Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.
They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.
Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet. But he has no strings by which he might be pulled up. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only surgeons, and rods.
Have I hollered enough about the joyfultastic awesomeness that is this? Have you heard just about enough about tutus and New York and walking and skipping and running and wishes and dreams and carpe-ing the diem? Do you have no soul?
Then you might want to skip this post. I hope that you won’t, but I’m not the boss of you, so.
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.
We could lose our children. Some harm could come to them. They could be erased from the landscape of our lives and our hearts could, would, break, shatter into a million, billion, trillion pieces and we would never recover, not really.
I don’t believe in petitionary or intercessory prayer. I’ve written about my reasons for this at length, but it boils down to this: I don’t believe in, can’t believe in, a God who responds to such prayer. As I said some months ago, ‘why should God help us find a cure for cancer, and not for muscular dystrophy? Find one lost child, and not another? Help the Red Wings win while leaving children dying in sub-Saharan Africa? If God is a god who lets bad things happen, the only way that I can understand that is if the point of letting bad things happen is to compel us to cope with pain and heartbreak and evil ourselves, alone, to better understand those things. And that idea of a didactic God doesn’t square with a picture of God as a moody patriarch who dispenses favors to his children on the basis of who supplicates most fervently.’