I was always determined to not let MaryEllen’s and Kevin’s limitations hold us back from enjoying family vacations. Leaving the comfort and accessibility of our home was not always easy. With lots of planning though, we did get to visit many places. Disney was always a favorite. And camping. We loved getting away together and forgetting about therapies and doctor’s appointments!
After many successful trips, we decided to take everyone on a cruise to Bermuda. We chose an itinerary that started close to home so we could drive to the ship. (Even with two young and energetic parents, airplane travel with two wheelchair-bound children that could not sit independently was just asking for trouble.)
Before booking the trip, the cruise line required medical clearance for MaryEllen and Kevin. Seizures were well controlled and both children were very healthy. Our pediatrician was comfortable writing a letter indicating their fitness for travel.
MaryEllen and Kevin couldn’t chew well, and ate pureed foods, so we had to make sure that the cruise line could accommodate their needs. We were assured it would not be a problem!
Next, came packing. Packing for a cruise is not for the weak, trust me! Packing for two children with special needs is heroic! In addition to the 299 outfits per person, I packed a week’s worth of diapers, medication, and baby foods. (just in case!) In addition, we had pulse oximeters, thermometers and antibiotics in case of illness. Then, with a deep breath and a bit of faith, we boarded the ship!
First, we met with the head chef. Not only was he was willing to accommodate MaryEllen’s and Kevin’s diet, he was excited to do so! We left it up to him to choose the meals and he outdid himself night after night! MaryEllen loved having a personal chef! From the cold soup appetizers to dessert, everything came perfectly presented and perfectly pureed! Both children devoured pureed Duck L’Orange, Mahi Mahi, chilled strawberry soup and so much more!
The room accommodations were small but sufficient. The bathroom was used for wheelchair storage at night and like bears burrowing in for a cold winter, we snuggled close in our cruise-sized bunks.
It was a first cruise for all of us and we were like curious children with wide eyes as we experienced ocean living. With waves waving and wheelchairs swerving through the halls, we enjoyed every minute.
Once in Bermuda, we traveled by bus and ferry and as much as we could, experienced all the island had to offer. On one of the days, we went to a small, out-of-the-way beach that was frequented by locals. We spent the day under a large, shady tree and before traveling back to the ship, I dipped MaryEllen’s and Kevin’s shirts into the cool water and placed it over their very warm bodies so that they wouldn’t overheat in the hot Bermuda summer. Upon arrival to the ship, both kids were cool and happy.
It wasn’t long before I noticed there was something wrong with Kevin. He was shivering and his little body would not stop shaking. His temperature began to rise quickly. In less than half an hour it rose to 106°. He was beet red and lethargic. I gave him Tylenol and sponged him with cool water. I didn’t want to bring him to see the ship’s doctor. How could I ever begin to explain Kevin to someone that we never met? I didn’t even understand Kevin. How could I explain his baseline to someone else? At this point, he was so far from his happy and smiley self.
“Oh, no, dinner!,” I thought. It was the surf and turf night on the ship and our very attentive chef was waiting for MaryEllen! I called the dining room and explained our plight. There was no way that we would be in the dining room that night.
Before long, there was a knock. Katie opened the door and there he was: A waiter brought the surf and turf special to us! We enjoyed a cozy, yet albeit, stressful dinner together in our room. Kevin’s temperature slowly returned to normal and by morning, we were good as new. Physically.
Emotionally, I was a wreck. How could I bring my medically fragile children away from the comforts of home? What was I doing? Was this vacation for me or was it for the kids? And what about Katie? I felt terrible that she always had to take a back seat to MaryEllen’s and Kevin’s needs.
I couldn’t have asked for a more accommodating cruise line. From the moment we arrived, the crew was exceptional. There was nothing we could have needed or wanted that wasn’t taken care of. It really was the perfect vacation.
It was also the perfect realization: The realization that it doesn’t matter where we are as a family, it matters that we are a family and when we’re together, it doesn’t matter where we are. MaryEllen and Kevin are perfectly happy at home. They don’t feel the need to travel or be somewhere else. Home is where they are the happiest. With us is when they are the happiest.
This was our last far away vacation with all of us. Now, we make home time, fun time. And sometimes, we do go on far away vacations without MaryEllen and Kevin, but that’s another story. And more perfect realizations…