Stories of Wil: True Blue Happiness

Happiness is a denim visor.

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.

As I waited in line at the pharmacy for Wil’s thyroid meds, I glanced at the magazine covers displayed below the check-out counter. A woman on one shiny cover sat cross-legged in a peaceful, meditative pose; mindfulness is the way to happiness. Another shiny cover had a full-page close up of a spotless country kitchen; simplifying your home is the way to happiness. Another shiny cover — this one in black-and-white – pictured a shirtless male weight-lifter; a sculpted body is a sure-fire way that happiness will find you. 

Though nearly every magazine cover touted a way to happiness, I didn’t see a single one with a denim visor. 

At Wil’s Special Olympics golf last Thursday night, the golfers split into three groups: one at the driving range, one at the putting green, and one chipping near the sand trap. Wil and I were at the driving range. As each group made the rotation, we crossed paths with one of Wil’s new friends. She is in her early 20s and also has Down syndrome. I admired her outfit and told her so. She wore a denim visor, and when I complimented her on it she said that a bus driver had given it to her. She then launched into the story behind it. 

I hung on her every word. Her words easily melded from one into the other. There were no pauses; there was no stuttering. It was a good story, and all the better that I could enjoy hearing it from her own perspective.  

Wil speaks in paragraphs, but not yet in stories. If you compliment Wil on his hat, he’s sure to say thank you. He may add that it’s from his grandpa, or his uncle, but that would be the extent of the detail. He has a lot of words to share, but tends to stutter in getting them all out. He’s working on remembering to take deep breaths to slow down his words.  

Every advancement in communication Wil makes, no matter how long it takes, is a thrill. Even the simplest requests that he’s been making for years, like what he wants for lunch, still gives me a smile. When you wait to hear someone’s very own thoughts, and their very own perceptions, it’s nearly impossible to take one word for granted; and I never want to.

A friend of mine in our golf group has a son in his mid-20s with Down syndrome. Her son has had a very recent shift in behavior. Though she has a few guesses as to why, she’s not sure. He’s not highly verbal, so she listens intently to anything he shares with her, be it physical, verbal, or situational. Any type of communication from him could be the key that opens the door to what he is struggling with. It’s incredibly trying and frustrating to want to help your child when multiple communication barriers exist. 

As she communicates her situation to me, I feel her pain. I feel her angst. I know her frustration. It’s exhausting. But on this journey, you can’t get tired. You have to keep going. You have to keep navigating, deducting, and assimilating. Even if you may never see the whole picture, one shared thought from your child is a beacon of light.  

These are not shiny, abbreviated forms of happiness. What we have is a connection and understanding created through inter-woven threads of time. What may appear simple from the outside — a story, a word, an emotion, a sign — is held up by solidarity and strength. Together, we beam brighter under the sun and weather the storms through the test of time.

Just like a denim visor; with a good story behind it. 

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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.