Holding the torch
I had such good intentions in writing this book. I wanted to give something to newly grieving parents, to say, You are not alone in this devastated landscape. There are so many of us here with you, and, despite the devastation, this is still a beautiful place. We have walked it. Here is my fragile map, here is where the path emerges, here is how the parts relate to one another. It is frightening, it is painful; yet, it also inspires awe in its devastation. Unexpectedly exquisite things grow here, things you would never know about had you not set foot in the devastation. And if you can keep putting one foot in front of the other, the mud firms into a path beneath your feet, rains wash away the dirt from your body, you find debris from which to build a shelter, and, after a time, you start to notice small signs of life.
What I’d forgotten, of course, is that in the beginning, you can’t see any of that because your eyes are so puffed with tears that they can hardly open. Even if you can open them and blink away the salt, you’d have to peel your hands from your face, the hands that are the only things keeping your head from hitting the floor with a dull thump. I am remembering all of this because we have, this week, been ordered back to that devastated landscape.
My sister’s firstborn baby girl blows bubbles in her sleep, wrapped in layers of flannel, tubes and cords intruding on her soft skin. Her condition doesn’t have a name yet; letters and numbers hover menacingly above her clear perspex box like a fatal bingo call. Whatever the ultimate order of the numbers, the real damage is being done in her cells, where her mitochondria—tiny molecular engines within each of her cells—are stalling. Not all of them, and not all at once, but for each one that stalls (one test says 78 per cent, but that may just be of her blood cells), a cell is deprived of the energy it requires for muscle activation, for digestion, or for production of proteins. Whatever the cell’s purpose, it is short-changed, and her body has to work harder to achieve the same result.
She frowns, sighs wearily. Her blood shows high lactate levels, as though she is running a half-marathon rather than just lying there. Her heart is working so hard, it is enlarged, stretched. Sometimes it too gets tired, and slows. Alarms go off, the nurse comes. She presses the button quickly, then loosens the flannel layers, talks gently to her—‘Hey, little one’—turns her on her side, and pats her small bottom firmly until the numbers on the heart rate monitor rise, and we all start to breathe again.
It has already been such a hard road for Mia, my tiny flannel-wrapped niece. An early evacuation from my sister’s womb due to her alarmingly small size, then a transfer to the Children’s Hospital with a gut infection and a heart murmur; so much prodding and poking as the doctors cajoled the secrets of her illness out of her body.
And now that they are decoding those secrets, it looks like it will be a short road too. At first they said she might live to two; then twelve months, if she’s lucky. Even that may be optimistic.
So here I am, back in the wasteland, making the same wordless sounds, stepping through the familiar script of denial, anger, sadness, magical thinking. The pain doubles when I think of my sister and her pain, of her and my brother-in-law’s tenderness with their fragile little daughter. Could this really be coincidence? That my mother, my sister and I all lose our firstborn daughter? I know that this is magical thinking, I know that these losses are pure dumb misfortune, but that doesn’t stop my brain spinning theories, trying to construct sense from the senseless, to find a plot line or a moral for the story.
I hold my sister tight. Sob into her shoulder and try to hold firm for her sobs. I want to give my sister all that she gave me in my most broken hour, I want to give her everything I wish I’d known. But, despite the familiarity, this is a different wasteland. My map turns to soggy tissue in my hand.
I tell my law students that the value of a good set of study notes isn’t the content. You can have the most accurate and concise notes but they won’t help you a bit if you haven’t developed them (or at least worked through them) yourself. The value is in the process of boiling down notes into summaries, of banging your head against the law, getting confused and then getting a little bit clearer. Grief is the same. I can spill the beans on what makes sense for me—on the mechanics of my beliefs about where Z is, how I honour her in my day-to-day life, how I let the grief move through me, like a sneeze, when it appears these days, intense but short-lived. Whatever your loss, I want to make it easier for you, to help you short-cut through the pain and the banging of one’s head against the finality of death. But my mechanics work because I have crafted them for my own head, custom-built them around my irregularly shaped heart. Yours will be different. Just know I am here with you, holding the torch.
Not many people
have a baby daughter who is a star.
The light and heat released
with her little five pound eight body
is still travelling
through the heavens
will bounce,
and one day light upon
someone’s eye
as the light from a star.
Not many people (I like to think)
have a baby daughter who is an ocean
(and at the same time, rain).
Her water atoms
went up like a mist
found new friends
among the atoms
of other babies
grandmas
well-loved dogs.
And though it was scary to fall
(as rain)
when they hit the ocean
it felt like home.
(I like to think) Not many people
have a baby daughter who is a ballerina-shaped fuschia bud.
Her nutrients—every molecule that made
her soft skin
her fingers grip
has gifted itself to the earth
(I wouldn’t have been so generous)
except for a few of the most beautiful
which circulate still in my blood.
‘You have a daughter,’ they say
each time they get pumped through my heart.
‘You have a daughter,’ they say
as they tend my broken cells.
The others
(there are millions)
find themselves
pulsing along a green stem
willing a bud to open,
feeding the thing that colours the petal,
scenting the pollen dust,
unfurling the leaf.
Are chewed on or breathed in by
living things,
And find a new home in them.
She is here.
Here.
Here a thousand times but also everywhere.
She makes me weep
at how clever and beautiful she is
And at my own small flimsy wish
For a more conventional baby.
(Still her—but here in the more conventional way)
clear nightful of stars
or a big stormy oceanful of ocean
for me to know
(again, as I’ve always known)
how many babies it takes
to make up the sky.
Cremated and uncremated.
Missed and kissed.
Sung to and unsung to.
Innumerable,
visible
and each such a particular
little pinprick of light.
(August 2011)