I like to think that I’m the sort of person who doesn’t take things for granted. I know how fortunate I am to have the life that I have; I know, too, that the terms and conditions of that life include no guarantees against frustration and sadness and pain and loss. I know, even the most difficult moments, that I have much to be grateful for, that I lead a life that is, for the most part, what the old philosophers might have called choiceworthy. I know that it is choice, largely, that defines my fortune and privilege: I am fortunate enough and privileged enough to be able to choose, to some not insignificant degree, my path and all of its little detours, to choose my pace and my direction, to choose to linger over or to pass by the myriad distractions of life, to gaze into the gloom or to seek out the sunlight. I am lucky, I know this.

It is also a characteristic of this good fortune, this privilege, that I am vulnerable to frustration and sadness (and, possibly, to depression; I’ll reflect upon this further someday) when I am forced to confront my limitations, when I look down this path or the other and see no way around a certain obstacle – some figurative bog or rock or troll-ridden bridge – and have to stop, give up, go a different way. That’s the very definition of privilege, I think – the luxury of getting pissy about being thwarted. Not that those who are less privilege don’t get frustrated at the obstacles that they are forced to confront – it’s just that, I think, the fortunate are more likely to put their hands on their hips and stamp their feet and say that shouldn’t be there, how dare that be there? and collapse to the ground in a resentful huff.

Or something like that. (continue reading…)

It was just one night, and one night, measured against the course of a lifetime, doesn’t seem all that significant. But it was a dark night, and I have never been able to shed the weight of the memory of it. I have never been able to put it, as they say, in perspective. I never will.

Jasper was not quite six months old. I had not slept in weeks. I lay awake as he stirred and fussed, bracing myself for the moment when I would have to rouse myself fully to nurse him or change him or soothe him. The darkness that night seemed particularly black, the kind of black that has a density, a weight. To say that it felt like it was closing in would be to use a trope that gets overused when writers are trying to describe dark nights and oppressive fear, but in this case it was true. The darkness was closing in on me like a heavy fog, like an army of ghosts, like a slick of oil, like night made solid and sinister. I couldn’t breathe. Jasper continued to fuss. I fought the dark.

I fought the dark. I think that I won. Even at the time, I wasn’t sure. I’m still not sure. (continue reading…)

If you have to ask that question, you should probably read this first – it’s the story of my nephew, Tanner, who is dying of Duchennes Muscular Dystrophy. It’s kind of a long story. But you should go read it, and maybe also my most recent posts about him, because the story matters. Take your time; I’ll wait.

Okay?

So, yeah, I’m trying to raise money to make his biggest wish – to live out what time he has left at home – come true, and I’m trying to raise awareness of DMD, and of the challenges facing terminally ill children and their families, and I’m trying to do something, anything, that will make everyone – myself included – slow down a little and really, really cherish the time that they have with their children. And, yeah, that’s all a big job, but Tanner’s worth it – every child who struggles through this kind of thing is worth it – so. But I’m not doing this on my own – far from it – a whole bunch of people have pulled on their tutus (you got to that part in your reading, right?) and designated themselves Fairy Godpersons and are doing stuff to support Tanner and dreams and wishes and the whole project of being real. Stuff like: (continue reading…)

Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.

They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.

Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet. But he has no strings by which he might be pulled up. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only surgeons, and rods. (continue reading…)

It is, of course, our greatest fear. It is the bogeyman in our closet, the monster under our bed. It is the shadow that lurks behind every tree in the wood, it is the crackle of every twig, it is the sudden silencing of birds, the darkening of the sky, the unexpected chill in the air, the thing that stops our breathing, that quickens the beat of our hearts. And we cannot tell ourselves that it isn’t there, that it is just the stuff of fairy tales and scary stories; we cannot shine the flashlight into the closet or under the bed or out toward the trees and reassure ourselves, because it is out there, it is, maybe just as a possibility, maybe just as the faintest possibility, but that possibility is what gives it air to breath and matter to take form.

We could lose our children. Some harm could come to them. They could be erased from the landscape of our lives and our hearts could, would, break, shatter into a million, billion, trillion pieces and we would never recover, not really. (continue reading…)

This – the post below – is something that I wrote a few years ago, when I was still in the first joyous and anxious flush of new motherhood. It’s one of my very favourite posts, although one that has gotten buried in the sands of Wordpress, and time. It’s also a post that I’ve been thinking about a lot, not least because of my sister’s ongoing struggle with the prospect of saying goodbye to her son (a struggle that extends to all of us), but also because of my father’s passing, and my keen awareness, in the long process of letting him go, of how difficult he found it to let me and my sister (and, in a completely different context, my mother) go, of how difficult he found it to let anything go. And then, last night, I saw a film (about which I will write more at length, once I can do so without crying) that touched all these nerves, and more, and reminded me that what I thought was a unique experience of motherhood is, in fact, an experience of parenthood, one that fathers share no less for being fathers. And that, perhaps, it is an experience of love generally – of the necessity of giving love air to breathe, of the inextricability of loss from love, of the impossibility of holding on to those we love too tightly – of the undesirability of holding on too tightly – of the inevitability of goodbye. So I am revisiting it here. I am not sure, yet, what I have learned from revisiting it. Other than, maybe, that I need to meditate more upon the cruelty and beauty and necessity of letting go.

*****

One of the most difficult things about pregnancy, for me, was that it forced me to confront myself as a biological creature. It forced me to experience myself as a body, as a being put entirely into the service of nature. My every wakeful – and not so wakeful – moment was spent in a state of hyper-consciousness about my physicality: I was nurturing a life, and that life depended upon my physical being, and no force of intellect or imagination could alter or facilitate or intercede in that dependency. And as a person who had spent all of her conscious years in her head – and someone who was well-trained in a school of philosophical thought that emphasizes the absolute primacy of mind over body, reason over appetite and base sense – this was very, very hard for me.

So I was anxious – anxious beyond measure – about birth and new motherhood, which I perceived as a broadening and deepening of this experience. I didn’t fear it, exactly: I wanted the experience. Every fibre of my physical being strained toward this experience, and demanded that my mind follow – this, in itself, was disconcerting. The thing of it was, rather, that I doubted my ability to stay the course: how would I ever, ever find my way through this dense thicket, this overwhelming jungle, without maps, without books, without the compass of my intellect? How would I survive, if I had only the thrum of my senses to guide me? (continue reading…)

There’s a home for the elderly that Emilia and Jasper and I pass every day on our walks to and from preschool and junior kindergarten and ballet lessons and karate. Emilia calls the ladies who live there her ladies – “we need to wave to my ladies, Mommy!” -  and she waves and blows kisses to them when we see them sitting in their enclosed verandah, and, when they come out outside for their daily constitutionals, she stops for chats and hugs. They give her extra candy at Halloween. She thinks that they’re awesome. “Just like Grandma, only not so far away and also they give me candy instead of cake.” Which is an important difference, you know.

The other day, after passing her ladies and dispensing the requisite waves and kisses, Emilia asked this: “why are some grandmas in wheelchairs?”

“Because they’re older, sweetie, and their bodies aren’t working so well anymore, and they can’t walk as much as they used to, so they need help. Wheelchairs help them get around.”

“Are they going to die? Because their bodies aren’t working?”

“Not just yet, I don’t think. But yes, when people get much older, they’re closer to dying.”

“And when their bodies aren’t working they’re closer to dying too?”

This is what you get when death is a semi-regular topic in your household. “Yes, sweetie, when their bodies aren’t working.”

“Is Tanner going to die?”

Ah. Ugh. (continue reading…)

(Hey, buddy. Why don’t you go ask your mom for some chocolate? Or cookies. Yeah. Go get some cookies, would you? Don’t make me roar. You don’t want me to roar.)

Jasper is much more blase about scary things than am I. There’s a lesson for me there, I think.

Whatever that lesson is, however, it is a lesson that I am not up for thinking about right now. Maybe tomorrow.

And then I admitted something in this post that I never thought I’d admit anywhere other than whispered, private conversations…

… and I’m still pretty sure that I’m not nearly as brave as I need to be. Want to be. Need to be. Because I kind of want to take it back, even though I don’t think I should, even though I know that I shouldn’t, even though I know that it’s better – for me, for the people I love – that I don’t. But still.

But still.

Here’s the thing: sometimes, when you drag ugly or frightening things into the light, the brightness of that light reveals those things to be smaller or less imposing or less threatening or less hideous than you’d thought when they’d been tucked away in the dark or lurking in your closet or under your bed or wherever it is that you lock away your bad things. Sometimes, when you drag scary things into the sunlight, whatever it was that made them scary alights into flame and then dissolves into ash and you are just left with – what? – words, images, memories, the pale outline of whatever it was that was so frightening, a shadow on the ground.

This is why sharing our stories is good. This is why, too, sometimes, exposing those things that hurt us or that might hurt us if we let them lurk in the dark and become frightening is also good. It’s not something for every day – we don’t want to spend all of our well-lit hours poking in the dark – but it is something, something that we need to remind ourselves that we can do, that it’s okay to do, that sometimes is necessary to do.

I am so grateful that you all support me so warmly in this space, and give me the courage to expose my scary things to light. Thank you.

(For a different look at what beauty light – and a good camera, and a gifted artist – can bring, see the work of the divine Ms. Chookooloonks today. She made me beautiful. She’ll argue with that, of course – she did argue with that – but it’s true. She made me beautiful by seeing beauty in me and by seizing that beauty and capturing that beauty and rendering that beauty into art. Would that we all had that gift.)