This weekend, my sister ran in a tutu for Tanner. Afterwards, she wrote this:
Wow. Life is a journey, a path that has been laid before us – to help us learn, love and grow. To push ourselves and just HAVE FAITH. In life and each other. I will readily admit, sometimes my faith falters… I think it does for everybody. Some days I am brought to my knees by grief. NOT because I feel sorry for myself or wish for a different life, but simply because I look at my kids and my heart swells and breaks at the same time. And I know many many parents face this and probably much worse than I do. I have the time. I can clockwatch, as my sister says. Though it may seem torturous, and some days it is, I am blessed with knowing now that life is moments. The here and now, not yesterday and not tomorrow. We have to cherish each and every breath we take. I have been taught that and have been blessed to make EVERY moment that I can of Tanner’s life be memorable and meaningful. I have at least that time for now.
It is, of course, our greatest fear. It is the bogeyman in our closet, the monster under our bed. It is the shadow that lurks behind every tree in the wood, it is the crackle of every twig, it is the sudden silencing of birds, the darkening of the sky, the unexpected chill in the air, the thing that stops our breathing, that quickens the beat of our hearts. And we cannot tell ourselves that it isn’t there, that it is just the stuff of fairy tales and scary stories; we cannot shine the flashlight into the closet or under the bed or out toward the trees and reassure ourselves, because it is out there, it is, maybe just as a possibility, maybe just as the faintest possibility, but that possibility is what gives it air to breath and matter to take form.
Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs to be intubated? Until he can no longer sit up on his own? Until his lungs are compromised? Until he cannot breath on his own? Until my sister can no longer look after him on her own? Until, until…