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:
– 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 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.