the binding thread

I stumbled into this place heartsick and with a broken spirit.  I had never felt more alone than I did in the aftermath of my son’s death.  It was the warmth of Glow in the Woods that thawed the ice in my heart and illuminated the many other faces in the dark.  This is the last piece I will be making as a contributor to this sacred space.  Thank you to everyone for allowing me to walk with you.  It is a sad path to travel but I am grateful for the beautiful souls with whom I have found myself walking alongside.  I wish you all peace as you journey on.

.

.

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He’s not here. 

He hasn’t been for one thousand six hundred and eighty-seven days. 

He’s not here and yet somehow he is everywhere: intertwined in the fabric of life’s tapestry.  He’s a changing colored thread weaving itself through the scenery of my past, present, and future.  He is completely dynamic despite his condition of being most sincerely and decisively not alive. 

His newest sister was born and I saw him in her sleeping face.  He was threaded throughout the white fuzz on her head, rose on her fat cheeks, and sea-blue in her eyes.  From a distance they looked so much alike.  Less so now as over these last weeks she has changed, grown, and become more herself and less a reflection of him. 

My oldest asks me why her brother’s heart was broken.  Why did he die?  How does one explain to a three year old the complexity of life and death and the ambiguity of what comes after?  He is the black that fills the void between question and answer.  

In his grandparents’ garden –the one they have given his name and cultivated in his memory- the color of his thread turns from gold in the fall to the pale cornflower blue of hydrangeas in the spring.  In summer it is the ruby red of tiny wild strawberries stolen from their beds by little fingers.

He is the pearlescence of an obscured and faded scar that yawns its way across my abdomen.  The shadows of my face and the outline of subtle longing that lingers around my eyes are threaded with his grey.  He colors the tiny flash of pink from my tongue where his name invariably rests, waiting to steal away from parted lips at first chance.  George.

And he is the firework of fiery reds angry at the unjustness of his death and muted blues of acceptance and regret.  I wait to discover what color he will be when peace and self-forgiveness are found.  Green and brown, I hope: the color of the giant ancient trees with deep and stretching roots.

His thread, an ever-evolving color of love, has become that which binds my life together.  Nearly five years of his death and he is as vibrant and suffused into my entirety as either of his living sisters.   His color has made my tapestry fuller, sadder, more enduring and most undeniably more beautiful. 

He’s not here. 

Oh, but he is.

Tell me where you see your child(ren).  Despite their obvious absence tell me about their presence in your life.  How do you keep them present in ways that are meaningful to you?    

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/

balance

It doesn’t snow here very often.   Once every few years will we see the kind of snow that is currently blanketing our evergreen world in dove white.  It is lovely: quiet and peaceful in a way that feels temporary and fragile.  It won’t last more than another day.  It will melt away and ordinary life will begin again.  The abandoned cars, without chains and caught unprepared for the weather, will start disappearing as their operators return from wherever they escaped to when they finally gave up on spinning their wheels.  Muddy rivulets will replace the soft white snow and the brief interlude will disappear. 

But for now…

L-O-V-E-U is written in the snow in front of our sliding glass door.   My daughter is bundled up in a pink snowsuit.  Smoke billows from a thousand chimneys.  Kids zoom down the hills with neon sleds. 

It’s idyllic. 

Other than the ambulance parked outside of a house near ours.

I’m reminded, once again, that even something as beautiful as a winter blanketing of snow also holds its ravages. 

Thanks to books/blogs/stories and murmurs of women around me, I assumed that my pregnancy would be nothing but a beautiful experience.  Yes, there would probably be some nausea and swollen ankles but those would really be small in comparison to the magnitude of the beauty it would create.  I thought I was going to have that glow pregnant women supposedly have, as if the tiny new life inside of me would radiate warm light through my entire body. Pregnancy and birth were going to transform me into an ethereal goddess of life or some crap like that. 

Someone left out the part where it could be a disfiguring sledgehammer blow to the side of my head.

I’ve grown short-tempered with the culture surrounding birth and pregnancy in my sphere of life.   There is too much talk of the beauty and not enough acknowledgements of the ravages.   There is mindset that somehow, through shear willpower and determination, pregnancy and birth can be controlled and mastered.  They can be enlightening experiences through dedication and mindfulness.  I’m pretty sure that no amount of mindfulness, meditation, or breathing exercises could have ever made giving birth to my son only to watch him die twenty odd minutes later a more enlightening experience.  It is a luxury that we live in a culture where the outcome of a living baby is taken so much for granted that things such as birth plans and birthing methods have become of such import.  

Perhaps I’ve also grown too cynical over the last four years.  I know several people in my life that would probably agree with that statement.  Most pregnancies, at least in the world I am fortunate enough to live in, are beautiful.  Few suffer through the ravages that so much of the rest of the world commonly does.  I can’t help but think that if there was more balance given to the two in our cultural mindset that for those times when the sledgehammer swings those of us in its path would not be left feeling quite as surprised by the blow. 

What do you think about the pregnancy and birth culture surrounding you?  Birth plans, birth methods… Do you feel that there is a lack of education about the negative aspects of pregnancy and birth (and I am not referring to morning sickness and hip pain here)?  Do you feel silenced by a birth culture that seemingly puts a greater emphasis on the process of pregnancy and birth rather than the outcome? 

lost in translation

We sat across from her, an arrangement of flowers and a small analog clock sitting on the table between us.  She was young, only a few years older than myself, pretty with a well-tailored black dress and an almost preposterously large diamond ring on her finger.  Her office overlooked part of a very famous street in Los Angeles where the wealthy spend ungodly amount of money on handbags and diamond-studded watches.  She was a psychologist or therapist, I can't remember which now, that we found via a referral from our OB after George died.  There were five names on that list and I picked hers from the lot solely because she was the only woman. I naively believed that her sex would somehow imbue her with special counseling superpowers.  I should have known better.

Sitting stiffly in the overstuffed couch, we told her all about how our life had gone from blissfully happy to utterly broken.  I did most of the talking (between wiping away tears and my runny nose) while Leif sat beside me and quietly held my hand.  I relayed the events leading to George's death and watched her reaction to it all with an observant eye.  She furrowed her brow at the right times and nodded sympathetically when I had difficulty maintaining my train of thought.  She said all the right things and reacted in all the right ways, yet something about the blankness in her eyes made me feel as if instead of talking about the death of a much loved baby we were discussing my disappointment over being passed over for a job promotion.  It took all of ten minutes to conclude that she was an experienced actor and that she had little empathy for the ugly circumstance which had brought us in to see her.  Forty minutes later it was over and I was writing a check to her for an absurd amount of money, thankful to be done with experience.  

Back in the car we agreed never to go back to see her.

After that miserable experience I threw out all the other counseling referrals we were given and turned to the Internet.  I tried every combination of words to find counselors who specialized in pregnancy and neonatal losses. Grief + infant + death + depression + counseling = the saddest collection of words I've ever Googled.  The results were abundant and spanned the spectrum of mental health workers: from family therapists to psychiatrists and even naturopaths.  I must have looked through those results dozens of times before gathering up enough courage to pick one and make the call to set up an appointment.   Given how badly our first experience went it still surprises me that I somehow mustered the bravery (desperation, more likely) to even make another attempt. 

Thus the Internet threw me a lifeline -like it has done for me on so many occasions since we lost George- and brought me Anne.

Anne was the antithesis of the first woman we had earlier met with.  Her warmness was as welcoming as the first therapist’s disingenuousness was off-putting.  Even their appearances were starkly contrasted.  Instead of an expensive black dress and hair slicked back in a tight ponytail, Anne wore casual white slacks, a pastel sweater and a string of understated pearls on her neck.  She smiled easily and it never felt inappropriate or forced.  From the moment we began talking it felt like a homecoming and for the next eighteen months it became my refuge.

When I first started seeing Her I felt alone in my grief.  As much as I had tried to convey to friends and family how lost I was or how deeply I missed my baby it was a language completely foreign to them.  It wasn’t as if they didn't try to understand but there was something fundamentally lacking in their ability to interpret my words and behaviors in the wake of George’s death.  Once I wrote in a blog post that it was incredibly painful for me to be faced with images of carefree pregnant women and a pregnant friend took deep offense.  It made me feel awful, both because I had hurt someone who had been a good friend, but also because it made so very clear to me how alien my experience was to those around me.  That was the last time I ever wrote or said anything of that nature outside of the safety of Anne’s office (and later the safety of private conversations with other baby loss people) for fear of offending someone who was not fluent in the language of loss and did not understand the consequences of post-traumatic stress.  After a time I learned to hold back my words for fear that they would be falsely translated into insults or that they would make the impression that I was more depressed then I actually was. 

It was incredibly isolating and not just a little discouraging. 

To Anne, when I told her how much I hated hearing about other women’s pregnancies or how deeply I burned with envy at seeing birth announcements, I was completely normal.  To a grief counselor I was just mourning the loss of my baby, my pregnancy, my previous life, and my self-image.  She understood my language and there was no need for me to make any effort to translate for her.  I did not have to soften the edges of my sharp and sometimes cutting thoughts.  Every week I saw her it was an emotional and physical relief just to sit with someone and not need to filter or mold every word out of my mouth to either A) convey how devastated I was or B) avoid making myself sound like a black-hearted monster. 

One of the most valuable things I learned from our time together was how to accept that no matter how eloquent the words I used to describe my grief there was always going to be something lost in translation for those people who were fortunate enough to have so far been spared any real tragedy in their lives.  They would never ever totally understand (how could they) what I was feeling but the good ones worth keeping around would make an effort to try.   She assured me that there would be people that I would find walking the same long and arduous road that I was on and they would not need any translation.  There would be people who understood.  I just had to keep my eyes and my heart open along the way. 

Anne was the first person I came across after George died who gave me hope that I would not be alone in my grief forever. I found those other people she told me I would find, other souls who were slugging through the same muddy road as I was: other grieving souls who would become friends and for whom no translation was needed.  Hope is an amazing gift.

Have you seen a grief counselor?  Was it a positive experience?  Was there someone else who you felt understood your grief when no one else seemed to?  Has it been frustrating for you to have people not understand or misconstrue your words and/or behaviors in response to your child's or children's deaths?

Blank stares, crickets and tumbleweeds

Recently a friend of mine posted news announcing her third pregnancy on that social media site I sometimes wonder why I joined.  It was a witty, read-between-the-lines kind of announcement that is commonplace in the land of non-baby loss folk.  It is not announcement any of us who have ever had to make the other, darker kind of pregnancy announcement (The baby died.  I’m not pregnant anymore) are apt to make anymore for a subsequent pregnancy.  With my daughter I did not clue anyone into the fact that I was pregnant until I was about 18 weeks along.  There was no formal announcement I just sort of stopped denying what people already had suspected for awhile.  I waited that long not because I was afraid that she was going to die like her brother, although in fact I was pretty sure that was exactly what was going to happen.  Rather it was because I did not have the emotional capacity to deal with the proclamations of “This time everything is going to be fine,” or “Try not to worry, it isn’t good for the baby,” by well-meaning people.  Turns out I got them anyway so it ended up not really accomplishing anything. 

Had George been born with a healthy heart and not three months early he would roughly be the same age as that of my newly thrice-pregnant friend’s eldest child.  As much as I would love to say that after three years of navigating the world of baby-loss I’ve risen above comparing my life to others I can’t.  It is just not possible for me to look at this friend’s life and not draw comparisons to my own.  She has a three year old doing those things that three-year olds tend to do.  I have a baby; dead for three years, not doing those things three year olds tend to do.  She has a second baby and a third on the way.  I am struggling to get pregnant and stay that way long enough to bring home a second living baby.   I think about her and imagine that my life could have looked very similar to hers if only fate had favored me in the same way it had favored her.  I think about her and envy the relative confidence she likely possess that her current pregnancy will have the same result as her previous two did.  I don’t have any confidence that any future pregnancy I may or may not have will result in a living baby. 

A year ago I was in a place where her announcement wouldn’t have been much more than a tiny blip on my radar.  Back then it was fairly easy to have a conversation about pregnancy without white knuckling through the entire thing.  I had also mostly stopped mentally reprimanding pregnant women for complaining about trivial things like swollen ankles and nighttime trips to the bathroom.  If a friend wanted to tell me about her birth plan I was mostly fine with it.  Sure!  Let's do it!  Let's talk about playlists and birthing balls and the evils of medical intervention.  I was a champion!  I was a fortress! I was a pillar of support!  

Two miscarriages later and I’m not feeling so enthusiastic about being a champion or a fortress or a pillar of support anymore.   All I’ve been able to muster in words of encouragement for my friend on her most recent pregnancy is a simple “congrats” to add to the multitude of other congratulatory responses she’s received.   I wish her the best, I really do, I just don’t want to talk about or otherwise be around it, that’s all.   So should she ever want to talk to me about birth plans and swollen ankles and nighttime trips to the bathroom, for now it’s going to be nothing but blank stares, crickets and tumbleweeds. 

How do you feel about your friends' pregnancies?  Has your opinion about thier pregnancies and/or your comfort level with them changed over time?  Do you feel guilty about the way they make you feel?  Have you been made to feel guilty about the way they make you feel?  

friend

I lost a few friends after George died.  Well, really, they were in the process of being lost during the five weeks that he was in the process of dying and that I was in the process of changing into something different than before.  For those weeks and the ones immediately following, phone calls went unanswered and emails went unreturned.  Our previously close relationships changed into something else, something not anything anymore. I was taken by surprise by the change but I probably shouldn’t have been.  

...

Melissa made the drive to the hospital from across town after work.  She brought a board game and we played scrabble on my hospital bed.  Our laughter temporarily filled the space that the thwump-thwump of his heart tones normally took up in our room.  Nurses, who were as constant as my shadow, mostly left us alone and for an entire hour I felt almost normal again.

...

I can look back at my life and divide it into discrete periods, each one associated with a different version of myself.  Each Brianna, similar in some ways and completely unique in others, was surrounded by a relatively distinctive set of friends.  Adolescent Brianna and Teenage Brianna had some friends in common but they mostly faded away once University Brianna made her first appearance.  University Brianna evolved into Adult Brianna and the story repeated itself; friends came and went.  Throughout all the versions of myself over the years there have been a few friends that have remained steady: veins of marble in the limestone of my life.  For the most part though, friends have come and gone with time. 

...

The necklace that often hangs from my neck is a secret between Jennie and me.  A delicate gold band imbedded with a single diamond, a gift she gave me immediately after George died.  “Your laughing star in the night sky,” she told me. “Remember the Little Prince.”

...

As I’ve changed -or maybe as my friends have changed- so have our relationships.  Sometimes we’ve stayed buoyed to each other and sometimes we’ve floated away, each pushed along by the tide of our own lives.  The friendships that have stuck and have followed me through my life despite all the changes, both theirs and mine, are the ones in which we’ve continued to find new places in our lives for each other. 

 ...

Natalie and Marc flew out for a long weekend after he died.  We went to the beach and to a karaoke bar.  We stayed up too late and drank too much red wine.  They ate Korean fried chicken with us even though they did not eat meat.  They listened.  We talked and cried.  They remember our son…still. 

...

I am not the same as I was four years ago and neither are all of my friendships.  There is no more animosity for the ones who could not stay but there is so much gratitude for the ones that did. 

Tell me about the people who stayed, the people who were there to abide with you.  Tell me about your Melissas, Jennies, Natalies, and Marcs.  I want to hear about the good hearts and the souls who have suffered right along with you.  Tell me about the ones who have continued to love you even as you’ve changed.