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?

inside the broken

There are things which broke on that day which will never be repaired.

My ability to give a toss, for one thing. I walked out of the hospital wearing pyjamas, clutching a yoghurt. Less than an hour after watching my 11 day old son die, I left the building having forgotten to dress but feeling it was important to not waste the money spent on a breakfast yoghurt that my throat had been too constricted to eat.

A million times I have reconstructed that morning, imagined that I screamed and howled and refused to be parted from him, imagined myself cradling him - illegally outside a car seat - on the journey home. Imagined his breathless body in our home, loved by us all, for a few hours. Just a few. Long enough for all of us to hold him.

A piece of me broke when I laid the body of my child upon the bed, turned my back, walked away, left him forever. I went quietly. I walked with measured steps, climbed inside my car, composed myself for breaking the news at home.

I stared at the car in front of us, proclaiming in a jolly yellow sign "baby on board" from the back window.

I didn't cry, or snarl, or instruct my husband to ram their smug, unknowing selves off the road with their sneering, crowing, baby sign.

I don't miss the drama queen, nor the woman who put her own needs and wants first and had a baby to suit herself. She broke. She is long gone.

The mother who arrived labouring and optimistic was not the one who walked out empty armed and brokenhearted. I wonder at what became of her on those haunted corridor days, the long nights hovering above a SCBU crib. I wonder at the mother who left, grief already put to one side, able to turn her back to a beloved but dead son and focus on the living.

I would not have believed that I had that in me. I would not have believed that my soft soul, so often such a shaken and shifting thing, would have hardened, frozen, stiffened and done the deed.

I am not sure if I want to be the mother who walked away. It does not feel honourable nor does the walking illustrate the love, or the desire to stay forever, suck him inside of me, curl up upon that bed with him inside my arms and keep him warm with my warmth until we both grew cold.

But the one who arrived home. Broken, yes, but strong. So very, very much stronger than anyone believed. Least of all me.

There are things that broke inside of me that day; faith, trust, patience and tolerance. Energy for the small worries, some measure of mercy for human foibles are long gone. I do not wish to be troubled by the minutiae of petty irritations. I do not suffer them gladly.

What was left, when all that cracked and fell away, was new, pressured hardened, solid, changed.

I survived.

My son died, in my arms, under my gaze.

But I survived. I changed, changed deeply to my core, but I have survived. Sometimes, I rather resent that it is possible to do so.

Can you identify parts of your personality that have changed since the loss of your child? Are there changes you welcome in some way or do you resent them utterly? People talk about 'becoming a better person' as an aspiration after experiencing loss; is it possible for that to happen? Is it damaging to even try? In what ways has grief been a journey for your 'self', your character and how do you feel about it if it has?

 

 

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?  

vacation

photo by Garry - www.visionandimagination.com

I walked on the black-sanded beach by myself, waiting to come across a large carcass of a whale or ship, something broken and empty, like me. Here it is, I would think, the perfect metaphor for my grief. I would climb it, I imagined, examine it, and take a piece of it home. "You didn't die in vain," I would whisper. "I will remember you." And in that moment, the inextricable link between all creatures would be known to me. Nothing like that happened.

I had never traveled sad before.

After my daughter's death, I fantasized about moving away to somewhere very warm and beautiful. Life is too short to stick around New Jersey. Or maybe this time, when we didn't have a newborn to care for or money to be spent on her, was just the perfect occasion for us to travel the world for a while. We could leave this terrible place where babies are stillborn and you can't make a left turn. Eight months after my daughter died, we packed up our grief and headed to my mother's country, Panama, for ten days.

Some days, I was ecstatic, begging to travel long distances through the country for the possible glimpse of a sloth, or totally jazzed to hit the fisherman's beach to bargain in Spanish for some fresh catch. I bounced on the balls of my feet, clapping my hands like a motivational speaker. "Come on, people, those monkeys aren't throwing poop at themselves. We've got a jungle to trek." Other days, I could barely muster a walk out of the bedroom. I woke up several times each  night thinking about the dog or my father, wracked with guilt and overwhelming anxiety. Something. Was. Wrong.

The other thoughts in those hours of the night were how far away this country is from my daughter's ashes. Lucy's death seemed so small and long ago, like a dot I saw on the tarmac of Newark as our plane arched toward Central America. Oh, but I packed her death. It ached in my every joint, in every inch of my being. Some days, every activity seemed rather pointless or overwhelming or both. "Meh. I'd rather be sleeping."  And the family would leave as I read books and wept uncontrollably.

And I remained cold. Eight degrees off the equator, I shivered in the sun. I wore a sweater most nights, sometimes during the day. I couldn't get warm. It had been like this since Lucy died, not being able to feel warmth.  I carried a bit of winter solstice in my body now.

+++

I cried during very chaotic turbulence, because what I didn't dare speak before my trip or during, was that I was convinced I was not coming home from Central America. Riptide. Hanta virus. Panamanian drivers. Mud slide. Pool accident. Infected finger. Lightning. Freak machete accident. The ways in which one can die on a vacation are surprisingly varied, interesting and around every corner. I sent emails to all my people, "I will always love you." The pilot actually came on the loud speaker on our return flight to say that we may have to make an "emergency fuel landing." This is it, I thought. I was the one with tears in my eyes and hand raised. "Uh, is that emergency landing because we have no fuel? Or is that a landing to get fuel? Could you just clarify the emergency part?"

Once you are on the shitty end of statistics, that small stretch of number is your homeland where no death scenario is too far-fetched, wild, or out of the realm of possibility. I even imagined different ways to be imprisoned in a Panamanian jail for being at the wrong place at the wrong time during a drive on a desolate piece of highway.  And my living daughter seemed a step away from death too. Sometimes I just cried, not because I saw Beatrice's imminent drowning, but because I wanted Lucy to be in the pool with her sister and her father, bouncing and splashing. I hate seeing Beatrice without her sister. My husband without his daughter. The world without a little giggling girl.

+++

There was part of me that imagined this trip as something healing, something different than it was. I tried not to build it up or imagine it being a vacation from my grief. But I admit part of me felt like maybe a change of scenery would change my grief. Just a respite from the exhausting heavy weight of it. Maybe like Atlas passing the world to Heracles for a brief minute just to stretch the shoulders. How could I not be happy in such a beautiful place? But the pure exhausting nature of grief amplified the ugliness inside me and the beauty of everything else. Lush green and grief. Moss and anxiety. I looked out of our room onto the great expanse of the Pacific Ocean, watching the sun set, and still, I was so fucking sad. It's easier to be sad in New Jersey. You are supposed to be sad in New Jersey. This was just another shitty day in paradise.

+++

When we walked in our house, I walked straight to her urn. Why hadn't I taken it with us? I stared at it for fifteen uninterrupted minutes, I missed home.  I missed her (which had nothing to do with home.) I missed grieving her. Home represented non-judgment. No expectations. Just grief in whatever form it came. And yet the vacation was beautiful, dare I say, worth it. I listened to the story I told to other people about the vacation--epic hikes through the jungle, watching twenty hummingbirds fly around my daughter, lying on the beach, rolling a cigar in a factory with my cousin,  spotting a sloth in the jungle, or discovering a moss-covered wall and waterfall.  Those were amazing moments. The truth is when I spoke of my amazing days before, they have really always been an amazing moment or two enveloped by the mundane. After my daughter died,  they became amazing moments enveloped by the grief. And they are, in their own way, sometimes happier. Maybe the juxtaposition with grief makes them happier.

If someone asked me many years ago to describe how both my best and worst moment could be wrapped up together, I couldn't have imagined what that could possibly be. Then I birthed Lucy, knowing she was dead, both so incredibly tragic and beautiful. Her birth, a peaceful moment of agony. And so this first vacation after her death, an agonized moment of peace.

 

Have you traveled, or been on holiday, since the death of your baby? What was the experience like? How has grief changed your experience of travel? Or how has travel changed your grief?

After The Bear Hunt

The discussion boards for Glow in the Woods are truly that warm, welcoming campfire to so many of those who find us in the darkest of journeys. Throughout Glow's five years, the boards have grown tremendously. We are so grateful to how graciously our community continues to abide, listen, and support one another. Through our growth and feedback from our community, we felt it was time to expand and add another board--Parenting after Loss. Whether you were parenting children before your loss, or parenting a child born subsequently, Glow felt it was time to create a space to talk about the specific issues around parenting and grief.  We hope this space will be welcoming to those in all stages of grief and parenting. As always, if you have any suggestions or feedback on the community section of Glow in the Woods (the general board or the ttc/pregnancy/birth after loss board or our new board parenting after loss), please contact us here. We'd love to hear your thoughts. 

Today, we are thrilled to introduce Merry of Patches of Puddles as our new Board Moderator and a regular contributor. Merry's support and love permeates all the nooks and crannies of this community.  Merry's fifth child Freddie lived for eleven days in SCBU before dying of pneumonia. She is parenting Freddie's little brother and four older sisters in the UK. We are so lucky to have her keen eye, compassionate heart, and eloquent voice among ours. --Angie

 

“You can’t go over it, you can’t go under it…Oh no, you have to go through it.”

So say the words of a rhyme my children sing; lines that have played in my head since I stepped upon this grief path. The Bear Hunt; the long, difficult, fearsome journey.

I tried to find a way to scramble over grief, glide upon its surface and slither down over the other side of a glass dome that reached skyward, holding my baby and my pain inside it. I pledged to write him out of my mind and memory, believing I could escape the trite truisms of the steps of grief. With no intention of reaching acceptance, I relished denial. Busy, stretched beyond measure by the damaged children surviving Freddie alongside me, I pushed my tears to the quietest moments, the dead of night, the bathroom, lonely car journeys of the parent taxi trail. In the daylight, fear and pain on the faces of his sisters when I cried was too awful to behold. Keep it together, put on a brave smile, hold them when they cried. Just keep swimming. Just keep gliding.

Just keep scrabbling desperately to hold on to the life that had been ours, when we could count our children without confusion. When we could hold them all in our arms. When there was no space on the sofa, no space in our hearts, no empty spot between us all.

And then came despair. Choking, horrifying, utterly consuming and black as night and twice as bitter, despair. And I tried to go under it. I told the world and all her wives of my lost son, just to see the shock, see the horror, see the recoil from all the checkout women and frightened postmen who wished the crazy lady away. Begone, with your foul, mud soaked, horrifying grief. Get over it. Move on. Be on your way with your inappropriate love for a boy made of ashes. His loss rose up between us all, the husband and girls who went on and relearned a smile and the mother, woman, wife and now barren and broken part-human who tunnelled through days and wondered how to make another life. Month after month, I sunk beneath blood and anger and disbelief as a never birthday loomed and a life mourning a baby stretched impossibly - broken - in front of me.

You can’t go over it.

You can’t go under it.

Oh, no… you have to go through it.

Through the mud. Through the tears. Through the river that takes the feet from under you. Through the grass that sways above your head, disorientating, blocking the view, all you can see. And all the time dragging my broken children along with me, committed to the path I had chosen - the hunt I had wanted - which was punishing them so utterly.

The work and effort of grief, a journey, a slog, all to find a big black cave and a big black bear and turn tail and run for home, retracing steps, trying to find the place where once you were, trying to keep my other children safe as they bumped and scurried alongside.

And then… and then… lying on the bed, chest heaving from the chase, bones exhausted, tears all cried out and heart hammering. A memory of horror and fear and the jawed yaw of utter destruction, of unimaginable pain, right there, in your mind’s eye.

Slipping… sliding away.

A memory.

He was here. One of us. I do remember him. We did love him. I do love him. He was a person and he is – always - my boy. He was also a journey, one that broke me on every step and which brought me home, but not to the same place.

And, having gone through it, I tell you a truth now. Life goes on. Not the same life. Not the same person. Not scarred exactly but somewhat brutally reshaped.

The journey, now part of me, has the air of a badge of honour to it. I would not be without it. Here, in the unasked for afterglow of grief, I find myself, us, a family, with every decision we make infinitesimally altered by the knowledge that one of us can die.

The lens is different. Everything I do is tinted by the grief lens. My girls go out and I hope to see them safely back. The telephone rings and I hope to not hear of death. A baby is born and my head reels that people ask for weight and gender, not first breath safely taken. My child, admitted to hospital, makes it safely home. I am stunned by survival. The car breaks down, expensively. Nobody died. Our livelihood is precarious. Nobody died. The toddler ballpoint pens the expensive sofa. It’s just a thing. Nobody died.

This is my story, 3 years on. Mine is a journey complicated by my travelling companions; the living children I brought with me, guilt that they know grief, regret that they see fear in my face when illness strikes, sadness that they fumble answers to simple questions about brothers and sisters. Nothing has been the same for them since Freddie died. They do not have the same mother, or father, or family. Everything is a fight to weigh the knowledge of loss against the right to independence. They trod the terror of the subsequent baby path with us and their life is changed because of that.  And his life, the precious princeling who came after, is a kaleidoscope of the fragments of loss, love, longing and fear and joy and wonder that he has as yet no knowledge of and cannot change.

I am not the mother I was. I am twice the mother and half the mother, a patchwork of unwanted experience. I am surviving the hunt and the fear, but I will never be home, not quite.

 

Where are you on your grief journey? Have you tried to move under it? Over it? Tell us what it is like to move through it.

Not Gonna Panic (Part 1)

Something happened to me, physically, in the wake of holding my dead daughter, Roxy. I felt it happen that day, walking from the room where she was born back to our private hospital room where our family waited, wailing. See, one of the perks of having your baby die is that you get your own private room for a few days. They mark the door with a purple flower, which I assume is to warn nurses not to be cheery and congratulatory. I have wanted to stomp the life out of every purple flower since.

Where was I? Oh yes, the hallway walk. It may have been 20 feet, but in my memory it’s 3 football fields. I remember every zombie step, knowing that there was more horror fighting to get into me than could fit, so my veins felt crowded and noisy with electric, terrible blood. A time-release panic valve was installing itself, and I could feel it. A panic payment plan was set up inside of me. I think I know now, 5 plus years later, that I will not live long enough to pay the debt.

I fell through that day without completely dying of it, but I was different. Not just emotionally. Not just psychologically. I was different, physically. I started having panic attacks within the week. I assumed I was having heart attacks. I was certain I was dying. I went to the ER. I went to the clinic. I went through a battery of tests, wore a heart monitor for a month, etc. “No,” the doctor said, “your heart is fine. It may be post traumatic stress.” I’ve been on anti-anxiety meds for half a decade now. The panic attacks are fewer, but they still come. They can be triggered by adrenaline of any kind (roller coasters, sick kids, playing basketball, etc.) I’m a lifer, most likely. This song is about having one of these attacks. It is the self-talk. It is the darting, random thoughts as I try to keep it together long enough to escape my place of work before I collapse.

Whatever is wrong with you goes all the way
Through your awful last name in the dark
I wonder where that dog will run to?
I wonder how long that dog will run?
You can keep your hand to your chest
You can worship by the elevator, leaving
Calm down
Beating beating beating beating
A mannequin in a dress, an overpass
I hope I never get used to losing you
The sound of a car on a bridge
And the things you can’t take back
No matter how long you live
Calm down
Beating beating beating beating
I’m not gonna panic
I’m not gonna panic
I’m not gonna panic

Since your loss, does anxiety overwhelm you? How do you handle it?