I have heard it said, “It is all a matter of perspective.” As we walk this journey, I am realizing how true that statement is.
The day after Christmas we were blessed with the opportunity to return to Disney World, specifically Magic Kingdom, thanks to a Christmas gift from Joe’s parents. Thanks to the DAS (a disability pass that Peter qualified for) we were able to do all that Peter wanted to do plus more. Peter rode Big Thunder Mountain four times which is his absolute favorite ride. The next day we went back to Give Kids the World Village where we stayed during Peter’s Wish Trip.
Our day at Disney was a fun-filled, jump-for-joy, action-packed kind of day with a lot of walking in between (around 22,000 steps) with over 100,000 other people. Our day at Give Kids the World was slower-paced and a lot less crowded.
At Magic Kingdom, nick named the Happiest Place on Earth, we saw lots of families, and people who were mostly abled-bodied and in pursuit of the next ride, show, meal, or souvenir. At Give Kids the World, we saw Peter’s star, which he decorated and placed on his wish trip 2 years ago. We connected with several other Alumni Families while we were there. We connected with Luke, his aunt, and grandma. Luke’s cousin passed away in May from brain cancer at just 16 years old. They chose to honor his memory by volunteering at Give Kids the World Village and going back to some of the places that he loved from his wish trip. We saw other families some, like us who were back with their wish kid, others, like Luke’s family, were missing their wish kid.
Having the two days back to back was an interesting dose of reality and perspective. For some, the greatest worries at Magic Kingdom were figuring out the lightning lane and getting the best spot for the fireworks. At Give Kids the World Village your very presence at the Village meant your child had a life-altering, life-limiting, or terminal diagnosis. The joy and happiness provided at the Village or by the granted Wish comes at a cost and it is a high one.
Childhood is supposed to be a launch into the future full of possibilities. For Peter and others with life-limiting or terminal diseases childhood may be all that there is. The reality is that I will probably have to plan my oldest son's funeral while his current 4th-grade classmates are planning for college or weddings.
Putting things in perspective allows you to look up and around at others on the journey. The journey we are walking is not an easy one, but it could be harder. It could also be easier and in some ways, things are easier right now. Yes, things could be better, we could have a fully sighted son without Batten disease, but that is not our story. Things also could be worse, we currently are able to make memories with Peter, we can communicate with him, and he is with us, he does not currently have to have lots of medical interventions and treatments. Looking around the village, I was reminded once again to Choose Joy for the moments we have. To be intentional about making the memories we can make. I was reminded to live in the moment and trying to make the most of each one. Today Choose Joy!
