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I get hate mail. I’ve gotten used to it, for the most part, but still: getting angry e-mails (or comments or Facebook messages) from people who don’t like something that I’ve written or – more often – the fact that I, a mother with two small children, write about my life at all is never easy to take. It’s especially not easy to take when said mail takes me to task for, say, writing about the death of my father (which, I have been told, distracts and detracts from bigger and more important tragedies in the world) or for anything that I do that is related to Tanner.
I got an e-mail last night that did both. And while I’m slowly learning to suck up the hate for writing about my father, the Tanner stuff is too raw and too now for me to just gloss over. Tanner is dying. He’s dying quickly, more quickly than we thought that he would at this stage of his life. We had hoped that he make it into his teens. He won’t. So my nerves are a little raw, and getting mail that tells me that I’m exploiting him cuts in a uniquely painful way.
It hurts because it’s something that I worry about. As I wrote in a post some time ago, I’ve felt awkward about writing about Tanner, because it *could* be interpreted as exploitation, simply because writing about Tanner brings traffic and traffic brings dollars. Not a lot of dollars, but still. But not writing about Tanner means not telling his story, and it is a worthy story, an important story, and the cause of raising awareness of Duchenne’s Muscular Dystrophy – a disease that kills boys, a disease for which there is no cure – is an important one, and if I don’t tell that story, take on that cause, who will? So it goes for running 100 Miles For Tanner, and wearing Tutus For Tanner – these are meant to raise awareness, to get the word out, to make people sit up and look and listen and think and maybe, maybe, click the link to donate, or even just talk to their kids about kids who are different, kids who can’t use their muscles, kids who will die, and if I don’t pursue these avenues of awareness, who will?
My letter-writer stated that I was clearly selfish, running for Tanner at DisneyWorld. It is, after all, DisneyWorld, and my children came with me. Why did I not go visit him instead? Why did I not bring him with me? I could say that I visit him as often as I can. I could say that bringing him – who is in need of much aid when traveling – was very seriously cost-prohibitive. I could say that I’m frantically working to find ways to give him the opportunity to do such things as go to Disney with his cousins. But those are not the point. The point is that I cannot win. And that is why this particular piece of hate mail hit a nerve – because I cannot win, even in my own mind. There is not enough that I can do. And there is no one thing that I can do that would be perfect, that would be above critique, that would be above my own concern that I am doing enough, well enough, in this time that he has left and whatever time thereafter.
I need to not let that discourage me. I need to not let that stop me from doing whatever I can to give what I can to Tanner, and to the cause of raising awareness of Muscular Dystrophy.
But on days like today, that’s hard.