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“Courage is not a man with a gun in his hand. It’s knowing you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.” ~ Atticus Finch, To Kill A Mockingbird
Last year, I spent 220 days on the road. It looks like I’ll easily top 150 this year as well. Our quest to find a cure for our kids has taken us across Canada, the United States, and around the world. It recently landed us in DC to testify in front of the United States Senate Congressional Hearing on Right to Try legislation. It’s been a long and arduous road, indeed, but one filled with love, warmth, and Hope. It’s a road I wouldn’t trade for any other path, because we’re out there living up to the promise we made to Isaac long ago – a promise to help whomever we could, however we could, in his name and in his honour.
Wherever I go, I’m often asked what I do. During a lunch meeting yesterday, I described my role like this: I look at our kids from above – from an aerial perspective – and see them racing in a pack toward the edge of a cliff. Some kids are running way ahead, to fast to see what’s coming. It’s my job to find the kids closing in on the edge, the ones most in danger of hurtling over, and desperately try to pick them up and place them at the back of that ever-moving pack. It’s my role to try to give them time until we can get a bridge completed to take them safely to the other side.
But sometimes – just sometimes - I forget that my son is in that same pack, racing toward the same cliff’s edge.
That harsh realization hurts, and comes crashing home at the most unexpected of moments, much like it did in April when we found out about Isaac’s spinal cord, and much like it did in the run up to today’s surgery.
In April, I wrote that I sometimes felt alone, and that I couldn’t share my vulnerabilities because we’re supposed to out there spreading Hope. Sitting in the OR waiting room today – a room filled with stale air, worried parents, and endless fear – I reflected on all that we’ve been through over the past 10 years fighting this disease. I thought about all the times I’ve stared at the doorway in that waiting room, anxiously waiting for our doctor to come in and tell us that our son was OK. I reflected on where we’ve been, and the toll that journey has taken.
I thought about the perspective we’ve gain through all of this. A perspective that sees the beauty in life; in everything. A perspective that sees us living in the now and not worrying about the later.
Sitting in the room today, I remembered, once more, where we’re going. I had the chance to sit down and read all the notes, texts, and emails wishing Isaac well. We felt your love, and know you’re all there beside us. We’re lucky to have built a community up around us to help along the way. Together, we’re going to get that bridge built, and we’re going to get our kids to the other side, safe, sound, and healthy. A bridge strong enough and big enough for all of our kids in need. And we’re so very close…
Thanks for your love and support today. Thanks for being alongside us through it all. We made it through this battle today. With luck, we’ll get Isaac on his feet in time for the Gala on the 12th. Looking forward to seeing many of you there.
With Love, A.