My brother Louis and I, Maxym 👫💙

I was just starting high school when my brother Louis came into my life. The first four years were nothing short of challenging, what with Louis’ epileptic seizures, his insomnia and the endless appointments. My instinct was not to add to the demands on my family; they were living their worst nightmare. So, as a teenager, I took myself out of the equation; I withdrew. I became a non-entity.

When I first walked into Le Phare, I was taken by how colourful and joyful and bright it was. All the kids were happy, as were the volunteers, interacting with them, helping them, but enjoying them too! I got to stay with Louis during his first 24-hour visit. I particularly remember swimming together in the interior pool. We had so much fun; I didn’t want to leave! When I think back on those first years, I was even a tad envious of Louis. He would bring home these great gifts, he even saw a pig through the animal-assisted therapy program, and then there was the great outdoor courtyard. In my eyes, he was in the jet set!

On the flip side, Louis’ respite stays gave me back my parents. During his stays at Le Phare, we had time together that we just didn’t have before, and no matter what we did, it was quality time, calm and stress-free. Something as simple as going grocery shopping with my dad, or taking a nap, playing a board game, or getting a full-night’s sleep was a gift! Even just being able to talk for more than 5 minutes without being interrupted by Louis’ needs was great!

My Loulouchou matchu pitcchu is the purest person in the world – not an ounce of malice there, just unadulterated joy. Today, my number one task is giving him the most of the most, showering him with love and stimulation. It’s all about making him laugh, speaking with him, tickling him, giving him kisses…

Maxym, Louis’ older sister