This is Tanner:

Tanner is my nephew. He’s dying. There aren’t any words that can adequately describe how hard that is. That said, I do try to describe it, sometimes. And I try to share a little something of his life and struggle and his family’s life and struggle and all the beauty and the sadness that those contain, because it’s a life worth sharing and celebrating, and story worth being told.

(Quick, totally not unrelated aside: are you here looking for the story behind the tutus, and the tutu-wearing, and Tanner’s wishes – including his biggest wish, the one that I’m fighting hardest for – and what you can do to help? You can jump down the page for that. I’m not technically skilled enough to have set up multiple pages here, having barely advanced beyond papyrus scrolls. Anyway. Tanner’s story appears first below – current posts about him are archived here, if you’re interested – and then the tutus, etc. Read in whatever order you like.)

Duchenne’s Muscular Dystrophy, the disease that is killing Tanner, won’t be cured in his lifetime. But it might be cured in another boy’s lifetime. And there are other children out there who live their lives on an abbreviated clock, and other families who wrestle with the hourglass, counting the sands of time as they fall too quickly, and maybe – maybe, maybe, I hope – sharing Tanner’s story, and fighting for this cause, will serve some good.

And so I share his story here. And do what I can – write for him, run for him, chase his dreams for him, all while wearing a tutu* – the best I can. I do, of course, want to raise money for DMD research – there’s a button below, and on my Causes page – and to raise awareness of DMD (some things that I’m involved in, to that end: One Hundred Miles For Tanner, BlogHer 5K, Tutus For Tanner) and to work in some way toward bringing attention to the struggles of families facing the loss of a child from terminal illness. But Tanner is dying quickly, and so mostly, right now, I want to help him chase some dreams.

Life List For Tanner:

1. Help Tanner make his dreams come true before he dies. Like this one: take his cousins to Disney
2. And this one: meet an astronaut
3. And this one: be a cowboy for a day
4. And this one: visit Sesame Street
5. And this one: see a dinosaur
6. And this one: have a train holiday
7. And this one: be a pirate
8. And this one: be on television
9. And this one: have a real birthday party with lots of friends
10. And this one: meet a Disney Imagineer
11. And this one: make a dream come true for another boy with DMD
12. Find some way, any way, to make sure that he can die at home. (See Tanner’s Biggest Wish, below.)
13. When he passes (*deep breath*) throw a big party with sparklers and cake and fireworks that celebrates how happy his life was, and how rich he made our lives, and pledge to always to do this, to celebrate him, by living our own lives as fully as we can.

Tanner’s Biggest Wish…

… is not really a wish that he has made for himself, because, well, he doesn’t know that it’s something he should wish for. Nor should he ever know, because this wish – that he be able to live out the time that he has left at home – is one that shouldn’t even fall into the category of wishes. That he faces not being able to live the rest of his very short life at home, with his mom and his family, surrounded by love, is something that just should not be.

But it is. My sister is a single working mom, and as Tanner grows bigger while his muscles continue to deteriorate, she is less and less able to do simple things like lift him in and out of bed and monitor him throughout the night and although she has some caregiving assistance, she is, soon, going to need that assistance around the clock, and her home is simply not equipped for that. And if it remains unequipped for that, Tanner will have to leave home, to be cared for somewhere where all of his physical needs can be met. Somewhere without his mom. And I just can’t let that happen.

So here’s the thing: my husband and I are going to renovate her basement so that she can get a government-funded live-in care aide (well, my husband is, because he knows how to do that stuff. I’ll lift tools and carry drywall and yell words of encouragement and hold a Flip camera and blog. While wearing a tutu,* of course.) And we’ll get whomever we can to help, and it will be like a barn-raising, except not a barn but a basement, and it will make it possible, this thing that is so neccesary, this thing that breaks my heart into a million pieces to even say – that Tanner die at home. But we can’t do it alone – this kind of thing is expensive – and so we need some support. We can put all of the time and energy that we have toward this, but we also need to fund materials and expert help for those things that need expert help (plumbing, electrics) and do all the things that a very, very modest and limited version of Extreme Home Makeover would do (yes, I e-mailed them; no, I did not hear back), well enough that they’d pass a Holmes Inspection, and that requires money, and so I am asking (which is really, really hard, but that’s another, possibly irrelevant, story). I’m asking.

(Note: full accounting will be maintained – this project will run publicly, with every nut and bolt of it blogged and vlogged and Tweeted – and any overage will be donated directly to Muscular Dystrophy Canada and Parent Project Muscular Dystrophy.)

If you’d like to be involved in some other, more hands-on way, e-mail me. (We’re aiming to do the work in December of this year, in Kamloops, BC.) It does take a village, you know, to do a great many things. (Or a tribe. A tutu* tribe. Be part of Tanner’s Tutu Tribe (tutus totally optional, but, hey, don’t be that guy)).

Prefer to come at it differently? Consider helping out by donating something to the #TutusForTanner Great Tweet-A-Thon Auction, hosted and managed by the incomparable Scott Stratten, aka @unmarketing. Or just save some pennies until the auction next week (first week of August 2010) – this week! RIGHT NOW! – and make a bid. (Watch the #tutusfortanner tweet stream to see this unfolding. Heartbustingly awesome.)

Or, or… consider supporting @wwbhjd’s be-tutued Run For Tanner (proceeds to MD; widget below and on sidebar) (you can also watch updates on this at the #tutusfortanner tweet stream, and also at Black Hockey Jesus’ blog)…

… or purchasing Tanner’s MemeTales book, created by the divine ThinkMaya, and/or participating in the MemeTales auction, which is being supported by all sorts of awesome small (and mom-run!) businesses…

… or just donating directly to MD Canada (button below) or to Parent Project Muscular Dystrophy (who support research specifically into Duchennes) or to the Make A Wish Foundation 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, 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.

And if you’re in New York on August 7th, wear a tutu.* Not going to be in New York? Wear a tutu anyway.

*Why Tutus?

If I ever set up a FAQ page, this will the first – and possibly only – FAQ (okay, What’s Duchenne’s? would be another, but you can totally just ask Wikipedia that). Why tutus? Tanner’s a boy, right? And he’s probably not into ballerinas or princesses or Cheech & Chong (I haven’t asked him about that last one, but as he’s a grade-schooler, I’m going

to go with no), right? So why not, say, motorcycle helmets or spacesuits?

Well, I don’t wear helmets or spacesuits, for starters. But I was going to wear a tutu to kick off a project to raise awareness for DMD research earlier this year. Was, until a stupid little condition involving iron deficiency combined with my legendary clutziness conspired to have me crash into some concrete right before my first run and it was epic fail and I was sad. Which prompted some friends of mine to launch Tutus For Tanner,

which in turn led to the BlogHer5K/#TutusForTanner Run, and these have inspired me to keep going and to keep pushing Tanner’s cause.

Also, it’s silly. And it evokes fairies and fairy godmothers and Tinkerbells (KEEP CLAPPING) and pixie dust and wishes and dreams and – what else? – SILLINESS. And

silly is good. Silly makes us smile.

And we need all the smiles we can get.