Stories of Wil: Complex Simplicities

Wil’s recumbent bike skills are thanks to early training. Sometimes a “simple” skill is more intense than it appears.

submitted by Christie Taylor

Wil is a 14-year-old boy with Down syndrome. He is the little brother, by 20 months, to twin sisters, Katherine and Elizabeth. Wil’s mom, Christie, knew very little about Down syndrome when Wil was diagnosed shortly after his birth. It didn’t take long for Christie to realize how enriching life with Down syndrome is. Embracing this newfound life, Christie was compelled to share her experiences with Wil. Christie’s desire, in sharing these stories, is to promote an awareness, understanding, and appreciation of the amazing capabilities of individuals with Down syndrome.

She usually wears shoes to golf but in this heat, my guess is she wouldn’t leave the house without her flip-flops. She slipped off her flip-flops at the driving range and sliced the golf ball just as expertly as she did with shoes on.

She sat down to brush the dirt off her feet. Her bare feet were lifted to nearly chin level. Hypotonia (low muscle tone) allows our kids with Down syndrome great flexibility. The loose dirt fell off, but a dark stain remained on her heel. She wanted that to come off too, but wasn’t able to brush it off. She knows me as Wil’s mom, so I bent down and asked if I could help. She nodded. I poured water from my water bottle across her heel then scrubbed with my hand. She tilted her foot inward to get a better look, but never let her feet fall below chin-level. The dark stain had faded but she shook her head. Not good enough.

I poured more water on her heel and scrubbed again. She tilted her foot inward, took another look and shook her head. Another parent ran up to the golf course’s restaurant to get some napkins. But even those didn’t remove the dirt to her satisfaction. Her dad soon walked over, as he was volunteering on the putting green. By his expression I could tell he knew what was happening. He bent down and had a quiet conversation with her. She finally let her feet fall down to the ground then slid on her flip-flops. Victory! She took her dad’s hand, I waved good-bye and they headed toward the parking lot.  

The next day was equally as hot, but the evening had slightly cooled, so I sat on the back porch and Wil got his recumbent bike out. He expertly maneuvered the handles to make perfect cuts and turns across the grass. Sweat dripped down the side of his face but I don’t think he even noticed. Wil turned his head toward me and smiled every few seconds to be sure I was watching. 

When Wil was a baby he wore tiny lycra biker shorts with the inseam sewn together. Otherwise his legs would flop out as Wil also has hypotonia. The idea of these shorts was to strengthen his hips and train his body to keep his legs in. Every time I watch Wil ride his bike, I’m brought back to those tiny biker shorts.  

Wil clomps heavily when he walks, and has a slight side-to-side swagger. Wil had speech therapy with his friend Teddy this summer. Teddy’s mom and I would always share a smile as Teddy and Wil clomp, clomp, clomped off to the classroom together. 

When Wil was born, I was told by parents who were ahead of me on this journey: “It may be hard to see now, but your life will be so much fuller with Wil in it.” 

That remained stuck in my head because it both struck a chord, and yet felt too abstract. I wanted more details. I wanted to know how my life would be fuller. What did that mean exactly? 

But how do you share with a new mom how endearing a flip-flop stand-off is when she is navigating the complexity of acceptance? How do you explain the depth of joy in watching your child ride his bike when she is navigating doctor appointments and therapies? How do you share the feeling of a deep-down connection in another mom’s smile when she is bewildered by a new journey full of new, unknown people. 

My answer to that now is no more detailed than the response I received over 14 years ago. I had to first embrace the complexities before I fully received the gifts of the simplicities. 

For as little as $1 a month, you can keep Manchester-focused news coverage alive.

by Marsha Chartrand

Marsha Johnson Chartrand, a founder, writer, and copy editor with the Manchester Mirror, is a 50-year resident of Manchester. She has a long history of volunteer and community involvement.