stops, the day and the views were absolutely breathtaking. Not a cloud in the sky! We couldn’t believe it. They had predicted the usual barrage of severe afternoon thunderstorms, cold weather, and fog but we had none of that. Of course, the sun, as lovely as it is, can be dangerous for children with Cockayne syndrome. We sought out the shade as much as we could.
As for the road, there were definitely points where I clutched both kids’ hands and took a deep breath. We were frequently on the cliff’s edge, with dramatic drops. But all in all, Trail Ridge Road was nowhere near as bad as roads I’d driven alone in places like Utah, where I experienced 1000 foot drops on both sides, and 14% grades.
Once we made it to the East side of the park, we had a relaxing picnic surrounded by towering mountains, and let the kids enjoy the clean air. Suddenly, an afternoon thunderstorm rolled in, an intense breeze that almost felt tropical, and we rushed back to the Jeep.
Later that day, we checked into our Airbnb which was less than two minutes from the entrance of the national park, and also absolutely gorgeous. But no hot tub this time.
The East Side of the Park - Estes Park
It was in Estes Park that we discovered the true magic of Rocky Mountain National Park. The town excited us, and the close location to the park entrance was incredible. Estes Park is a happening town, as far as mountain locales go. The downtown area was beaming with tourist hot spots, delicious restaurants, homemade ice cream parlors, coffee shops, grocery stores, and even pharmacies. We wound up needing the pharmacy to pick up Riaan’s prescription for famotidine (for his acid reflux), and there was only one available bottle in town. Estes Park was full of tourists and while I’d always had mixed feelings about tourist towns prior to becoming a mom, that’s all changed now. Now I’m grateful for all touristy places because the kids love them, the amenities are great, and it’s nice to see so many other families enjoying their vacation. One day, we even stopped off to see the hotel from The Shining: the iconic horror flick was filmed in Estes Park.
Estes Park was also home to another kind of local: wildlife! Elk and deer roamed all over town, crossing streets, and would frequently graze and nap in the town square. At the house we were staying in, I remember playing with Riaan on the living room mat while a herd of elk walked by our patio door and disappeared into the mountains in the back. At night, if we took the trash out, it was a bit eerie because we could hear animals roaming near us. It felt so normal, so typical to have wildlife all around us in this place. I thought about what would happen if an elk or a moose showed up on the streets of New York, and then reflected again on how “unnatural” urban life is, at least to me. Humans are meant to be surrounded by nature, including animals, in my humble opinion, for ultimate peace and happiness.
The place we were staying at had even better views of the mountains than our first home. We loved being in the house, walking around the yard, and enjoying a cup of coffee as we sat on the deck. One clear night, while the kids slept, Richie and I stepped outside onto our driveway and looked up to see one of the most beautiful starlit skies we’ve ever seen. Nearly every inch of sky seemed to be covered with sparkling stars, the night air tingling with anticipation and mystery. We felt humbled and uplifted, with the important reminder that there is so much more in our universe than we’ll know or ever understand but across time and space, love, and especially the love for a child is the most wondrous experience life has to offer. We felt so thankful to be in this place, in this time, with our Riaan and Lu.
During this part of our trip, we frequented the park at all hours but early mornings and at sunset were best, especially to keep Riaan safe from the intense sun and to spot wildlife. One night, we walked around Sprague Lake, and saw a giant moose right on the path in front of us. We locked eyes with this beautiful, huge creature, Lu grinning from ear to ear, running toward it at full speed. I don’t know if Riaan was able to see the wildlife: he didn’t have much of a reaction to the animals but he absolutely loved our hikes and smiled and laughed frequently, clearly enjoying being outdoors. We did as many kid friendly hikes as we could: exploring waterfalls, and clear mountain lakes. Hiking with Riaan is easy but with his brother, it’s a lot more of a fearful experience since he wants to run off and explore everywhere. We regularly ran into wildlife traffic jams which were fun. Overall, it was amazing to have different scenic places to take Riaan to for our walks.
In town, we feasted on Colorado’s best, mostly getting take-out: Mexican food, American, including BBQ (disclaimer: Colorado isn’t really known for its cuisine but Richie did enjoy the elk steak.). We devoured ice cream.
We absolutely loved the Estes Park area, and didn’t want to leave. But it was time, our Colorado journey had come to an end.
Going Home
We had anticipated that the return trip back to New York would be difficult but we could not have predicted in our wildest dreams how bad it would actually turn out to be. We left Estes Park and drove the one and a half hour ride to Denver, stopping along the way to feed the kids, throw away items, and consolidate our luggage. We were flying Frontier Airlines back, a nonstop to NYC, and that was probably the greatest mistake we could have made. On top of it, it was a clear, super hot, and extremely sunny day, which are never ideal conditions for Riaan.
We returned the Jeep to the rental car place, dragged out all of our luggage, the two strollers, and somehow made it onto the airport shuttle. At the airport, because the line to check in our luggage was long, we decided to separate: Richie would check in our luggage, and I’d take the kids, pushing two strollers alone, and some of our carry-on luggage through the precheck security line. Richie would have to go through standard screening when he was done.
At first, the security line moved quickly. A kind man helped me push Riaan while I pushed Lu’s stroller, and I was able to get both kids through the metal detector. However, it was then that the TSA agent decided he would need to conduct secondary screening on every bottle we had, and would not let me have my purse to give Lu his pacifier. Both kids were crying and upset, and wanted to leave. It took him, I kid you not, nearly 25 minutes to screen everything despite me telling him this wasn’t the typical procedure for our bottles. I realized very quickly that the more I protested, the slower he went, so eventually I just held back my tongue. After he finally released us, I was extremely stressed out.
I called Richie to see where he was and he was panicked on his end too. He was still trying to check in our luggage: it was taking a really long time. Our flight was scheduled to depart in less than an hour. I told him we’d proceed to the gate and to meet us there. Denver International Airport, despite being so large, doesn’t really have any private suites, nor did they have any nursing rooms near our boarding gate. I had to push two strollers mostly alone through this enormous airport, Riaan crying almost the entire time because he was exhausted and wanted to nap. A kind woman who told me she has five children helped me push one of the strollers until we got to the train - yes, of course that damn train! But once I got out, I was mostly on my own but very grateful to all of the strangers who had helped. We rode three or four elevators, walked the endless corridors, and finally we made it to our gate, me drenched in sweat. We had about 40 minutes left until take-off but the flight was slightly delayed.
I called Richie. He was even more anxious than us. He had to unpack and transfer some items from our suitcase because Frontier has more severe weight restrictions than other airlines. He’d finally made it to security but the lines were very long, and he was nervous he was going to miss our flight. When he got to the train, it stalled, and all of the passengers were kicked off. He waited 20 minutes before he decided to just run through the airport.
Meanwhile, I struggled with the kids at a very crowded gate. Both Riaan and Lu were crying and wanted out of their strollers. Everyone was hot and exhausted. I tried my best to keep giving them water. Richie kept calling, and said he didn’t think he’d make it and that I may have to fly without him. I seriously considered what would be worse: trying to fly with two kids alone or going all the way back through the Denver airport, and getting a hotel. And then what about our luggage?!
But Richie thankfully made it, just five minutes before boarding. After a mad hustle through a crowded boarding area, we finally got on the plane, our seats toward the front, and settled in. The kids fall asleep, and we take off. The flying time is closer to 3.5 hours, and I couldn’t wait to get home. I was relieved the hard part was behind us.
Of course I spoke too soon.
After about four hours of flying, they announced that LGA in NYC had temporarily shut down arrivals due to some purported bad weather, that we’d run out of fuel, and would be landing in Cincinnati, Ohio. Richie and I stared at each other, our eyes bulging. How could the kids, especially Riaan, handle this major change in plans? The flight had already been rough at times. Lu woke up and had been hysterical because he was so tired, Riaan began crying because his brother was crying, and it went back and forth. Eventually we calmed them both but it was tough. The kids were just done with traveling (as a side note, I’ve now realized that the kids can handle flights 3 hours and under but beyond that, it becomes a lot harder).
At first they told us we would land, refuel, and then take off again, and that all of us would stay on the plane. But 45 minutes after landing, at around 11:30 pm, they kicked us off with our carry-on luggage only, and told us to return the next morning at 7 am. They would keep our checked luggage on the plane. We were in shock but I’d quickly booked a nearby hotel room with a kitchen and an airport shuttle. I had also called a dear friend who lives in Cincinnati, and she literally saved the day. The airport was closed and there weren’t really any taxi services available. She picked us up, and took us to the hotel. By the time we checked in, found our room, showered, and put the kids to bed, it was 1 am. We had to be back at the airport at 5 am.
We were also short on supplies because we had assumed we were just heading home. We had only a few diapers left, some shelf-stable milks, and water. We had snacks for Lu but not much to eat for Riaan who can only have blended purees. His blender and all of his items were in our checked luggage. We had limited clothing for them but just enough to get on the flight the next morning. Richie and I had no toiletries or change of clothing for ourselves.
It broke our hearts to have to wake the kids up so early the next morning, they were all cuddled up and cozy in the bed. Riaan cried all the way through airport security but this time the screening experience was a lot better, and a TSA agent tried very hard to make him smile and laugh. We fed the kids some breakfast in a private suite near our gate - we had picked up some yogurts and muffins at the hotel breakfast - and then were able to get on our flight and finally reach home. We noticed that most of the passengers from our flight had slept at the airport on Frontier-provided cots but that just wasn’t an option for Riaan or us.
Fortunately, the kids passed out during the flight from Ohio to NYC, and we faced no traffic going from the airport to our home. It took a few days to recover from our trip but despite all of the hassle and exposure, thankfully no one got sick. I was relieved.
All in all though, what an adventure. I recently spoke with another family of a child with a rare disease, and they just got back from an incredible trip to Hawaii! They also had really tough travel days but once they were there, the vacation was everything they wanted and needed, and more.
I’d say traveling as a family in our situation is really hard especially when plans veer off course but also worth it. We need it. Everyone does. We need a break from the monotony but I definitely plan to do my due diligence before ever going on another trip. No last minute trips or discount airlines!
Riaan and Lu’s smiles, wonder, and joy definitely make all of the pain worthwhile although we will never fly through Denver again (the worst airport!). The boys also bonded more with each other in Colorado. Because they didn’t have as many toys, they played together frequently. I’d catch them cuddling and hugging each other, giggling nonstop, and tossing a ball back and forth. It warmed our hearts.
I don’t remember the ordinary days of life as well as I remember the trip days. I’m truly grateful and thankful to be able to make such incredible memories with our Riaan, moments I’ll cherish for the rest of my life. He did so well on this trip, and his strength, resilience, and pure joy give me so much hope for the future. Thank you, Riaan, for the many good times. I love you.
Check Out Our Trip Highlights Video
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