The Ambassador

I had that call again.

A friend of a friend. Someone’s brother. A former colleague.

I shake my fist at Jimmy Stewart, because every time my phone rings an angel gets its wings, but it doesn’t seem so uplifting when the angel is a dead baby and you don’t believe in angels anyway.

I hope you don’t mind me getting in touch, I just didn’t know what to do and I thought of you immediately…

It reminds me that I am a denizen of a bruised nation with a missing population. We stand invisibly united under a knitted, never-used flag.

We did not choose to come here. We cannot leave, cannot flee. Yet we are dispersed. Grieving refugees. Missing a home we hardly built, earth we barely touched.

Another family crosses our border and we do not bring them casseroles. Or, y’know, we may bring them a casserole, but really we’re giving them some kind of painfully extended metaphor for what the next weeks/ months/ years will be. There is no silver lining, so perhaps a free casserole is the best we can hope for.

I feel like I should stand on something and proclaim:

Friends, Mourners, Undiscovered Countrymen…

But no one here wants a rousing speech, or maybe you do. I don’t know. We do not speak a common language, or share common customs. We hold different politics, different faiths, different aesthetics. We are connected, but only nominally. In reality, babylost covers an extraordinary diversity of experience. There are so many ways for babies to die. It still shocks me.

The friend of a friend. Someone’s brother. The former colleague.

I do not know what they want. I barely know what I want, truthfully. I want to make some weak joke: …something something DIPLOMATIC IMMUNITY, am I right folks??!!

I am an undeserving emissary, chosen by default.

Yet I am your Ambassador.

And you are mine.

Have you encounterd a babylost ambassador? Someone who had walked the path before you and helped you navigate your grief? Who are they and what did they do that helped?

ghost town

I lost my daughter then I lost my friends. Not simply lost them. It was more like they drove me out into the country and told me to go run out in the woods for a while, they waited by the car.

"There, Angie, check out behind that big tree. A little further away. There is something shiny there. It is the internet and there are people on there whose babies died too."

"Over here? I don't see it."

"Just a little further. Go on now. Be good. I loved you once."

"Okay. I love you too."

And I watched their license plate become illegible in the distance. I walked back to town, determined to understand, only to find that they moved without a forwarding address. So, I suppose, they lost me.

photo by Denise ~*~.

Villages of friends were gone. I walk into the ghost towns of my past, sidle up to the bar. There is nothing left. I am not part of their tribe any longer. I slam the empty bottle of the long bar. They were drinking buddies, after all, not friends. For years, it made me angry. It made me angry that my daughter died and then I kept losing more and more and more until it was just me.

When it was just me, I saw you. And you. And you. And you. And you is beautiful and amazing. I told you all about the pain of losing friendships, and my daughter, and raising a daughter and every little thing about this experience. I listened to you talk about it too. We suddenly had a little boom town of the babylost. I felt normal.

Normal was all I ever wanted.

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Everything about my life changed after Lucia died, even though it looked exactly the same. And I feel attached to all those things I once was, like grape vines winding around the withered parts of me--my arrogance, my lightness of being, my inappropriate anger, my bravado, my aloofness, my old friendships, the confidence I had in my body. I cut the shoots, understanding that those bits of me are dead, but the tentacles grow back, clutching dearly again to something already gone. (I fear it takes the nutrients of my thriving, beautiful bits.)

In the weeks after, it became abundantly clear that I had no idea how to feel anything but anger and longing about her death. I was not emotionally equipped to handle the death of my daughter, except I had to handle it. It was awkward and painful. I clumsily talked to people, until I just couldn't do it anymore. I drank heavily. I watched the same safe comedies over and over. I was afraid to call friends and cry. I thought I would never stop--hysterical, uncontrolled tears. Keening. Misplaced anger. Blame. Fear. Blubbering. I heard the conversation before I uttered a word.

If I say I want to die now, you won't understand. You will think I am suicidal. You will call the authorities. You will take my only living child. I just don't know how to live this life without her. I don't know how to shop for groceries now that she is dead. I don't know how to make small talk. I don't know how to watch Law & Order. I don't know how to do anything.

And so, thinking they understood that about me, I expected them to call me. Surely someone calling a grieving mother would know what they signed up for if they called. It felt rude to call someone, even a very good friend, just to cry, even though, ironically, I longed for someone to call me in the early months and cry. I just wanted to be needed, not underestimated. I had once a month calls from a few friends, which were like tall cool glasses of water in a drought. I never cried during those conversations. I was almost maniacally positive about how fine I was doing. Then those petered away too. Mostly, it was silence broken by long, drunken tirade emails. 

Left to my own devices, I behaved badly. Oh, I behaved graciously here and there, but mostly I was angry, chaotic, impulsive, and afraid, lashing out at unsuspecting strangers in markets and yoga studios. The crying stopped eventually. The misplaced anger at other people slowed. I quit drinking. I figured out how to shop, and chitchat, and watch crime dramas. I learned how to feel all the emotions of grief, not just the loudest ones. I went to baby showers, and parties, and stopped expecting, or wanting, anything Lucia-related to be discussed. That took time, but it happened. The grief fog lifted. 

Being the me I was and grieving was fucking torture. So I changed stuff about me, like who I trust and when I trust and what I trust and how much I trust. I changed what I give and what I take and what I give personally and what I take personally. I changed what I complain about and what I don't.

I couldn't call those old friends after I changed. I didn't know what to say to them anymore. I wasn't over her death. I would never be over her death. But I learned to live with it. Time had moved forward. I moved forward. They moved forward. I missed so much, and they missed so much. Not many people stepped up. Those that did, stepped away eventually. I never called them to ask about the thing I should have been asking about--birthdays, illnesses, new jobs, old jobs, pets, boyfriends, girlfriends, new babies. When I came to fully understand that my daughter was never coming back, I came to understand that neither were my friends. I don't blame them anymore. I was a terrible friend--grieving and overly sensitive, impetuous and distant. I didn't and still do not understand how I could have been any better. I did the absolute best I could with who I was. Emotionally, I was stunted and small. And maybe they were too.

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I wrote because I didn't know what else to do with this ache in me. I couldn't speak it to my closest friends, so I wrote her birth story. I posted it on the internet. I thought that was everything I knew about her. I put it on a blog. Maybe someone will read it, maybe someone will understand. It was a flare shot into the night. Or a campfire, as we say around here.

Then I wrote about going to the market. Suddenly, people were there. Other grieving parents. I read about tears in the produce department. I wrote about my fears and anxieties and loves and revelations. I wrote like no one but babylost folk were reading, and sometimes, I wrote like they weren't even reading. I wrote with a kind of freedom that is both naive and slightly endearing. I found myself in the community I longed for since birth--supportive, honest, loving, compassionate. I made friends who appreciated my dark side, as well as the other parts of me. And I theirs. I had found normal.

Writing publicly about grief and pain and the darker parts of losing your child remains both incredibly comforting and absolutely terrifying. In most of my friendships that ended, the complaints centered around my blog and writing. My friends didn't like grieving, complaining, sad, disappointed Angie. 

You wrote about the friends! How unforgivable! You made it sound like we are terrible people! You write about your dead baby every week! That's too much! You make art and sell it! It is about the death of your baby! How terrible! How gauche! Everyone is sick of everything BABYLOST! It is unhealthy! It is wrong! We can't have it!

I never expected any friends to read my blog. It had nothing to offer them. It certainly had nothing to offer me for them to read my innermost, ugliest thoughts about the death of my daughter. I never imagined they would read, but they did.

I wrote because I had no idea what else to do. I wrote because my friends didn't call, and I couldn't call them. I wrote because I needed a community, to feel normal, to feel worthy of compassion. But it came with a steep price. 

Because I lost Lucia, I found something of myself tangled in the tumbleweeds of my emotional and physical defects. After everyone left, something dark and ego-filled, sensitive and critical, drunk and capable of sobriety, redemption, and forgiveness emerged. I forgive those friends, not because they have made amends, but because I have. I had to forgive my humanness. In doing that, I had to forgive theirs. I was grieving the death of my daughter. I did the best I could, and so did they. I sit with who I am now, a human being worthy of compassion. You taught me that. Thank you.

How have your friendships been affected since the death of your baby(ies)? Do you have a blog, or on-line presence? Do your before-friends know about your on-line community of babylost? Do they read your blog, or participate in your forums? How do they feel about it? How have you felt about being public, or not so public? Anonymous? 

the places you'll go

Today we welcome guest writer TracyOC from Mommicked. Her incredibly insightful, clever writing reflects the dichotomy of babylost grief—gratitude in a moment, the heartbreak of forever. In 2007, Tracy OC's twin daughters were born at thirty-two weeks, suffering from Twin-to-Twin Transfusion Syndrome. Her daughter C. lived. Her daughter R. died. —Angie

There is a hat sitting on my desk that is bound for Australia.   

Australia.

It seems so far from my little town on the east coast of the US—practically half a world away with totally different seasons and ecology.  Then again, we’re practically next door neighbors if you consider the infinite and ever-expanding nature of the universe.

And there’s the hat itself that makes the world a little smaller.  It is a gift for another babylost blogger, knitted in honor of the fourth anniversary of my daughter, R's, death.

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R was born at thirty-two weeks, one minute before her identical twin sister, C.  R died when she was twelve days old, worn down by the compounded effects of twin-to-twin transfusion syndrome (TTTS), lower-than-expected birth weight, necrotizing enterocolitis and critical pulmonary valve stenosis. The day she died, a cardiologist stood over her bed in the NICU and said, "Sometimes the deck is just too stacked."

C was also smaller than the average thirty-two-weeker thanks to TTTS. But, even though her deck had also been pronounced ‘stacked’, she had a full complement of working parts and a deep well of baby rage. She graduated the NICU in three weeks—three pounds of piss and vinegar.

They were barely seven pounds together at birth yet, they encompass the full span of possibilities offered by parenthood. At the very least, they’re perched on the fence that defines the perimeter—almost died and almost lived.

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"You never know where your kids will take you."

My mom had a friend who used to say that. Her sons traveled the world as members of a famous boys choir. C hasn't done much traveling yet but I can feel the potential hovering just out of sight like the bones of her adult self that are starting to push through the pudge of her four-and-a-half-year-old face. Soon she will become who she is going to be. Soon the small world that my husband, T, and I share with her will expand beyond birthday parties and three-on-three soccer matches and bikes with training wheels into an everything that I can’t even imagine.  Because you never know.

When I think about R, at first, it feels like I know. She spent her entire life inside a plastic box. She was four pounds and sixteen and a quarter inches with blue eyes and curly, yellow hair.  Her eyelashes were just starting to come in. She got to ride in an ambulance.

I can peer into the space where her possibilities ought to be and it looks like an empty pit. I know that there will be no travels, no victories, no failed adventures. Nothing is hovering in the shadows here.

Lately, R’s nothing seems to be the same size and shape as C’s everything.

They both fill all the space inside my head and push until I feel like my skull will shatter into dust and get carried away on the breeze. 

And I wonder how different they are. Is a dead daughter the furthest thing imaginable from a living daughter? Or, when you consider the vast, unending possibilities of all existence, are they more like next door neighbors?

C’s body doesn’t give her entrée to every possible path. In fact, the body that she has is already limiting her possibilities. She’s never gonna be in a famous boys choir, anyway. Similarly, R’s lack of a body doesn’t completely cut her off from the human experience. She is loved. She is remembered. 

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I chose some fancy yarn for this hat that is bound for Australia—much fancier than I'd choose for a friend that I met through other circumstances. Special occasion yarn, if you will. The yarn is manufactured in Japan, Japanese silk spun with wool imported from, you guessed it, Australia.

This giant planet made small by the wonders of technology.

Sheep hair from one continent and fiber extruded from the salivary glands of moth larvae on another continent and jet airplanes and internet yarn stores and the blogosphere all twisted together by a mother who misses her daughter for another mother half a world away who misses her daughter too.

This giant planet made small by the most basic of all wishes.

R exists in a shadow world that is infinitely large and governed by things that I can't really explain. She is an ache in my soul, an unfillable void. But she is also every worthwhile thing that I’ve learned about grief and loss. She is a thread that runs all the way back to the earliest humans and on into the unending future, stitching me to the log ladies of folklore and the brilliant minds pushing at the frontier of modern medicine. She is a web that connects me to parents all over the world. She is a hat that is bound for Australia.

You never know where your kids will take you.

Have you connected with other grieving parents around the world? Have you had a chance to talk or visit them? What places have you "gone," figuratively or literally, since your baby or babies died? Where do you want to go? What other surprising connections have you made?

joy

This post was inspired by an exchange of e-mails with Christy B about her son, Oliver.  All the best lines are hers. Any spelling mistakes, poorly chosen words or clumsy turns of phrase are mine.

'Here ends the joy of my life, and for which I go even mourning to the grave.'

From the diaries of John Evelyn, written on the death of his eldest son, Richard, on the 27th of January 1658. 

I didn't know who John Evelyn was on the 29th of August 2008, the day my eldest daughter died. Yet there he was, striding on ahead of me. Three hundred and fifty years in front, part of this endless procession of weeping parents.

Early September 2008 - I sat on the floor of a hospital corridor. Overwhelmed. Head between my knees, the beating of unanswerable questions bouncing around and around against the walls of my skull. 

How do I get up from this floor? How can I go back to work? Or watch a film? Or smile? How do I come back from this? How can I recover from this? How do I continue to live?

Without her?

Pulsing with the blood around my body, throbbing in my ears with my heartbeat. In strange counterpoint to my unanswerable questions, these statements repeated in an endless loop.

I love her. She died. Ruined. I love her. Ruins.

My own equivalent of John Evelyn's words. Three hundred and fifty years later.

Here ends the joy.

*****

When you arrive here, this place, this Glow in the Woods, someone is waiting to meet you at the door.

On this particular day, it's me. Catherine W. I'm waiting. I have a pot of tea. Cake. I also have red, red wine. Beer. And cold, clear water. Ice. Lemon. Spare slippers. 

I peer out into the dark. I call, "My baby died too." I hope you hear me.

Sometimes I don't know why I'm waiting here. I don't have a great deal to offer you. But I want to help you, so very much. 

I wish that I could, at the very least, provide you with a schedule, a time table, a handbook. Your Baby Died 101. What To Expect When You Didn't Get What You Expected. Crammed full of practical timelines and guidance. Useful facts such as you will start to feel better in approximately x weeks time.  

But we both know the one thing that I want to give you the most. A letter telling you that this has all been a horrible mistake, a bad dream, an administrative error. And those letters are not in my gift. 

I beckon you in. I think I know where you have been walking. In a place with no comfort. Where it is always too warm or too cold. Where food doesn't seem to make you any less hungry, whether you are choking down a few mouthfuls or stuffing it in. Where there is no rest and no sleep. All positions, sitting, standing, lying down, crouching. All equally uncomfortable. All postures give you a crick in the neck and a sore foot. Everywhere aches or is pins and needles. Very nearly everyone suddenly irritates or annoys. Even people you used to love. 

But perhaps I'm wrong? What would I know. Not a great deal in truth. I'm only one person, with one experience to go by. I can tell you what happened to me but it is not my place to tell you what is happening to you. 

You might think to yourself. Her? They sent her, this Catherine W., as a welcoming committee? Hmmm, I'm not sure about this. She's still here? 2008, that was quite a while ago now. 

But no matter how different we may be, we probably have one thing in common. 

"My baby died." I repeat.

photo by Rainer Brockerhoff

And you notice that my muscles don't spasm. Not any more. That I can speak that sentence, 'my baby died,' without my voice breaking. That I am wearing mascara. That my clothes are on the right way round. That I have just showered. That I appear to have slept last night. That I am still breathing in and out. That I may even be able to give you a comforting, knowing smile.

Sit here with us, try to rest, gather your strength. No pretence, no game face, required. We are here, we will abide with you.

I can't remember the first time I bought some new clothes after Georgina died. When I first made a phone call. When I first went out to buy some food. Or watched a film. Went out walking. Laughed. Went to work. Had sex. Plucked my eyebrows. Smiled when the sun shone. Drove my car. Even when I first stumbled here, to this Glow in the Woods.

But I did. Sooner or later. I have done all of these things. Stumbled. Watched. Walked. Laughed. Worked. More than once. Sometimes I liked doing these things, sometimes I hated doing them. Because I hated that they still existed, food, shopping, cars, eyebrows, tweezers, movies, breathing, internet sites. They all continued when my daughter did not.

At times, I didn't want to do them, I didn't want to even start getting involved in normal life again. Because how could I be remembering her properly whilst I was changing gears? Taking my wallet out to pay for groceries? 

And I also can't tell you the first time that I remembered that little baby, that once was mine, and smiled rather than cried. When I saw her, rather than only her absence heavily outlined in red. When I looked at that empty chair and nodded. In acknowledgement of where she might have been. When I looked back and thought to myself, I can't believe that I made it this far. But I did. 

When everything else was burnt away and all that remained was love. 

I can't offer you a map. I can't offer you any guarantees. I can't tell you how to fix this because I don't think that it can be fixed.

I can only tell you that the joy of my life did not end.

The joy I have now is not the joy that I expected. It is not the steady sunshine of watching my daughter grow from a baby into a young woman. 

My joy is a flickering candle, leaping up fierce and brightly. Sometimes it sputters, sometimes it goes out. But it will be lit again, sooner or later.

It is like my ghost daughter, laughing, delighted. Here. Then gone. But I know her still.

My joy. It did not end.

But yet I still go even mourning to my grave.

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How do you feel about joy? Is it still there for you?  Is it the same as it was before or does it have a different quality? Does it flicker like mine? Or is the very thought of experiencing joy currently unimaginable? 

What were the questions and statements that rattled around your mind in the early days and weeks?

Nine Days

The two of them met for a brief moment. One of them was alive, nine days old, seven pounds, four ounces, and still under the lethargic haze of infancy. One of them was dead, four hours old, seven pounds, twelve ounces, and still warm from the womb, from the closeness of working organs and a rapid heartbeat. The dead one was lifted in front of the live one, a surreal sight if there ever was such a thing. She was going to be your best friend, the mother whispered. It was hello and goodbye in the same minute.

They were meant for each other, our two girls, Lyla and Margot, born nine days apart to best friends who live on the same street.


Long before children were on the immediate radar, the four of us dreamed of a scenario where our kids grew up together, close in age and close in proximity. We imagined our babies crawling around together, our toddlers fighting over toys, our pre-schoolers trading sentences. It's only natural, of course, for two couples to wish the sort of closeness between their kids as they share themselves.

The mothers navigated the frightening waters of middle school together, and then high school and then University. The fathers own a business together. We have backpacked through three continents, riding crammed busses and jumping off bridges and sleeping in cars along the interstate. And somehow, despite living in different parts of the world for the better part of six years, our friendship remained steadfast.

And then one day they decided to move across the country, straight into our neighborhood. Then they fell pregnant. It was July when they told us, on a blisteringly hot afternoon.

Almost incredulously, ironically, we conceived Margot on the same blistering day we found out they were pregnant with Lyla. One tiny miracle created out of knowledge of the other. The women who became fast friends at the age of twelve, who have known each other for nearly two decades, were just five weeks apart. The stars were aligning.

In those early weeks, those early months after Margot died, it was hard to even imagine what we needed from our family and friends. It was shock and awe, the inability to focus, night time meltdowns, a mountain of anguish. Friends and family came and went, supporting and helping and listening in any way they can. But mostly we just tried to survive each day, one long minute at a time.

And then, suddenly, without notice, it felt like we were all alone in our grief, as if the veil of sadness had been lifted for all but us. It’s all fine and understandable, but the longing for wholeness became a desperation, to be able to share with someone our whole selves, both the anguish and the joy, however unbalanced these emotions were in our early grief. I found myself fracturing, turning into a splintered version of myself. I would smile and nod and deflect questions and give the world a sad, but more or less coping, version of myself. I longed to be my whole self, with more than just my partner. If we couldn’t share the aching burden of our missing child with friends, how on earth could we share any joy we found out of life?

But there is Brooke, mother to Lyla, friend since middle school, standing with us, kneeling with us, walking with us, crying with us, never afraid of our grief, never afraid to talk about Margot. She asks questions and then asks more questions, always wanting to share in our pain as deeply as she can. When a group of us are at a party, with babies everywhere, it is Brooke who talks about missing Margot, it is Brooke who asks what it feels like. Whenever I post a new vulnerable blog about our grief, it is Brooke who talks about it. She has abided with us, without a timeline, without expectations. And what is most astonishing, is that she has done all of this while in the midst of mothering a child for the first time. If there have been sleepless nights or breastfeeding issues or colds or exhaustion or hard days or figuring out the right bottle or any of those new parent realities, we never hear about them. And the love, the sheer perfect love of a child, that normally oozes out of a new parent, has been miraculously toned down around us. Her abiding grace, under such difficult circumstances, is perhaps the most selfless act I have encountered in my lifetime.


Nearly ten months have passed since our babies passed by one another. For a long time, it was hard to even look at Lyla, the most physical reminder of my Margot. The smiling, the giggles, the sitting up, the pure baby charm. Each little milestone was so acutely felt. But somehow through the months of abiding with Brooke and her husband, through the inevitable time that has passed, I can smile at Lyla now, hold her hand, watch her laugh. I can ask about her. She has become integrated into my pain, fused with it. She is part of the missing and she is part of the remembering.  But it is not too bitter. It is sweet. And somedays I wonder, when the rest of the world has forgotten my darling girl, when only her mother and I really miss her, will Lyla be like a marker in time, a beautiful reminder of our little girl, gone for so long?

Were there any children born around you when your child died? How does it feel to watch them grow up? How has your relationship with the parents changed? Are you able to be around the child, or is it too painful? Has this changed with time?

Un-seasonal

It was sunny and warm here the last couple of days, and is supposed to be again come weekend. Tomorrow it's supposed to rain cats and dogs. And a week and a half ago we had snow. It was wet and clumpy, and there was enough of it to break things. Not near us, but close enough to affect friends. And it wasn't even the first snowfall of the season. That's how crazy the season has been. As I drive around, the trees are in a spectacular rich fall palette-- whole streets under canopies of gold, houses framed in the very colors of fall. There's a tree that glows red in the fall on one corner of my drive to Monkey's school. Every year that tree catches me off guard. Every year I keep meaning to come back with the camera.

It's warm, for now. It's gorgeous, really. But when I step outside I can't quite believe it. It's like the snowstorm tripped the binary switch somewhere in me, and now I know it's coming.  My season of (more) longing and (more) missing and (more) sadness. You know what else? Even without the snowstorm, how could I escape-- there's a frigging Santa figure, like nearly life-sized, parked in the isle of my local pharmacy.

I remember so vividly that four years ago, in my first fall of bereavement, the first snowflakes made me want to holler. They fell, tiny and fragile, melting almost on contact. The snow was here again, the planet being nearly through its yearly orbit. What I saw, or heard, or maybe felt in the first snow of that season was that time passes only for the living. That simple, cold truth got me that day. I am feeling nudged by it again. On the mornings when I have to defrost my windshield before I can start driving and on the mornings when I wear hiking sandals. It may be warm out, but I know it's temporary.

With the holidays (and snow) encroaching, I wanted to do this thing we haven't done in a while-- ask you how things are for you. So pull up a chair and make yourself comfortable, or as comfortable as it gets these days. Grab a mug of tea or a glass of wine and tell us: How are you?