I like to think that I’m the sort of person who doesn’t take things for granted. I know how fortunate I am to have the life that I have; I know, too, that the terms and conditions of that life include no guarantees against frustration and sadness and pain and loss. I know, even the most difficult moments, that I have much to be grateful for, that I lead a life that is, for the most part, what the old philosophers might have called choiceworthy. I know that it is choice, largely, that defines my fortune and privilege: I am fortunate enough and privileged enough to be able to choose, to some not insignificant degree, my path and all of its little detours, to choose my pace and my direction, to choose to linger over or to pass by the myriad distractions of life, to gaze into the gloom or to seek out the sunlight. I am lucky, I know this.
It is also a characteristic of this good fortune, this privilege, that I am vulnerable to frustration and sadness (and, possibly, to depression; I’ll reflect upon this further someday) when I am forced to confront my limitations, when I look down this path or the other and see no way around a certain obstacle – some figurative bog or rock or troll-ridden bridge – and have to stop, give up, go a different way. That’s the very definition of privilege, I think – the luxury of getting pissy about being thwarted. Not that those who are less privilege don’t get frustrated at the obstacles that they are forced to confront – it’s just that, I think, the fortunate are more likely to put their hands on their hips and stamp their feet and say that shouldn’t be there, how dare that be there? and collapse to the ground in a resentful huff.
Or something like that.
When all was finally said and done, it wasn’t appearing on CNN in a tutu – nor appearing on CBC in a tutu, or posing in Central Park in a tutu, or watching as a limo slowed down on Fifth Avenue and the passenger leaned out the window and hollered – at me – hey, I saw you on TV in that tutu! – that stood out as the most memorable moment of my week last week. Which, when you think about it, is memorable in itself: I had a week in which I appeared on CNN in a tutu and that particular experience will not be recounted here because, during that particular week, stranger things happened.
Stranger things, like the prayer circle.
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.
Okay?
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.
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.
It’s my birthday. I’m forty years old today. Forty years old. Isn’t this the birthday where I get canes and bifocals as gag gifts and t-shirts that say things like I’m not old, I’m vintage and at least one coffee mug with the words lordy, lordy look who’s forty printed along the side?
I’m not old enough to be forty. Really, I’m not. It’s not that I fear aging or think that anyone over forty is hideously uncool – it’s that I just cannot believe that I am grown-up enough to have the numbers 4 and 0 apply to me in any context other than grade point averages. I’m not a grown-up; I’m a girl in a state of arrested adolescence. Sure, I have kids, but if anything that has only driven the point home more clearly: ain’t nobody here but us childrens.