Stories of Wil: I Wanna Hold Your Hand

Wil and Woody on an “adventure.”

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.

Wil recently lugged the karaoke machine from our basement, plugged it in his room, and blasted his “Music Together” CD. Wil also navigates YouTube like a pro and blasts his favorite country music videos. Though I need to keep an eye on his searches for “kissing.”  

Wil demands hugs every morning, watches PBS Kids, is very particular about the clothes he wears, rolls his eyes at me and uses the word “embarrassing” though he himself lives without fear of embarrassment.

Wil is a full-on teenager with a healthy dose of youthful innocence. That is part of his charm and his individuality. It’s also very interesting to navigate as a parent. I wonder on what his young adult years will look like.

Wil goes outside on “adventures.” He grabs his wagon, walks down the property line and collects sticks. He greatly enjoys this natural independence. He also has low muscle tone and low thyroid, so this type of activity is beneficial to his physical well-being. However, there is a level of danger Wil only partially understands. Sometimes his adventures take him too far. Though Matt and I have talked to him at length about this, he occasionally goes on adventures without telling us.

Just yesterday, Wil disappeared. We all split up to head to the places he usually goes. I ran out the back door to find Wil crouched in the bushes along our property line. He stood up and walked toward me carrying a large branch. 

“Look, Mom!” He was proud of his find while my heart skipped a thousand beats.

A friend recently shared that her niece, Tina, has Down syndrome. Tina is 23 years old and wants to marry her boyfriend. Her boyfriend also has Down syndrome. Tina and her boyfriend each have jobs and live at home with their parents. My friend explained that Tina’s boyfriend has a higher level of independence than she does. Tina’s parents, though always supportive and proactive when it comes to her independence, are very concerned about this next step. They do not know if Tina fully understands the next level of independence she is asking for.  

Every year Wil grows in leaps and bounds. Questions and concerns I had about him only a year ago, Wil answers himself in time. But that is also the challenging piece that makes my heart skip a thousand beats. Like Tina’s parents, I prepare for and open doors for him, and he opens many doors for himself, but he may still need a hand to hold through some of them.

Suddenly I have the urge to play “I Wanna Hold Your Hand,” on Wil’s karaoke machine while he rolls his eyes at me and tells me I’m embarrassing. 

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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.