Our family still loves to travel even though traveling with motorized wheelchairs, travel shower chairs & hoyer lifts can be challenging when you fly. It’s even more challenging when you go outside of the US. Whatever challenges we’ve faced I wouldn’t change any of them and I would do it all over again. In the last 3 years we’ve been to Disney World, Chicago, Hawaii, Breckenridge, Destin-Beach trip, London & Paris. We made some great memories & some we would like to forget.
Some of our best moments were going on a movie set in Hawaii where our friend, Anson Mount, was filming a superhero movie called “Inhumans”! We also went on a helicopter tour of Oahu. We found a wheelchair accessible van rental place we use in all 50 US states where they deliver your van to the airport you fly into.
Our London & Paris trip was one we will never forget. We went on a Beatles tour & went to Abbey Road. In Paris, we went to the Eiffel Tower & Arc De Triomphe. London is the most accessible city we’ve ever visited even more than cities in the US. Every cab is mandated to be wheelchair accessible. They use manual ramps but they have to be accessible.
Some of the challenges were in Paris where we couldn’t get into a lot of the restaurants because they weren’t accessible. Jonah also got stuck in an accessible bathroom in Paris where he had to spend 30 mins alone while we got the Parisian police, Fire Dept & City officials to get him out. Most hotels don’t offer 2 queen bed Accessible hotel rooms in Paris or London so we had to get 2 hotel rooms in both cities.
The Chicago trip went great. We went to Star Wars Celebration & got to meet Anthony Daniels who has played C3P0 for the last 40 years. Our beach trip was not as successful as we had hoped. Our beach house was supposed to be wheelchair accessible but we couldn’t get their chairs into the Elevator w/o dissembling their chairs. The Elevator is only for 1 or 2 standing people or for carrying groceries. Misrepresentation of what a wheelchair accessible house is. We also couldn’t get into the house w/o using our ramp we carry with us everywhere we go when we drive.
We tried to spend Christmas in Breckenridge, CO to let the boys enjoy adaptable skiing. Jonah was able to do it and had an amazing time. Emory got altitude sickness as soon as we arrived so we spent Christmas Eve night in an ER in Breckenridge & Christmas Day in a children’s hospital in Denver. Emory was carried by ambulance to Denver Children’s hospital b/c the ER in Breckenridge wasn’t equipped to handle DMD type patients. His heart rate jumped up to 170 & his oxygen bottomed out.
We were supposed to go to New York in June but since that had to be canceled due to COVID we went to Birmingham, Alabama just to get away. It’s getting really hard to travel with Emory’s current situation where he can’t be in his chair for more than 30 minutes w/o being in pain.
Our COVID-19 happened when our boys were diagnosed in 2008. Our world was changed forever & most people don’t realize the difficulties in life until their lives are affected personally. When COVID hit in March it didn’t really change much for us other than travel. We had already been through the life-altering stop your world in its track moment. A lot of people’s lives were changed temporarily with school, sports, or other gathering activities but it will eventually get back to normal.
When you deal with something like DMD or other fatal diseases your life will never get back to normal. We are still trying to live life to the fullest in much smaller ways. We have to get Emory feeling better before we can do much. When you’re “in the valley” we are in at the moment you reflect on the “peaks“ you were on when life was great!