With my family's fifth Disney trip just under a month away, we've been talking a lot about how excited we are to go, since every trip prior has been great, and the upcoming one promises to top them all, considering my improved health and the ever increasing excitement displayed by my son, who, now that he has seen the original film, will go bonkers over the Star Wars attractions, in addition to all of the things he loved last year. (That was one long, run-on sentence, and I'm not changing it because Disney excitement is the second leading cause of run-ons after "being in 9th grade.")
While I was on the transplant waiting list, my family went on two trips to Disney World, but I was only able to accompany them on one. Long before I was dealing with the initial tailspin of the "last straw" exacerbation, filing paperwork to go on medical leave, and making all of the other adjustments everyday life required afterward, we'd booked an August trip to Disney World in 2013. About four months before the trip, it was clear that I would not recover enough to be flying to Florida and ambling around the Happiest Place on Earth. Once we knew my attendance on the trip was completely out of the question, we needed to make changes. Our number one priority was to still get my son, who was five at the time, to Disney World that summer, in keeping with our overall goal that my health situation should have as little impact him as possible. We were very grateful that my wife's mom agreed to fill my role as second adult on the trip. Since our plane tickets had been paid for as soon as we booked them, there was no way to avoid having to pay the full price for my flight, even though I couldn't go on it. The airline insisted that transferring the ticket to my mother-in-law was not permitted. So, it cost us three hundred dollars for a flight I never took. However, Disney was much more accommodating about making changes to our vacation, and since we reduced the overall trip from a 12 day affair to just a four day jaunt, we saved money in the end.
I drove my family to the airport and saw them off, honestly just glad that everything had worked out and my health situation hadn't imploded the whole trip. Not only was my son excited to infinity and beyond, my wife's hard work in planning for the trip had not gone to waste. She scours every Disney blog looking for every Disney deal in every Disney nook and cranny of the Internet, in addition to expertly making a flexible plan of what we will do in which park each day of the vacation. In the big picture, me having to miss the trip was certainly not the worst possible outcome.
In spite of my absence, my wife felt like she had a good handle on everything, until my son disappeared from sight while she took her eye off him for a moment to order breakfast in the airport's McDonald's. As the typical parental panic shot through her, one of the employees noticed that he had hidden himself behind a large sign. Too young to realize when it's the right time to pull a "find the five year old" practical joke, he gave my wife and mother-in-law the biggest scare of the trip, but, thankfully, not a preview of what was to come on the vacation. That was the only moment where my wife felt "understaffed" during the entire excursion.
I spoke with them frequently and was sent numerous adorable pictures of my son having a great time. I handled my inability to join them well, believing strongly that it was the best solution to a bad situation. Thankfully my wife waited until she and my son had returned home to tell me that, on the final day of the trip, with some time to burn before it was time to head to the airport, she asked my son where he would like to go next. His reply was, "I just want to go home and see my Daddy." I was grateful she didn't share that with me until I already had my arms tightly around him.
We knew that any future Disney trips would require me to have an enhanced means of mobility, and we were relieved that my insurance approved a scooter for me to use in early spring of 2014. In addition to allowing me to accompany my family on local adventures to the zoo and whatnot, the scooter was an absolutely crucial part of the Disney trip. We had driven to Disney World on one previous trip, so it was not a big adjustment to be forced out of the sky and onto the roads by the scooter, which we took apart and stored in the back of our van during the 16 hour drive. Our research had indicated that the Disney experience as a disabled person with a scooter would not be too difficult, so the most nerve-wracking aspect of the trip happened before we left-- putting myself "on hold" on the transplant waiting list. Any time we planned a trip during the time I was on the list, we factored in how far it would take us from the University of Michigan. Any further than four hours, and I would have to go "on hold," since I would be too far away to reliably make it to the hospital in time to be properly prepped for the surgery. In-state trips were generally no big deal, since everyone in my wife's family and my own live within the four hour window. Even places like Traverse City, which we go to annually, were within the radius. Since we had not done so prior to the Disney trip, and I'd adjusted to the base level tension that every U of M phone call brought with it, the prospect of going "on hold" required a psychological adjustment. The first element of that was realizing that, in theory, a viable match for me could be found while I was in Florida. However, this would be an excellent example of "ignorance is bliss," because I would never want to know if I'd missed a chance at having the transplant, so I didn't plan on asking any questions once we got back. The other adjustment was realizing that there was no chance of our trip being affected by "the call." This was a pleasant shift from all the other excursions where a holiday dinner, a birthday party, or a leisurely trip to mall could suddenly become a high-tempo drive to the hospital.
As for the experience in Disney itself, our seven days there were marked by incredible accommodation. Getting on a bus with a scooter is as simple as one would expect, and every driver was adept at locking it in securely while I found a standard seat on the bus alongside my family. The one and only hiccup, if one can even call it that, is that upon entering the guest services center at the Magic Kingdom, which was the first park we went to, they asked me why I needed the pass they offer to handicapped guests. I had to chuckle as I sat there on a scooter breathing oxygen through a nasal cannula. Perhaps asking the question is a requirement regardless of how visible the disability is. They issued me a card with my picture on it, which we only needed to show on one or two occasions, since my need to go to the front go the line was quite apparent to all of the cast members working at all of the parks. What surprised me most were the alternate access point for the attractions which had, on my previous trips, seemed inaccessible to patrons with disabilities. The one that comes to mind most vividly is Toy Story Midway Mania, which always has a mile long line and people sprinting to the Fast Pass kiosks. To enter the ride, you walk through a winding corridor, up two different sets of stairs, and then back down them. If you are on a scooter, however, you bypass all of this and enter the ride on the other side of the ride entirely, where you can park your scooter and hop on without any trouble whatsoever. I was very grateful that, whenever I needed to be ambulatory, my portable oxygen system, Disney's accommodations, and my own physical abilities allowed me to be up to the task.
One of the biggest unknowns we faced on the trip was battery life. I had gotten a good idea of how long the portable oxygen concentrator battery would last, and knowing that I would be sitting rather than walking most of the time, I could keep the liter per minute flow a bit lower. This extended the life of each of the three batteries I had (one was an "extra" on loan specifically for the trip) and with each one lasting about 3 hours, recharging on the go was hardly ever needed, and when it was, a place to sit down near an outlet wasn't too hard to locate. The true wild card was the battery life of the scooter itself. Since it was relatively new to me and I had never used it for more than an hour or so at a time prior to the trip, we were unsure of how it would hold up to maximum use at Disney World. We were very relieved that the battery never even approached the "danger" level when we were out and about, and an overnight recharge was always enough to get us where we needed to go the next day.
As we drove north headed for home, we looked back and agreed that, improbable though it was, the vacation during which I was the most physically compromised and least mobile was also the best Disney trip we'd ever been on. A large part of this was due to our family's mindset-- that we would make this work together, and regard any stress created by my health as minor issue which would be easily offset by our amazing experiences.
My wife, son, and I are eagerly counting down the days until our next trip. I will not be surprised if our travel journal is comprised of one very long and very excited sentence.
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