Trauma and the odds

It’s been a while.

Here’s something I wrote at Glow In the Woods.

I didn’t really finish the post there. The odds got me again. Invasive Ductal Carcinoma. For fuck’s sake. It’s never enough.

The doctors have been quick to assure me that this is the good kind of breast cancer. Ok. Sure. We’ll see how that goes, says my inner cynic. The one who knows the odds and how they work.

I was supposed to have surgery tomorrow, but then after three years of dodging it – the incredibly contagious virus that the odds said I should’ve already had – I finally caught Covid and my surgery is delayed.

I like in bed at night trying not to imagine the tumour growing.

Send good thoughts, please. If you’re reading. I think things will be ok, but those of you reading here will know: the odds are real motherfuckers.

The odds

In two weeks, E and M will go back to school – this year separate schools – without mask or vaccine mandates, distancing, cohorting or any other Covid prevention measures. I’m steeling myself for a return to a campus with a staff, faculty and student population of about 70,000, where we are expected to be fully open ‘to pre-pandemic levels,’ meaning again, no mask or vaccine mandates, no distancing, no smaller classes, no prevention measures whatsoever.

Three of the four of us are fully vaccinated. One of us is only eight years old and therefore ineligible for a vaccine. Nine years ago at this time, I was just barely pregnant with him, terrified. The anxiety of those nine months trying to hold him inside and keep him safe with absolutely no idea how I was supposed to do that has never left me. And now here we are, reassured that Covid doesn’t affect children, children don’t get really sick, they don’t die. But some do. Some have.

I remember being told by doctors when pregnant with M that the ‘odds were really in my favour.’ But they said that the pregnancy before, too, and they said it for my pregnancy with Anja, who was conceived after two miscarriages. I remember laughing bitterly with friends here, the babylost, about odds. The odds are good, we’d spit and chortle. Not for Medusas like us. We knew that the odds meant someone always lost and that someone could be us as easily as it could be someone else, and for fuck’s sake, why is it okay for us to pass odds off as if it’s okay if it happens to someone else at all?? ‘Kids don’t die from Covid.’ But some do. Some have. And they have lost everything to the odds, and so have their families. Their mothers, fathers, siblings, grandparents. Fuck the odds.

Here we are. Nine years later. This kid I held my breath for for nine long months. Tall and gangly and whip smart and witty even if most of his jokes are fart jokes. What do I do? How do I assess these odds, the risks? I’m not an epidemiologist but I’m no dummy and I can see the calculations that are being made: how many people can we sacrifice to opening up? What is an ‘acceptable’ loss? Maybe if you’ve never lost someone that you never should have lost – not like a grandparent to a great old age, but like a child who doesn’t get to grow up, or a spouse who doesn’t get to see their child grow up – maybe then you can be okay with this, thinking, well, the risk is low and I can feel comfortable going to a football game, a concert, a crowded classroom. But when you’ve been on the losing side of the odds, when you’ve already had the experience of calling a funeral home to arrange the cremation of your child, how do you do this? How?

When I was pregnant with M and trying not to lose him one of the hardest things for me was not really knowing what might help in that effort. We never knew why Anja died. So many of my friends never knew why their babies died. How could we keep them safe if we didn’t know what was killing them? Not knowing is driving me nuts now, too. I feel like there has been a total abdication of responsibility onto the individual once we are vaccinated: now you decide what risk is acceptable to you. But I am not an epidemiologist. I am not a Covid modeller. I am not an expert in children’s respiratory disease. And he is not vaccinated. How is this okay? How is it okay to expose all of our children under twelve to a virus that has already killed so many?

I can’t take comfort in the odds. And I never thought I’d ever in a million years think maybe he was safest when he was inside my baby-killing body, but these days now I’m wondering.

It’s getting really late on a Friday night. My eyes are shot from hours and hours spent on a screen today, this week, this past year. I don’t know what made me come here, so late, when I’d just decided I could not read a single other application file, but for some reason I did come here and for the last hour I’ve just been reading random posts. Posts from 9 years ago, 8 years ago, 6 years ago. Posts from every year. Reading all the comments. All those beautiful, smart, kind, supportive, loving, angry-at-all-the-right-times, holding-each-other-up comments. And god, how I miss it. The connection. The friendship. The feeling that we all understood each other and that there was always someone there to call back through the long night at you: “You’re not crazy.” “We know.” “She was beautiful.” “She shouldn’t have died.”

We were so good to each other. We took such good care. There were women here who I knew. Women who knew me better than most of my family and ‘in real life’ friends. Women I still think of, and wonder about, and hope the best for. Reading all those comments again, I remember the stories, the care we gave each other, the total acceptance of all the ugly, rage-y, necessary parts of grief, the love we spread round when someone needed it, and when didn’t someone need it? The internet really has been good for something.

No one reads here anymore (why would they when I don’t actually write haha) but just in case you were here back then and you ever come back, please know how much I miss you, how much you’ve meant to me, how much I needed you, how grateful I am for all we shared in this space that feels almost sacred to me now. A space she occupied when she could occupy no other. A space we made together, holding each other up. Thank you.

Nine

Her ninth birthday passed and I didn’t mark it here. I thought about writing throughout the day, but…

Nine. Some people remembered. Most didn’t. My mom sent flowers, and we had a pretty little cake, gingerbread spice with whipped cream icing that somehow felt perfect for a girl with a wintry ninth birthday.

When E turned nine she had a slime making party and a sundae bar. It seems it was not that long ago, and somehow makes Anja’s ninth birthday inconceivable.

M and I talked about it on the walk through the forest to school. He is matter-of-fact and sweet. “I’m going to find some things for the Anja jar today, Mommy,” and he did, bringing home three little sticks I could just barely squeeze down the sides of the jar, packed with nine years of collected rocks and shells and tree cones and sea glass.

We love you, Anja. We miss you.

I was born in the rain

M and his best friend wrote this song together. It is completely awesome and amazing in its own right, but somehow it also tugs at my heart, my missing of Anja, all the ways you can be born, and how it matters. Now you can see where I was born…I was born in the rain…the end.

Eight

I remember when I truly thought that life could never be good again. When I though I would have to endure the skin-crawling agony of those early days, months, years forever. That I would never be happy. That the loss would always be as excruciating. I suppose it is as excruciating. But it isn’t so present. It’s a constant hum but only rarely now a genuine wail. I miss her. I wish she had lived. But today I picked out a cake with pink rosettes and I didn’t cry. I went sledding with M and whooped in genuine abandonment to the joy of the moment, the speed, the snow flying in our faces, the feeling of his still-little body in front of me on the sled. I helped E with her homework and didn’t once think of how eight years ago I was just being induced to deliver Anja. It’s all there; it shifts and shimmers behind everything else, all the busynes of our regular lives that are, indeed, – after all this time – regular. I miss her. I love her. Tomorrow she would be eight. An impossible number. An impossible loss to comprehend but somehow folded into the fabric of this messy life, our messy lives, this family.

We love you Baby Cheeses. We love you sweet baby girl. We love you, endlessly, always, ours.

It’s been a long while since grief has hit me in the way it has over the past few days. It came out of the blue and at first I didn’t know what was happening to me. I’m at a conference in England, amongst colleagues and students, far from home, and I’ve felt awful: low and tired and just not right. And then the tears came. They started to seep out yesterday morning in a crowded conference room, almost entirely unexpected. I’ve grown so unused to crying in public.

I’ve been crying intermittently since, sneaking into bathroom stalls and hiding behind my hair when I can’t sneak away. I went on a walking tour today to learn about the history of slavery in Liverpool and we went to the Anglican cathedral, one of the largest cathedrals in the world. I’m not religious, but whenever I travel, if there’s a church where I can do it, I light a candle for Anja. I slipped away from the tour, detoured into the toilets at an opportune moment and went back to the quiet, beautiful Lady’s Chapel and lit a candle for my girl.

In the main part of the church, under a giant stained glass window, there was a message that felt like it was just for me, today. And then I visited the graveyard, trailed my hand along the tops of headstones and held in my heart the babies and the mothers who grieved them. I sat in the shade for a bit, waited, listened and then headed back to the conference.

Crying in bathroom stalls and putting on a brave face is almost harder than I remember it and this blindsided grieving present-me feels very proud of and tender toward past-me who did this all the time, everywhere and every day. Seven years ago I would probably have been appalled to know I could still feel this bad sometimes. I probably would have been equally appalled if I thought I wouldn’t.

Six-year-old boy

He stops to pick me buttercups on the way to school each morning. Splash of yellow clutched in his warm hand, the hand that will be caked in dirt when I pick him up after school from digging for lost villages at recess. His warm hand, still little, reaching out for mine while we look for the snake who basks in the long grass at the base of the big old fir, and his still-small voice asking question after question. Once, I so clearly imagined a future with two girls, sisters, and now I can’t imagine a present without him in it. The calculations never work out right; there’s never any real satisfaction in getting to the answer that doesn’t feel like a solution. But he is here and for as long as he is, I accept the buttercup offerings, tiny jars and cups of them all over my office and the kitchen table, and his warm, grubby hand and sweet, curious voice as we walk at the edge of the forest, still dark and cool on these early summer mornings.

On wrinkles and sea glass

I accompanied M’s kindergarten class on a field trip this morning. At one point, one of the little boys turned around to M and said, ‘is that really your Mom?’ When M said, yes, the little boy added, ‘she looks too old to be a mom.’ I’m not going to lie: that stung. (Especially because I’ve lately been worrying he’s right.)

I do look old. And sometimes – like today – that hurts a little, and is confusing, too, because, wait, I just turned 30, what happened?

In fact I turn 45 this year. 35 to 45 was a rough decade. Three miscarriages, one baby stillborn, one PhD, 3 years of precarious teaching, 3 years (and more to go) on an early tenure track, pregnancy after loss, parenting, never sleeping….That 10 year challenge that was going around on social media recently? Really fucking depressing for me. In 10 years, I’ve easily aged 20.

Sometimes I can really own that age though. Because it comes with experience that I would never have chosen but that I know has made me….a better person. The me of 7 years ago is gagging on that sentence right now and screaming at 2019 me: you were already a good person, you didn’t need to be better, your baby didn’t need to die for that!! And she’s right, too. Me of 2012 was right: my baby shouldn’t have died. Me of 2019 knows – for real and for good – that she did, and this is the aftermath, and a lot of it has been total shit and it has made me look like I’m 55 instead of 45 and I’ve spent probably a good half of the 7 years between 2012 me and 2019 me either sobbing or inwardly seething, but….Sometimes there really is a kind of grace I can feel and recognize. I am interviewing bereaved parents right now and it has been a hard and beautiful experience. I feel like I am being given a gift as parents tell me the stories of their babies, their so loved and so deeply missed babies; I add each of these baby’s stories to the story of Anja and of all the other babies whose names and lives I have learned and loved in the last 7 years. It is a gift and a tremendous responsibility and these wrinkles attest to both the gift and the responsibility. I have a jar on a shelf in our living room where we’ve collected rocks and shells and sea glass from places we’ve been without Anja; we go somewhere, we remember her, we bring something home to show that she was there too, with us – that she was here. The jar and its contents are a record of all the times she’s crossed our minds. My face, too, is a record; not as beautiful as the soft green and gold of the salt-worn glass, but a record nonetheless – a record of love, of loss, of laughter and tears, and anger like I never imagined, and more love, a little acceptance, and finally, maybe, some grace. It hurt to hear those words, but maybe it wasn’t so much out of vanity as it was over the memory of all that is etched on my face and that remains unreadable to most who look.

(But still – I appreciate my partner’s response by text when I told him about this kid. He wrote, ‘did you tell that kid he’s an asshole?)

Interested in participating in a research project?

As readers of this blog most likely know, I conduct research and teach at a university in Vancouver. Some will also know that I am a trained archivist, and that my field of research is archival studies. I’ve written before about the ways in which A’s death affected my studies as a PhD student and altered the nature of my research agenda. For several years now, I’ve been thinking about how grief and bereavement fit into my chosen field: how might a deeper understanding of the relationship between grief and recordkeeping impact archival thinking and practice? Grief is something archivists encounter pretty regularly; for example, a recently widowed donor might bring in her spouse’s records, or a residential schools survivor might comb records to find clues to what happened to her siblings or other family members. But archivists don’t really talk about grief – at least to each other – and there’s very little discussion about how having a better understanding of grief might help us to provide better services and care to the people who donate and use the records we preserve.

To address this gap (in part at least), I’m conducting a study that aims in part to fill that gap, to begin a conversation in the archival field about bereavement and recordkeeping, about emotion in the archives, and in particular, about grief in the archives. (You can read more about my work in this area here: https://blogs.ubc.ca/recordkeepinggriefwork/)

In my years of writing here and of working in other ways, too, to preserve A’s memory, I’ve thought a lot about how what I’m doing – in some ways – is building up an archive of my love for her and about how doing that work keeps me connected to her memory. I’m interested now in talking to other bereaved parents about their own experiences of grief and recordkeeping. Recordkeeping is a term archivists use to encompass making, using, organizing, and keeping records. A record can be anything a person makes, uses, or keeps to preserve evidence or memory;  in this project, we define a record as any document or object that you make and/or keep to remember your baby. You might keep records just for yourself, or you might share them with others. You might keep some for a short while and others forever. Records can include things like photographs, ultrasound images, journals, letters, emails, blogs, hospital records, etc. They might also include objects like a stuffed animal, an item of clothing, a special rock or dried flowers, etc. Records might also include ephemeral items that are important to you because they are connected in some way to your baby or your memory of your baby. Essentially, for this project, anything you make or keep as part of your effort to perpetuate the memory of your child can count as a record.

If you’re reading this, and you’re a bereaved parent who has built, or is building up, a collection of records – of any type – related to your baby and/or to your experiences of bereavement, and if you are interested in learning more about this research project and about possibilities for participating, please send me an email at jen[dot]douglas[at]ubc[dot]ca. I’ll be happy to provide you with more information about the research objectives and methods and to answer any questions. Please also feel free to share this invitation with other bereaved parents you think might have an interest in the project and/or in participating.

I don’t want anyone to feel pressure to learn more or participate; this is 100% voluntary, and I understand it won’t be of interest to every bereaved parent to take part in this type of conversation or work.

Thanks, as always, for reading here and for helping to hold me up all these years. I often think I would never have finished my PhD, never made it into the academic position I now hold, without the support I have received from readers of this blog. I’m forever grateful for this community.