back a few years ago, when i was still frequently startled to discover that there were other people out there in this online thingy box, i woke up one morning to find i’d been given an award. i was more delighted than was strictly necessary, but the world of memes and blings was still a vast untrodden snowfall for me, and it looked right pretty. the bestower of said award had honoured not just me but another writer, so, curious, i clicked the link and wandered over to check out the company i was keeping.

and that was how i first stumbled across Vicki Forman. Vicki wrote a column called Special Needs Mama, part of the Literary Mama e-zine family, about parenting her son Evan.

in an ensuing email exchange the likes of which i never seem to engage in anymore, alas, i discovered that Evan’d had a twin, Eleanor, who died a few days after birth. and that Vicki’s elder daughter was Josephine.  had Finn been a girl, i wrote back, he’d probably have been Eleanor. or Josephine.

it was early 2007. it was the first time i had seen any shadow of my own reflection – in name tastes or in loss. and i found the idea that Vicki was out there somewhere immensely comforting, normalizing. i also found it thought-provoking.  she brought dignity and unflinching matter-of-factness to her narratives of Evan and her role as parent to a significantly disabled child. she did not pander to people’s pity, or expectations of a fluffy, inspirational happy ending. reading Vicki, i began to take steps towards writing my way out of a box i’d seen no other other exit to.

one of the most surreal parts of having lost Finn, for me, was the silencing effect it had. it created a space around me that felt filled with cotton batting, or a choking kind of insulation.  a dead baby is the conversational equivalent of a cement truck. i did not know how to introduce the subject in relation to myself, did not know how to negotiate the weight it carried without feeling awkward or skinless or somehow miscast. i was neither serene nor destroyed, which were the main culturally available motifs for my new role. i was simply…messy, then.  too messy and too vulnerable to even begin to invite attention to it all. and so this tremendously important part of me, the struggle with my grief and anger and fear and sorrow, became isolating and…unspeakable.

i was lucky, in that i was surrounded mostly by kindness. but people who knew me and knew of Finn skirted the subject, probably afraid of hurting me with reminders, probably afraid of saying the wrong thing.  i understood that. but in the midst of all that well-intended ignoring of the elephant in the room, i sat smothering under the silence and the elephant itself; the face i presented to the world a mask that ellided everything underneath.

i’d allowed my grief to be socially relegated to a little airless box, and i was choking in that box.

so i started to write about it, face-on, to allow myself to begin to explore here the things i desperately wanted to and needed to, but couldn’t, not aloud. and in doing so, i started to integrate my inner life back into the face i wore to the public, even this small, semi-private, semi-anonymous public out here online. it was enough.  i believe writing here kept me from suffocating  in my own bewildering loneliness and sadness.

mostly i think i’ve absorbed Finn’s death. sometimes, though, i’ll catch a scent in the air at a particular time of year, or read a story, or hear a pregnant woman dismiss risk as if she were immune, entitled, and scenes crash in on me, the horror reel of it all going wrong.

the grim neonatologist who came back to the delivery room to tell us, bluntly, that he would not make the night and then walked away. my baby’s tiny, punctured chest, only an hour old and already his body breached and bloodied while we were not even there to comfort. the machine-gun gasp and pound of the ventilator.  the  nurse who told me his blackened fingers and toes were a sign of something congenitally wrong, then the other nurse – when i finally got up the courage to ask – who stared at me surprised and said, no, he’s perfect, it’s just oxygen deprivation. the swell of fear and rejection that backed up in my throat the first time i saw him there in his isolette, splayed out, red-raw, so compromised, and how my mind hissed you’re going to die at my newborn son before my hand reached out without me and touched his and his fingers wrapped around mine and i was lost, in spite of myself, to wonder and tenderness, to loving him. the confusion of it all, the helplessness. the feeling of somehow having being stripped of the right to compassion by the crisis, and stripped of the right to hope.

all these swarm in and punch me in the gut and i am left gasping, stunned by what my memory has secretly stashed away.

i thought maybe i was crazy, the kind of closet cat lady who looks perfectly bland from the outside but one day snaps and ends up on the nightly news because the picture bombs in her head finally exploded.

apparently not. apparently it’s just my amygdala, a part of the brain “so ancient and original it’s present even in lizards,” where the raw fight-or-flight emotions triggered by significant trauma are preserved and kept alive. the brain cannot integrate or defuse those emotions. there they sit, preserved in neurotransmitter amber.

i have Vicki Forman to thank for the comfort of the amygdala, because Vicki published a book this summer, a book called This Lovely Life: a memoir of premature motherhood.  and i ordered it and ate it up and found myself reading it half in her world of the summer of 2000 and half in my own of spring 2005. and then she explained the amygdala, and i felt…once again…just a little more able to breathe.

Vicki’s book is not an easy read.  there’s no enlightened, illumined mama guru enriched by the smiling happiness of her disabled child. rather, the book tells the story of the trauma of the twins’ birth, Ellie’s death, and the unfolding story of Evan’s blindness, seizure disorder, and survival in a light that most of us would shrink from shining on our egos, our mother roles.  it is one of the most honest and troubling and beautiful stories i’ve read in a long time, and though Vicki is the figure at its centre, it is the evolving relationship between her and her son that the book stands as paean to.

in one of the cruel twists that life deals out sometimes, it seems that Vicki had just finished this book and landed a publisher when Evan, days short of his eighth birthday, died suddenly and without warning.  i read the book knowing that the child whose survival seemed so uncertain would grow to become the boy his mother wrote about at Special Needs Mama, but also knowing the heartbreak at the end of the story, the coda that even the writer of the reflections in its pages couldn’t see.

i want to thank Vicki for sharing Evan. i want to thank Vicki for consistently, at Special Needs Mama and in This Lovely Life, carving out a space of words and dignity that has helped me with my own processing, my own healing, my own understanding of how vast and fraught and boundless the word mother can be.

i want to encourage you to read this book.