May 11, 2012 mcfadyena

The First Year

I’ve tried writing a number of different blogs to speak to the video that I share below. I was able to watch it and read people’s posts and blogs about it, but I cannot write about it myself. Reading and watching videos are one thing. I can read something or watch something, have some reactions, and put them neatly away again. Writing leads to contemplation. It leads to sitting with thoughts and emotions, for moments, hours or days, and then contemplating some more. Contemplating what the below video speaks to, I just can’t do without opening a box stuffed so full, it would burst open. And I’m not sure how quickly or easily I could stuff everything back in. You see, the IT trial has allowed me to put this box high on a shelf, since last August. The year between realizing Trey’s brain was affected in August 2010 and August 2011, when Trey qualified for the IT trial, was so … BIG (is the only word I can come up with), I’ve just needed a break from big. I’ve needed a break from so intense, you can’t sleep or think about anything else.
But I do want to share this video because I met this amazing and wonderful family in 2008 at the International Symposium in Vancouver and because I want to acknowledge all the families who don’t have the choice to not go there.
International MPS Awareness Day is May 15.


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