… 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.
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 (follow it on the #tutusfortanner tweet stream.) Or just save some pennies until the auction next week (first week of August 2010) – this week! RIGHT NOW!(CLOSED – we raised over $35,000 – THANK YOU).
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.