Who wields a poem...

Rebecca wrote something the other day that exploded all of my current posting plans (which, if you’re interested, included the post on judgment, a post about that resource page that I am putting together, a post concerning my reflections on the loss of the friendship that I wrote about some months ago and a post about why I, despite my admiration for all you NaBloPoMo participants out there, simply cannot post every day). She wrote about the children that she works with through the Starlight Foundation – children who are dying. Children who die. Children who disappear.

My nephew is dying. I’ve discussed this here before. It’s not one of my favourite topics, obviously, but it is something that looms large in my life, and something that I might write about more often if this were a private diary, and not a public blog. I’m not sure, exactly, why I don’t write about it more often – why I don’t write about my ongoing guilt and regret that we cannot visit him more often, why I don’t write about my persistent fear that, despite all of the test results to the contrary, the gene that is at fault for his condition lurks somewhere in my sister’s body or in my own, why I don’t write about my admiration for my sister, who lives each day knowing that her child will not live. Why I don’t write about grief, about fear, about loss, about death. Why I don’t write about him, and everything that he is bringing to our lives – the joy, the humour, the wonder – through his own short life.

I could offer a thousand explanations: I don’t write about these things because they cause me pain. I don’t write about my nephew or my sister or their family because their story is not mine to tell. I don’t write this story because I think no-one wants to read it. I don’t write it because it hurts. I don’t write it because I don’t want to acknowledge it. But, end of the day, what remains is simply this: I don’t write this story.

And in not writing this story, I am complicit in the silence that surrounds my nephew. The silence that Rebecca alluded to, the one that settles like a deafening snowfall upon the stories of all these children, these children who are dying, who have died, whose stories we never hear, who simply, quietly, disappear. I have a voice, I could tell his story, I could ensure that there is never any silence surrounding his life, and – when it happens – his death.

Why do I not do this? Why do I not?

This is the point in the post where I swear upon the blog gods that I will write about Tanner more frequently. This is where I put out a renewed call for action posts, or for posts in honour of children that you know who are struggling with illness, or who lost their battles with illness. This is where I am supposed to announce what it is that I am going to do to break this silence.

But I can’t. I can’t promise that I will begin to write frequently about Tanner, because I simply do not know that I can. I am going to try, but I can’t promise anything. And I can’t ask you to write about children like Tanner, because I feel too keenly how difficult it is to do so. I feel some shame for this (coward), but there it is. Here is where my efforts to be a writer come up against the limits of being human-all-too-human: I cannot write through any pain, through any existential confusion. I cannot write my life in its entirety, with all of its fear and pain and ugliness. There are limits to what I can write.

Perhaps this makes me less of a writer than I thought I was. I don’t know.

All that I can do is forgive myself this limitation, and to offer these small efforts toward overcoming it. And to commit myself to such efforts, as often as I can, in whatever form I can manage them. To quietly chip away at the silence as best I can. Because I must do what I can, no matter how difficult, no matter how coldly down the bone such efforts cut. Because to not to do so is to sanction the silence, and all the misunderstanding and hurt that come from such silence.

So I will do what I can, even if those efforts feel so small.

And I'll ask that you do the same: seek out organizations that support children like Tanner. (Rebecca has listed many in her post.) Support these organizations. Notice children like Tanner; talk to your own children about children like Tanner. Talk to your children about talking to, being friends with, children like Tanner. Talk about the fact that children disappear every day, after struggling with cancer or muscular dystrophy or one of the many other conditions that end young lives too soon. Talk about how lucky you are, your children are, to have health, strength, life.

Talk.




For Tanner.