The first thing she said to me was, "Mom? Did you meet Tanner?"
Two months before I left, I had told her the story of Tanner, the eight year old boy who is dying of Duchenne's Muscular Dystrophy. I explained that I was participating in the Tutus for Tanner 5k to raise money to help Tanner get his biggest wish: to be able to live at home as his disease progresses to the point where he needs full time care.
Tanner's Aunt, Catherine, who blogs over at Her Bad Mother, explains his situation:
"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.
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."When Heather told me about the 5k run I jumped at the chance. At that point, I didn't know Tanner's story, but I loved the idea of running through Central Park in a Tutu. After we spoke, I went to Catherine's blog and learned Tanner's story.
Heather and I stumbled into the lobby of the hotel at 6:30am last Friday morning, adorned in our Tutus.
The first thing I saw, which I wasn't expecting, was Tanner smiling away in his wheelchair, surrounded by women and men in Tutus, like a ring of Fairy Godparents. His eyes were shining with joy.
As we set off on the 5k, I thought about what this trip to New York was like for Tanner and his family. How they were experiencing all of this for the first, and possibly last, time together. I thought about what it would be like to know you are dying, to know you are losing a child. How each moment together is precious, and how hard it is to remember that until you are faced with hardship like Tanner's.
As we walked through the early morning mist in Central Park, I saw the world with new eyes. What would it be like, experiencing all these amazing new things, meeting all these incredible new people, all the while knowing your days were numbered? Underneath the sadness - because it is incredibly sad - I felt an undercurrent of joy, of hope. Bearing witness to people coming together to help an eight year old boy achieve his biggest wish was, in a word, beautiful.
So when Greta asked me if I met Tanner, I told her yes. "Is he going to be okay?" she wanted to know.
"He has a disease that can't be cured," I said, and her face fell. "But we are all working together to help, to raise money and awareness, so that maybe someday in the future another child with this disease will have the right medicine."
She thought a moment. "I'm glad you did the Tutu run, Mom," she said. "I'm glad you helped. It's important."
It is important. Tanner's story is one of hope. He is lit from within, this eight year old boy. I take a piece of his light with me, now. I try to look at the world through his eyes, to hang on to moments like gems.
"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 necessary, 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.You can read the whole story, with links to more information, here.
My heart soars to see that Tanner's Biggest Wish will come true - so far over $29,000 has been raised - 117% of their original goal. Every amount over their goal will go towards the Muscular Dystrophy Canada and Parent Project Muscular Dystrophy. Let's find a cure. You can donate through the widget below:
If you can't donate, that's okay. Please do the next best thing: take a piece of Tanner's light with you, too. Slow down, take it all in. Hug your family. Cherish the moments you have together in this crazy life, because they are gems.