I recently had a meeting with a physiotherapist and a wheelchair vendor — over Zoom, of course — to choose a wheelchair for my 5-year-old son. He has outgrown the biggest “regular” stroller available, dragging his feet in the snow when we go for family walks. And although he is able to walk at his own adorable, wobbly pace, his muscles aren’t strong enough to keep up with his classmates when they go on “nature walks” around our JCC, or to spend the afternoon visiting every goat, sheep, and pig at our favorite local hobby farm.
The three sets of wheels I saw were all similar: adult wheelchairs shrunk down to little-kid size. These are ingenious, complicated devices, where every part adjusts, every piece is removable, and every need for comfort and functionality has been considered. And because they are for little kids, the colors are wacky, too: one was bright pink with princesses emblazoned on it, another was electric blue. The model I ended up choosing we jokingly called “the Christmas chair” — usually there is only one accent color, but this chair had been accidentally ordered with red and green accents.
These were only floor models, so we didn’t really focus on color. I asked matter-of-fact questions throughout the meeting — “How heavy is that one? Will he qualify for the carbon-fiber frame?”— as I had only the practicalities in mind. It wasn’t until the meeting was over that it hit me: This new wheelchair is a big deal. It is going to accompany my son now every day. It will change our whole family’s daily routine, how we move through our house, the place we park, the door we use. And this change will be a lasting one: This wheelchair — and the next one, and the next one — will be part of our lives now forever.
I realized this was the first of many wheelchair selection meetings, and it was a true milestone. As a rabbi, I reflexively said a Shehehiyanu, the blessing we say for meaningful firsts: “Praised are You, Adonai our God, Ruler of the Universe, who grants us life, sustains us, and has enabled us to reach this time.”
I am truly grateful to have arrived at this moment. It means that my son, whose disability has affected his eating and physical growth, is growing. It means that he will now be better able to “run” with the pack — which is where he loves to be, always surrounded by friends and in the middle of the action.
I am also devastated to have arrived at this moment. It breaks my heart that there will always be limitations to what my son can do physically. It saddens me that now his disability will be more outwardly visible to a world too full of stigma and ignorance. And it angers me, as a rabbi and a Jew, that some still see real inclusion in our Jewish spaces and programs as a beautiful idea that remains just out of reach, if only we had the funding.
But blessings are blessings — and there is no bigger blessing in this world than my son. So I will say Shehechiyanu to celebrate his unique milestones and life events. This is our family’s sacred journey, and any new device that helps him become his best self, is worthy of thanks.
Header image design by Grace Yagel
