The Parent's Corner

Don't Let CFS Rob Your Family of Vacation Memories:

Disney World - A Vacation of a Lifetime

by Mary Robinson, MS Ed

Published in Lyndonville News, May 2001

Every so often we are fortunate enough to do something that leaves an indelible mark on our soul. Something that affects us for a lifetime with memories that can be pulled out to brighten even the darkest days. This may sound really hokey for some of you, but for my family one of those times is our family vacation to the Magic of Disney.

Like many young families ours had planned this vacation for years. It was to be taken when our youngest was old enough to remember it, and our oldest not too old to hate a vacation with family. But something happened that put a wrench in our plans: CFS. It struck when our youngest was 4 and gripped our family so tightly that the Disney vacation was put on hold for years. The kids asked and asked and we just kept coming up with one excuse after another. Spring breaks would come and go and our sick kids were so bad that we knew we could never go then, not to mention the crowds. But maybe we could go in the summer? Again the crowds would be awful, but the heat would be impossible for our sick children to endure. So we waited and waited and waited and one year melted into another while we waited for our kids to get healthy.

Then something wonderful happened. I heard from several families who had kids with CFS and had gone and had a wonderful time. One family actually had their trip funded by an organization that helps chronically ill kids have their dreams fulfilled. We were tired of putting our dreams on hold because of this illness so we embarked on planning and researching to see if it was a doable get away for our family.

First we looked at the time of year and realized that fall was our best bet healthwise. It also coincided with the best season of the year where attendance and prices are lowest at Disney. We would need to go before the November CFS slide started to kick in, so we picked Columbus Day weekend. My husband, a High School Guidance Counselor, talked to the superintendent about getting some time off from work and explained our family situation. They offered him comp days in the summer so he didn't even loose pay.

We purchased a book that had been recommended to us by friends and became our bible to a wonderful vacation. It is titled The Unofficial Guide to Walt Disney World, written by Bob Sehlinger. He updates the book each year and includes everything you would want to know about this Florida Vacation. Hotels, area attractions, weather, costs, saving money, best time to arrive at the parks and what rides to hit when…it's all there. By planning months in advance we were able to really make the most of every minute we were there and never had to suffer a CFS setback.

Our first decision was transportation. We opted to take a direct flight to Florida as we knew flying could sometimes be a problem for folks with CFS, and we wanted to minimize take offs and landings. We were fortunate to get a direct flight and the best fare all in one. Though we were staying on the Disney Property so that we could easily get back to our room as often as needed, we also decided a rental car was a necessity. This enabled us to get Meg back to the room as quickly and efficiently and also as often as her needs dictated. We took our handicapped parking permit, which enabled us to have the best parking available at the various parks. For getting around the parks we realized that having Meg's personal wheelchair was a must. While you can rent wheelchairs at the different parks, you can not take them between parks. And the walk from the entrance to the car was quite a haul, even with the handicapped parking.

As I stated above we decided to stay on site, at a Disney Resort. The cost was very reasonable, the same or cheaper than many off site hotels, and for all that we got in the amenities that being a resort guest provided, it was well worth the price. We had access to 2 themed swimming pool areas, 6 other pools, food and shopping a walk's distance from our room, bus transportation to anywhere in the Disney compound, and also free shuttle by boat to and from many places. And it provided the magical touches that only Disney can provide.

Our goal was to do as much as we could each day, with rest breaks built in when needed. We took walkie-talkies that proved to be of no use, as there were so many people there with them, the frequencies were always in use or jammed. If I were to go again I would rent the pagers that are available, or take 2 cell phones. We realized that we may often need to be separated and we wished to be prepared ahead of time for this. We did have one cell phone, which proved useful to us in keeping touch when one of us had to return to the room. We also could call from a pay phone in the park to the cell phone if needed to make plans to meet.

We also planned out our days ahead of time to minimize standing in a park exhausted wondering what to do next. In the Unofficial Guide it gave suggestions for which days are least crowded at which parks, which ones open early and when the best time is to ride which rides. We were able to take their suggestions to rise early every day and arrive at the park prior to opening. Their insight into the practice of early admission every day, held true and got us into all the parks with little to no waiting. I have spoken to other families with kids with CFS who opted to sleep in and take to the parks later in the day. This too works well, especially when you are on the grounds and can do this. Part of the family can go early and a planned rendezvous can take place later, when the late risers are up to facing the parks.

We took advantage of the grocery store across the street and the in-room refrigerator to keep food in the room. In this manner we saved time, money and limited energy by eating in our room for breakfast and many lunches. We would be up early, eat, and be off to the park and on several rides before many in the resorts were even out of bed. Then when the parks started to fill up, we would either go to a lake or pond to relax or head back to our room for a nap or relaxing snooze in the shade by the pool near our room. After a few hours off we would again head back to the park to take in another round of rides and fun.

Walt Disney World has a wide array of tickets available to the vacationer. If you have not been to Disney World in a while you may not realize that it is now 4 different theme parks in the one resort. There is the Animal Kingdom which takes you to far off Africa and beyond; Epcot, where you can taste the dozens of cultures around the world and also check out the latest in today's technology; MGM Studios where you get a phenomenal tour into the cinematography and other areas of filmmaking; and finally the original and all time favorite Magic Kingdom. You can buy individual tickets for the park you wish to see and go to that park for the day. We opted to buy their Hopper passes, which allowed us to go into all 4 parks each day. On a hopper pass you can go to the Magic Kingdom in the morning, go to your room and rest and then hit MGM studios in the afternoon. A 4-day hopper gets you into any park for 4 days. You can not stretch it over more than 4 days, but you can go into any parks for 4 days. And the days do not have to be consecutive, so if you have the time we would strongly urge you to take a day off in between and just lay low at your hotel's pool or do easy sight seeing. There are other passes available and surely one to fit your families needs.

Taking our daughter's wheelchair proved to be the smartest decision we made, and is probably what saved her on this trip from overdoing it. There was a real bonus to the wheelchair though, that we hadn't counted on. When you are traveling with a person who needs special assistance on the rides the entire party gets to go to the front of the line for most rides. We found this a real plus to having the chair with us. They are used to wheelchairs and bend over backwards to accommodate the party. They do it all the time and were very kind and helpful. They have separate entrances so that you do not have to push ahead of others waiting in line. There are also handicapped viewing areas for those in wheelchairs and their families. We did not have to worry that we wouldn't have a good location for the many parades or fireworks shows as we simply scoped out these areas and secured A plus viewing for everything. We also found the chair a good place to carry our backpack that we converted for the wheelchair. It hung off the back and held everything we could possibly need. We had heard that some rides and shows were very loud so we packed earplugs for them. We also carried strong sunscreen, rain gear, hats, cameras, and water bottles. Family members carried belt bags with their money, snacks and ID. We brought along a small video camera and not only taped our days, but also many of the live shows and fireworks. It is magical to be able to watch these shows again and relive the most magical vacation we ever enjoyed.

We were only able to spend 5 days in Florida, as that is all the time we could afford and manage. But it was truly the vacation of a lifetime for our family. And to think that we almost let CFS rob us of this wonderful vacation. By planning ahead for our children's needs, and by planning for many breaks to be taken as needed we were able to do just about everything we wanted to do. We were not able to do as much as we would have been able to take in if the kids were all healthy, but that didn't matter. (My husband and I were too old for that much anyway.) All were happy and satisfied with our vacation.

If you have a child with CFS I urge you to consider some kind of get away for your family. By planning ahead you can plan for the best time of year, the best accommodations, and something that fits your budget. We have used many of the things we learned from this vacation on other family getaways and it has opened us up to being more willing to attempt other family get aways. Even a day trip is easier and more enjoyable if planned for ahead of time. With lots of planning even Disney World can become a reality.

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