I labored over a post about this, view 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.
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.
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.
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.
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.
Emilia wants to know what happens when we die. She asks a few times a week, on average, sometimes more, sometimes less, depending on whether or not we’ve spoken about my dad or about Tanner or about dinosaurs. Today, she asked because they’d been talking about the Easter story at school. She wanted to know why Jesus got to fly up into the sky, and Grandpa didn’t.
You burned him, didn’t you? she asks. How could he fly after that?
Explaining death is one thing. Explaining the cremation, the afterlife and Divine resurrection are something else entirely.
I don’t quite know what to say about Joannie Rochette. I’ve been stunned by her bravery, humbled by her strength, amazed by her determination in the face such terrible sadness. When my father died, it was days before I could even walk in a straight line, weeks before I could hold myself reliably upright. After losing her mother, Joannie Rochette strapped on her skates and competed for an Olympic medal. Incredible. Courageous.