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. (continue reading…)

We dance for laughter, we dance for tears, we dance for madness, we dance for fears, we dance for hopes, we dance for screams, we are the dancers, we create the dreams.
— Albert Einstein

(cf. the Tutu Story, and What Is Photographosophy?) (Photo credit: JenIsJen, who has posted other amazing #tutusfortanner photos at her Flickr page, which you should totally check out.)

(PS: I totally wore that outfit on CNN, you guys. I wore a different one to the Today Show, though, because I like to mix it up like that.)

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 think about all the people that deserve big sloppy bear hug thanks, and to cry – happy tears, happy tears – and, also, sleep.

Lots and lots of sleep.

(video courtesy ShePosts.)

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: (continue reading…)

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. (continue reading…)

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 from the mirror as possible without making it look like the tutu wasn’t so much tutu as it was epic muffin-top… in every single one, with the possible – possible – exception of the one above, I look like a giant, drunk flightless bird.

It’s going to be a long week. Worth it, yes. But long. Also, scratchy.

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.” (continue reading…)

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 nervous or anxious because everybody is nervous and anxious, but then I realized, I’ve already written that post, like, almost a dozen times already, because this will be my fifth BlogHer, and I’ve probably written two or more posts about BlogHer for every year that I’ve been to BlogHer, whether speaking or keynoting or packing an infant around, so. I figured that I’d just link to the last one that I wrote about how important it is that we – collectively and individually – just chill the hell out about this thing that many of us are going to do next week.

Go read it. Or don’t. Either way, know that whether you’re going or not, it’s not the be-all and end-all of our collective existence, and you’ll be fine either way, we all will be, and when it’s all done there’ll be some bickering and bitching – there always is – but all in all we’ll all feel better for having this community, and we’ll all need a nap.

And some of us will be having tutus surgically removed from our bodies, but that’s a whole ‘nother story.

For believe me! — the secret for harvesting from existence the greatest fruitfulness and greatest enjoyment is – to live dangerously. - Friedrich Nietzsche (The Gay Science, section 283.)

(From the Photographosophy files.)

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. (continue reading…)