Go with the flow: A vacation with special needs

by Laura Elizabeth O’Shields

Since the day our daughter, Kylee, was born we have only ever wanted to give her the most “normal” life that we could. We wanted to give her opportunities to experience things that other little girls her age will get to experience. One of our favorite things to do is to take family vacations. However, because we have a special needs child it makes our family vacations a little different from the “typical” family vacation. It takes a lot of prep work to make sure that you don’t forget anything that your child might need. If you forget your toothbrush you can buy a new one from the Walmart on the way. If you forget to pack extra feeding bags you aren’t going to be able to get more from the local pharmacy. I've actually had dreams prior to our trips about me forgetting important things like our passports and medicines. Talk about scary. Being away from home for any length of time will require you to bring a lot of necessary and sometimes unnecessary supplies for your child, but it shouldn't stop you from going.

Two summers ago we took a road trip up the east coast and got to visit many fun and historical landmarks. That trip was probably the most memorable vacation we have been on as a family. The road trip wasn’t too difficult to plan for either. Since we stayed in a different hotel every night we traveled up the coast, I packed accordingly. I packed everything I knew that we would need daily (which among other things included Kylee's monitor and nebulizer) into a large, rolling, suitcase. The clothes that we would wear and the supplies Kylee would need each day were packed into smaller purse size bags. Each day we would bring in the large rolling suitcase, the daily bag of clothes and supplies, Kylee's oxygen concentrator, our fan and some pillows from home. It made the traveling part super easy, because we didn’t have to load and unload our van down every day with everything we brought with us. I asked for handicap accessible rooms, which is important because not all hotels have elevators. Most of our rooms had two queen beds so Kylee slept with me and my son slept with my husband. Of course I would have rather been able to sleep in the same bed with my husband, but it was easier this way and a safer sleeping arrangement for Kylee. Sometimes you just have to go with the flow to make things work so the little things don't take away all the fun.

This past December we went on our first family cruise, which included my parents and my sister’s family. It was nice to have some help on that trip because when we made port in Mexico we had to take a tender (ferry) from our ship to the dock. Because Kylee can’t just walk on, we had to push her in a stroller and also bring with us towels, a change of clothes, her diaper bag, suction machine, feeding pump, and SplashyBig (for the beach), which is a lot for two people to carry. Having extra hands to help was nice, especially when we had to travel by taxi to the beach. Everything had to be broken down, loaded, and unloaded multiple times, which was exhausting. Although, if it had just been me and my husband…ugh, I can’t even imagine. To make sure we had everything that we needed for our 5 day 4 night cruise in the middle of the open ocean we packed 3 large suitcases, 2 smaller duffle bags, a diaper bag, her oxygen concentrator, and her SplashyBig. Their handicap accessible rooms had already booked so again we had to go with the flow. The bathrooms are small, but Kylee wears diapers so it didn't affect us much. Kylee's wheelchair didn't fit through our door, but the staff was accommodating and offered to keep her wheelchair in a storage room for us when we were in our room. We were only really in there to sleep anyway so it wasn't a major let down. The sleeping arrangement in the cruise was much better compared to our roadtrip. My husband and I were able to sleep in the same bed while the kids each had their own bed.

I had been on cruises before, but I was really nervous about taking Kylee on a cruise. We were going to be in the middle of the open ocean with no hospitals or pharmacies nearby. To make things worse she had been hospitalized only about a week prior to us leaving. We had already purchased the travel insurance, of course. Travel insurance will protect your investment in the event you are unable to go on the trip due to an emergency, or in our case Kylee getting very sick. However, Kylee did get better in time and her doctor gave us the OK to go. I am so glad we were able and brave enough to go. We all had an amazing time and can’t wait for our next adventure, which we are hoping will be Australia.

A diagnosis shouldn’t scare us from living life to its fullest. We just have to plan for the planned and the unplanned.