We Honour the Boy Who Had the ‘Will’ to live…

By: Katie Simons, Will Simons’ Mum

Our son, William Anthony Simons, came into the world just seconds after his best bud, Luke Ryan on October 11, 2011. Our lives were forever changed. In just seconds these two little boys made us parents. And for 5 years and 5 months, Will lived life big.

Will was born with a congenital heart defect, Hypoplastic Left Heart Syndrome, and lived his entire life with only half a heart. 5 years and 5 open heart surgeries; Will overcame many obstacles. At 10 days old, Will underwent his 1st OHS, the BT Shunt and nearly died as a result of a clot in his shunt and two subsequent cardiac arrests. Our baby fought to come back to us and after 3 complex months in the hospital we got to bring him home on Christmas Eve.

At 6 months old, Will underwent his 2nd OHS, the Glenn, and despite some minor setbacks, he thrived! He played and fought hard to catch up to his twin. He grew into a beautiful toddler and became a big brother to Nicky. Apart from feeling his scars at bath time we forgot about his heart. At 3 ½ years old, we made the trip back to SickKids as Will underwent his 3rd OHS, the Fontan, just 5 weeks after becoming a big brother to Owen. His body disliked the physiology. He remained in and out of the hospital for 6 months until the team decided he needed to have a rescue surgery. His Fontan had failed and needed to come down.

4 months after his Fontan, Will underwent his 4th OHS to take the Fontan down. He began fighting his biggest uphill battle. These post Fontan surgery days taught us to embrace the day. Will taught us to love the simple things and to cherish the time we had. He got to go back to school, ride the bus, and began to make some friends.

Then he started slowing down again. Just 10 months after the surgery of his life he needed to have his narrowing shunt upsized. For the next 8 months, his last 8 months, he lived life big by enjoying the small things. He became a senior kindergarten student, spent more time with his brothers and learned he would be a big brother again; this time to a sister. “Mummy I’m es-cited to meet Annalise. I can’t wait!”

He dreamed of growing up. He asked us if we would come to his wedding. He told us he would live in the house next door. We all dreamed about his future. Then on March 7, 2017, just 3 days shy of his 6th  OHS, Will died of a severe cardiac event, in our home, in his Nanny’s arms, after a play-filled morning with his 3 brothers. Our lives were shattered. The boy who showed us tremendous ‘Will’ to live, had become our guardian angel and ‘will’ed us to keep moving, to keep living, despite our tremendous heartache.

We called him Son. Brother. Best friend. Grandson. Nephew. Cousin. Strong. Brave. Kind. Loving. Funny. Generous. Forgiving. Resilient. Warrior. Will lived with half a heart and double the spirit. Will was not a victim to circumstance. He did not lose a battle. Quite to the contrary. Will lived every one of his 5 years and 5 months with purpose. He lived life big by enjoying all of the small things most of us take for granted. Spending time with his best buds, and brothers. Imaginative play for hours at our hutch. Paw Patrol Marathon’s with a big bowl of popcorn. Watching the stars emerge at night, while singing, “Down by the Bay” around the campfire. Watching home videos. And above all, he taught us to love life. Be kind. Forgive. Have fun.  Keep going. Because he had the ‘Will’ to live everyday.

He touched our lives. But he also touched others’ lives. Not coincidentally, at his funeral people repeatedly recalled his smile:

“I remember Will’s charming smile! When he smiled at you, you knew you were really loved.”

“[…] I was walking beside Will and he slipped his hand in mine. When I looked down, he gave me the biggest smile and held my eyes. I was filled with such a feeling of joy and blessing. I felt an acceptance I rarely feel when I am with people.”

“Will is a huge inspiration to me. The definition of a Warrior.”

“Will always smiled. He was the happiest kid. He could have complained and he never did.”

“Will. Beautiful child! Thank you for all the lives you touched and the joy you brought to the world.”

We hold onto these words. We cherish them. We have gratitude for the people who spoke them. Gratitude for our community; a community that rallied behind Will during each of his OHS, and rallied behind us as we were left to pick up the pieces of our broken hearts after he died.

The same can be said about our school community. It has been 3 months since Will walked the halls of Holy Name, but his spirit is still very much alive. Principal, Mr. Brent Langen recalls Will’s laidback disposition, “On most mornings, Will was one of the first children to connect with. There was so much to love about Will, but it was his sly little grin that I remember most clearly. Far from sinister, the grin seemed to say- “I’m not taking things too seriously, so maybe you shouldn’t either.” Mrs. Lori Burlingham, Will’s Education Assistant recalls Will’s beaming smile as she greeted him off the bus and his trickster ways, as he would say to her “Good morning Will,” and wait for her reply to him, “Good morning Mrs. B!” Will’s teacher, Mrs. Jennifer Keene fondly remembers “how he used to take his smiles and give them to me to store in my pocket, “just in case someone else needs a smile,” he would say. “I remember the time I caught him in the school washroom (sitting on the toilet) singing, ‘Let It Go!’ and the time he said to me, “You’re a silly crazy teacher Mrs. Keene!” Though his absence has been 3 months long, the Kindies are far from “over it.” Much like the staff, Will’s fellow-Kindies remember their little buddy all day long. They have a bear they named Will. They take ‘Will’ bear to the carpet and to the table for snacks. ‘Will’ bear has a rest after recess, much like Will did, because “he’s a little bit tired.” The children are working through their loss with play and find comfort in role playing with their beloved ‘Will’ bear.  He is remembered with love, “I loved him so much. I still love him.”

And so it wasn’t a far stretch for the school to honour Will at the ‘First Annual Warrior Will Fun Fair’ as co-planner Sarah Becker said “because he was one of those kids that put a smile on everyone’s face that met him. We wanted to put together an event that would include some of Will’s favourite things he loved to do.” Co-organizer, Sarah Forbes said, “I wanted to help create something special for YOU and your family. To take a TIME OUT (even for a moment) for you to know that you are loved and cared for and supported by your family, friends, community, even strangers who feel your loss and wanted to contribute in some way!”

And our community rallied around us once again. People volunteered, donated products, and services for the online silent auction, and brought their families out to enjoy the fun. People donated their time to create a beautiful prayer space complete with trees and a bench for Will’s friends to use. We heard stories of love and laughter, smiles and giggles, trust, forgiveness, kindness. We felt a shared sense of healing with our community. And together our community helped to raise a significant amount of money for things Will would be so proud of, including $3000 for the St. Andre Bessette Trust Fund, SickKids Cardiac Research and Ronald McDonald House Toronto. The community support also generated funds to support a scholarship created in Will’s memory which will be awarded to a student in the Grade 8 graduating class who exhibits the qualities Will embodied: gentle leadership, strength, resilience, patience, kindness and forgiveness. ‘Thank you’ seems hardly adequate to describe the gratitude in our hearts to our community for making this possible.

We are so honoured to be Will’s parents. Honoured that he chose to journey his life with us. Honoured that he left a legacy to admire. Honoured that he had the ‘Will’ to live. And even though living without our son and brother is the hardest thing we’ve ever had to do, we will aim to do it with the grace and ‘will’ that he did. We ‘will’ keep moving. We ‘will’ enjoy the small things. We ‘will’ love big. Forgive easily. Be kind. Be patient. Laugh often. And above all, find purpose in our everyday. We ‘Will’ William. We’ll do it for you.

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