Stories of Wil: Receiving Butterflies

Wil … receiving a butterfly at Klager Elementary School

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.

I was about two years younger than Wil when I hopped a fence with my friends. The top of the fence caught the back pocket of my favorite jeans and ripped them. I was devastated. Then my mom found a butterfly patch and ironed it over the rip. I loved that butterfly patch. Those jeans, once my favorite, now held special meaning; a memory I hold nearly 40 years later. 

Those jeans, though a simplified analogy, are resemblant to raising a child with special needs. The diagnosis — the unexpected rip. The devastation. 

But you don’t know about the butterfly yet. 

In just this last week alone, I received a text from Wil’s friend, Lila Harvey, sharing a photo of what she called Wil’s “awesome hair.” Wil had piled up his sweatshirt on his head. I also received a video clip from another of Wil’s friends. The video showed not only Wil sinking a free throw in gym class (she told me he sunk two), but also of his friends jumping up to cheer and congratulate him. I received another message that Wil’s Connect friend, Jacob Mann (Connect is a program that connects typically-developing students with students who have special needs), is going to help Wil deliver a joke in the school announcements on Monday. I also received a photo of Wil and another of his Connect friends holding pizzas they had made on English muffins. Thursday night, Elizabeth had a basketball game in Chelsea — Wil entered wearing his noise-cancelling headphones. The ticket taker made a special effort to be friendly with Wil. When Wil and I sat down in the stands, he laid his head on my shoulder multiple times. He’s never outgrown such shows of affection. 

These are the threads of the butterfly. They are not large in size, but they are brilliant in color and meaning. The butterfly is personally delivered with nothing expected in return; the giving as transformative as the receiving. The butterfly is the gift of seeing anew what you once believed to be lost. The butterfly does not take the rip away, nor should it. The process of melding the butterfly to the rip is what creates special meaning; and memories you will hold close for years to come.  

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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.