We dance for laughter, purchase we dance for tears, cialis we dance for madness, medstore we dance for fears, we dance for hopes, we dance for screams, we are the dancers,...
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Yeah. That. I need to lay down with a cold compress for a few days, and process what THAT all means, and find a way to calm the burstiness of my heart, and to...
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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:
3
Aug
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.
This afternoon, I took 237 photos of myself in tutus. Red ones, black ones, yellow ones; with shoes, without shoes; with leotard, with tank tops; standing close to the mirror, standing as far away...
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It’s Kyle’s birthday today. I’m not going to tell you how old he is, because I think that he’s feeling a little weird about that, and if the 21st century has taught us anything, it’s that there’s nothing weirdmaking that can’t be made even more weirdmaking by being broadcast on the Internet. So.
Emilia got him sticks for his birthday. She put a lot of thought and planning into that, and it’s important to realize – as she explained at some length this morning when she presented them, with great fanfare, which is to say, wrapped in ribbons and pulled with a flourish from behind her back – that they aren’t actually sticks, but tools. “Car tools,” she explained. “For your car.”
I was going to write a post about BlogHer. I was going to write a post about what it's like and how to cope and why, really, really, nobody has any reason to be...
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For believe me! -- the secret for harvesting from existence the greatest fruitfulness and greatest enjoyment is - to live dangerously. - Friedrich Nietzsche (The Gay Science, order section 283.)
(From the Photographosophy files.)
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27
Jul
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.