Waiting to exhale

My bad season starts all the way at the end of November. It's the feeling of walking towards the edge. Not all the way to it yet, but certainly towards. December 31st is our N years and 11 months day. It's been tough so far, for N=0 and N=1, to reconcile New Year's Eve, a big, huge deal for those who hail from the Old Country, with the inescapable understanding that the event being celebrated takes us smack into the longest, coldest anniversary month. Januaries themselves have so far been difficult. Not every day, but many. Most? And when that's over, there is still, just over the February hump, the due date anniversary.

Two years ago today was the Tuesday after. After the due date, due date that is the day after his sister's birthday. Monkey was born on her due date, which is why, I think, even though A has his own birth day, I am unable to let go of the due date. Two years ago today was also the Tuesday after Monkey's 5th birthday party. For which I'd gone entirely overboard. The present she wanted most of all-- her baby brother to be born right on her birthday,-- wasn't going to happen. So it's only logical that I went into overdrive for this party, yes? And it was a good party, don't get me wrong. Hell, it was a great party. And in the end I was exhausted, overwhelmed by tiredness, but also (DUH!) by grief.

And yet, there was not much room for me to cocoon-- my house was teeming with relatives. They've come to celebrate the birthday and to mark the due date. They've done both, and it was good. But, at times, it was also too much. Too much noise, too much talk, too much space, physical and head both, occupied.

Two years later, and the season had been hard, again. Heh-- not so much had as has. The season is still hard, and still going on. I think I expected it to be easier. Not easy, just easier. And, I realize now, I expected it to end already. What, too much to ask?

It's not that I think things should be easy by now, an it's not that I expect a magic wand to be waived the day after an anniversary, freeing us for another year. It's more that I think of these seasons as release valves, allowing us to feel and release whatever hard things need to be felt. This year, though, I think I have been too crowded to exercise the valve, my mom here for a visit on the anniversary, and now both my parents for this year's iteration of Monkey's birthday followed by the due date anniversary. The time in between eaten up by work and more work and some garden variety colds.

My parents left Tuesday morning, and that afternoon, after I dropped Monkey off at gymnastics, I headed for the cemetery. I haven't been since A's birthday, when the snow was covering the ground, knee-deep. I hadn't planned to go. But my plans changed midday, and suddenly I was the designated gymnastics driver, and the place being not five miles from the cemetery, I had to go. Had you been magically transported into my car at that very moment to magically ask me what it was I was hoping to find where I was going, I am not sure I would be able to tell you. I have been blocked, crowded, boxed in. Maybe it was the open space and the early spring air I was seeking, pleasantly cool, with just a hint of the warm that is to come in the months ahead. Maybe I was hoping to cry buckets and leave cleansed. Maybe. I don't even know that I can say that. I was suffocating. I needed a change, some kind of change.

Monkey's birthday weekend was an exercise in just enough-- just enough barely controlled chaos to give the girl a great celebration without losing my ever-loving mind. Monday, the due date anniversary, was a ridiculously busy work day, loaded up with holy crap, how did I miss this-- Purim is tonight?!?!?! And parents. Whom I love dearly, and who are really usually better than most. But what I needed was room, and instead they hovered.

Did you know that I was supposed to post on Monday? I asked for the date on our cozy little GITW scheduling calendar. I thought I would have things to say. Something profound perhaps, about the birthday and the due date, the sweet and the bitter. Something. What I had, just then, and for two more days after, was a whole lot of nothing.

I am a bit better now. But only just better. Getting my house back to myself (and the usual suspects residing therein) has helped. But the week has continued in the busy, though no longer impossible, mode. The weekend in front of me is busy again, with the things that need doing in the here and now. Deliverables, so to speak. And so I continue to leaf through the calendar, forward, looking for less, looking for days not already overcommitted, not promised to too many tasks.

I am looking for the time I can spend with myself, and with A. Because this is what this is really about-- he is being crowded out. I allow him to be crowded out. I never did cry at the cemetery this Tuesday. I felt the weight, played with it, shifted it around. But it didn't come out. I guess it's not ready to come out. Yet.

What are your seasons? If you've gone through a few now, how have they been for you? Do you ever feel too crowded? How do you find, create, or protect the time and space you need?

survey on stillbirth support via the internet

Dr. Katherine Gold of the University of Michigan’s Department of Obstetrics & Gynecology studies pregnancy loss (particularly stillbirth) and its effect on families, and explores how the healthcare providers might improve their response.

Dr. Gold has put together a brief web survey for mothers who frequent internet message boards and discussion groups for support—with the results, she hopes to explore the Internet and online communities as a channel to help bereaved mothers, and data from the survey will help the university to design more effective support programs.

Click here to share your voice, your story and your feedback--keeping in mind that the survey focuses on the use of message/discussion boards versus blogs, and is designed to collect quantitative data as opposed to anecdotal.

The survey is free and confidential; both the study and survey have been reviewed and approved by the University of Michigan Institutional Review Board.

Update on 2009-03-11 14:30 by glow in the woods

There's a backstory to our posting of the University of Michigan's bereaved parents survey. Click through to the comments for the feedback that prompted the whole story, and please -- add your own thoughts. If you found your way to the survey and felt the same way I did, my sincere apologies. I should have preceded our link to the survey with a disclaimer.

What do you think, if you've seen it? Can surveys like this help hospitals to create better programs for bereaved parents? Do your answers reflect an authentic picture of your healing and your use of the internet to achieve it?

Guilt

Grief is a tidy little word on the face of it -- it seems to suggest that we're just humming along, mourning our lost children.

Easy peasy.

But we all know too well that grief is a non-native, invasive species, wrapping itself around other parts of our life and suffocating them. It's a balloon that inflates, until it encompasses so much more than death itself. I often feel like I grieve multiple things: my old body, my old self, optimism, little-f faith, confidence in medical testing, unbridled joy, the unpleasant pruning of family and friends in this debacle, the family of four I envisioned. Oh, and my daughter. What I really want, I suppose, is the freedom to just miss my daughter.

Then there's the extraneous stuff that complicates grief. Multiplies and magnifies it. Doubt. Confusion. Uncertainty. Could be religion or parenting, could be infertility or relationships.

Could be guilt.

The first thing -- the absolute first thing -- I said to my husband after The Conversation with The Specialists where they told us Maddy was dying, and how did we want this to happen, and left the room so we could have a moment together was:  I'm Sorry.  

I'm not exactly sure what I was apologizing for -- marrying me? meeting me? falling in love with me? -- because when you get down to it, I had nothing to do with Maddy's death. Regardless of who's right in this mess and whether Maddy died of some never-before-seen genetic disorder or an infection circa 25w gone madly awry and then correcting itself, I float above rather free of blame. I had an extremely monitored pregnancy, and the umpteen ultrasounds through 32 weeks which never detected a problem. I never had a worrisome symptom. I never had contractions or leaking that needed medical attention. I had amnio because I was maternally geriatric and it was normal. I didn't miss signs, I didn't skimp on care. There was no date where I could have stepped in and said, "Something is wrong," and something could be done where everything would've turned out alright.

There is only the beginning. For me, what residual guilt I have over Maddy -- her awful little life and her death -- lies at the very onset of her conception when I said, "Let's try for a second." That's the only point I could've stopped the train from going off the rails, by not letting the train leave the station at all. But like someone who was broadsided by a car that missed a stop-sign, that's rather like saying, "I'm sorry I went to buy groceries." "I'm sorry I decided to go to work today like I always do." "I'm sorry I went to pick up our kid at school."

And so for the most part, I've let it go, and I swim this complicated sea of grief rather guilt free. I realize in that respect I'm sort of an anomaly in these parts, and that many of you feel guilt surrounding your baby's (babies') death(s) like a shoe on your throat. Missed signs. Care that at the time seemed plenty attentive but in hindsight seems sketchy. That 20-20 vision where you now know exactly when things started going poorly, and maybe if you had known, and could've gone somewhere, and convinced someone, and done something . . . .The feeling that if, if only, what if.

And I often read these posts and want desperately to step in and turn guilt off like a faucet.  It's moot! I scream at my screen. It's happened. And it's only complicating things. Let it go. It's not your fault.

But there's nothing I can say, because I know it's not for me to say it. It's for you to unravel and marvel and wonder as you stare at the pieces in your hands, wondering how you could've missed how they all fit together. It's for me to abide with you, and listen, and comfort, and take pain in your constant turning back of the clock. If there's anything I could do for a fellow parent grieving, it would be first and foremost, to erase the guilt. To separate it from your problems, set it on fire, and watch the smoke drift away. To eliminate that one feeling that makes grieving so, so much worse.

Do you feel guilt regarding your baby(-ies) death(s)? How do you deal with it? What if anything makes you feel better about it, and can you envision a time in your future where you let it go?

Life's Leverage

It's a banner day at the new contributors page for Glow, and one that's been a very long time coming. It now features our first regular contributor who is a father -- please welcome Chris of Elm City Dad.

Chris, daddy to Silas Orion and husband to Lani, has a way of stating simply and beautifully how the world looks after babyloss. In doing so, he makes us all exhale a little and say Yes, yes. That's just how it is. And when we do that, we all feel a little more sane, a little more on-the-right-path. Which is exactly why we're all here. Please welcome Glow's first dad -- Chris, we're so honoured to have you here.

 

These days are brutal. They are less vividly awful than the first days and weeks and months after Silas Orion was born, but these days have a subtle ache and desperation that is deeper and more pervasive than the raw shock of his death. That experience was nearly impossible to comprehend and now, day by day, the specific truths of his absence are revealed in life-sized cascades of loss.

I don't just wake up anymore. I have to pry myself out of bed. I have to slit my eyes open with razors of truth and face the empty day as the pain bleeds away into the active motions of living. I manage to forget that I am wounded to my core sometimes. Sometimes I even have fun. Sometimes I just fake it real good.

Because that's what we do, right? We of this Terrible Tribe. We know things about the World that no one else understands. The depth of our pain is beyond fathoms or miles. Beyond lightyears. Our ache resonates in a space that is the size of an entire Universe.

It is the Universe that would have lived in each of our children's minds if they were here and we could hold them in our arms. If we could watch them grow and teach them about the beauty of the World, they, in turn, would show us everything we had forgotten about this amazing place.

There is a big difference between forgetting and learning, though. How do we hold on to the good that remains all around us while our guts trail behind us like a nauseous shadow? How did we come to this? This limbo? This World where everything is dangerous and uncertain and somehow still stunning? And how, while in this World, do we get up every fucking day and just go do shit that needs to get done?

I guess it's just more interesting to try to be strong and powerful than to just give in. At least it is for us, for now. We freak out and get pissed and cry and rage and then sometimes we laugh our asses off. An example would be sledding down the icy hill in New Hampshire this weekend where we zoomed into laughter and then nearly into the trees. Danger loomed, I felt it. At least we ran towards it knowing.

I see people all the time who don't believe that life can be terrible and I just want to shake them until they see. But that doesn't help anything. The only way to know this is to go through it, and it is nothing I would ever wish on anyone.

My wishes don't matter, though, that's obvious. Everyone will experience loss and pain and tragedy in their lives. We just happened to get shafted early and good. That is why it is so important to celebrate every joy and happiness and beauty that we can find in our daily lives and in our dreams.

Resentment and jealousy leave a stench on my soul that I loathe. I try to push those feelings into calm acceptance. This is the only life I get to lead, and I must do better now for Silas, too. I hold him in my heart every moment of the day, and when I see his stars above at night, I feel their distant heat on my cool winter skin.

I hold Lu's hand and we walk. We push nothing but we pull each other along and somehow have some fun on another brutal night. Today it was Guinness and a snowstorm. Tomorrow, who knows.

What do you do to get by? How do you live in this limbo of pain and hope and healing and rage?  What pries you out of bed?

glow in the woods awards: winter 2008-09

In her post Auld acquaintance, Erica of I Lost a World explores the babylost parent's re-entry into ordinary life. How do we accept the trudging-along of the everyday, unable to stop any clock, while honouring our missing child(ren)?

She writes: I used to worry that I might forget Teddy, that his memory might flee from me as I walk in the snow, as I decorate the Christmas tree, as I watch the birds at the bird feeder, as I go about the mundane comings and goings of my life, and this terrified me...

The sheer volume of nominations this season made it tough to recognize one -- especially with so many resonant posts. But Erica's lovely reflection stayed with us because of a certain permission she gave herself, all vividly sparked by the lyrics of a song we all know.

+ + +

The Glow in the Woods Awards are back after a reorganization and somewhat of a winter hiatus, and we're thrilled to have a wonderful array of reflections, rants and smiles for you. Now being awarded seasonally, the following nominations for Winter 2008-09 encompass posts from December, January and February -- and the Spring 2009 award (we'll remind you) will recognize the writing of March, April and May. To review all the winners so far, go here.

Nominate any time -- whenever you find a post that moves you, send it us. Thanks for continuing to share your memories as well as your steps forward.

Our glowing nominees for December, January and February, in random order:

B of Shifty Shadow for Bundle of absence
Kirstin of Two Little Birds, Two Little Beasts for Ellery and Olivia
Sally of Tuesday’s Hope for Why Tuesday’s Hope
Erica of I Lost a World for Grief kit
J of Tea & Sympathy for A good day
CLC of Please Give Me Back My Heart for Raising stillbirth awareness
Forever Loves for Samples
Alexa of Flotsam for Scattered
After Iris for Damned lies
Monique of Samuel Marc for Philadelphia bound
Barbara of Burble for Haunted
Sarah of Ezra's Space for Magical walk, Dreaming of babies and Ezra’s great uncle
Elm City Dad for Universal ache
Gal of Growing Inside for Releasing attachment and Just like that
Living a Charmed Life for What shock looks like

that which remains

There are changes afoot in the lineup at Glow, and it's a right and wonderful thing. The contributors page now features a new category called 'glow emeritus' for founding writers whose lives and hearts have gathered enough momentum to bring them to new places from which to reflect.

Two new voices are joining our conversation here and we're thrilled. Today we bring you the first -- the wonderful Gal of Growing Inside. Gal, mother to princess Dahlia and angelbaby Tikva, gives us words that twist the kaleidoscope of this new view, inspiring us to see new colour in this unbidden and often bewildering spiritbaby parenthood. Let's make space by the fire and give her a hearty welcome, for we're deeply grateful to have her -- and you -- here with us.

Gray hair has settled in at my temples, clearly here to stay. Lots of it and more every day.

When I wear my hair down, the grays don’t show. But that means I can’t wear my hair back, and I like wearing my hair back. Especially when my hair is long, and right now I want to grow my hair long again. It’s been almost two years since it’s been long and right now I’m feeling the need for that again. Probably because I look younger, softer with my hair long, and right now I could use some of the lightness that comes with youth.

I don’t feel young anymore, not after the past year.

When I look in the mirror, I am struck by what I see in the woman looking back at me. She looks familiar, I recognize her but she is also new to me. She looks and feels older. Her eyes carry more sadness. She feels more grounded. Her gaze is more serious, her soul more honest. Along with the grays in her hair, her skin carries more fine lines, her forehead wears those not-so-subtle-anymore wrinkles that aren’t just there for a moment following an expression.

When I do yoga, the skin of my belly after carrying two babies hangs more limply from my core. My small breasts hang a little lower from nursing Dahlia and pumping for Tikva. My thighs… well, they’re just my thighs, jiggly and stretchmarked and still not my favorite feature, but the only thighs I get, so I continue to direct love their way in spite of it all. My skin is the skin of a 37 year old woman who has gained and lost weight rapidly (stretch marks), has had psoriasis most of her life (crusty itchy flaky scalp), had acne in college and still gets a zit or two at least weekly (blemishes and bumps), had shingles (discolored scars where the skin is numb from nerve damage). I still keep my nails short, 33 years after I started biting them, and I chew on the inside of my lips when I’m nervous, bored or focused.

I am full of imperfections, and in that, I am perfectly human. Alive, fragile, nervous at times, relaxed at others. I’m not five years old like my Dahlia, robust, skin smooth as milk, unblemished except for the daily preschool owie, radiantly healthy, at the very beginning of it all. She’s not brand new, and in losing her sister, she has been through more life experience already than most children three times her age. But still, everything is so new. And when I look at her I glow, and I also envy her, just a little, because everything is ahead. She can choose any fork in the road. She has nothing yet that she wishes she could undo.

There is something else I see when I look in the mirror, or when I close my eyes and feel what’s inside me. Like the hairs at my temples, I see the gray in my soul. It’s by no means my entire spirit that is gray, but there are wisps of gray there. Like the gray hairs, I don’t think they will go away, and they certainly can’t be covered up with color from a box. I imagine that I was born with a soul filled with color, and along the way of my life, I added more shades of brightness to my palette, and also introduced white to soften the brightness and black to darken it. I’m not sure if every single one of our souls begins as a full palette of bright colors, but this is what I see when I think of myself at my beginning this time around.

The past year dumped a pretty hefty can of gray paint on my spirit, with some drops splattering to pepper my temples. The gray mixed with the colors that were there – deep red and purple and turquoise and bright orangey yellow. The colors are still there now, just more pale, more subdued. The red is now burnt orange and pink, the purple more lavender, the turquoise now the color of an almost-black sky, the yellow more of an almost-there gold, like that last ray of light just before the sun sets.

I’m more tired now, more weary, and unexpectedly more peaceful. More accepting of what is, less rebellious against what I can’t control. Older and wiser, maybe?

This is what remains now, after losing my daughter. This is what remains after my heart was cracked open from sorrow and also from love. After some of the luster of my existence seeped out of me into the soil between blades of grass at my feet, to mix once again into the core of the universe from whence I came.

With the blemishes on my body and spirit, I am still here. Still vital. Still very much alive. More deeply connected to others, certainly more deeply connected to my most essential self. I have for the most part, most of the time, sloughed off what I no longer need – anxious worry about things that don’t matter, energy extended toward people who make me feel bad and petty things that aren’t good for me, time wasted on anything that is not at its core about love, genuine connection and compassion.

What remains is rougher than before, and also more refined. It’s the core that has always been but which has lost its smooth protective casing and is now more visible, more bare, more vulnerable… but mostly, more pure.

I never expected I would be looking at this woman and she would be me. It’s taking me some time to get to know her, but I do like her. I wish she didn’t have to go through all she’s been through to get here, but I find her quite beautiful. Not in spite of it all, but because of it.

.::.

What remains for you – of you – after losing your baby? What do you see in the mirror? Are you different than before? How do you feel about you now? Do you like what you see?