Everything In Its Right Place

Today, we welcome a guest post from Brianna at Daily Amos.  In 2010, Brianna's first son George was diagnosed with heart failure caused by supraventricular tachycardia at 24 weeks gestation. Over the next four weeks, the doctors tried to slow his heart rate down with medication. After stopping treatment, Brianna developed Mirror Syndrome and had to have an emergency c-section. George died shortly after birth. --Angie

Sometimes I wish that instead of letting someone else do the job, we had escaped from the hospital, all three of us, and ran away to some place where we could have done it ourselves.  Wrapped him gently in linen and flowers, then set him in a tiny boat adrift and ablaze on the sea.  His body, our hope, and my former self flaming and crackling against a black sky while rolling on the waves of the Pacific Ocean.

Instead we flipped through a list of funeral homes given to us at the hospital and made a phone call. Two days later, a stranger collected his body and took it to a sterile and cinderblock constructed factory to be cremated. No ritual. No tenderness. Just business. It was neat, tidy and impersonal when his death was anything but those things. I guess that is what civilized people do these days; we let the men in the suits with the solemn but detached faces handle our dead.

There was a time not too long ago when a woman would wail and weep and throw herself at the body of her dead loved one. She would unabashedly rail against Death's untimely visitation. At some point in time we traded the display of mourning for the "dignity" of silent suffering. When George died, I wanted to scream at the top of my lungs but instead I whimpered in the solitude of my bedroom. I felt ashamed to grieve too loudly or too publicly and so George's death wasn't marked so much with an exclamation point as it was with an ellipses.

Pretty early on, we decided against having a memorial service. Family and friends were scattered around the globe and neither of us had the energy to coordinate anything. Making phone calls and working out a date that everyone could make it to seemed like so much more than we could handle. We could barely even organize a trip to the grocery store let alone a memorial service for a well-loved but barely known baby. I remember thinking at the time that there should really be a secular equivalent to a priest or a rabbi, someone with a little more personal investment than a proprietor of a mortuary, to handle things like organizing a funeral service for those of us who don't subscribe to any particular doctrine or religion.

So instead of having a service we quietly picked up the little copper box that held his cremated remains and brought them back home with us, where over the next few months they meandered around the house like Goldilocks.  First on the bedside table, nestled in knitted baby blankets. Too warm. Then inside the bedside table and out of sight. Too cold. A brief stint on the mantle. Too obvious. Some weeks on the shelving unit. Too ordinary. Finally back to the bedroom atop a set of dresser drawers. Just right. Good enough. 

 There on the dresser, next to my jewelry, is where that copper box has spent the last year and a half, accumulating dust.  I know that what is in that box is not my son, whatever made him him was gone long before his physical body was put in the fire.  What hides away in there now, and what I am still frightened to see, are just the remnants of a mineral matrix; calcium phosphate, zinc and potassium.  But even so occasionally when I pick it up to wipe off the weeks of neglect, I feel a stab of guilt.  They deserve more than what I have up until now been able to give to them.

It takes time to gain perspective.  It takes even more time to build action on top of that perspective.  For me, it has taken two years to find the strength to do what I feel like I wished I could have done right away- look upon his death and those ashes without trembling in fear.  Last weekend, on the anniversary of his death, we brought the copper box with us down to a tree-lined stream intent on opening it for the first time and giving some of them up to the cold water.  That his ashes would travel along in the stream, bits of those minerals being taken up by other living things on the way, is as close to believing in life after death as I have ever been able to come.  That he would, in a way, become part of something much bigger than the sum of his parts is as much as I could ask for at this point.

Two years of inactivity made opening the box and gaining access to his ashes as difficult as breaking into a safe.  After multiple attempts and comical -albeit morbid- visions of the lid popping off and ash flying everywhere, we figuratively threw our hands up in the air and gave up.  So for now the copper box, along with some new dents and the entirety of its contents, is back in its place in our bedroom...next to a single dress sock and a receipt for gas.

I'm not sure when or where we will be ready to let go of his ashes again.  My hope is that when it happens, if it happens, it will be peaceful and we finally feel like we found the right place.

Glow in the Woods's section How to Plan a Baby's Funeral shares the different perspectives about how some of our readers and regular contributors handled funerals, cremations, burials, and the planning. This section is a permanent section and intended to be a resource for parents in the hospital. So if you have a moment, please head over and share your perspective there as well.

 What did you do with the remains of your child(ren)?  Did you have a memorial service? Why? Why not? Did you wish you had done something differently? If you have your child(ren)'s ashes, do you think that one day you will ever be able to let them go?

room around the campfire

When I first came to Glow in the Woods, it was after months of feeling apart from the world. My daughter died. I fit nowhere. I didn't fit with the forums from the pregnancy sites I frequented. They were riddled with God's plan, angels, and a faith I just couldn't muster anymore.  Those words felt like walls, keeping me away. Then a link to Glow in the Woods fell into my inbox. I was suddenly reading words that could have come from my own brain if only I were eloquent enough, or funny enough, or strong enough. But it was about me. It was for me. I cried out of sheer relief. I suddenly felt a part of, rather than apart from the world. Glow in the Woods became my community. Glow in the Woods became my tribe. We are a people.

A year later I sent in my writing during an open call for regular contributors. I was afraid I wasn't talented enough or insightful enough, but I just told me story, the way I tell my story. I sidled up to the campfire, writing about my dead daughter, ritual, Buddhism, my grief, my love, and my anger. I felt warmed by the open flame and your support, a strange and intense heat after such a cold, lonely walk in the dark woods.  Later, when Kate stepped back as editor of this space, she asked me to step in to welcome newcomers to our woods, guide regular contributors, keeping the original vision of this space alive. I feel more than honored.

Voices of our regular contributors are heard here every month on our front page, and other voices from the tribe in the comments and incredible forums are the very lifeblood of this place. It is the ebb and flow of voices in this space that gives it a kind of vibrancy and life that seems surprising, given what we are writing about.  We are having a conversation. We ask questions. We gain insight. We share our perspectives. We cry together. We question everything. We learn more about our relationship to ourselves, to the world, to life, to death, and to grief. It is never just me sharing, or him, or her, it is all of us talking.

I am often asked how we chose regular contributors to share their voice monthly here. Regular contributors at Glow in the Woods have been selected through a variety of ways throughout the years--open calls for writers, favorite blog writers among the Medusas, or a writer being suggested by our readers. Julia was among the early writers at Glow in the Woods (She published the fourth post on this site). I was selected during an open call process in 2009, like Jess. Others were selected by recommendation, or connection, or popularity in the babylost blog world. Recently, we have been thinking about all the amazing writers in our community. We have consistently maintained seven regular writers at Glow in the Woods since its founding (give or take one). Recently, we have decided to add another regular contributor--you.

By that, I mean, we have decided to add guest writer position to appear once a month. We used to have nominations for awards at Glow in the Woods as a way to read the amazing posts in our community, but it became too much work. Again, we have traditionally chosen guest writers among the community of babylost bloggers whom we read on a daily basis. But there are too many blogs for us to read, too many amazing voices, too many strong writers without a blog, too many people who get overlooked not on purpose, but because we simply cannot keep up.  So twice a year, Spring and Autumn, we will be selecting six pieces by six different writers representing six different perspectives. These pieces will be published once a month for the Summer months (June through November), then again, after another call for writers, in the Winter months (December through May).

We ask that you follow our guidelines for submission and read through the work on this site to get an understanding of the kind of writing we publish here. Work must be submitted using our submission form. This submission form will remain active until April 27, 2012, when the open call for guest post submissions will be closed. If you have any questions, please comment on this post, or send me a private email here. 

You can submit your essay for consideration here.  And thank you for being part of this amazing, supportive community.

tattered and faint

The plastic hospital fork felt slippery in my latex-covered hand as I fed my mother unpleasant mashed potatoes.  She hated the taste and that she had to be fed and I hated having to do it, but neither of us had a choice in the matter.  MS is a brutal disease and this most recent trip to the hospital was as enraging and scary for her as it was brutally sad and awful for me.  But my presence made her feel better, and I would do anything I could to help her heal enough to get back home.

I ate alone that afternoon before I went in to see her and I could feel my sadness as a physical presence in my body.  Silas's death was not an inoculation from grief.  I learned many things from that experience but one of the most important was that the only way through it is straight ahead.  I also learned that silence and aloneness and grief are utterly tied together for me.

Sitting in that restaurant yesterday it felt like an old familiar poison coursing through my veins. I felt more than just alone.  I felt a complete Otherness, like an alien in my own skin, totally cut off and unlike anyone else in the establishment.  I also knew I appeared absolutely normal and that no one there would ever suspect my blood had turned sluggish and thick, that my guts had a hole in them bored straight to Hell, that my heart was clenched like an angry, angry fist and that my soul was tattered and faint once again.

Silas's death was sudden and impossible.  That perfect pregnancy shattered in an instant and I felt cut to pieces.  My mother's sickness is a slow grind of failings and infections but the shock of a loved one in the hospital and in mortal peril is equally devastating in much the same way.  I guess that is what happens when hope is revealed to be nothing more than a wish, and that health and life are revealed as fleeting and delicate.

My mother may yet heal enough to go back home, but she won't walk out of the hospital.  She has not been able to walk in years.  She may battle off this latest infection and be granted a few more years but it is impossible to know.  It is terrible, but I cannot help but look at her and know that someday, someday sooner rather than later, she won't be here anymore.  It turns out that despite the years of crying after losing Silas, that I have not used up my life's allotment of tears.

Sometimes my grief is all-encompassing, transforming the world around me into a pale, featureless void that echoes the endless blackness within.  Sometimes it compresses into that angry knot gripping my heart so that I can breath and eat and live but only with great effort.  Every now and then when things are particularly good, that sadness is reduced to a tiny, dense speck that I can almost overlook except that it is so small and compacted and ridiculously heavy that nothing can move it from the core of my being.

I can't make it be anything else than what it is, though, and the only way to endure is to breath as deeply as I can, let the pain wash through me as tears and shit and rage, and try to force another tasteless bite of food into my body before I go and help my mother do the same.  Her incredible strength and will to live has kept her going for thirty-eight long years with MS.  Her example was what gave me the strength to battle through the worst of my pain when Silas died, and now I have to be strong for her, too.  I know I can do it because I've already done it, because she showed me how.  I just hope I have enough for all of us.

How has the loss of your child or children altered your sense of sadness and grief?  Have you had to deal with losing other people in your life since you lost your child?  How was that grief different or similar?  What does your grief feel like in your body?

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.

++++++

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?

Warped?

My department's administrative assistant is a very, very nice woman. I chat with her almost every day when I come into the office to check my mailbox or to pick up what I sent to the printer. Last Friday towards the end of the conversation she mentioned that she'd just been by to see her niece the day before, and that it was because the niece is due any moment. Not my favorite conversation, but I made a supportive noise. "And you know, the cord is wrapped twice around the baby. So they are going to take the baby on Tuesday if she doesn't go before then." I felt my eyes go wide at the "twice." It's an involuntary response, and it comes with the throat tightening. I am pretty sure my blood pressure jumps too.

I am, though, by now able to remain at least outwardly calm. I asked if they were planning induction or c-section for Tuesday, I nodded to her saying that the niece might go earlier as she'd already lost the mucus plug. I didn't jump in with horror stories, mine or anyone else's I know. Because in truth I know that nuchal cord occurs in a relatively sizable percentage of pregnancies, and that most times it presents no problems at all. And because this is not the way I want to tell people about A. The administrator, she doesn't know. It sounded like the doctors were aware of the risk and managing it. So I stayed mum. I thought about them on and off through the weekend. And Monday I made sure to stop by "to check my mailbox" even before dropping my stuff off in my own office. Because as rational as I am trying to be, taking pregnancy and birth related things for granted is just not something I can do. The niece is fine, by the way-- she had a healthy baby on Saturday.

It's not that I am a mess about every single pregnancy I am aware of. In fact, it's a lot harder to expect bad pregnancy-related things to happen to other people than to myself. When my sister was pregnant, she was a lot more nervous than an average bear. Understandable, as she was so very present for us, and in fact was the only person other than my husband and myself (and hospital and funeral home staff) to have seen A. But me? Not until one of the nurses called a doc about the heartbeat strip looking a tad too regular during delivery that I really really worried that something horrible may befall her too (it didn't, my nephew was just taking a little nap amidst contractions). I don't mean I assumed she'd be fine, but I didn't have the horrible pit in my stomach for her the entire time.

I think I assume other people's normal pregnancies will go normally. (Other babylost mamas are the exception, of course-- I worry there. But then none of our subsequent pregnancies are really considered low-risk, are they?) But throw in a hint of trouble, the barest, tiniest hint of trouble and this person, whether a friend, acquaintance, a blogger I just heard about, or a complete stranger begins to occupy a large chunk of my thoughts. I don't want them to know what we know. I don't want them to have a reason to google in the middle of the night. I don't want them to become one of us. Nothing I can do about it, of course.

Or mostly nothing. I once made a pregnant friend call her OB's office when we were on vacation. The friend had a stomach bug, and I was pretty sure the office would send her to the nearest hospital for fluids and monitoring. They did, and when we got there, her dehydration was so severe that there is a good chance getting there when we did prevented at least a bout of contractions. And I think that if I heard of someone who sounded like they were not getting good care or not reporting important symptoms, I would likely raise an alarm and try to get them to do something. But for more minor things I have now trained myself to stay out of it.

It doesn't take a shrink to know why signs of trouble in even complete strangers' pregnancies bug me. I mean, I had a pretty busy weekend, and I still thought about this niece I've never met more times than I've thought of most of my own friends. And because living in my own head is what I do, a lot, I also think about how it is that I react outwardly, and why. Five years on, many conversations are still not very comfortable to me. The "when" the baby comes ones are particularly not my cup of tea. But in most situations, I just look for the shortest or most graceful way out. Early on I was more likely to think of these conversations as a way to tell A's story. But now it's almost as if I am afraid that a pedestrian conversation might be beneath his memory, might get the dust of trivial onto the sacred.

It's weird, I know. One thought that used to drive me bonkers in the early months and years was that most people in the world don't know he existed, and never will know. That as important as he is to me, he is nothing to them. They can go on about their business unencumbered by the thought of him, of all this promise gone, of all the potential not only unrealized, but never even hinted at. And now I don't want to use his name in vain. It's not that it doesn't bother me anymore that others don't know. It still does. But now I don't want to shout about it from the rooftops. I want to tell, I think, in a way that gives dignity to his memory and to him.

A friend once said that she doesn't always know how to speak of A because, she said, "he is your pain." "No," I replied, "he is my son." This, I think, is why I don't talk about him every time I could-- I want him thought of primarily as my son, rather than that very sad thing that happened to me. So when I hear of a pregnancy complication, I don't want to brandish A's story (or any of the other babylost families' stories). I think I worry it would be seen as a prop. I don't want to get attention that way. But I still worry.

Have you been in a position to discuss someone else's risky pregnancy? How do you react? Do you tell everyone about your child(ren) or are you selective about it? Has that changed with time?

Pale Blue Dot

See the faint dot between the white lines? That's planet earth. And it makes me wonder about my dead baby.

Just before Voyager 1 ended it's primary mission and blasted off towards the outer reaches of the Solar System, it spun around and snapped a photo of earth, some three and a half billion miles away. This photo was taken in 1990 (and the Voyager, incredulously, is still going).

On the one hand, of course, the sheer insignificance of the earth, and our lives, in the grand scheme of the solar system is sobering. There appears to be a bigger story being written, cosmic and infinite in size, and one that will be downright impossible to ever understand. The notion that any of us, with such finite minds and limited understanding, could have anything figured out seems almost foolish. As astronomer Carl Sagan pointed out, “Our posturings, our imagined self-importance, the delusion that we have some privileged position in the universe, are challenged by this point of pale light. Our planet is a lonely speck in the great enveloping cosmic dark.”

From this vantage point of earth, everything about our significance is lost. The pain and joy and suffering and pleasures of our earthly human existence are all invisible. From out here looking in, our spinning earth boils down to life and death. The collective species lives and dies and enters the earth. End of story.

Insert my Margot into this picture of earth and you can barely discern any difference between her and the rest of the species. She lived, she died. She suffered the same fate as everyone else, and from this far away, the difference between her life and her great, great grandmother’s life is a mere blip in time, the same beginning, the same end. There is no tragedy from this vantage point, no suffering, no feeling of loss.

I am insignificant. She is insignificant. But at least we are together, tiny specks on a tiny speck with no Horton looking out for us. And there is some peace in this reality, some science comfort.

The other side of this image, however, reveals what a crazy, far-fetched, inconceivable fucking miracle it is that we even exist at all. The notion that the universe aligned in just the precise way for the species to make their grand entrance on planet earth, and for the species to continue to evolve over the millennia, and to evolve in such a way that our brains allow us the ability to think and feel and experience this little speck on which we live, is damn well breathtaking.

It’s here where I feel the tragedy of Margot June more deeply than ever. Her own miraculous story was cut short, without ever getting to experience this cosmic mystery of life on earth.  

I used to feel so sorry for my family, for our collective broken hearts, for the life we didn’t ask for, for the loneliness of losing a child. For her mother, whose waisted milk came in and dripped aimlessly down her flesh, who carried her for thirty-nine long weeks, who felt this more than anyone; for her sister, who kissed her in utero and spoke of her constantly, who always got this euphoric look in her eye when we described what being a sister meant for her; for myself and the broken dream of raising two girls, holding them both in my arms as we navigated life together.

Now days I mostly just feel sorry for her.

For in this image, I’m reminded of the revelation that she was, and all that was waiting for her on the other side of the womb. I’m heartbroken she missed out on the complexities of life on earth, no matter how insignificant or miraculous our pale blue dot is.

How does this image of planet earth make you feel in regards to your missing children? Does it bring peace or despair or a mix of both? Does science play a role in your grief? As the time has dragged on without your children, have you felt more or less sorry for yourselves?