A Lighthouse on My Path

In January 2003, I received the news: “You’ve been selected to take part in our volunteer training.”

 A simple sentence, but one that would change my life forever. That’s how I first stepped into the world of pediatric palliative care with Le Phare, Enfants et Familles. At the time, I didn’t quite know what to expect, but I quickly realized that this experience would leave a lasting mark on my heart.

During the training, and throughout all these years at Le Phare, I discovered a world that is both deeply moving and incredibly bright. I learned about life-limiting illnesses, some well known, others considered rare or orphan diseases. I met children whose lives were short, but whose days were bursting with energy, curiosity, and wonder. They smiled, laughed, created, played, and observed. Behind every smile, there was a story, a resilience, and an immense love.

Le Phare is much more than a care centre. It’s a refuge, a bubble of respite where families can catch their breath, feel supported, and truly understood. I started as a volunteer, offering my presence and a listening ear to these extraordinary children and their loved ones. Over time, I became Coordinator of Family Services, a role that gave me a deeper understanding of just how great the needs are, and how incredible the resilience of parents can be.

In this world, connections are sometimes made in silence, through a glance, a hand held just a little tighter. You witness LIFE in its most vulnerable and fragile form, but also in its rawest strength. There are moments of pure joy, like watching a child burst out laughing at dancing soap bubbles, and others when silence weighs heavily, filled with emotions too deep for words.

The parents juggle countless roles: nurse, caregiver, physio… all while trying to remain simply mom or dad, a partner, an employee. Their daily lives are a continuous rhythm of care, sleepless nights, fears, and hope. They often feel isolated, their child’s wheelchair too bulky for certain spaces, seizures hard to control, immune systems too fragile. Every outing is an expedition, every day a new challenge.

Their lives are touched by many layers of grief. The grief of a “normal” life, of a child who won’t grow up like others, of an imagined future that will never be. Some families show admirable resilience, while others crumble under the weight of sorrow. And then there are the siblings, often in the background, living their own version of grief, and of a childhood shaped differently.

Le Phare, true to its name, is a lighthouse in the night. It allows children to live fully, right to the very end. It gives families the space to breathe, to simply be together, with no other goal than to enjoy the present moment.

Even today, this experience, these 20 years, lives in me. It’s changed the way I see life, illness, love, and time. It’s taught me that true strength often lies in the smallest gestures: a smile, an outstretched hand, a listening ear. And above all, that light can still exist, even in the darkest of times.

From the bottom of my heart, I want to thank the nearly one thousand families I’ve had the privilege of meeting, as well as my amazing colleagues, those who have moved on and those still here. One thing is certain: they are all people with heart, who made it possible for children to play, laugh, and live… right to the very end.