The increases we have seen developing in Tony’s tolerance for new places and novelty in routine have coalesced with his emerging control over his desire to use his body to get to what he wants in a way that allowed us to enjoy a hike this past weekend at Woods Canyon Lake. Perhaps it is the simplest of any mundane thing to some, but to soak in the pine-laced air, to search in the folds of petals for the gasp of a smile…to me, they are moments of life sublime.
Tony certainly is not the only one in this family who had a lot to work through to make those treasured moments possible. Two hours straight we hiked, allowing me also to indulge in the bliss of gratitude. For 18 months I have been working to increase my tolerance for sustained activity with POTS. A year ago perhaps this would have been too much, but I felt I could have hiked further in had we sufficient time to remain there longer that day.
What follows are some pictures, some of them are mine, some are Hannah’s, of what I hope is only the first of many moments where we all as a family can reclaim these activities and invite them more regularly onto our schedule once again. After the pictures I have a couple of notes on adaptations we made to help Tony feel more comfortable with elements he still found challenging.
Photos By Ariana
The frog in that last picture was barely over an inch long, and much cuter in person than in my photo!
Photos By Hannah
The Adaptations We Made
*We took our little man’s kindle so he’d have something to watch in the car, making the multi-hour car drive less upsetting to him.
*Tony remains fearful of bathrooms with hand dryers. We tried to stop in the bathroom at the McDonald’s in Payson, where we bought him French Fries, but there were a steady stream of people using that bathroom (which only had hand dryers). If there is a family bathroom at a location where we encounter this type of situation, we will use that because it eases his concerns since he knows I will do everything I can not to accidentally set off the dryer. And then we will just dry his hands on his or my shirt, and follow up with hand sanitizer if necessary. In this case, there wasn’t a family restroom, so we went to the local Bashas’, figuring that the bathroom there would likely have fewer people using it…and that change helped Tony meet his needs and feel comfortable in the process.
*Our son still struggles some with not slipping while walking up/down sloping areas, so I helped steady him with my own hands as needed.
*Tony didn’t want to turn around initially when we said it was time to walk back to the car. I always carry a bag of skittles with me so I can offer him a treat in exchange for calm cooperation.
