January 2006

January 2006 – It’s time to comment on a part of my life that baffles many of my friends and family – my obsession with Disney! My husband and I are avid Disney fans and we both adore Disney World. Like any self-respecting fanatic, we are raising our daughters to have the same passion for Disney! This would be my 9th trip, Tim’s 7th, Amanda’s 4th, and Sara’s 2nd.

This trip was different for us than any other trip we’ve taken because Amanda was pretty much stuck in a wheelchair. The injections from August were either wearing off or they didn’t control the pain and inflammation as much as they have in the past. She had a fair amount of swelling and heat in both knees and both ankles. Anyone who has been to Disney knows that you can’t go there and not expect to do a ton of walking! Tim and I had a discussion with Sue the physiotherapist and she agreed with us that a wheelchair might be necessary. Extensive walking wasn’t the only concern. Standing in lines for any length of time would not be good for Amanda’s sore joints. So we booked a wheelchair from an Orlando-based supply company and they had the chair delivered and waiting for us at our hotel.

Now, I had extremely mixed feelings about doing this. I knew that, Disney being Disney, provision for wheelchair-bound guests would be outstanding. I felt extremely guilty putting Amanda in a wheelchair and taking advantage of that exemplary service. Anyone would look at Amanda and wonder what the heck she was doing in a chair. I know that it isn’t immediately obvious to anyone what is wrong with her. That’s one of the reasons this disease is so insidious – you can look perfectly fine and healthy on the outside but be in agonizing pain on the inside. I decided that I had to get over that guilt – no one does guilt like us Catholics! – and do what was best for Amanda.

Amanda wasn’t too pleased with parking her butt in the chair. But I gave her two arguments. We had spent a lot of money on this trip and I wanted her to enjoy it. While being stuck in a chair would be sucky, she also would not be getting too sore. What tends to happen is Amanda will get “over sore” and it takes a while before the pain subsides after we give her additional meds or ice/heat her down. I didn’t want her to overdo it and pay for it later. And my second argument was to put it in perspective. The only reason she was in the chair was because we were in Disney. Look around – there are more than a few very obviously disabled kids in wheelchairs who wouldn’t be getting out of them any time soon! So suck it up princess – you’re in Disney World!!

My assumptions about Disney service proved to be right – their treatment of Amanda was impeccable! While she was able to get out of the chair to transfer to the rides, every cast member we encountered made sure that it was done quickly and safely and with minimal bother. We were often able to take the chair directly to the seating area where there were benches provided for us while Amanda was able to stay in her chair. I can’t enough good things about them. They were awesome – certainly not treating her like she was disabled in any way. Our trip was amazing – weather was great, the crowds were low, and Disney magic was in plentiful supply! Unfortunately the clouds were gathering on our return.