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:

- The #TutusForTanner Great Tweet-A-Thon Auction, hosted and managed by the incomparable Scott Stratten, aka @unmarketing. It’s going on RIGHT NOW, and it includes stuff like iPads and weekends in Vegas. You should make a bid. (Watch the #tutusfortanner tweet stream to see this unfolding. It is heartbustingly awesome.)

- The Epic Run For Tanner, in which the amazing man known on Twitter as @wwbhjd runs laps – laps – around Central Park. In a tutu. For Tanner. (Read more about it at Black Hockey Jesus’ blog.)

- The MemeTales book for Tanner, created by the divine ThinkMaya, which is also the base for another auction, and is being supported by all sorts of awesome small (and mom-run!) businesses. (Updates on this auction are also streaming through the #TutusForTanner tweet stream.)

- The Canadian Embassy Party at BlogHer, this coming Thursday evening, at which ‘Toonies For Tanner’ will be collected, and tutus made (this is your chance to make your own tutu, which, you know, you always wanted to do), and much celebration of how wonderful it is to play fairy godperson.

- The People’s Party at BlogHer, also this coming Thursday (after the Canadian Embassy party), also collecting ‘Toonies For Tanner’, and also celebrating life, liberty and the pursuit of tulle in the name of heroic little boys.

- Totally random and insanely awesome tutu-making bee in the lobby of the Hilton New York, in which crafty bloggers will be making tutus, for a donation, and/or coaching you on how to make your own.

- The BlogHer 5k / Tutus For Tanner run, which was a crazy/beautiful idea that came out this crazy/beautiful idea, and which will see a gajillion tutu-ed women (and a few men) running, walking, skipping and moseying through Central Park and down Broadway this Friday morning. (Didn’t sign up for the run? Just show up and walk with me and Tanner. Not going to be in New York? Wear a tutu anyway – and tweet it, blog it, Facebook it or upload a picture to the Tutus For Tanner Flickr page. Or just wear a tutu quietly in your own home. That can be fun, too.)

If you want to help, you could support any of the above initiatives, or you could just donating directly to an organization like Parent Project Muscular Dystrophy (which supports research specifically into Duchennes) or to the Make A Wish Foundation (which is like a fairy godperson writ very, very large) or to any other organization that supports the needs and dreams and wishes of children who haven’t the time or the muscles to realize them for themselves.

Or – and I totally, totally mean this – just hug your kids, hard, and treasure every second of your time with them. If that’s all you do, that is totally enough. Totally. More than. If all this story inspires is a little more cherishing and loving and whole-hearted embracing of every precious moment… well, that is everything. Really.

Really.

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.

My dad died a year ago this week. I say, this week, and not today or yesterday or the other day or tomorrow, because I don’t know when he died, exactly. Nobody does. The coroner had to make a guess. “Sometime between July 30th and August 2nd,” he said. “But we have to pick a day. Any of those days significant to you? We don’t like to set the date of death on the same day as someone’s birthday or anniversary.” July 31 is my husband’s birthday. So we picked July 30th as my father’s death day. That was last year. A year ago, that he died.

The thing of it is, though, that I know that that date is just some random date that we picked because we didn’t know the real date, because we didn’t know when he died, really, and I can’t shake that knowledge. It haunts me that we don’t know, that we didn’t know, and the not knowing is a constant reminder that he died alone and that I was far away and that we didn’t know, we didn’t know, and for some reason that seems really, really important. And it doesn’t help that there is another death, coming – not today, not tomorrow, but far, far too soon – and that there exists the possibility (a possibility that I have to extinguish, stamp out, kill) that that death will not be a good death, the best possible death – if there is such thing – there is such a thing – a death at home, surrounded by, comforted by, love. That can’t be allowed to happen. I won’t let that happen. But in my darker moments, I worry that it won’t be up to me, that I won’t be able to make things be the way that I want them to be. I didn’t want my dad to die alone. It happened anyway.

These thoughts press upon me, and I fight them off, batting at them as though they were so many black flies, when really they’re not at all like black flies, they are so much denser and heavier and more persistent and when they land upon me they bite harder and more viciously than any mere bug. And I cannot stop them landing.

I try to ignore them. I can’t.

And ignoring them isn’t helping me. Telling myself that I am crying about dryer lint – because, who hasn’t cried about lint? – when, really, there are these dark, heavy things beating their wings upon my back just weakens me, just leaves me vulnerable. There is no strength in self-deception. I need to face them.

I don’t know how to face them.

Unless…

“Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.” — Rainier Maria Rilke.

Dragons, yes. When I was blathering on about black flies that are really much, much bigger than black flies, with big, heavy wings that can knock you to the ground, I think that this is what I meant. Dragons. Monsters, with wings and hot breath. Monsters that might be princesses, in need of rescue, in need of help, in need of love. The Sleeping Beauty kind, obviously, rather than the Jasmine or Pocahontas kind, although here Rilke’s beautiful analogy starts to fall apart for me, because I am too influenced by Disney, and isn’t the dragon in Sleeping Beauty really the bad fairy, or some such? I need to revisit my Bettelheim.

Perhaps dragons are really bad fairies, and bad fairies really princesses, corrupted, in need of rescue from their corruption. Or something. Does it matter? Turning and facing the dragons is hard, because it is scary, it is so scary, and that is why I am putting tutus on them, but even that, even that, seems, in the darker moments, to not be enough.

Still, it’s all I that have. It will have to be enough.

(Please wear a tutu on Friday. Or any day. If only to make a point about fairies and dragons and facing scary things and the incredible, inestimable power of tulle. It’s a point, I think, that needs to be made.)

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.

This?

This makes me cry. With joy. With grief. With gratitude.

(You can join in too. I’d love it if you would. So would Tanner. Because it’s silly, and happy, and fun, and because it’s for him.)