You would have been 13 this year. I often wonder what life would have been like if you were still around. Nothing has been the same since you were taken from us a little more than six years ago. I would have loved to see you with your brother, see the amazing bond between you flourish, see that mischievous twinkle in your eye sparkle even brighter as you entered your teen years, bask in your exuberance and your ability to make other people happy, and watch as your infectious smile brightened every room you walked into.

But life had other plans. The life of a big family, with lots of healthy children running around, tons of things on the go… it all went in another direction, and we had no choice but to follow. 

Olivier Eglise
Olivier Spiderman
Olivier Marie Eve Frere

It started with a tremor in your hand as you were drawing, something you were particularly good at. We were concerned and felt the need to investigate further. When we were reassured it was only a twitch, my mother’s intuition told me otherwise. You had just turned five, and we had already been to Sainte-Justine three times. Your naturally curious and happy-go-lucky personality were responsible for the first two visits, for incidents I would now classify as trivial. But what we were told this third time around would upend our lives, and the lives of the people we love, forever. 

It turned out the cause of the tremor was an incurable brain tumour.

Losing a child is a parent’s worst nightmare. The grief is indescribable. How do you go on?

Having a dedicated and experienced team of caregivers and professionals around you throughout the process is a huge help, but ultimately you have to learn how to start living again. This second family, in the familiar and comforting surroundings of Sainte-Justine, plays a role in keeping up a semblance of normality. But after your child passes away and you go back home, nothing makes any sense anymore.

How was I going to get through this? It all seemed so unreal.
 
One of the angels along my path told me, “It’s about finding meaning in the midst of meaninglessness.” And those words gave me strength. After my son died, I decided to build the rest of my life around what this ordeal taught me. Today, I’m making progress and I’m enjoying life again. I know that’s what Olivier would have wanted. 

A number of opportunities to honour Olivier’s life and memory have arisen over the years. But how do you go about giving back when so much has been taken from you?

During our time at Sainte-Justine, I met so many wonderful, caring, sensitive people who were there to help, support and listen. People who were there for my son, who looked beyond his hopeless odds of survival to focus on what he really needed, then and there: to jump around and play with him when he had a burst of energy, or to take him swimming when it was time to wind down and relax. Everyone was incredibly kind and generous, even though they knew Olivier’s story would not end well. It still blows me away thinking of everything they did, not only for him, but for us, his parents. 

Olivier Hopital
Olivier Casquette
Olivier Maman

Despite all the huge leaps forward being made in medicine, there are still lots of untreatable diseases and lots of waiting rooms that are far too full. Research is vital. I firmly believe that, one day, they will find a cure for what brought Olivier’s life to an end. 

That is why I have decided to do my part by raising funds to help other children. I volunteer my time on behalf of all the grieving mothers out there, and I continue to share my story and Olivier’s story with others. In recent months, I combined my ongoing search for meaning with my career aspirations and took a job at the CHU Sainte-Justine Foundation. That way, I can support the work I believe in so passionately every single day.
 
Although I never took anything for granted before all this happened and I knew how fortunate I was, this experience impressed upon me how fragile life really is. It is always hanging by a thread, and it can all come crashing down at any moment. Today, I feel lucky to have a healthy son who keeps me grounded in reality. I admire his strength, and I am so proud of everything he is and does. I also have an incredible life partner, who is a fantastic father. Between them, they keep me focused and moving forward. 

Famille St Denis Carpentier 20Familles
© Geneviève Giguère

As parents, we watch on as the children we bring into the world grow and thrive. But when things are cut short, it is important to take the time to process every step, reach out to the people around you, pick up the pieces and find your own meaning in all of it. I made a conscious decision to embrace the beauty and happiness in life. And Olivier’s spirit is always there to remind me of that.

In March 2021, we were honoured to be one of the 20 families involved in this fundraiser for the Foundation, to keep Olivier’s memory alive. Together, we can make a difference for the children and families of Sainte-Justine. It’s our own contribution to finding a cure for all the other Oliviers out there. Please consider joining us in supporting the CHU Sainte-Justine Foundation.