If you have to ask that question, you should probably read this first – it’s the story of my nephew, Tanner, who is dying of Duchennes Muscular Dystrophy. It’s kind of a long story. But you should go read it, and maybe also my most recent posts about him, because the story matters. Take your time; I’ll wait.
So, yeah, I’m trying to raise money to make his biggest wish – to live out what time he has left at home – come true, and I’m trying to raise awareness of DMD, and of the challenges facing terminally ill children and their families, and I’m trying to do something, anything, that will make everyone – myself included – slow down a little and really, really cherish the time that they have with their children. And, yeah, that’s all a big job, but Tanner’s worth it – every child who struggles through this kind of thing is worth it – so. But I’m not doing this on my own – far from it – a whole bunch of people have pulled on their tutus (you got to that part in your reading, right?) and designated themselves Fairy Godpersons and are doing stuff to support Tanner and dreams and wishes and the whole project of being real. Stuff like:
It took me a while to figure why I was crying, why I kept bursting into tears at silly, random things, like an excess of dryer lint, or a dearth of toilet paper. I had just figured it to be hormones, or a passing mood, you know, the kind that you fall into when you’ve gone too many nights with too little sleep and then you open the cupboard and there’s not enough coffee for a full pot and you slump against the counter and you cry.
It wasn’t that. I wasn’t crying about coffee.
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.