thinking back, looking forward

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It was a year ago this week that we began what would end up being a weeklong stay on the cardiac and then ICU wards at the children's hospital. In my mind's eye the memory is seen from a point of view over my shoulder, blurry as though through a filtered lens, all mottled edges and underwater sounds.

The brunette receptionist.

Being buzzed in.

The nurse I ignored as she greeted me, thinking she couldn't be old enough to know a thing.

Me holding tight, one hand held protectively against the back of Sadie's head, the other under her tiny padded bum.

My utter disbelief that we were there to begin with.

Why did they know who we were? Why were they expecting us?

Of course, the emergency room doctor at our local hospital had called ahead. She had already sent me home to pack a bag and call my husband before arranging for an ambulance to bring us across the city. She understood long before we left that the size of her heart made Sadie a very sick little girl.

There was a bed waiting for us. I distinctly remember feeling panic rise in my chest over not understanding what anyone was saying. I didn't want to take her out of her sling to hand her over to anyone. The strongest bond she and I formed over her six short weeks on earth was when I held her, cheek nuzzled to my neck. She was soothed instantly by it. It made me understand what it meant to be willing to give your life for another’s. I don’t have to explain to any of you the depth of devotion one feels toward their child. The strongest love that exists, full stop.

The walls were painted a vivid yellow; the enormous privacy curtains around each bed pumpkin orange. They were such happy colours to use as the backdrop to a thousand layers and personal brands of fear, doubt, and confusion. By mid afternoon they cast a warm glow on one’s skin when the sun shone through the wall of windows at the end of the ward. As though the fiery determination of all of those terrified parents was burning from their insides out as they learned to administer meds and monitor heart rates.

Shortly after arriving we met the specialists who would diagnose her Cardiomyopathy and tell us how rare and difficult it typically proved for infants. I was knocked out of my daze into the present, struggling to comprehend his intricate explanation of how a healthy heart works versus how our daughter’s did. I slowly understood that I needed to think of her as a ‘Heart Baby’ and what that meant to our future. I began to write stories in my head to her. All of which included how to explain her special circumstances, in which her special heart needed extra special care, because she was different from other people in a very special way.

One morning, for the first time, she looked right at me as I leaned over her hospital bed and smiled the most beautiful smile in history. Machines beeped and children cried and she sealed her spot as the love of my life.

A week later we would watch a team of intensive care doctors try in vain to save her life.

Neither of us has been the same since, in too many ways to mention. But together we're so much stronger than apart.

.::.

I told my husband months ago that I wanted very much to escape from our lives on March 31st. I didn’t want to have to face anyone else but the one who understands what is happening in my heart. He understands that if anything, a year is but a minute when it comes to grief.

The difference between today and a year ago is not that the pain of our lost girl has diminished. It has only changed. Morphing from a life size mask to become an inky black fragment of my shadow. Always there and forever a part of me, but not the first thing you’ll see when you meet me. Sadie would have wanted me to take the mask off. I am still her mother. I am still me.

Next Tuesday, on the morning that will mark a year since we lost her, I will wake up early beside the man I love and watch the sunrise. We’ll have breakfast on the roof of our riad in the heart of Marrakech. Then we will travel to the Atlas Mountains with the solitary goal of drinking in the natural beauty of the exotic Moroccan landscape. I want to spend our time walking by his side, exploring the medina together. Breathing in the scents of spice and soaking up the turquoise sky. Losing ourselves in the city described as one that time has forgotten. All that matters is that I will be far away with him, remembering her.

.:.

How did you spend the first anniversary of your child's death, or how do you intend to?

anything is possible

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This afternoon I spontaneously took Dahlia to the de Young Museum in Golden Gate Park. They’re having a weeklong exhibit called Bouquets to Art, and boy was it gorgeous. As if the museum wasn’t beautiful enough, this week it is adorned with flower arrangements created to depict or appreciate different works of art throughout the place. And… I’d forgotten the two traveling exhibits that are currently there: Andy Warhol and Yves St. Laurent. Talk about eye candy… and color!

Someone recommended to me a few months ago, “Go look at art. Walk in a park surrounded by flowers. Go see something beautiful.” They were right…

Today I fed my soul.

Today I refilled my leaky well.

Today I stroked my tired heart with softness and vibrancy and beauty.

Today I sat on a cushioned couch under a disco ball, watching Dahlia skip and dance and hop among the moving lights and shapes that circled the floor. As if she were a work of art herself, an ever-changing statue in motion. A dancer. A happy child simply playing. Making others around her smile. Filling me up.

We flitted about, surrounded by mannequins dressed in Yves St. Laurent gowns, and Dahlia pointed at each one and said, “Mommy, this one’s me and this one’s you. This one’s you and this one’s me. Look, Mommy… Wow! This one’s my favorite…” Delicious. The bright colors, the sparkles, the eccentricity of exaggeration, just for the sheer beauty of it.

Today I loved my daughters, the vibrant living one dancing before me, and the spirit one whom Dahlia said she saw in the mist that was watering the grass outside. “There’s Tikva!” I loved them both from a bright and full place within me.

And I thought about possibility – the word I have been swishing around in my mouth for a while. Surrounded by all that color, all that imagination, all that life – however fleeting… there’s a reason the flower exhibit only lasts a week – I was able to feel the possibility of what is ahead with greater depth than before.

Because if a person can make art so bright, so gorgeous, isn’t anything possible?

If a child can be born as vibrant as Dahlia, or as fragile as Tikva, isn’t anything possible?

If we can move halfway around the world to try with all our hearts to help our baby live, is there anything we can’t do? If Tikva chose me as her Mama, how can my life be without meaning?

Possibility is tasty.

I have always been an optimist, even in my darkest times. I have had more hard times than many in my 37 years, so my eternal optimism sometimes surprises me. I must have been born this way, it just seems to be my nature – my spirit is a positive one. Maybe I just learned early on that if it’s possible to feel really bad, it must be possible to feel really good, too. I’ve always believed that you have to go through it to get through it. Maybe it’s true that knowing deep sorrow is the only real way of glimpsing profound joy. I don’t know… Maybe it’s not important to understand why the glass is half full through my eyes, but rather to be thankful for that part of who I am.

But back to possibility…

How do I reconnect with that sensation after so much possibility has been lost? How do I trust the possibility of happiness, fulfillment, even hope… after so much has been taken away? After so much letting go? How do I hold the likely possibility that I will one day birth and hold another healthy living child, and that it will be easy and smooth and real?

How?

I just do. Every day I make that choice. Every day, even when I’m not feeling it deep inside – and I have plenty of those days, too – I am choosing possibility. I’ve learned in my later thirties that I can actually choose what I focus on, that I am capable of readjusting my lens if what it is focused on isn’t making me feel good. It doesn’t always work perfectly, but the intention is there. Not an intention to always feel good – because sometimes I just need to cry and feel like crap. But a desire to remember that possibility is always there.

Before she was born and during her very short life, Tikva became such a symbol of hope, not just for me and my family but for so many others who followed her journey. Since her journey took her to another realm of existence, I have asked myself often, “How do I hold onto hope when hope has been lost? And how do I build new hope, new promise, new possibility?”

The thing is, possibility is always there, and hope is a thing with shallow roots but a powerful desire, always seeking to be replanted, to rise back up through the soil towards the moisture and the light. Towards beauty. Towards possibility. Towards love.

I have to admit that I didn’t find possibility at the museum. I actually went there already feeling it deep inside me. My eyes were open to seeing it, and there it was. The magic I encountered there reaffirmed promise, gave me permission to hope, showed me proof that more beauty is possible. And I was reminded of the incredible beauty that exists in the very short life of my little girl. I stood before a soft all-white arrangement of flowers and loved it completely because it reminded me of Tikva.

And Dahlia pointed at a stem of orchids hanging down from it and said, “That flower. That’s Tikva.”

Even though she’s gone, she’s never really gone. For me, Tikva will forever be proof that anything is possible. Not because she overcame the greatest odds and lived a long healthy life, but because she was powerful enough to teach me hope and possibility.

And the deepest love imaginable.

.::.

How do you hold possibility? Where does it hide after the loss of your baby(ies)? Where do you find it? 

the shape of grief

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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?

Waiting to exhale

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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

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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.