Double edged

"There it is"-- I surprised myself with how excited that came out. 

"I see it."

I let the credits roll to the end, then rewound to pause with our son's name just crossing the sea-sky horizon line. Over a year ago, on his 6th anniversary in fact, we contributed to the Kickstarter campaign for a movie called Return to Zero. They had a crazy-good cast and a babylost dad for a writer-director. I hoped they'd get it right. 

Turns out, a lot happens for a movie between the end editing and when the general public gets to see it. For this movie, that included being pitched to various film festivals, and eventually being selected for two. And even more eventually, a deal for TV distribution, on Lifetime.

We couldn't watch the movie the night that it premiered-- we had a friend staying the weekend, and this was something we had to watch just by ourselves. So we recorded it and watched it on a weeknight. And I've been trying to figure out how to talk about it ever since.

A few days before we watched the movie, I read online someone talking about how her family is split into readers and not-so-much-with-the-reading individuals. People in the latter category, she said, believe that if a book is any good, eventually someone will make a movie of it. The first thought that popped into my head was "but what if the book is your life?" Not in the way that some books inspire entire fandoms, but in the very literal sense of key event in this movie is also a key event in your life, and the movie is about that?

People have serious, long, branching arguments about how much liberty filmmakers are allowed to take with source material, and about how changing this one thing here completely destroys the narrative from the book. I've witnessed a fair share of these discussions, heck-- participated in more than a few myself. But what if there is no canonical narrative? What if the world is splintered into a million versions of the story? I so wanted them to get it right. And suddenly, just on the precipice of watching the movie, I realized that "getting it right" was a lot to ask. Because what I was actually asking for was for them to have gotten it right for me, for how I see the world, for how I experienced my son's death. There's a lot of us out there. And while there are the bits of living with your child(ren)'s death(s) that I'd describe as classic hits, there are also parts that are far less universal. 

I realized that I both wanted the movie to be good and needed it to be good-- after all, my son's name is literally attached to it.  That is a combustible mixture, and sitting on it was making me apprehensive. Because what if it isn't good? What if going forward I wouldn't be able to refer an asshat to that movie for clarification? What if, instead, an asshat would be able to use it as ammunition? 

Knowing that we were going to watch the movie, Monkey asked me to pause the screen at the end with her brother's name on it. The next morning I turned the TV on for her to see. As she studied the screen, she asked whether the movie was good. I skipped a beat, unsure how to answer. 

Because here's the thing. Minnie Driver is impossibly great. She had perfect pitch, hitting the exact right note with her face and her body every millisecond she was on screen. Bewilderment, anger, frustration, indignation, determination, indifference, shock, and-- and I have no words for how deeply I appreciate that she could play this so exactly right-- the hollowing grief. Twice during the movie I made JD chuckle by yelling out "Fuck you, lady!" a beat before Minnie's character delivered a more dignified and more appropriate retort. The plot of the movie doesn't exactly match our story, relationships in the movie are not exactly like the ones in our extended family. But the cast is great and they get at the emotional truths of the life after so well that the context in which they operate doesn't much matter.

Except for this one thing, one scene really. The scene that goes straight to the million fractured versions of the story issue. See, one of the foundational views of my life after is that for me there is absolutely nothing in the plus column of A's death. I was already a pretty kick ass mother, and I certainly didn't get to be "more available" to my living children, either the one who was already here when A died or the two who came after, because he died.

If I was to name one good thing that I found in the after-space that I wouldn't have had if A lived, without a doubt I would name the community of babylost parents. The people I met online and in person in those first desperate months, and who are still my friends now, seven years on. This community at large. It sucks that we are here, AND I am glad to know you. But that's me. And I didn't make the movie, writer-director Sean Hannish did. And I get that the scene represents a true and important understanding in his narrative.

I told Monkey that the movie was good, that I only had one real issue with it, and for a movie on this sensitive a subject only having one issue is not bad at all. Fortunately for me, I don't see the character who articulates this view as central to the narrative, and I certainly don't think the scene is. When my DVD arrives, I will skip over that scene. Julia's cut, if you will.

Had you heard about the movie before it aired? Did you see it? What did you think? 

More generally, have you ever had to render judgement on a project that hit close to home, whether in the babylost realm or not? How did you feel going in? How did it turn out? 

hard hearted

I am grown hard hearted you might say.

Grief - which might have softened me and uncovered my humanity - turned my core to stone, you might say.

If you did not know.

Sometimes I do not know.

I think of him, wait for grief to rise up and bubble to the surface, tears to come, grief to reassemble, manifest in the centre of my soul - but nothing comes. I wait to be strangled by the loss of him, for my arms to lift themselves up, shocked and empty from the lack of the weight of him. Nothing comes.

I try to write, show the world that still I miss him, that my whole self is changed and nothing will ever be the same without him but the words seem bland and empty now.

I miss that pain. I hanker for it. I ache, in a way I never thought I would for a bottle of grief to take out and tip up on my sleeve to sniff the scent of loss and feel it fill my nostrils, freeze my brain. I want to huddle, struck to stone by the loss of him, the utter total disappearance of my boy. I want to stare at photos and feel tears stream down my face, flicking away from them as child or husband strays to my side. I want to remember when there was no way to make it through a day without saying his name. I want to be back in the supermarket, telling a horror struck assistant over frozen peas that my baby died and so I can't cook a proper meal just now. I want to be folding baby clothes and finding places to hide them, cramming crates into a cupboard and forcing coats and blankets over them, tears of rage and hollow pain pouring down my face. I want to be in sunlight, the world dark around me, furious the world is spinning, wind is blowing, sea crashes and days continue. I want to hear his loss in every song on the radio, pick up every book to read and find a Freddie in the pages. I want to flinch away from baby aisle and pushchair, avert my eyes from bump and newborn, shut the computer in despair as another pregnancy is announced, another baby born.

But time has moved on. The days that sparkled with over bright reality, harsh and glaring and scraping the surface of my skin till I was raw and broken are gone. I felt everything then - and I hated it. Longed for it to end.

My life has grown to hold this pain, pushed it small, forced the grief and disbelief to a tiny molten core inside me, encased and covered by a crust I cooled and grew to cover it.

I can ignore the core. I exist around it, function, smile, talk of my children and skip a beat as I describe them, choose to keep him private. I have learned to slide my tectonic plates over the places where the fault lines are, pushing the broken, ragged places beneath a smoother surface. What was once a brutal landscape has softened, moulded, eroded away, grassed over, become old and gentle.

And if you saw me, you might think me heart hearted.

You might think I do not care. You might think I learned to live without him. You might think I had recovered.

***

I watched one night a story of savannah; the dusty landscape, parched and bare and half dead itself with bare branched trees, empty river, devoid of food or greenery. The smallest elephant in the pack gave up, lay down, stayed down. His bewildered mother, on her knees, tugging at him, lifting at him, trying to pull him back to life and her desperate moan, her grief, her utter helpless disbelief to lose him broke through all the defences I had built.

It was her moan that broke me. It could hardly have been more human. I do not think there could have been an ounce more pain contained in it, not if she had had words to say to us.

I cried for her. Gasping, wrenching, sobbing tears.

That's how recovered I am.

In the early days I had a million triggers; it seemed as if the world was determined to bring me down at every turn. The triggers are more subtle now and often unexpected and in a strange way I welcome them at times. What triggers your grief? Do you have ways to manage them, have you learned to accommodate them in your life or have you had to change to avoid them? Do you, like me, ever welcome them?

How I Came to Hold You: an interview with Ben Wakeling

As a child I used to be rewarded for good deed done or consoled about childhood's slings and arrows with trips to the bookstore.  Among the rows of books, at home with the familiar smell of paper and ink, I was allowed to roam in pursuit of my newest treasure or my most recent salve.  Back then -long before the internet and online used book stores- that small store and its selection of tomes held what I believed to be the entirety of all books everywhere.  I suspect that somewhere in that bookstore there was a section for books written about grief although I never did see it or if I did I never understood enough about the truly sad things in the world to give it much more than a passing thought. 

The most comforting smell in the world to me is not that of my grandmother’s banana bread wafting from a warm oven.  It is not the smell of the gardenia perfume that my mother always used to wear.  It is the musty smell of books well loved and worn.  It is no surprise then that the first thing I did after returning home from the hospital after our son died was to search for books that I could wrap myself in and read words that would convince me somehow that I was not the only person traveling that lonely road.  

How I Came to Hold You by Ben Wakeling is a compilation of stories about people who have walked that same lonely road.  They are the stories of loss that are so familiar to those of us who find ourselves at Glow in the Woods.  But they are also stories of love and how it was to cope with such profound grief through subsequent pregnancies. 

Burning Eye and I had the opportunity to ask the author some questions about his own personal experience with baby loss as well as his experience and writing this book.  Thank you to Ben for being generous with your time and responses. 

 …

What made you decide to take on the very emotional task of writing a book about baby loss? 

I had previously written a couple of humorous, anecdotal books about fatherhood, and wanted to stretch myself to write something more serious and meaningful...something that would have a tangibly positive impact. I decided to write for a charity, and after a short consultation with the readers of my blog I chose the charity Sands.

The proceeds of this book go to Sands. What would you like us to know about this organization? What kind of work do you do with them?

I'm only affiliated with Sands as a member - I don't work for them, either on a paid or voluntary basis. They work tirelessly to help support parents and families who have lost a child, as well as focusing on improving the care they receive and funding vital research into the prevention of stillbirth and neonatal death. They aren't a huge charity - and many of them work on a voluntary basis - but the work they do is priceless.

How did writing this impact your own journey through grief after the loss of your baby?

By the time I began writing this book I had come to terms with the grief that I experienced following our miscarriage. As upsetting and distressing as it was, we lost our baby quite early on during my wife's pregnancy - about 9 weeks - and so we hadn't had the time to really bond with our unborn child. What it did highlight to me was the incredible endurance of the human spirit in the face of the most awful circumstances. The raw courage of the parents in my book - and any parent who has lost a child - to simply put one foot in front of the other astounded me. I have no words to describe the admiration and respect I have for anyone who has suffered the death of a child.

Why did you choose not to tell your own story in the book?

I wanted to tell the stories of those who had suffered a loss later on in pregnancy or shortly after birth to highlight to anyone enduring the same trauma that the grief can be managed, and that there will - one day - be a light at the end of the tunnel.  Sands also works primarily with families who have suffered a stillbirth or lost a baby shortly after birth, and so choosing families who had endured similar traumas dovetailed with the work they do.

How did you find and choose the families you interviewed?

I advertised in local newspapers, and asked for people to contact me via Twitter and Facebook. It was the most effective way to obtain case studies, because in advertising for families who had experienced loss I would only be approached by those who were willing to share their stories. 

How did you connect with the parents whose stories you tell in this book?

I have an immense amount of respect for the courage shown by the parents I interviewed.  Here I was, a complete stranger, sitting in their living room and asking them to tell me the details and emotions surrounding the darkest days of their lives. I began by reassuring them that I would never push them to tell me anything they weren't prepared to; I was approaching them as an author, not as a journalist. I also avoided preparing any questions beforehand; I didn't even have a notepad in the majority of cases. It would have restricted the interview too much. Instead, I just placed the voice recorder on the table and asked them to tell me their story. I found that the conversation flowed naturally, and that the parents were willing and open to share their thoughts and feelings with me. There were some interviews, which lasted in excess of two hours in which I asked just two or three questions.

What led you to write the stories as interviews instead of having the subjects write their own stories?

I wanted the book to flow from one account to the next, and this could only really be achieved by keeping the same writing style. I've always maintained that it is the parents' stories being told, it's just that I'm the one who wrote them down. There was no creative license involved - the subject matter was far too sensitive and personal for that to have ever been considered. I made sure that I sent a write-up of each parent's story to them before publication, so they could check for any factual errors which may have crept in and be perfectly happy with the result. Many families said that telling me their story was quite a cathartic experience, and seeing their experiences on the page in black and white allowed them to begin to make sense of their tragedy.

Your subjects for this book are all couples who, after their initial loss(es), are either pregnant at the time of the interview or have already gone on to have another living child. All but one of these couples stayed together after the loss of their baby or babies. Secondary infertility and divorce are not uncommon experiences after the loss of a baby. Was it intentional to only profile couples who went on to become pregnant again or to have another baby and who remained in the relationship? If so, why?

Yes, in part. When I first met a couple of representatives from Sands we sat down and discussed the theme for the book. It was noted that there was very little in the way of literature which covered the unique emotions, experiences and challenges faced by parents who had lost a child and then gone on to become pregnant again, and so it was decided that the families interviewed would meet this criteria. The fact that the majority of the couples remained in a relationship following the loss of their child (or children) was more coincidence than judgment.

There is a lot in these stories that resonates with all of us babylost parents. Something familiar: the emotions, the experiences with the medical profession, picking up the pieces, deciding to try again. Who is your intended audience for these stories? Who are you hoping to reach?

Primarily, the audience is those who have suffered the loss of a baby. Many parents feel like they are alone in their experiences and emotions after their baby dies, and one of the most common pieces of feedback I have received from those who have read the book is that it helped them to realise that they are not alone in the challenges they face. I think the book also allows those who are on the periphery of baby loss to have a small insight into the mind of a grieving parent; perhaps friends and family who know a loved one who has lost a child. It goes a small way to help them understand what the parent is going through, and how they can help.

There was a common thread amongst these stories of medical mismanagement or poor care. Did you find that these experiences to be true in a widespread way in the UK? Were you trying to make a statement about the state of prenatal/postnatal care in the UK?

Fortunately, from the stories I have heard and the feedback I've had, poor care is only experienced in a small percentage of cases. In the majority of instances the families are dealt with sensitively, and with respect. There are certainly improvements that can be made in some areas, and there will always be instances in which a member of the hospital staff mismanages the situation, but thankfully this is not widespread. I certainly wasn't trying to make any statement about the state of care in the UK; I have a lot of respect for those who work in care and medicine.

As a writer, what sort of writing did you do after your loss? Did you tell the story to many people around you? Did it help?

I didn't write much about the loss, as we kept it to ourselves, only telling close friends and family. My writing would have taken the form of a blog post, and I didn't want our loss being widely known at that point. Those who we told were incredibly supportive; a couple of people didn't say anything to us, because they weren't sure what to say; which was quite upsetting, but understandable.

You can find more about Ben, Sands, and How I can ot Hold You at:

http://www.sandsbook.co.uk/

http://www.benwakeling.co.uk/

gone

Four years. On Sunday it will be four years since I held Freddie in my arms while he breathed slower and slower until I could gently feel his wrist, that tiny, purple-cold hand already turning white and know that I could feel no pulse, that he was gone. That eleven days of fraught love, fierce hope, fluttering joy and brutal instinct had subsided into a quiet room, still bed, arms that held.

I've tried to remember how to summon the tearing pain I felt back then, honour him in some way with eleven days of memories, quiet time, thoughtful words. Tried to find some way to make meaningful the loss of him, the hole of him, the whole sorry mess of death and destruction and all the ribbons of grief that have tied themselves around the feet and limbs of our family.

I could find gratitude. Friends have surrounded me in community this year, making daffodils for him, posting pictures of them from all around the world as they dance and shine and call a little baby boy to memory. Gratitude I can do. I can be grateful for finding gratitude.

I could find rage. Rage that when one of my children changes school next month I will have to find the words to explain that yes, it was four years ago, but she is still affected by her brother's death and that everything they learn about her must be tempered with the understanding that she has this loss in her soul. Rage that when people can't find their way into the mind of my youngest daughter, they have to remember that she locked up sadness and hid it inside herself and learned to be impassive when she was just five years old. Rage to see my false jollity hurting my biggest girls, old enough to know I'm faking, not worldly wise enough to understand why. And wondering if it means I'm okay in there, behind the jolly. I don't want that for them. Rage that all I can do on his birthday is try to smile for as long as the girls are looking at me, that we go the day without saying his name, that we laugh and make the best of it - so British are we - and then I look back at the photos in the evening and there is sorrow written across the face of the man I love. And he probably didn't even know it was there. Would probably say it wasn't there. But I know his face and I know it was.

I could find regret. Regret and resentment for a boy who had dark eyebrows and who never got to hold my face and utter the words his brother does - 'More! No! Here! Go! Again!' - that Freddie looked for me in need just once, when he crashed and they jerked him back and I saw him eyes wide and alarmed at the fuss and I was behind the mess of nurses and thoughtless registrar and couldn't ease him. Wasn't the person for the moment. I can find regret that four years have passed and family life is busy and sometimes the candles for each of his eleven days are not lit till late at night, resentment that his brother broke my thoughts of him by getting ill during those days and I had to wrestle my focus, look at now - not then - and I was angry at that. Angry at them both. At both my boys. Together.

I should be angry at them both for colluding to eat all the biscuits or for drawing on the wall, not because one is dead and stopping me from dealing with the others asthma and the other has asthma and is stopping me concentrating on the other being dead.

That's not how it should be.

But I couldn't quite find the babylost mother in all of that. She was missing.

Then the news arrived. A beautiful young woman lost. A daughter, a sister, a mother, a wife. Someone with it all before her, a family who had already suffered enough, a family broken to pieces from out of the blue.

And it all came back. I left the house one day and when I came back our world had shattered. A parent should not have to tell the world a child has died. Sisters should not sit, shell-shocked, asking again if this is true - how can it be true? How can life become death? No one who loved should have to pick up the pieces, carry on, make the best of it, fill the gaps, learn to smile again. Keep going because there is no choice and you cannot simply die along with them.

I can see them, in my mind's eye, just like I see every family who pitches into grief. The sofa still feels the same when sat on. Meals must still be cooked for hungry children. Deeds must be done, from the extra-ordinary horror of arranging a funeral, to the mundane of putting out the bin. Life stops and carries on and your head feels a million miles wide, light as air, deranged by the ordinariness of the bizarre.

One minute you are just a family and the next minute nothing will ever be the same again. Beyond pain, that other father said. And yes, I see the sense and madness in that. Losing a child is a place beyond pain and you learn to live there.

Four years. My boy should be four years old on Sunday. I've had long enough to know this happened to us, long enough to be back to happy days and a healed(ish) heart.

But he's gone - and I still do not really believe in it. Do not believe these four years have happened, that we've lived them and survived them.

Just... gone... just like that. Gone.

People talk about the stages of grief: denial, anger, bargaining, depression, acceptance. Is it a lineal experience for you or a cycle that repeats? How do you cope with your changing emotions? How do you cope with hearing about loss in the wider world since losing your child? Does it affect your emotions in anyway?

Letting Go

The water covers me on all sides. It is warm and clear in the afternoon sunlight. I am somewhere between the surface and the floor of the sea. Above me, I can see the soft tossing of waves, the sun poking and prodding around every crest. The sand below is perfectly white, and the sea floor takes on shapes and patterns among the rises and dips of the sand, on the rocks scattered about. The vastness and purity of it makes me feel like the sand must keep traveling farther down into the center of the earth, as if there were nothing else.

The hair on my arms sways in unison under the gentle currents. I am motionless underneath the surface, arms and legs floating listlessly. My eyes are open, staring out through the clear water without actually looking at anything at all. I am completely alone. There are no fish or creatures or reefs with life springing from them. It is beautiful, and desolate.

This is where I go to meet my lost daughter, the one who didn’t make it. This is where I go to sit with my sadness, where I allow the anguish and longing to settle on me, without judgement or care or distraction or hope. It’s here where everything is quiet, where all of the noise dissipates into the nurturing sounds of being submerged. I’m present down here, under the waves, in a way I can’t be above the surface. I feel half dead and relieved.

It’s here in this state of floating that I find her.

She appears before me just as I am, floating with her arms and legs outstretched in the clear warm water. The dark hair that covers her head waves from side to side. I stare at her perfect little eight pound body, the rolls in her thighs, the way her Momma’s cheeks swallow up her Daddy’s nose. I marvel at the size of her hands and peek around every nook and cranny of her body that I failed to look at it in the fourteen hours that I had her in my arms.

She is still dead before me, but she is here.

After three years of wrestling with the tragedy that took her life, there it very little in the way between us now. The anger is gone. The missing has eased. The preoccupation with my own fragile state no longer rules my waking hours. The fucked up ness of how she died has been analyzed and regretted with enough energy that I no longer have any left for it. I have thoroughly changed from losing her, slowly and completely, but even the changing seems to have run its course.  It is just us now.

I grab her naked body and pull her into my chest. With my hands and elbows and arms I pull as much of her flesh into contact with mine. Her head rests against the beating of my heart, her toes and feet push against my stomach. Her hands are clasped together under my chin and I kiss them.

I used to tell her in this moment that I loved her. That I missed her. I would sing her songs. I would say a thousand times over that I was sorry. But there are no words anymore, nothing left that needs to be said.

The two of us float together, embraced, a father and his daughter, under the surface of the vast sea, drifting aimlessly.

+++

For three years now, I have sat with my anguish. I have allowed grief to consume me in the way that grief requires us, without agenda or timeline or a set of rules. I have shaken my fists and thrown myself at the world and I have knelt down on my knees in brokenness and defeat. I have felt brave and wickedly vulnerable, the two feelings coming and going as easily as the wind. I have learned to live with that strange duality of feeling happy and sad in the exact same moment. I have felt the crushing blow of missing my daughter who can never return, how it makes you physically sick and short of breath. In the slow, arduous task of healing, my emotional, mental and spiritual state have taken on new forms and new meaning. I am not who I used to be.

I can feel the grip of grief letting go of me, like slowly pulling away from someone you may never see again. It comes with a certain level of fear and trembling, knowing how much my grief has tethered me to my missing daughter. In all these years of wishing the pain away, the irony now is realizing how much I will miss the pain.

I can feel the joy returning. There is a space in my brain again for new dreams and pursuits and adventures. There is a steadfastness in the present, a contentment that I never thought would be possible to feel again. I, too, am letting go.

+++

The sound of music tugs at me to come up for air. Our sacred moment is coming to an end and I close my eyes and hold on to her for as long as I can stay under.

It’s easier to stay with her, to forget about the future, to leave the world behind. There is fear up there, and chaos, and worse yet, the possibility of more tragedy. And yet.

I loosen my hold on her until she is before me again. I kiss her forehead. And then I let go and swim up to the sounds coming from above.

Life, awaits.

If you're in a similar place, how have you coped with letting go? Or perhaps this idea isn't even something to be considered? Is there a space where you go to meet your missing children?

In this being my last post for Glow, I want to thank you for abiding with me over the past three years, first as a place of refuge and now as a place of community. Peace and gentleness to all of you, wherever you find yourself these days.