welcome

Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged, understood.

Many thanks to artist Stephanie Sicore for allowing us to feature her little bird in our banner.

subscribe
categories
search
Powered by Squarespace
Tuesday
Jul072009

Regrets, I've had a few

I saw her literally the moment I found a seat, on the floor in the very back of the room-- I was late and the room was full. I hadn't expected to see her there. I hadn't really expected to see anyone I knew there. It was a talk on raising bilingual children, held at my old Alma Mater, where I also worked for several years, until the summer after A died. I'd forgotten her husband's first language wasn't English. But had I remembered, I'd still not have expected to run into her-- I would've assumed that she'd graduated already. Instead, there she was, having made it to the talk early, judging by the seat she had-- one of the best in the house. 

Casey was a TA in the class I ran the spring before A was conceived. About half way through the semester I began to suspect that Casey was pregnant. About two thirds through, her bump made all speculation mute. She was a good TA, even if not particularly an extra mile kind. But then again, in hindsight it's tough going an extra mile through the early pregnancy while you are TAing a big class and working your tail off in the lab too.

The moment I saw her was palpable, a mini lightning bolt; in my head, certainly, but what felt like inside my chest cavity too. Way beyond your standard issue butterflies, this was real anxiety-- throat grabbing, stomach tying, air rarefying split second of oh, crap, I'm so not ready for this. I wasn't sure if she knew, and thought that she likely didn't. I was pretty sure she knew I was pregnant, though-- I remember running into her that fall, right as she came back from maternity leave. By that time I myself was unmistakably round, and going to the bathroom so many times during a workday that I was sure that alone fulfilled my daily exercise requirement. So that's where I ran into Casey one day that fall, and that's where she filled me in on the somewhat complicated childcare arrangement they'd hobbled together for her son, who she was totally in love with, and that's where I told her I too was expecting a boy.

There are certainly people who saw me pregnant who didn't remember later. In their defense, those people were meeting me for the first time then. Casey, on the other hand, knew me before. I was pretty sure she remembered. I know, I know-- unless you are a celebrity, and TV takes care of announcing your comings and goings, chances are there will be people who won't be up on your news, fresh and not so much. And there will be new people you meet who won't know. And so from time to time you will be in a position to decide whether or how to tell someone that your child is (or your children are) dead.

Telling people is a staple of our early days as bereaved parents. It's a large part of why many of us would rather not leave the house. But somehow we do (tell)-- often we send emails, or ask friends to pass the news on,-- and at some point we do (leave). And eventually the telling, if it happens, is mostly to the people who didn't know us before. To them our babies become dead a split second after they first come into existence as mental images, right after everyone's favorite word-- but. "I had a baby, but..." "We had twins, but..." "I was due in December, but..."

These hurt, of course. They hurt a lot. But they hurt differently than the early tellings. A while ago, Natalie talked about the early ones, about how when you do that, you get to see someone else's joy and anticipation for you shatter, the might've been crumbling into is. Again.

When I saw Casey from my ground-level seat that day it occurred to me that she just might be the very last person to have seen me pregnant who still didn't know. Sadly, it didn't make me better at telling her. Worse, it didn't even make me more prepared.

After the initial shock, I forced myself to concentrate on the talk, even though I kept stealing glances at Casey. She was knitting. Obviously listening, but also knitting. Which, I understand, betrays a certain level of skill. During the Q&A session, I asked a question, guaranteeing that if Casey hadn't noticed me before, she obviously would now. (Yes, not one of my brighter moves, I know.) Meaning that after the talk was over, I had no choice but to say hi, especially since the speaker was enveloped in a small crowd, and I was waiting until that receded so I could buy her book.

I'm a kind of parent that generally speaking does not do guilt. I make decisions and live with them. But that doesn't mean I don't have regrets. And I definitely regret what happened next. Because? I screwed up.

We started talking. About grad school (she hoped to finally be done this year) and work (I filled her in on where I've been), about the whole bilingual kid thing (she asked how well Monkey was doing with the Old Country language, and then how we managed to hold on to it so well). I asked about her son, and she told me they are having trouble because her husband, the one who speaks the foreign language to the kid, gets home on the late side. She used her son's name when she was telling me this. Same as A's middle name. I knew that, of course-- she's mentioned it a bunch of times, most notably that one time in TA meeting when everyone was teasing her about the possible nicknames, and she drew the line at one that, I admit, would've bugged me too. So I knew it, but it wasn't at the forefront of my mind right then, and so it packed a bit of a punch for me.

Maybe that's why I screwed up, because I was still off balance when the next question came. "So how old is your younger one now?" Or maybe I screwed up because of how the question was phrased, quantitatively, especially since we'd just listed Monkey's age, and her son's, causing my numbers-oriented brain to want to account for the Cub's age too.

What I said was "He died." And after the properly horrified I am sorries from her and her husband, and the short version of stillborn, 34.5 weeks, "But we also have a three and a half months old now."

I regretted it almost immediately. But? But? What the hell was I thinking when those words left my mouth? Spotlight shifting, minimizing, covering up the dead baby with the live one. Am I not the very person who insists, sometimes very loudly, that my sons are separate and distinct individuals, not to be confused or conflated? What I should've said was "A would've been nearly two now. Sadly, he died. We miss him every day, and love him always. We also have a new baby, who is three and a half months old. He is a joy, and we love him madly. But we still miss A. At this point, we are pretty sure we always will." There. Would that have been so hard? She asked about A, about the baby she knew about. And my answer should've stayed focused on him.

I spent the drive home thinking about what I should've said. I obsessed about it almost nonstop for several days after. It wasn't just that I minimized my own son-- the very thing that drives me crazy when done by someone else,-- I worried that I left a wrong impression about babyloss in general. I worried, and still do, that the way I spoke left the impression that the cure for dead baby blues is a live baby. An all too common misconception I am afraid I might've reinforced. Really, Julia, "but"? Real nice. Real smooth.

I considered emailing Casey to tell her what I should've said in person, and to tell her why it was bothering me that I didn't. In the end I decided it would be too weird. I still think about it, though, seven months later.

 

How did you tell people early on? Have you had to tell since? How does it feel? If you are that far down the road, how do you decide which of the new acquaintances to tell? Have you had your own Casey-- a person who last saw you pregnant? How did you handle that?

Thursday
Jul022009

tough as nails

Two weeks after we lost Sadie we were dealt another blow that at the time was inconceivable in the cruelty of its timing. Out of respect for my husband's privacy I won't go into detail here, but the short story involves a sudden and intense health scare that led us to believe that he had a potentially terminal illness.

I am not totally sure how I got through those weeks considering my fragile state to begin with. Actually, that's a bit of a lie. My baby was dead and some wackjob doctor had just told us my husband would be next. The truth is I was higher than a kite, 99% of the time. Between Ativan and red wine, my memories are fuzzy around the edges where they're not altogether black.

During one of our initial hospital visits I broke down in front of a specialist, hysterical with fear and anger at the overwhelming unfairness of it all. It was humiliating and painful beyond words. Soon after that episode something in me clicked, and I realized that letting him see my despair was no longer an option. I proceeded to try my ass off to calm him with some sort of physical osmosis, somehow via my hand intertwined with his, or wrapped up in a tight bear hug.

Six weeks after the nightmare began it was suddenly over. At the root of it all was a misconstrued x-ray and an American emergency room physician whom I will never forgive. We were given the go ahead to return to England, empty handed and shocked, wary shells of the people we once were.

The reason I'm telling this story is because of the intimate way the experience has permeated our lives since. It broke a little something in us both that is difficult to describe, mostly because I don't believe either of us fully understands it. My doctor has her opinion of course, at least for me. A curious infliction she likes to refer to as chronic anxiety.

On a bad day, a chest cold is lung cancer. A bump on my arm is inevitably a tumour. Everyday aches and pains must be underlying signs of something dire to come.

Now, before you conjure up images of my morning commute involving a padded helmet and gas mask, understand that I am not a certified freakshow. But I worry. A lot. About myself, my husband, my loved ones. And more often than not about the health of our future children. Provided, of course, I survive another pregnancy without suffering a stroke at the ripe old age of 32.

I have read that the incidence of depression in parents after babyloss is roughly 69%. I do not believe I'm depressed. However guilty it may make me feel on occasion, I still enjoy the pursuit of life's pleasures. I can take care of myself and get out of bed in the morning and am not at risk of hurting myself. But I'm definitely, one thousand per cent terrified of what the future may hold. What else we may have to endure. On a particularly bad day I wonder why I would even try again when the odds are I'm just going to get sick and die in the end anyway. Horrible, I know. But try as I might to think it away, it still lingers.

As life has sped up these past few months and our time is seemingly endlessly booked with work and social functions, there are days when there is nothing I want to do more than sit at home alone in our safe little house, locked away from the outside world.

I look at my husband in a new light these days as a result of everything we've been through together. The concept of losing him was unfathomable - yet so was the idea of Sadie being so sick. So what exactly we can rely on I'm really not sure. There is nothing I would not do for him. There's nothing I want to do without him. And I want to be a parent with him more than I could ever properly articulate on this page.

If I could just get past all of this damn fear.

.::.

Did you suffer from any form of anxiety after the loss of your child? If so, did it wane with the passage of time? Did it affect your decision to try again?

Thursday
Jun252009

social quotient

Reaching Out by jmtimages

 

If there is such a thing as social quotient, I score rather low on that. I am probably in the 5th percentile or something like that.

Back in school, on the last day of the final examinations, hordes of students would surge to town, pouring into theatres to watch a movie, or combing the malls for retail therapy after weeks of study (and performance) stress.

I went to the second-hand bookstore, lugged home a pile of novels, curled up and read. I have always been the rather (in)famous anti-social bird.

After Ferdinand died, my social quotient plunged. Crashed. Failed to register on the scale, because I totally dug a tunnel southwards and went into hiding.

The only way to know that I had not wiped my neck with a sharp blade was that I was writing, spewing all thoughts and emotions out into cyberspace, emptying my grief unbridled.

And, it took me a long time to crawl out of my little dark hole.

At one point, I felt I better be out. My girls need the sunlight, they need a social life, in some form of guise.

But being social was so hard. Talking to other people, I keep making mental footnotes like--

I can't believe I am standing here talking, my son died.

I can't believe I had a stillbirth.

But, you know, my son died.

How can babies die?!

I am not normal, even if I can stand and talk, do you understand?

::

I've never ever been the life of any party, even though for years my horoscope kept insisting that if you would just invite me to your party, I'm gonna kick it up a few notches at least.

Still, I do not consider myself a difficult person to be with. I am usually civil and pleasant, and don't bite too often. (Really!) I do enjoy being social, and (dare I say it) can be fun to be with.

I know for some, keeping with the social life they once had helps with the grieving/healing. It allows the support network to be available, it makes one feel alive and still be part of the fabric of society.

For me, I just want to rip the thread that is me right out of that fabric that is society and announce, with a wave of a black lacy handkerchief, "Forget I ever exist." I feel like I wanna turn my back upon society, upon life, and just be a vagabond, traveling to the farthest corners of the world, dragging my tattered heart in a quaint and worn leather bag. I no longer wished to participate in life.

But, how is that possible?!

It just is not, unless I check myself into some remote mental institute and spend the rest of my days forgetting my name, drooling strained spinach out of the corners of my mouth, rubbing dirt into my hair, and basically just waste away until my body decides it is time.

So, slowly, somehow I became "social" again. And I will admit, sometimes it helps. To just participate in life, be useful from time to time (when I first held a door for someone, I felt... alive), interact with strangers. Instead of just mumbling to the cashiers or pretending to be busy and not want to talk, I reached into the space that contains my heart and give it a squeeze and focus on being attentive to people I talk to. I mean, I really wanted to know about their day. And if they went beyond the usual "Great!" or "Wonderful!" and complain about a leaky toilet or having to be on their feet all day, I listened, I empathized and that made me feel more alive. Even though none of that had direct relation to my grief, it made me feel less disconnected and my heart became enlivened, even if only for a little bit.

I am curious about how others are doing and what excites and bothers them. I like to be able to interact and share my thoughts. But being a bereaved sometimes handicaps that. I still keep making mental foodnotes of My son died, I had a stillbirth and sometimes the mental footnote keeps ringing in my head as I proceed with my social life. There seems to be always this tension between wanting a sense of normalcy and desiring an acknowledgement that one is not exactly normal.

I know my social quotient will slowly go up, by virtue of the primal need to be social, by virtue of my children's needs, and I hope, that this scar in my heart that had made me raw in social situations will one day become a glowing light that shines compassion and deep empathy when I one day become a more normal social animal again.

 

In our deepest moments of struggle, frustration, fear, and confusion, we are being called upon to reach in and touch our hearts. Then, we will know what to do, what to say, how to be. What is right is always in our deepest heart of hearts. It is from the deepest part of our hearts that we are capable of reaching out and touching another human being. It is, after all, one heart touching another heart.
~ Roberta Sage Hamilton ~

 

And you? How do you do? What's your social quotent, were you a social maniac before, or were you more of a hermit? How did babylosthood affect your social life? What was hard about being social again? How did being social help? What was the first social event you chose to participate in, and why, and how did it go?

Wednesday
Jun242009

glow in the woods awards: spring 2009

It's not just the life and work of this man that has us wanting to consider the unique loss of medical termination this season at Glow. It's the words of Aleina of Letters to Layla.

In her post I love my baby no matter what, Aleina reminds us of the weight of what seems to be a 'decision' -- a weight that many of us NICU parents can relate to, having had to face the sudden, counter-intuitive quiet of a ventilator. But as Aleina writes, the word 'decision' tends to work best when applied to a situation with at least two, if not a variety, of choices. And when it comes to the ending of a child's life, 'choice' is an illusion.

She writes: Even in the initial phone call when Patricia mentioned that the specialists would be discussing my "options" with me, my head spun. What options? This was my baby. There were no options.

And then...well, everything changed. What happens when all the options are awful? What happens when life is not necessarily the best option for your own child? What happens when you have to choose their well being or yours? Just like any mother, you choose your child's.

Aleina's writing is tender, forgiving, raw and timely. This month, we consider this corner of babylost parenthood -- fathers and mothers backed into a corner by fate -- and we offer them our love and appreciation for sharing their voices.

+ + +

This season's Glow in the Woods Awards drummed up a fantastic array of writing. We always hope you visit our nominees, but this month, we're coming straight out and asking you: please go through them all. Read their words to perhaps smile, or think, or nod your head in recognition, or cry healing, balmy tears. Thanks to all of you for expressing this journey with such grace.

The following nominations for Spring 2009 encompass posts from March, April and May. To review all the winners so far, go hereNominate any time -- whenever you find a post that moves you, send it us. We're constantly grateful for all of your voices, for all that you share in this space and with each other.

Our glowing nominees for March, April and May, in random order:

D of Klepsydra for Letter never sent   |   That’s when I really fell in love with this miraculous mystery person… this little being that would become a full-blown person, hopefully better than me in ways that would surprise and dismay me. I was in love with this little/big person, and I was ready to become a father.

Adrienne of Noah Steven for 3 years ago   |   There is no 'right way' to grieve nor is there only one way. But don't forget to grieve because in grief, you look close enough, there is beauty, such great beauty!

Heather of The Spohrs Are Multiplying for He rests under a shady tree   |   …it hit me that my beloved Grandma would have understood exactly how I was feeling. That we had a terrible, terrible thing in common. I missed her so much in that moment.

Angie of Still Life with Circles for Angie weeping   |   I felt such a pull of two emotions. One screamed like an insane women, "Get me out of here. Get me out of here." And the other wanted to pull each person to this painting and say, "See how sad she is. This is how sad I am too."

Margaret of She’s Come Undone for Who am I   |   I look down at my baby and at my husband holding our three year old and think, "At least I have you." We have each other and someday I'll be ok.

Mrs. Spit of Mrs. Spit Spouts Off for You can’t divide by zero   |   The ride of infertility is a long one, with many exit points. The problem is, none of them seem to be clearly marked. Perhaps we ride around and around, and for some of us, I think maybe we fall off in exhaustion at some point...

Jenni of Demeter’s Feet for Two months and sticky spaghetti   |   I'm able to say that I feel a little better without feeling desperate and guilty and profoundly separated from my little girl...there is some spaghetti sticking to the wall.

Jessicat of Dear Gus for Circles and spirals   |   I keep getting out of bed every morning, and cling to the assurances of the people who have been down this path before us that the pain of losing you will not always be this raw; I’ll develop some scar tissue eventually.

Once a Mother for Moving on   |   I didn’t choose to have a child born terminally ill. I didn’t choose to fall in love with her, to let her huge spirit envelop me and to believe in her ability to beat this.

Gal of Growing Inside for How do you fill your jar   |   A rabbi stood before hisyeshivaclass and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was…

Anne of Hello, Fancy Pants! For Hearts-on-sleeves-or-falling-out-of-two   |   I need a sign, a sign that says, ‘Please leave me in peace. This is my 7th pregnancy, and you can see I only have 2 living children…’

Inanna of Inanna Journey for William’s birth story: hello and goodbye   |   Why had I been so afraid of him? Afraid to see him, touch him, even think of him, after I knew he was gone? Death scares us so much, that constant reminder. We're mortal. We live, we die. We're transient, our time here so short.

Inanna of Inanna Journey for Journey begun   |   I felt myself descending with every contraction, going deeper into myself, deeper into the darkest recesses of motherhood.

Catherine W of Between the Snow and the Huge Roses for Things that I hope   |   I hope you know how much I wanted to nurse you when I was allowed to hold you. Even though I knew you were dying, I still wanted to give you life. So much.

Molly of The Unlucky Lottery for Spreading Colden’s ashes   |   I had carried him. It was really important to me to do it myself, to carry him as I had once carried him within me. So I took that awful little white box from the funeral home, and I opened it.


Monday
Jun222009

when mama cries

www.flamingpear.com

I do remember my mother crying. I don’t know whether she cried more than most women. She just seemed more comfortable doing it, less reserved, unapologetic. I do remember her crying, and I never really thought there was anything wrong with it. I think it is my mother I have to thank for the ease I have always had releasing my own tears.

I do remember worrying, though, especially when her melancholy would carry on for a while. When she felt blue. When she would spend quiet time with herself, caring for the plants in our garden, rather than engaging with my sister and me as we played nearby. In those moments, I wanted her to cheer up. I wanted to be able to make her feel better. Sometimes I could, but not always.

One day, maybe it just got to be too much for her. And she left, to take care of just herself.

Have you ever read the book or seen the movie, The Hours? About how women throughout time have carried their sorrows? That story just gets me from such a knowing place. After watching it in the theater, my sister and I clung to each other, cathartic tears streaming down our cheeks until the credits had unwound and the lights had come back up in the theater. I looked at my sister stunned and eventually got up to wobble home on spaghetti legs.

Melancholia

The blues

Feeling down

Depression

Mental illness

We are so frightened of these, aren’t we? So stunned by them. I find it irritating when depression is referred to as something surprising…

You’re depressed?! How baffling! How mysterious! How could you possibly be depressed when your life is so good? Look at all the blessings around you! Cheer up! You can do it if you just choose to!

As something that has to be cured, overcome...

We must address this right away! You can feel better with the right help. You have to feel better! We must absolutely help you to feel happy again!

As something that has to be medicated, conquered, eradicated…

There is just so much depression in our society today. But now we know how to treat it! Now we know how to beat it! Now we can free you from its hold with the right combination of science and counseling.

 

Trust me, I am a big fan of therapy… It has saved me many times from sinking to a place from which I might never return. Zoloft helped me once too, when I just couldn't get my head above water no matter how hard I tried.

But can we look at depression, maybe, in a different way? See it. Recognize it. Say hello to it rather than shoving it down?

Hello melancholy feelings! Hello unexplainable sorrow that won’t go away in an appropriate amount of time! Here you are again! Welcome. I see you. I hear you. I feel you. I befriend you. Tell me what you need to share with me.

As someone who comes from a long line of people who – egads! – have experienced great depression (they called it melancholia back then) for a number of reasons (they were Holocaust survivors, they lost everything and saw horrible things), and some who have felt it without any apparent cause, it just annoys me the way we approach it in our larger culture.

As a woman who has struggled with my own depression, my own melancholia, my own sorrow and loss and grief and misery – several times, even before losing my child – I have a bone to pick with the way we approach our difficult emotions, how we hold them… or rather how intensely we try to shake them off and as far away from us as possible.

.::.

Shortly after Tikva died, an old friend sent me Miriam Greenspan’s book, Healing Through the Dark EmotionsFinally, I thought after reading the introduction, somebody who gets it! Somebody who understands that the way to get through the hard stuff is to go through it. To be with it. To listen to what it has to teach.

Greenspan lost her own first child, who died just weeks after he was born. Her second child was born healthy. Her third child was born with a serious physical disability. It is clear that her children have been her greatest teachers. But it is not a book about losing a child, nor one about parenting a child with special needs.

As a mother, as a human being, and as a psychotherapist with years of experience in private practice, Greenspan writes about three primary emotions, which she calls the dark emotions – grief, fear and despair. She writes about the alchemy possible when we can really feel them, really experience them, go deeply into the darkness that usually scares us away. And she writes of coming through to the other side, the “transformational process by which grief becomes gratitude, fear turns to joy, and despair opens a doorway to a more resilient faith in life.”

Greenspan writes about compassion, about how it is almost impossible to live in our time, in our day, in our society, with so much sorrow and struggle all around us – and not feel dark emotions. Why, then, do we feel there is something wrong with us when we feel depressed? Why are we told so automatically that it is something that should and can be fixed?

I had so many ah-hah! moments when reading her book. Not because it was something I didn’t already know, but because it just resonated with me as truth, and it was a reminder that came at just the right time…

That there is no way I am going to truly survive – and by survive here, I really mean to thrive after (because we are allowed to thrive again, we are!) – the death of my child if I don’t go first to those dark places in my soul, look them in the eye, and ask them what they have to teach me.

It’s that hindsight is 20-20 thing: I have learned enough from my less successful attempts at pushing down my grief in the past to know that this won’t get me far for very long. I have learned that I certainly won’t get anywhere remotely close to growth by ignoring what needs attention in the dark places in my soul. I tried that in high school, shortly after my mother left, and I found myself two years later with 65 extra pounds of weight on my body and an anger shoved so deep inside that I found myself too depressed to get out of bed.

.::.

Here I am now, ten and a half months since my sweet girl died. More than a year since she was born so fragile. Almost a year and a half since her ultrasound, when my world as I knew it imploded and my life changed forever in ways I am only now beginning to understand.

“Grief becomes gratitude, fear turns to joy, and despair opens a doorway to a more resilient faith in life.”

I’ll tell you something that isn’t easy to admit, especially here…

I do feel gratitude.

I do feel joy.

I do still have faith.

Something is being transformed deep inside me since – because – I lost my Tikva. I don’t think it would have happened if she hadn’t been who she was. If she hadn’t come and gone so quickly. I consider it her gift, what I get instead of my second child here in my arms, healthy and well. It is a gift of compassion. True compassion, which starts with compassion towards myself. Begins with patience and understanding towards myself as I go through the messiness of the ups and downs of each day.

When I read about the possibility for gratitude, joy and faith months ago, I opened up to the possibility that I could get there as I went through this dark passage. It’s true. They’re there – the gratitude for Tikva, the joy I feel when I see a hawk flying above or feel Dahlia climbing my body as if I were a jungle gym, the faith I have in good things ahead. They’re there – even when I only feel them in glimmers every once in a while, balanced by their darker counterparts.

I’ll keep going there, through the darkness, towards the light. And as I do, I’ll continue to cry as much as I need. Cry at the sorrow and at the joy. These days I wonder if one can truly exist without the other. Maybe that’s what Tikva came through to teach me.

.::.

How do you experience your dark and your light emotions? What are the ways in which you go there, deep into the shadows or leaping towards joy? Do you sometimes avoid your more difficult emotions? What works for you in navigating all the places in your soul?