November 2023
by Marlee and Matt Graeser

Might as well get this part out of the way… We are not our best selves while on vacation. There, I said it!

We were thrilled to find out Team Gleason would help fund our family trip to Disney World and the ALS Association helped us with a mobility rental van so my husband could remain in this power wheelchair with ease and comfort.

However, due to a multitude of factors, our trip was much less than a magical experience.

The morning of our departure, our kids were not feeling well. I had considered postponing the trip, and in hindsight, I probably should have, but I decided to go forth with our plans and hoped for the best.

We had a 7-hour drive to our destination; we stopped to get groceries for our week’s stay at the Airbnb before checking in and grabbed carry-out to eat once we arrived at the house (mistake).

We arrived at the reserved Airbnb to find a note on the door stating that the home was now under new ownership, our reservation was no longer valid, and we were not welcome to stay as guests.

I called every number I had and provided every shred of information I had to find out what was happening. No one could give me any information since my name was not on the reservation, and I was only listed as a guest. It was after hours for Team Gleason, and I could not get ahold of our adventure representative, who made all our reservations for us.

Mind you, I had just driven 7 hours with three sick kids, a husband in a wheelchair, no one had eaten, and everyone had to use the bathroom.

The demands were ultra-high by this time, and I had no idea what was happening or what to do.

I talked to the community supervisor and was advised to leave the property immediately as I was not legally permitted to be on the property. To say I was overwhelmed would be a complete understatement! Looking back, I am almost certain this was when my brain and body decided it was time for the breakdown. I started crying and could not stop. For the first time since my husband’s diagnosis, I had felt this way, and I had no control. In retrospect, we had a super heavy week before leaving, with highly stressful appointments every day leading up to our departure, which I’m sure played a significant role in the following situations. It was 8 pm, 7 hours from home, hungry, no bathroom, nowhere to go, and I, who always keeps everything together was a mess.

For anyone with a family of five or more, you already know the struggle of finding a hotel room to accommodate the family size… now let’s add the requirement of needing it to be wheelchair accessible during a holiday week in Orlando to the mix.

With this disease, ALS, as caregivers and as a family we learn the impeccable quality of adapting at a moment’s notice, and that’s precisely what we did. I collected myself, pivoted, and adjusted our plans.

By grace, I found a room about 40 minutes away from the parks, wheelchair accessible, big enough to fit everyone comfortably, and with a full-size refrigerator, so I didn’t have to throw out any groceries I had just purchased!

We had scheduled to spend the next day at EPCOT. Pretty sure the weather was accurately reflecting our trip as it rained every day and all day while we were there, but we got some pretty awesome ponchos! We were so excited to try out every place for the International Food and Wine Festival; however, due to illness and rain, we did not get to enjoy as many stands as we had hoped.

We were pleasantly surprised by how many accessible rides there were available that did not require transfers. My husband could go on almost every ride we had planned, besides maybe 2 of the more thrilling rides. Seeing the kids enjoy the wonderment with their dad was so cute. I say this after every trip: I wish I had gotten more pictures and videos!

I am SO glad I planned for a rest day! Day 2 was enjoyed in our hotel room catching up on sleep and loading up on cold medicine. We enjoyed dinner at the T-Rex Café at Disney Springs, and everyone got to pick out a toy from the Disney Store afterward.

Day 3 was Magic Kingdom Day and another day of rain. This was the kid’s favorite day! Not so much for my husband, as there are not nearly as many wheelchair-accessible rides at Magic Kingdom, at least that do not require transfers. We were also surprised that he couldn’t even wait in line with us for most of the queues. I felt awful! But he kept reassuring us that this day was for the kids, and seeing them happy made him happy and was all that mattered.

Since we had to adjust our plans at the last minute, the hotel room I found was only available for three days, so I had planned on cutting our trip short since I couldn’t find more availability. Again, we pivot and adapt. We still decided to leave Orlando early but stopped to stay a night in St. Augustine.

My husband and I had visited St. Augustine before for our wedding anniversary where we went to the St. Augustine Distillery and hand-poured a bottle of bourbon. It has since been immensely enjoyed and is now empty, so since our anniversary was in a few days, we decided to stop and celebrate early by getting another bottle.

This last-minute, impromptu stop was the absolute highlight of our trip. We hand-poured another bottle of bourbon, signed and sealed with our signatures and wedding anniversary date.

The next day, it was time to go home, and the sun was shining!

We decided to stay a little longer and indulged in an afternoon soaking up the warm sunshine while having lunch with wine tastings at a rooftop winery with live music, and the kids did grape juice tasting.

It was the perfect ending to our trip.