Stories of Wil: With chocolate chips on top

According to Wil, everything is better with chocolate chips!

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.

“Well, you have enough challenges raising Wil.”

I write about the challenges raising Wil, so it’s expected to frequently hear that, and I’m thankful. I used to hear, “Well, he’ll always be happy.” To wrap Wil into one emotion both undermines who he is as a person, and the value of what it means to be his mother. 

There are few constants raising Wil; I live in a guessing game of interpreting his thoughts and ambitions. He very well knows, but he doesn’t always have the words to communicate his thought processes. So I am left hypothesizing, considering, deducing, reaching in and reaching out. One common saying in our Down Syndrome Support Team is: “What worked today may not work tomorrow!” To place Wil in a happy corner is laughably simplistic. He is fully, frustratingly, beautifully, imaginatively, ubiquitously challenging. Aren’t we all in our own multi-dimensional ways? 

I am in daily awe, however, of one constant in Wil’s life. That is how open and loving he lives it. His friends find a level of peace with him. He will never judge them, and that provides an internally settling feeling few other emotions can match. Wil will never grow jaded. Wil remembers slights and hurts, but he doesn’t hold on to them. He travels light. I’m ever the student when it comes to Wil.

Last Thursday night, I sat on the edge of Wil’s bed as I tucked him in and we had a conversation. His school was going virtual again and he’d just had his last day of in-person school for what we hope only lasts 2 weeks. He was feeling sad about not seeing his friends and teachers so we talked it out. Then suddenly he changed the subject. “Mom, pancakes.”

“You want pancakes for breakfast?” 

“No, made pancakes.”

“Oh, you made pancakes in school today?”

“Yes, with Kennedy.” Rachel Kennedy is Wil’s resource room teacher. Sometimes he refers to his teachers by their last names: Campbell, Kastel, Kennedy. 

Then he smiled and held up two fingers. “I made two. With chocolate chips.” 

My heart leapt with joy. That smile of his was for more than just pancakes. It was a smile of connection. A connection made through his own self-initiated words that invited me into his world.  

In Wil’s early school years, there were few words. He would get frustrated, the tears streamed, and he couldn’t tell me why. I could only ask questions, hoping I’d strike something with some accuracy that he would nod to. At times, he would nod for the sake of nodding. He desperately wanted to say yes to something. To connect. So I would hug him and hide my tears, aching for the day he could express his own thoughts. You don’t know the value of a word until you know what it’s like to wait to hear just one, please just one word, that tells me what you are thinking.

I used to believe I knew what optimism meant, but I confused it with positivity. Positivity is rather one-dimensional, as is slapping someone, or something, with a happy label without care to delve deeper. Optimism lengthens with patience. Optimism holds on tight with faith. Optimism searches, reaches, climbs, knowing there is an answer, it’s simply not ready to appear yet. Optimism feels sadness but never stops believing. Optimism rejoices as optimism knows it grows through the challenges.

Yes, I have enough challenges raising Wil; that is the reason I brim with optimism. He’s grown my heart to believe with every part of my being … with chocolate chips on top.

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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.