Sometimes I forget just how much time we spend in the same circles, rotating from school to therapy to church to family/friends’ houses to familiar places and back again. And then we hit a new spot, go on vacation, or change up the schedule and I realize just how many second glances Joel’s wheels rack up in a day. Obviously a cute little boy with adorable specs and the wavy locks of a hair model could attract attention all on his own, but the shiny red wheelchair with light-up wheels seems to be a huge draw. (Occasionally I tell myself it’s his overtly witty, chic mother who causes the staring, but I suppose that’s not quite it.)
I’m still working on my stock answers to the whats-and-whys that curious souls ask about our Super Joel. Thankfully they’re mostly children who ask questions with such an earnest inquisitiveness that I’m fairly good at answering them with a smile. One precious little fellow at the museum recently surprised me with my first, “What happened to him?” He was likely equally surprised by my answer of, “Nothing.” His mother thanked me for my patience after I then mumbled something about how he just uses wheels to get around.
I understand, truly, because the equipment (wheelchairs, gait trainers, standers, harnesses, communication devices — all of it) used to intimidate the heck out of me. I nearly cried the first time a therapist strapped Joel into a wheelchair. I thought no one would ever notice my handsome little guy again because they’d only see his gear. I worried about the barriers created by the things designed to help him. Then, over time, I realized:
Equipment = Freedom
When I see him fly down a familiar hallway in his wheelchair, mischievous grin spread across his face, I’m just as proud/terrified as I was of his big brother’s learning to run. When I see him execute a perfect 90 or 180-degree turn or work his wheels on grass I’m amazed. Oh, and it’s kind of impossible to ignore his handsome (in my extremely biased opinion)!
Along with the excitement of school starting, we’ve been lucky enough to receive some new gear for Joel in the last two months. His wheeled stander arrived, which is really just a shinier version of the one we’ve had on loan from Children’s. But this one is his:
We’ve also been working on integrating a new communication switch into Joel’s daily routine. Our hope is that, together with the switch we purchased last year, it will help him learn to express his choices more clearly. Just last week his supportive bath seat was delivered, making bathing Joel a one-parent non-contortionist job. And a relaxed, happy mom/dad means that Joel loves bath time now more than ever!
Of course, we have our eye on more new gear in the coming year as well. Below Joel tries out a gait trainer at school. (This shot captured by Luke’s fabulous Kindergarten teacher who also knows quite a bit about being a Children’s Hospital frequent flyer family.) Joel has also become a big fan of riding bikes at Perlman, and I can’t believe how quickly he’s learning to propel and steer :
Last week, when Joel took a mommy climbing/snuggle chair break at the soccer field, little friends of ours happily climbed in and out of Joel’s wheelchair, trying out the various straps and grinning at its comfort. I marveled at the simplicity of the moment…what’s more typical than kiddos checking out each others’ wheels?
It’s just gear, after all.
Bonus: Two of my favorite guys…Joel and my dad. They like each other quite a bit too. xo