Tuesday, February 16, 2010

An Open Letter to Alexandre Bilodeau

Dear Alexandre Bilodeau;

Thank you for winning your mogul event (that was partly up to the judging, but whatever, you still won). Thank you for being the first Canadian to do so on home turf in 30 + years so that there was an interesting angle to your story so that the media cover the even more heartwarming story of your relationship to your brother. Thanks for putting your brother's story out there and thrusting Cerebral Palsy into the forefront of national and international media, however fleetingly. Thanks for saying out loud for everyone to here that we have a privilege, a right, and a responsibility to live our lives to the fullest, to push ourselves to be our best because people like Frederic do that on a daily basis, overcoming time and again their disabilities and doing it with smiles on their faces and joy in their hearts. Thanks for saying out loud that anything is possible because the doctors told Frederic and your parents that he wouldn't walk past ten years of age, and yet here he is, at 28 years of age, still walking, proving everyone wrong. Thank you.

Cerebral Palsy, and other neurological disorders like it are so often swept under the rug, hidden away from view, in terms of people's awareness of them, the toll they on the families effected by the disorders, the challenges posed, but also the rewards and invaluable life lessons that can be learned from people effected with Cerebral Palsy and the like. Every once and a while a news story will come along, like the high school baseball player with a mild form of Cerebral Palsy who was pitching like a pro despite his disability and yet because of it. But then it gets hidden from view again, forgotten. And yet here are Alexandre and Frederic, in the forefront, putting real faces to the disorder.

But there are so many other faces to the disorder, so many more stories to tell and so much more that can be done, not only to raise awareness for Cerebral Palsy and other neurological disorders, but to help people in Frederic's position, to be more independent despite their neurological deficits.

One of my favorite causes to champion right now is George Mark House. George Mark House is the first Pediatric Palliative care facility of its kind in the USA that provides end of life, transition care, and respite care to families who have children with a wide range of special needs. Without going into to much detail, I spent a considerable chunk of time there with my son this past year and have come to champion it for its top notch care and the wonderful service it provides.

Because of George Mark House, I was able to meet some remarkable people in similar situations to Frederic's. Each one of them had a unique, beautiful personality that was a treasure to behold. And each one of them is a remarkable individual I am proud and honored to know. I wish I could tell their stories, maybe one day I'll be allowed to. I wish that everyone was aware of their unique conditions. Maybe one day everyone will and will champion their disorder, but also their uniqueness, their incredible resilience and beauty.

Until then, we have incredible stories like Alexandre's and Frederic's and for that I can only say thank you again. Thank you for telling it, and thank you to the world for listening, however fleetingly, what these two unique individuals had to say. Thank You.

No comments: