A Love Story

The girl stood behind the hospital wheelchair and clasped the narrow top of the plastic seat. Her mother, standing beside her (both about the same height) grabbed a handful of the girl’s pale blue shirt, directly at the small of her back, and wrapped it tight around her fist. The girl stepped forward, wobbly and deliberate, landing each step on the outside edge of her shoes, with a deeper bend in her left leg. I would guess the girl to be fifteen or sixteen years old, not solely by her height, but by her desired independence – her mother’s expert grip allowing for this. 

Further down the hallway the mother asked, “Are you hungry?” The girl nodded. “Well, let me push you then.” The girl kept walking.

“I know you don’t want to sit,” the mother said, “but we can get to the car faster for lunch. Come on, we’ll play race car.” The girl conceded, and supported herself along the edges of the wheelchair to take a seat. The mother grabbed the black-capped wheelchair handles and sped forward. 

Just last week I left Wil home alone while I took his sisters to school. Wil was stuck on which hat to wear. He’d been sitting in front of his plastic bin of hats for 20 minutes. “Sorry, Wil, time is up,” I said. “I’m taking your sisters to school because it’s not fair to make them late. I’ll see you in a few minutes.” He looked up at me and back down again, but didn’t budge. 

On our drive to school Elizabeth asked, “How late do you think he’ll go to school today?”

“Your guess is as good as mine. When I get home he’ll either still be stuck on the floor, or blasting his iPad to Luke Bryan thinking he has the day off, or running away in the back field.” 

When I turned the car back into our driveway, Wil was seated on the porch steps. His coat and backpack were on – he had put them on himself. Wil’s morning, though wobbly and deliberate, was also deeply triumphant for these things. 

It is easy to grow impatient, as hesitations are built into our everyday – I understand the wheelchair race car game well. I was having coffee with my friend, Laura Walsh, whose son Manny is also a teen with Down syndrome. We were sharing stories about mornings with our boys. Manny was taking his time getting dressed. “Put your freaking shoes on already! I wanted to scream. But of course, I took a deep breath and was calm.” We laughed so hard over that. Our patience may seem supernatural on the outside, but some days our brain begs to put the pedal to the medal. 

Our stories have been looked on with pity or sorrow. Our stories have been dismissed with careless derogatory words. Our stories have been seen as reserved only for “special” people. But when you really take a moment to observe, though our stories of navigating independence with our children may look different, in our own ways we are all wobbly, hesitant, deliberate, impatient and holding on tight to what we love, even as we let go. 

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