All that I owe my Uncle Louis

My uncle Louis (pronounced Louie) passed away this morning. The good thing is that he didn't 'go downhill' for very long -- we only heard that he wasn't doing well on Friday. Since then, updates from family who live near him indicated that he wouldn't be with us much longer. Another uncle reported that when he visited yesterday, Louis didn't speak, but he occasionally raised a hand as if to wave at unseen visitors in his hospital room. That's why I wasn't surprised when Dad called this morning with the news that Uncle Louis is in a better place now. He would have been 79 this June.

Louis was the third-born in his family of nine, the second son of six, five years older than my dad. It was probably quite early in his life that his parents realized he had a disability, but we didn't actually know the words Fragile X Syndrome until the early 1990s. By then, Uncle Louis was well known and loved in our clan as the uncle who loved to tease and be teased. In my mind's eye, I see him shaking his finger and saying, "YOOUUUUU!" or laughing a big belly-laugh. He lived with my grandparents until they moved into Seniors' housing, and then he had a life of his own in a home for people with disabilities, working at a special workshop where he did woodworking. He loved to be taken out for lunch, especially for pie and icecream, after which he would announce, "I am a happy man." The picture above right always makes me smile -- it's actually from a family picture taken in front of my grandparents' camper van, with everyone looking at the camera, except for one...

Our paths haven't crossed since my grandma's funeral 13 years ago, but our family Christmas letters decorated Uncle Louis' room every year. My parents were sure to share stories of him after their visits to see him in a small Saskatchewan town six hours from here. Uncle Louis never had much to say, but he radiated the kind of warmth and friendliness and inclusivity that so many people with disabilities offer everyone they meet, and his town was fond of him. He wasn't the kind of guy who would judge anyone by what they wore or how they acted or what they did for a living -- or anything else, for that matter -- he was all about acceptance, gentleness, and friendship. 

Never a demanding fellow, he rarely called attention to himself, and was content to sit on the sidelines and watch the goings-on. Perhaps that's why I don't have any really good pictures of him. I've gone through my photo albums, only to discover that he was never the focal point of my camera, except for once -- a picture of him washing Dad's car on my wedding day, with the caption, "Uncle Louis, supervisor." In other photos, he's sitting in the background, listening to people around him, like the proverbial fly on the wall.

Uncle Louis was my first friend with a disability, who taught me from a very young age that people with disabilities are not to be feared, but to be appreciated for their uniqueness. From him, I learned to value difference, quietness, and gentle humour. Because of him, I chose to spend a summer working with people with disabilities at Camp Health, Hope, Happiness (He Ho Ha), and was employed at a group home for people with severe disabilities in my last year of university. His influence eventually brought me to the L'Arche Association here in Edmonton, an amazing place to work, laugh, and love. Even though I haven't seen him in 13 years, my uncle's presence deeply permeates my life... especially when I kibbitz with Thomas and Bill, two fellows with Fragile X Syndrome in our L'Arche community. I have always had a special fondness for them. Bill reminds me so much of Uncle Louis!

So you see, Louis, my dear uncle, I owe you a huge debt of gratitude. Because of you, I understand in the marrow of my bones about the beauty of every person, but especially, persons with disabilities. You have always been a peaceful presence. Because of you, my life has taken a unique path, and I will always remember you, especially when I spend time with my friends at L'Arche. I love you, though I might not have actually said so in person. The tears that have been blinding me as I type these words are testament to that. Thank you for being you. I have missed you for the past 13 years, and look forward to seeing your smiling face on the other side. In the meantime, enjoy your new life -- may heaven bring you many belly-laughs!