It’s been a long time since I visited this page….3 1/2 years, in fact. It wasn’t until I recently completed the manuscript for my book, Greater Than Grief: Two Brothers Against Duchenne, that I remembered how much I enjoyed the process of writing once upon a time. I’m excited about the book and hope that it finds its audience once it’s published. It was both a pleasure and a blessing to revisit memories, both good and bad. It was cathartic to process through some grief and loss and also to celebrate joys and adventures in this wonderful life we have together while putting words to paper this summer. I hope to regularly be able to visit here and record bits and pieces of our daily narrative, even if only for my private audience of one.
We’re wrapping up a wonderful visit to Gatlinburg, TN tomorrow morning. This time it’s just me and Cory and the boys. With Kaleigh away at college and Gabriel busy with classes and work, we’ve likely seen the end of true “family vacations”, and that’s ok. Neither of them really feel left out because they’re enjoying their own lives, and that makes me so very happy as a mama. Their absence also means that our vacations have a different pace about them. We’re only aiming to find things that two different age groups enjoy, not three. There are fewer of us to house and feed and there are fewer opinions about what the day’s plan should hold.
Don’t get me wrong, I love them and miss the added fun they bring to a family outing. It just that there’s a gentler ease about our day, and perhaps a bit more quiet. Samuel and Josiah greatly appreciate their routine, which we mimic to some degree even when not at home (a little iPad time after lunch, a bit of TV before bed, super consistent bedtime). We also generally take things a little slower. We constantly monitor the boys’ level of fatigue and manage pacing throughout the day to best suit their needs.
For this vacation, we opted not to go on a cave tour due to the number of stairs required, we skip zip lines and ropes courses, and avoid hikes. We watch carefully at the indoor waterpark to make sure they’re not going up the stairs to the waterslides too many times and wearing themselves out for the day. Instead, we went to an arcade for a couple of hours, took a drive through the mountains, opted for a sit down dinner with a slower pace and more time to rest rather than a quick serve meal option, borrowed a movie for them to watch in the room, and spent time in the regular pool and hot tub.
We had decided we’d probably be ok with just taking the jogging stroller to Tennessee. Samuel and Josiah would be able to swap out regularly, and Josiah is still small enough that he can be carried a bit by me, or for a longer distance by Cory.
In regular life, they boys manage most days without any accommodations at this point. We’ve had a medical stroller for Samuel for about 3 1/2 years, and we still have Big Red (the jogging stroller mentioned above). Running errands and doing things around town just mean I park rather close and take a measured pace through the store – slow and steady, no rushing. I also try not to do more than one or two errands at a time, in order to not wear either of them out too much.
The strollers become more necessary on longer outings: the zoo, museums, amusements parks, outlet malls – places that require a lot of walking and standing. We also have a permanent disability parking placard that we use when necessary for those more physically challenging outings or for crazy big parking lots (certainly not wanting to take a spot from someone who definitely needs it), allowing the boys to conserve their energy for the fun stuff we have planned to do instead of using it for the walk to and from the van.
The trouble we’ve had lately is during the outings when I have the boys by myself (depending on Cory’s work schedule availability and the fact that the big kids aren’t around much anymore). They both get tired, they both want to ride, and obviously, there’s no way to navigate with two strollers by myself. They’re too big to consider a double stroller at this point. We have a wagon they’ve outgrown, and besides, together they weigh just over 100 pounds – not so easy to haul around the zoo for hours.
So, we recently ordered Josiah a medical stroller through insurance which is expected to take a couple of months to arrive. Although he still fits in Big Red, he is outgrowing it and a medical stroller allows for more supported posture and comfort. We also purchased Samuel a medical scooter (Did you know that pediatric medical scooters don’t exist? There’s a market for that!) which should hopefully also be here by the end of the year. We did a lot of research and found recommendations for smaller models that are more easily adapted to the size of a nearly 9 year old boy. These will be a blessing to both of the boys in many ways, comfort and space for Josiah and allowing Samuel more independence in general and an overall ease, especially on those outings when I’m the only adult with them.
This week, despite careful planning and spacing activities out and offering plenty of rest breaks in between, both boys were pretty wiped out at the end of each day. We discovered that even switching back and forth to ride regularly and offering piggyback rides didn’t reduce the physical exertion enough. Yep, we should have brought both of the strollers.
The bittersweet set in for me when Cory said today, “This is the last vacation where we’ll have just the one stroller with us.” This means our next planned trip will involved Josiah’s new medical stroller and Samuel’s scooter. Both will offer much more freedom and in theory, allow us to be a more active family. They’ll allow easier outings when it is just me with the boys. However, moving forward there will be some additional burden to be aware of: the level of a battery charge, the space needed to navigate the scooter (and later, a wheelchair) in restaurants, shops and hotels, the reminder that we are traveling down Duchenne’s road – so many mixed blessings ahead.
The Duchenne road is a long road, and we’re still near the beginning of the journey. Every day we’re praying to be able to meet those realities with grace and acceptance every step of the way.
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