My dad wore Brut aftershave, the kind that comes in that opaque green bottle with the fake gold medallion. He didn’t wear it a lot, but it was the only aftershave that he used when he did use aftershave, and so it burned into my psyche – along with cigarette smoke (Players) and aged leather – as the smell of my dad. After he died, and I went to work cleaning out his home, I spotted a bottle of it in his bathroom, tucked at the back of a medicine cabinet, coated with dust. I thought, that bottle is probably fifteen years old, and then I shut the cabinet and went back to sorting through his things.

He had, as I’ve mentioned before, a lot of things. I hired a dumpster that remained parked in his driveway, and the process of cleaning out his home was one long cycle of sorting and deliberating and carting and tossing. Some things were easy to sort and toss – the ancient tins of soup and boxes of spice and broken furniture and old bedding that was too worn for Goodwill – but other things were more difficult, like the little plastic baggies filled with clover leaves – he was determined to find his four-leaf token of good fortune, it seemed – and I found myself, too many times, hanging over the edge of the dumpster, second-guessing something that had been thrown away. I didn’t get in, though. Not until I remembered the Brut. (continue reading…)

I labored over a post about this, about this dark anniversary, about how this year has changed me, about how I still cry. But the words were confused, the sentences messy, the paragraphs long, the ideas incoherent, and it occurred to me that I do not need to struggle to put everything into words. That not everything can be captured in words. (continue reading…)

It took me a while to figure why I was crying, why I kept bursting into tears at silly, random things, like an excess of dryer lint, or a dearth of toilet paper. I had just figured it to be hormones, or a passing mood, you know, the kind that you fall into when you’ve gone too many nights with too little sleep and then you open the cupboard and there’s not enough coffee for a full pot and you slump against the counter and you cry.

It wasn’t that. I wasn’t crying about coffee. (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…)

I’m struggling, a little. Maybe a lot. I’m not entirely sure why. Maybe it’s just me buckling under the weight of too many sad things. Maybe it’s that thing that happens when you realize that you’re not as strong as you thought you were, that you’re not invincible, that you can’t stop bad things from happening, that you can’t make happen all the good things that you want to happen, not all of them, not as many of them as you need.

Maybe it’s an identity crisis. (What if you’re not really bad, whispered a wise woman to me this weekend. What if you’re not so edgy? What if you are good, and soft, and vulnerable? What if you want that? What if? And I cried. Oh, how I cried.) Maybe it’s just my soul, tired from trying to figure all this stuff out. Maybe it’s all those things. Maybe it’s none of them.

It’s probably all of them.

I don’t know. I’m sick again, and my head hurts, and I’m tired, and I just want to lay a while in the shade of a maple tree and stare up through the leaves to the sky and the sun and let my mind go blank and just be. No thinking, no worrying, no fretting, no planning, no plotting, no fighting, no struggling – just being, there, in shade of the tree.

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…)

It’s my birthday. I’m forty years old today. Forty years old. Isn’t this the birthday where I get canes and bifocals as gag gifts and t-shirts that say things like I’m not old, I’m vintage and at least one coffee mug with the words lordy, lordy look who’s forty printed along the side?

I’m not old enough to be forty. Really, I’m not. It’s not that I fear aging or think that anyone over forty is hideously uncool – it’s that I just cannot believe that I am grown-up enough to have the numbers 4 and 0 apply to me in any context other than grade point averages. I’m not a grown-up; I’m a girl in a state of arrested adolescence. Sure, I have kids, but if anything that has only driven the point home more clearly: ain’t nobody here but us childrens. (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…)

(No, really. It’s an actual holiday. You should probably take the day off.)

(I’m taking the day off. I’m actually going to take a couple of days off. I need a little break from the Internet. My heart is heavy and my head is full and I just don’t know how to put it into words. I don’t know if I can put it into words. If I should. So. I need a few days. That’s all.)

Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs to be intubated? Until he can no longer sit up on his own? Until his lungs are compromised? Until he cannot breath on his own? Until my sister can no longer look after him on her own? Until, until…

The clock ticks so much louder now. Tanner’s condition is aggressive, relentless: his muscles are breaking down quickly, and as his muscles break down, so does hope. (continue reading…)