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
Mar172009

the shape of grief

Upon Ferdinand's death was a big void. And I filled it with tears and words. I wrote and wrote and wrote, because I did not understand my grief and I had to figure it out.

There were many things repeated: the tears, the hollering, the pain, the hurt, the questions, the anger. Sometimes there were appreciation: gratitude, seeing the beauty.

But sometimes it seems my words were just not touching it, not describing the grief right. I really wanted to yell out to the world what it feels like, how it is, but it seems no matter how I string together the words, no matter how hard I contemplate the letters on my keyboard, there is a glass wall between me and grief. It seems I hold and cradle it, and I rock to sleep murmuring its name, yet it seems so intangible.

Then one day, my wonderful friend Leigh sent me this poem:

The Phoenix Again

On the ashes of this nest
Love wove with deathly fire
The phoenix takes its rest
Forgetting all desire.

After the flame, a pause,
After the pain, rebirth.
Obeying nature’s laws
The phoenix goes to earth.

You cannot call it old
You cannot call it young.
No phoenix can be told,
This is the end of the song.

It struggles now alone
Against death and self-doubt,
But underneath the bone
The wings are pushing out.

And one cold starry night
Whatever your belief
The phoenix will take flight
Over the seas of grief

To sing her thrilling song
To stars and waves and sky
For neither old nor young
The phoenix does not die.

~ May Sarton

and upon reading it, I broke down and cried. I realized that I have been trying to grope with the shape of grief, and perhaps denying what it was. The poem spoke to what I feared to face up to: I had died with my son.

And it spoke for what I desired: to live again.

Those words gave shape to my grief.

Often, it is when reading the blog of a fellow bereaved when I will chance upon a line that makes me say, or think, "Oh, my gosh, you just nailed it. You just said it for me, in a way more eloquent, and more beautiful, and more wide-eyed that I ever could."

Yet, it is not just the fellow bereaved who knew my grief, or who actively and compassionately sought to feel around this hole in my life, groping, tenderly touching, patiently trying to understand it all with me. At my Blessingway, organized by my two wonderful, incredibly awesome friends, a friend read the following poem during the session in which we all honor my son Ferdinand:

 

When in the paling darkness of the lonely dawn
you stretch out your arms for your baby in the bed,
I shall say, “Baby is not there!”–mother, I am going.

I shall become a delicate draught of air and caress you;
and I shall be ripples in the water when you bathe,
and kiss you and kiss you again.

In the gusty night when the rain patters on the leaves
you will hear my whisper in your bed,
and my laughter will flash with the lightning
through the open window into your room.

If you lie awake, thinking of your baby till late into the night,
I shall sing to you from the stars, “Sleep mother, sleep.”

On the straying moonbeams I shall steal over your bed,
and lie upon your bosom while you sleep.

I shall become a dream,
and through the little opening of your eyelids
I shall slip into the depths of your sleep;
and when you wake up and look round startled,
like a twinkling firefly I shall flit out into the darkness.

When, on the great festival of puja,
the neighbours’ children come and play about the house,
I shall melt into the music of the flute and throb in your heart all day.

Dear auntie will come with puja-presents and will ask,
“Where is our baby, sister?”
Mother, you will tell her softly,
“He is in the pupils of my eyes, he is in my body and in my soul.”

~ Rabindranath Tagore

Oh, how I trembled as those words left her lips. Those words made me realize how close my son is to me, and yet how far away he is. Those words reached deep and touched me where it is the most raw and most tender. My entire being shook, down to the very depth of my soul, because in those words, my grief had once again been given shape. Those words beautifully expressed my grief and longing. I read the poem many times over after the Blessingway and cried many good crys.

::::

How about you? How do you find shape to your grief?- thrugh your own writing, by reading? Do you have a poem that you return to often, be it for comfort, or just to give yourself permission to have a good, good cry?

Friday
Mar132009

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?

Monday
Mar092009

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.

Friday
Mar062009

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?

Tuesday
Mar032009

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?