Infuriating

Disclaimer: This has absolutely nothing to do with babies or anything profound, but it is important and about our health, so I wanted to share it as widely as possible. Please take a minute to read it and share the link to the article with others if you feel so inclined.

Love, Thoughts and Prayers

(Updated 1/26/09)

I just added the following text to the right-hand section of my blog, about the section at the very bottom of the page requesting loving thoughts and prayers for people in need:

If you scroll down to the very bottom of this page, you'll find a list of people in need of loving thoughts and prayers of hope. I will note the date of the latest update here. Please visit this section regularly and share your love and hope.

In the words of my sweet husband, "We are all made of the same stuff as sunshine," and we are all one, in this together. Thank you for extending your hearts in infinite ways.

(You'll notice that some people I had listed before are no longer here. This is because I have added the links to their blogs under "Words About Loving, Losing and Healing" so you can check in with them directly.)

Post Script

When I look back on the past year, I don't feel horror.
I feel sadness, but even that isn't the overarching emotion.
Mostly, I feel wonder, disbelief, and the deepest kind of love and compassion.
I have grown in ways I never imagined possible.
I like the person I am now better than the person I was before Tikva.
That is one of her gifts.
I never knew I could love like I loved, like I continue to love her.
Unconditionally.
I didn't stop loving her when I learned that she might not make it...
I loved her more.
I didn't shut down...
I cracked open.
I loved my Baby Girl from depths I never knew were within me,
Depths that remind me that inside me I carry the entire Universe that surrounds me.
I try each day to love Dahlia and Dave like that.
Not always easy, but a good practice.
I have to love myself unconditionally too.
Remember to be gentle and patient with myself.

I looked again at the website where I found that photo of the blond woman holding the little African baby.
It's from a humanitarian organization in Slovakia.
This struck me as deeply beautiful,
The idea of a young woman from a part of the world that has known its own conflict and war
Traveling to remote parts of the world to care for children in need.
The idea of the wounded healer,
The heart made more deeply compassionate from experience,
That the suffering of one person is the suffering of all of us
Because we are all interconnected.

She holds that precious little broken one like I held Tikva
Against my heart.
Pure comfort,
Pure love.
I can't get that image out of my mind.
It doesn't make me shudder, though...
It makes my heart overflow with love
And hope for humankind.

It's 1/23 today.
1 2 3
1. On your mark...
2. Get set...
3. Go!
In that moment that stood still right after Dr. Kreisberg said, There's a problem,
In that space that grew hollow surrounded by the vastness of space all around,
It was as if a silent voice was asking,
Are you ready?
1...2...3...Go!
1 2 3
1/23/08

I keep asking myself if there is something I want to say to Tikva today
On this day that began our story of her,
This day when her existence changed us forever.
It's a strange anniversary, the day we learned our daughter wasn't well.
The day we learned,
Before she was even born,
That she might die.

On January 23, 2070, when I am 99,
I know that I will be able to feel myself in that room at the doctor's office in Jerusalem
As if I were right there all over again.
I know that I will remember that moment when I thought about the dream from a week before
When Tikva told me her name,
And how this gave me the first glimmer of Hope to plant and grow.

Thank you, my darling sweet Tikva.
Thank you for choosing me to be your Mama
Even though it means I cannot hold you in my arms again.
Thank you for incarnating, for putting up such a mighty fight
To exist, in your precious gorgeous broken little body
So that I could know you in this way
Before learning to know you in a new way.
Thank you for that day your little warm hand found its way down my shirt to the space in between my breasts.
Thank you for touching my heart.
Thank you for cracking open my heart.
Thank you for reaching deep inside my heart and drawing out this love.
Thank you for teaching me how to love like this.
Thank you for letting me love you.

I miss you, Baby Girl.
I love you forever.

Yearning and Surrender

A voice asks, "Do you associate a certain place with your lost child, be it a city, home, or otherwise? How has that relationship changed since your loss?"
Jerusalem, I reply. Jerusalem is that place.
I didn't lose my child in Jerusalem,
But that is where I left behind the promise that she would be born healthy and well
And for sure live a long life.

Here is the backstory of the unfolding that begun exactly a year ago today.

I left behind a lot of promises in Jerusalem,
In spite of the miscarriage I had had less than a year before,
In spite of the many other things that haven't gone right in my 37 years.
I never knew, really knew, that I - me - could have a baby who was born so sick,
Her body so incompatible with life,
With incarnating for too long in the physical form.

The fate of my baby's life didn't change a year ago in that ultrasound office in a quiet residential office on the outskirts of Jerusalem.
Her fate was already written, eons before she was conceived.
My fate didn't change either, that was already written too.
But my life, my sense of what is and what isn't, changed in that moment...
After I took in those words, There's a problem;
After my mind froze, my heart froze, and I grasped Dave's hand tight;
After I looked down at Dahlia playing on the floor, wondering if she was taking in what was happening;
Everything changed. And it doesn't change back.

My relationship with Jerusalem didn't change, though.
I already didn't feel good there.
I was born in Jerusalem, left as a toddler.
But something about it made me feel conflicted that I didn't love it,
That I felt anything but a deep connection to my birthplace,
Conflicted in ways I didn't understand before
And still don't really understand now.

Could I have sensed all these years that my life would change forever there so many years after I was born?
Is that why I felt conflicted?
If all time exists at once, maybe it's possible that something in me knew.
Not all conflicts need to be resolved.
I've made my peace with the idea that I'll probably never make my peace with Jerusalem.
(I'm certainly not alone.)

I had not lived there since toddlerhood, only visited,
And it's very different living there, harder.
I went reluctantly, but willingly
To support my husband's dream of becoming a rabbi.
Most people knew I didn't really want to be there
And I found it hard to ease in, settle in, make the best of it.
But I started to, for about a month after the initial transition.
We decided to get pregnant, and that gave me something I cared about to focus on.
Then I got shingles and I hated it there even more.
But the shingles passed and I started to feel okay once more
For about a month
Until January 23rd.

I couldn't leave fast enough
For the comfort of home,
Of family and friends,
Of the familiar,
Of some semblance of safety amid a brewing storm,
To the familiarity of home in San Francisco.

A while ago, I wanted to write a post titled, Experience and Spirit
Inspired by a conversation Dave and I had about the difference between Tikva the spirit and the experience of her life.
Now I think about that each time I drive by the hospital and look up at those three ICN windows on the 15th floor.
When I look at those windows, I am connecting with the experience,
Knowing full well that she is not there,
That even her story is only a very small part of her.
When I look at the birds flying in the sky that shelters me,
Feel the warm salt scented wind on my face,
I am connecting with Tikva's spirit.

Each time I breathe I convene with Tikva.
And right now, in tears, too.

At the kitchen table two nights ago,
I cried as Dave held me from across the table with the gentle sweetness of his sparkly eyes.
He heard my yearning, my fear.
Sometimes I feel like Tikva was never really alive.

When Kate writes the words of her Liam, I feel that they are Tikva's too:
Well, this is strange. I was there, and now here. Why? I’ll stay then, for a little while. For my mama, my dada, my brother, my twin. To show them how strong I would have been, how inventive, how patient. To give them smiles, to help them to know me. Once I do all that, then I can go. Not in an operating room, cold and surrounded by strangers. On my mama’s heart, surrounded by peace and light and love.

I look at pictures of my Baby Girl attached to all those machines,
Ventilator breathing for her,
Oxygen helping her breathe on her own for a while,
The look in her eyes,
And she looks only a little bit alive.
That's why I wonder sometimes if she really ever was,
Even though I held her, I felt her softness, the warmth of her skin, her beating heart, the look of her eyes reaching into mine.

And that's what we talked about the other night at the kitchen table...
What it really means to be alive.
If we always are and always continue to be spirit
Then why do we incarnate?
Why do I yearn so much to make another baby,
To mother again,
To create the physical manifestation of life?

Because it's fun! replies my incredible partner.
Because you love creating, you love being pregnant, you love birthing, you love mothering, caring, nurturing.
Because you are human and yearning is what we humans do.
We are driven by our desire.

Yesterday at work I was doing some internet research on AIDS.
I found this photo, and my heart leapt. LEAPT!


So I stopped what I was doing, enlarged the image, and just looked at it...
At the angelic love in the woman's face,
Her arms delicately but with no hesitation embracing this tiny fragile child,
How young she is...
At the child's tiny little hands touching her breast and the child's own heart,
The peace of a sleeping face amid the struggle of a ravaging illness.
I want that! My heart lept.
I want to do that!

I kept sitting, looking at this image in my corner of the office,
Still and quiet, no tears.
What is it that you want, Gal? What do you yearn for?
To nurture even more.
To hold another small child in my arms,
At my breast.
To have a big family of children all around me,
Biological and adopted.
To travel to the corners of the world as a nurse and help children,
Give comfort and love.
There is just too much love inside me to keep it to myself.
I have so much more to do with it.
That is why I incarnated.
I want to keep doing what I came here to do!

That's what is underneath the fear: that yearning.
What if I don't get to do it again?
Did I start too late?
Can my body handle world travel to remote places with scary bacteria?
How will my yearning unfold hand in hand with my husband's own desires?
How can I have so much overflowing love to give and still lose my cool on a regular basis with my healthy, living daughter?

There's a voice that has been whispering one word to me all week: Surrender.
Because I don't have to know everything about how and what if right now.
Because hope and faith are still available, accessible,
Hand in hand with the possibility of letting go of attachment to outcome.
Because it's okay to feel sucker punched by life
And still carry on
With hope in one pocket and doubt in the other.
How else can I be expected to feel right now
Today
One year later?

more

Clouds of Light

from The Parent's Tao Te Ching, A New Interpretation by William Martin

(Thank you, Stevie D)

They look so small and frail
but they are so great and magnificent.
They are born of the same womb
that birthed the cosmos
and knitted together the galaxies.

If you could see them as they truly are,
you would be astounded.
You would see not little children,
but dancing clouds of light,
energy in motion,
swimming in an ocean of love.

They are so much more
than what you see.
As are you.

The Unexpected

I drove home today past Congregation Beth Sholom, where they were holding the funeral for their beloved Rabbi Alan Lew.
Rabbi Lew died unexpectedly while jogging on Monday,
Following his morning prayers and meditation.
He was 65.

All along the drive towards my house, policemen were waiting at each intersection for the funeral proceedings to make their way down 19th Avenue towards Colma, home of the Bay Area's cemeteries.
That's where my grandmother is buried, and all of Dave's deceased relatives.
And my Baby Girl.

I thought about Rabbi Aryeh Hirschfield from Oregon, who died unexpectedly on Tuesday last week
While snorkeling in Mexico, where he was with family to celebrate his son's wedding.
Just like that... he never made it back to shore.
I'm not sure what happened to the wedding plans.
He was also 65.

It just gets me
In the deepest part of my core.
How unexpected it all is,
How little we can know beyond the moment we are actually in.

Right now is what I have, what I know.
I sit at the red table in the breakfast nook writing on my blog.

I drove slowly, safely home; there was no need to hurry.
I let other drivers into my lane if they wanted to come in ahead of me.
Why not? What if this is one of the last moments I get in this life?
Wouldn't I want to spend it being patient, calm and generous,
With myself and others,
Taking my time driving through the sunshine on this unseasonably warm day?
Wouldn't I be glad I had splurged on the best ingredients for the lasagna Dahlia and I are making tomorrow?

We had a staff meeting at work today and I thought about how I was spending my time in that moment.
If I knew I only had a year to live, would I choose to spend 20 hours a week at my job, in staff meetings?
There was a young woman working at the checkout counter at the grocery store wearing a wig.
I wondered if maybe she was battling cancer.
Would she want to work at the checkout counter if she knew how much longer she had?
Would she necessarily have a choice, if it was her job that provided her medical benefits for chemotherapy?
Or maybe she just felt like wearing a wig that day and I was overthinking the whole thing.

I'm like that, I notice things, especially people, and I'm always inventing a story about what I see.

It's hard to live completely in the present
While also having to plan at least a little bit for the future.
If I could do anything I wanted, I would spend my time writing and making art,
Playing with my daughter and husband and learning to cook amazing food and bake incredible desserts.
I would sleep more, read more, spend more time outside,
Spend more time in Mexico and Hawaii.

It feels good to know that when I'm at my job I am helping to support our family
And the good work of a solid social service organization.
I am helping to build a nest egg so that when we get to Cincinnati next summer
And neither of us has a job, we'll be alright.
But even that feels strange, because how can we know - really - what next summer has in store?
People ask me a lot what our plans are, if Dave is going back to rabbinical school and when.
All I can say with certainty is that Cincinnati mid-summer is where our ship is pointed,
And that it's headed there so that my patient husband can continue his studies and get closer to practicing as a rabbi.
Beyond that, I really can't say
Because I really don't know.

I know only that life can change completely on a dime. Completely.

I had a moment while driving when it just came over me that Tikva's diaphragm never closed up when she was about 8-10 weeks inside me,
And because of that her upper liver and other organs came up into her chest cavity and her lungs didn't get to develop enough for her to survive.
It was one of those, "Oh-My-God!" moments when I just can't believe it happened - really truly happened - to my little girl.
And that it's all already happened and in the past now.
I've known this fact since January 23, 2007, but I still have moments like this when it just washes over me like a huge unexpected wave hitting shore during an otherwise calm afternoon on the beach
(In Mexico or Hawaii).
It's just so incredibly precarious sometimes, this thing called life.
A handful of cells don't grow right and an entire destiny is changed...
Many destinies.

A man my father's age goes out for a jog, calm as a tranquil lake, and dies.
I wonder if something told him before it happened
And how he encountered the actual moment of his spirit's passing.
How will I when it is my time?
A man goes snorkeling with family during a festive vacation and never returns.
The occasion of his son's wedding forever changed,
The father's passing forever a part of the couple's story.
I wonder if he had a sense it would happen in that moment,
What it's like for your soul to leave your body while the body is in water
Communing with the fish and undersea world.

It's hardly necessary to say that I cry on a dime these days,
Especially when I hear that someone has died or is sick.
Today at our staff meeting someone told a story about a family the agency is helping,
A family sitting by their twenty year old daughter's bedside as she lives out her last days
With final stage cancer.
Twenty years old.
The person talking had tears in her eyes, which is another thing that always gets me,
And I was so close to getting up and going outside to catch my breath.
Part of me wanted to tell everyone around the table about the past year of my life,
Which I didn't, because it wasn't the appropriate thing to do in that moment.
(I imagined the silence that would take over the room if I did.)
I took a deep breath and continued biting my nails,
And was the first to leave the room and return to the privacy of my desk when the meeting was over.

I used to be someone who liked to shmooze with coworkers after meetings.

Up and Down and All Around

Dahlia lost her first tooth today...
It lies underneath her pillow waiting for the tooth fairy.

She also had a major post-birthday crash today,
Probably from the two cupcakes she ate yesterday
Which were gorgeously covered in frosting and candy to make cupcake people
(Homemade by Auntie Sharon)
Following ice cream for breakfast,
Following cake and ice cream at her party on Sunday.
And from the let-down of normal life after all the excitement.
She's sound asleep now, thankfully.

I'm exhausted.
It takes a lot of energy helping your child through a sugar party hangover meltdown.
Sweet kid... I can't believe she's already lost a tooth.

I saw something today that gave me pause
And reaffirmed just how important it is not to compare,
To keep my eyes on my own paper.
A little girl, maybe 3 or 4 years old
Waiting for her very young and very thin mom to take the wrapper off a Drumstik ice cream cone.
Thin young mom hands cute little girl the ice cream.
Young dad comes out of the corner store with a bag of Ruffles potato chips for himself
And a box of Chips Ahoy cookies for young mom.
She takes the box, removes the bag of cookies from inside, and throws the box away,
Clearly intending to eat all of them while they walk off together.
How is it that they can eat all that sugar, all that crap, and they're fine?
How is it that she stays so thin eating all those cookies
And her little girl isn't overweight or bouncing off the walls throwing a tantrum?
How is it that they're healthy, alive
And my baby was born so sick,
Growing in my body while I took such caution about what I ate?
What is that about?

It's not about me... not about my Baby Girl.
They're them. I'm me. She's her.
There's no rhyme or reason to it because there is no connection.
Two different families, different lives, different journeys, different paths.
That's all.
Gave me pause, though.

I've had two conversations at work recently with two people,
People who now know about Tikva.
That makes seven people in all.
Last week, the receptionist asked what I'd done on Friday,
And I told her I was with a friend making a quilt.
She asked who the quilt was for
For my Baby Girl who had lived for just two months last summer.
Silence... not a harsh silence, but a silence from someone who doesn't know how to respond.

Yesterday in the staff kitchen, I see a woman who runs the food pantry,
Who knows I was pregnant because I have been donating extra milk I still get free from the Women, Infants and Children program.
She asked about my weekend and I said we were celebrating my daughter's fifth birthday.
Then she asks, "And you have a baby, right?"
I did have a baby. She lived for just two months last summer.
"Oh, I'm so sorry."
Shock, silence... a gentle caring silence, she doesn't know how to respond.
I feel like I need to make it easier for her
And I continue on about how great it's been to get free milk, cheese and eggs from this government program,
And how they let me borrow a breast pump when my daughter was in the hospital.

Now I am just a little less anonymous.
Now maybe they remember my Baby Girl when they see me in the halls.
Or maybe they forget eventually.
It doesn't matter,
It still feels good to talk about her
Even if it makes me sad
And makes them quiet.
What I realized is that it's impossible for me not to tell them about Tikva
If it comes up that I had a baby last summer.
Impossible unless I lie, and I don't want to lie.
Not about Tikva.

The Breath of New Hope

from "Wings of Joy" by Sri Chinmoy

Day and night I shall swim
In the sweetness - hope - river.

May my mind every morning become
As beautiful as hope - dawn - rays

Peace begins
When expectation ends.

Each sacred hope
Is a blessingful gift
From Heaven's heart.

Hope abides; therefore I abide.
Countless frustrations have not cowed me.
I am still alive, vibrant with life.
The black cloud will disappear,
The morning sun will appear once again
In all its supernal glory.

My dear friend Michelle read us this poem when we had Tikva's blessing gathering last May before her birth.
I found it yesterday when I was putting some pictures Dahlia had drawn into my box of Tikva treasures.
I feel hope in the air right now, and wanted to share it,
Especially with my fellow babylost mamas.

Five Years Ago

My Dear Sweet Precious Dahlia,

Today you are five years old.
I can't believe it... five years old.
At this time five years ago, I had been in labor with you for more than 24 hours.
Miyoko was coming over to put needles in my back in the hope of alleviating the pain.
A few hours later, I would decide to go to the hospital for an epidural.
At 7:36 PM, attended by our midwives while the doctor stood back and watched,
You came out easily, powerfully,
The fist that had been next to your left cheek in the birth canal was the second thing to come out after your head.
I'm here! You said to us.
You are here!
We welcomed you joyously,
Our first child.


It's hard to believe that five years have gone by.
But at the same time, I feel like you have earned your age.
From the beginning, you have stepped completely into your life,
Unapologetically, entirely yourself, strong and radiant.
When you were little I called you Bright Light,
And that you continue to be.
You light up a room, you make people smile.
In your own words, you make people really happy.

This past year, your fifth year, you have stepped up in unimaginable ways.
Life and your family have called on you to be flexible, open, forgiving, easygoing,
And so, so loving, so unconditionally loving.
You have responded with a resounding, Yes!
You have said, Okay, I will.
And you have.
You have loved your fragile little sister
And you continue to love her with your most special brand of sweetness.
You feel her in your heart, see her in the little birds outside your window,
You miss her sometimes, and you share your feelings with us.

Thank you for your maturity, your understanding, your patience.
Thank you for all you teach me about love, about what is important.
I knew from the very beginning of your life that you had come to be my greatest teacher
And you are.

You are amazing, Dahlia Aloisia.
You are beautiful, radiant, gracious,
A Bright Light like no other.
I love you, my Little Lady,
My Big Girl...

Happy Birthday

Five Months

It's been five months since Tikva died... almost to the minute.
Five months.
Long time
Short time

The date crept up on me today,
Midmorning while I was at work
And realized all of a sudden that it was the 7th.

No wonder I cried on my way to work this morning
And sat in my car for a while as the tears ran down,
Watching two seagulls flying in the sky
To the classical music on the radio.

I went to the mikva tonight
For the first time since before my second pregnancy
A little less than two years ago.

So strange how time moves,
How much has happened in two years.

I'll write more tomorrow.
I'm tired now and need to get some sleep.

Five months...
So strange how time moves.

Tomorrow

Tomorrow I will try not to raise my voice at Dahlia, even when she yells at me.
It's hard to care for your living child when your other child has died.
Yes, I know how lucky I am to have a living child.
That doesn't take away from the loss of Tikva.

Tomorrow I will try to get more comfortable with the fears that are coming up inside, listen to what they need me to hear.
It's not easy to calmly embrace the possibility of a third child when your second child has died.
Tikva's journey already has an impact on her future sibling's destiny.
They are already connected in a profound way.

Tomorrow I will see if there is a way to not feel like a different person when I am at work.
It's strange to be surrounded by people who have no idea I carry a huge hole in my heart.
How is it that they can't see even a hint of it?
Am I hiding it?

Tomorrow I will trust my body's ability to be strong, healthy, and a safe place for gestation.
I notice myself starting to worry about every little thing I eat,
Whether I should use the microwave at work,
What it means that my skin is zitty after my period.
I know when I worry like this, it means fear is coming up.

Tomorrow I will simply notice...
All that comes
Without trying to fix it, resolve it,
Conveniently wrap it all up.

Just notice
Gently.