Tomorrow our Disney running adventure begins. It’s a 4am wake-up call to ensure we get to the airport on time for our 7:30am flight to MCO. Luckily we booked with Delta as Jet Blue is taking a vacation. Air travel with a wheelchair is a challenge and getting there early should help make the process smoother.
For my part, I am a bundle of nerves and emotions.
I am nervous about the flight and whether or not William can keep his cool. Managing his chair and special power-assist wheels has awakened a level of anxiety in him we have never seen before. These wheels have been a Godsend and have kept him wheeling on his own for a lot longer than possible with manual wheels. BUT the anxiety, it can be unbearable!!!! He relies on his chair just as we rely on our legs. We’ve talked the plan through multiple times and have worked very hard to remind William he can control himself and that everything will work out. He’s come around lately so I think he is ready.
I am nervous about my event, the 10K. In all honesty I will walk 99.5% of it. I am nervous about it regardless because its 6.2 miles. Luckily I will not be doing it alone!!!
And here’s where the emotions take over… when I got the idea of participating in the Disney Marathon weekend for PPMD and RFOS I never imagined I would be doing it with a team. Wow! I also never imagined that in September 1981, I would meet some amazing friends who would still be supporting me, 31 years later. I can’t express how grateful I am to all of these amazing people. People with their own families, lives and challenges… but these people are special. They have huge hearts, amazing compassion and tremendous empathy. First and foremost the 10K team is Kristina Solan (Berryman), Maggie Bedosky (Novello), and myself. But the team also includes Tara Patti (Gill), not only has she been a rock for me, despite her own challenges, but she also sent us a box of amazing team shirts.
The shirts took me by complete surprise but then I thought, no, that’s Tara! The team includes Bridget Habesland (Andersen), who keeps sharing and reposting our blog updates and pleas for donations. But that’s not all, the team includes everyone who’s donated to our cause; Mt. Carmel school buddies, John S. Burke buddies, Patch American High buddies, William & Mary buddies,… Without all of you, we wouldn’t have exceeded our fund raising goals- yes, exceeded! The team includes our families that not only donated funds but also donate their time and familiness to us constantly. And finally, the team includes everyone who has taken the time to read our Facebook posts or blog entries about life with William and life with DMD.
For Chris and I, the journey with DMD began in pitch black darkness and an unimaginable suffocating despair. You are all candles in the darkness that help us find our way. With great sadness I heard about the passing of a 16 year old young man with DMD this morning. My heart breaks for his family and their loss. It’s everyone’s future, I get that, but 16 is too young and so is 10, 20, 25, 30…These kids deserve more time and by supporting us you have helped bring us one step closer to finding more time for these kids. Thank you.