Year End

I've been waiting for something profound to come to me to write on my blog
But nothing's coming, and yet I feel compelled to write at least a few lines before 2009.
I will never forget 2008 - never forget it in a way unlike any year I have ever remembered.
I think the numbers 2-0-0-8 will always bring a shiver up my spine,
A tear to my eye,
And a smile even for being the year I knew my Tikva.

I miss her a lot right now,
So many tears have traveled down my cheeks the past few days.
I want to connect with Tikva the spirit,
But right now I am just missing my Baby Girl.
A second anniversary around Tikva's life is ahead...
January 23, the day of her fateful ultrasound.
(The first anniversary was Rosh Hashanah, when she was conceived.)
Then February 13, when we returned to the Bay Area from Israel.
Then June 10, when she was born.
Then June 17, the day of her surgery and my birthday.
And August 7, the day she breathed her first and last breaths of fresh air.

But I'm getting ahead of myself...
For now, it's just December 31, 2008,
The last day of the hardest and saddest year of my life,
And the year most filled with hope and wonder and mystery and love
Ever.

Tonight at midnight is the 8th anniversary of the moment Dave and I came together as a couple...
In a way, the story of Tikva actually begins there.
Or maybe it began the days Dave and I were born.
Or maybe it was all preordained by a force so much bigger than us when the Universe was created
Billions of years ago.

May we all be blessed with hope, love, serenity, healing and abundance in 2009.

Small Magic

Images in my mind from the past week...
In no particular order:

A local department store going out of business.
I go after work one day to see if I can find any sweatshirts for Dahlia
Amid the picked-over merchandise.
I wander for a while in the infant-toddler section
Like a ghost yearning to return to another plane
Of existence.
Nobody sees me...
Nobody there sees ME,
The real me whose arms could almost be holding Tikva
As I shop for her in my imagination.
I picture what she would look like in things I see,
A pink, orange and yellow dress she'd look so beautiful in
With her golden skin and dark hair.
Winnie the Pooh pajamas,
Tiny jeans.
So pretty, my Baby Girl... I walk on.

I find two sweatshirts and a shirt for Dahlia.
I get in line to pay and almost get into it with a woman in line
About whose turn it is next.
I have no energy to fight with her
But I go to the counter first,
Thinking, Leave me alone. I've had a shitty year.
She has no idea, just thinks I'm a bitch.
I walk out like a ghost.

I had a dream one night about Tikva.
In my dream I could picture her toddling around.
She was so pretty, so pretty.
White dress, dark skin, black hair, black eyes, big happy smile, dancing.
I knew in the dream that I was just imagining her that old...
Then... Tikva was still an infant
And still alive in the ICN.
We felt so tired with the back and forth, back and forth to and from the ICN.
We couldn't take the endless feeling of it all,
The unknowns.
We asked them to move our daughter to another hospital,
And to not tell us where she was.
We thought it would be easier if we just let her go there,
Trusted them,
And let it go,
Let her go.
But it wasn't...
I couldn't handle not knowing - ever - if she lived or died.
So I asked them to tell me where she was
So I could go to her
And be with her no matter what.

Tuesday night, a Hanukkah party with our Bay Area Jewish community,
People we have known for years,
Who know us deeply, love us unconditionally.
It is comforting to be in the fold of their love,
Of each other's love,
Surrounded by the delicious smell of latkes frying in oil,
Inescapable.
I reconnect with girlfriends I haven't seen in months.
People tell me, (a hint of surprise in their voice?) You look good.
I definitely don't feel invisible.
I am energized.
And when I get home, I'm exhausted.
Connection is draining these days even while it charges me.
I find that I don't realize it in the moment,
Probably because I am so nurtured by it.
But afterwards I feel it, that desire to do less socially,
Especially in large groups,
To conserve my energy for myself,
Especially in wintertime,
Especially now that I have to give some of my energy to others at work.

I overheard a conversation somewhere else that pissed me off.
It was two young women talking about nursing.
One had just started taking prerequisites to go back to school to become a nurse.
The other, who works in something completely unrelated to medical care,
Was telling her not to sell herself short and "just become a nurse"
When in a few extra years of school she could become a doctor.
I hate conversations like that
Where people talk with great conviction about something they know absolutely nothing about.
As if nursing and doctoring are anything close to the same kind of work,
One just a mediocre, unmotivated version of the other.
As if you can even become a doctor in "just a few extra years."
(Has this person been through the 10+ years of medical education I have seen friends go through?)
But more importantly: As if you are selling yourself short "just" becoming a nurse.
Instead of screaming at her, Do you have any idea what nurses really do, how important they are?
I left the room.

I read this the other day,
This babylost father said it all
About God
So beautifully, so true to my heart.
I've thought a lot since about how much can go wrong when a baby is born,
If a baby lives to be born.
How come this is now my life,
My community?
It always will be...
At least I'm not here alone.

When I was at the candlelight ceremony at UCSF on the 14th,
I said to the nurse practitioner who heads the palliative care program,
(Maybe that's what I'll do when I become a nurse?)
It's striking how many of us there are,
I wish there were less of us here today.
I thought I saw a young boy I'd seen in the elevator to the 15th floor
Sometime in the summer when I was going to see Tikva.
He was there in the ICN visiting his baby sister.
When I saw the boy I thought was him at the ceremony,
I got so sad thinking that little girl didn't make it either.
Later I realized that it wasn't the same boy
Because his mother looked about 6 months pregnant
And the timing wouldn't have worked out for her to have had a brand new baby
In June, July or August.

June, July, August...
That wasn't so long ago
But it feels like another lifetime,
The one that changed me forever.
I don't know what to say about 2008
Except that I'm ready for it to end.
I no longer feel like I am leaving Tikva behind
If I leave this year with great relief.
It's not possible for me to leave Tikva behind,
It's just not.
And yet it's sad to feel that way about the year my daughter lived.
It's the only year I'll ever have with her,
The only one.

Dahlia played in the kids' room at the candlelighting afternoon
With the other kids who had lost siblings.
Dave and I spent an hour making scrapbooks and picture frames for Tikva's photos.
Then we went to the sharing stories workshop
And sat in a circle of family and friends of children who had lived challenging short lives and died too young.
The love of mothers and fathers and aunts and uncles and friends oozed from the circle.
One mother of a teenage daughter, the young girl a mother herself
To a baby born too small and sick to live for very long,
I will never forget hearing the older mother say about her daughter,
In going through her pains, in caring for her baby, she showed me a maturity I am deeply proud of.
A woman whose daughter died at a year and a half of a cancer that took her life in just three months
Coming to us to ask about our child and tell us about hers,
Still carrying so much grief over a year later...
How could she not?
Friends there to support moms and dads who had lost babies,
Apologizing if they had not been able to be more present when the baby had been alive.
A baby's uncle saying that his niece lives on through him,
That when he had held her she'd sensed the fear in his heart and cried.
They all wore t-shirts in honor of Princess Tanaya
Who lived for 10 months.
We met her parents in the parking garage afterwards...
Kinship.

I hugged Stephanie, the ICN social worker who had been there for us since I still carried Tikva.
We told each other we'd missed each other.
I told her she was smaller than I remembered her in my memories,
Probably because to me she felt so big,
Like a rock.
I found myself missing that place where everyone understands me
And I am not a ghost.
We sat together in the candlelighting,
A room full of ghosts no longer,
Seen, silent except to light a candle and say our children's names.
I lit our candle and Dave carried Dahlia as she said her sister's name in the microphone.
I watched in awe as Stephanie lit her candle for...
Probably more babies than I can imagine.
I was asked to read this standing in front of the candles.
I adored listening to a sweet man reading this.
The invitation and program from the candlelighting now go in Tikva's box.
The scrapbook is ready for the photos I ordered prints of online.
The picture frame Dave made is ready for a photo of Dahlia with Tikva
For the big sister to have in her room.

When I read that babylost father's blog post about God the other day,
I clicked around some of his other writings and found this blog
About a tiny little girl with a brain tumor
Working hard to get well at UCSF.
He doesn't live here, the babylost dad - he lives across the country.
Yet he's paying attention to someone way out here,
So close.

I know I'm not the only one who is so aware of how much struggle there is all around me.
I know I'm not the only one who has had a very sick child.
I know because it's part of the conversation these days,
Maybe because I'm older and I know more people with sick parents
Or sick partners
Or who are struggling themselves.
Maybe because I am more open now that I have lost in a way I had never lost before?
Maybe because I've always been hypersensitive to things around me,
Emotional things
And there is just a lot of pain in the world right now?
I don't know why
But I notice it.
And it does make me cry
And it does make me realize that it's probably not going to change back in the other direction in my awareness
Now that my eyes are wide open.
I'm not the only one thinking about all this...
How we are all interconnected,
All fragile,
All wondering, What is going on with us?

I open Tikva's jars and smell her lambie, her duckie, her blankie.
They still smell like her.
What is that?
Is that magic,
The way someone's smell remains?
Is that their soul,
So that when the soul leaves the body
There is no longer the person's smell on that body?
I smelled Tikva after she died and we were back upstairs in the ICN.
I smelled her in her neck, where she had always smelled most like her.
Her smell was gone.
I smelled the top of her head and there was just the faintest hint of her still there
As if her soul had left through the top of her head
And a tiny spark of it was still there
Barely.
There are kabalistic teachings that the soul leaves the body through the seventh chakra
At the top of the head
To return to God.

When I touched Dahlia's soft skin on her back yesterday,
I could feel Tikva,
Right back in the ICN where I had sat next to her,
My hand almost entirely across her soft warm back.
Mystifying, how both of my girls feel the same when I touch the back and front of their hearts.
What is that...
A shared family soul?

Last Friday afternoon, Dave and I went to see Milk at the Castro Theater.
I had one of those I love San Francisco because it's the funkiest place on earth moments I've been having a lot lately.
Moments that make me sad in advance at the idea of leaving here again come summer.
Moments that help me to relish living again in this special place
Even though I'm the ghost who isn't really supposed to be here now.
Dave and I met at the theater so I parked my car a few blocks away
And smiled inside (and probably outside too) as I walked by groups of
Handsome, proud, free and abundant gay men,
Holding hands, arm in arm.
What a tremendous place, this little hub unlike anywhere else in the world.
Men have been coming to the Castro, to San Francisco,
From all corners of the world and the country
To live freely as themselves for decades.
This place, this place where I walked to see a movie about a man who helped build the gay rights movement.
And I got to see it in the Castro Theater.
Because right now, San Francisco is where I live.

Dave went to the Hazon conference today.
Dahlia and I are spending the next four days together.
I'm at my best with Dahlia when I immerse myself completely in being with her
Undistracted.
Without planning much of the day,
We had a magical Christmas for two Jews who have no connection to the holiday.
We joined family at some friends' to prepare 56 meals for the homeless living in San Francisco's industrial district,
Too far from the soup kitchens and churches to travel for a hot Christmas dinner.
We drove from there through the empty streets of the Mission to Union Square
Where Dahlia spontaneously decided that we should try ice skating.
I haven't ice skated, I'm pretty sure, since I took lessons for about a year when I was 9 or 10
(I even convinced my mom I needed a white skating dress)
But strangely you don't forget how to ice skate any more than you forget how to ride a bike.
Dahlia was fearless, and found it amusing when she got wiggly and almost fell many times.
With every loop around she got better and better.
My little girl was ice skating...
I have these moments sometimes when I realize just how big she already is.
We oo'ed and aah'ed looking into the department store windows at the Christmas decorations
(Which this Jew secretly adores... all those sparkles and lights).
Then we found an open pastry store by the cable car stop and got day-old pastries
To take to the movie theater at the top of a beautifully lit empty shopping center.
Dahlia can sit through a movie now
As long as I let her be the wiggliest kid in the theater,
Today's restlessness compounded by the fact that her butt was wet from falling on the ice rink just before we left.
We went for Thai noodles after the movie
And made numbers and letters and shapes out of chopsticks.
Walking back through Union Square to our car,
We stumbled... of course... onto the giant menorah lighting that was just happening
In the shadow of the even more giant Christmas tree.
Jewish people holding candles of their own
And singing Hanukkah songs.
It was a completely besheret
Meant to be kind of day.


Happy Hannukah
Merry Christmas
May the new year ahead be peaceful
And full of small magic,
Light amid the darkest moments.

Love, Understanding and the Preciousness of Life

A dear friend sent me a link this afternoon to this piece from the NY Times parenting blog.
The piece includes a letter written by a father to his son, who died seven years ago of a rare genetic condition at the age of seven.
He was writing about the challenges of helping his younger son - who was only one when the older son died - remember his brother.
Needless to say I was in tears thinking about Dahlia
And the beautiful way in which she remembers her sister
Many times each day.

Before reading the letter, I clicked on a link at the very top of the piece,
To a very long NY Times Magazine article the same writer had published in 2001.
I spent most of an hour reading all 12 pages of the article,
Captivated on so many levels,
Hundreds of thoughts darting through my mind,
As many emotions making their way through my heart,
Some making their way to my tear ducts.

At its core, the article is about medical ethics,
About how far we are willing to go to save our very sick children.
Needless to say, this isn't the first time I have thought about this in relation to my own very sick child,
Especially in light of how far we traveled to try and save her.
But there was something else that really hit me on a profound level as I read:
The quotes from the parents of two terminally ill children
About parenting a sick child
And doing all you can to help them.
About what they needed from those around them.

On page 6 of the 12-page article, from a journal one of the mothers kept throughout her child's illness:
Every relationship has to offer quiet understanding of our travails accompanied by the capacity to give without expecting too much in return.

This one just stuck with me... for two reasons:
Because this is what I need, now, as Gal who has lost Tikva.
And because this would also be what I needed had Tikva lived
And our lives consisted of caring for a child whose health was more precarious than most.

Understanding - isn't that it, really?
Isn't that what we so crave from those around us?
I'm not sure it's entirely possible to completely understand unless you've been there,
Unless you are there too.
But you can still have quiet understanding and the capacity to give without expecting much in return without having been there.

See, all we need is for you to just keep loving us,
Unconditionally,
Without judgment about how we are going through our heavy, messy emotions.
Even if we have lost that sparkle in our eyes,
That impenetrable optimism and faith we used to have,
Even if we are now much better at bringing the house down with the heaviness of our sorrow
Than bringing life to a party as the social butterfly we used to be.
Even if we have very little to give in return right now
And may never return to the person we were before.
Continue to love the person we are becoming
And you will help us to love our strange new selves too.

I don't know that our old selves ever return after we have lost something as precious as a child.
I just trust that something new and even more (unexpectedly) beautiful will come out to replace it.
I think it's a process that takes a long long time,
The rest of our lives,
And requires a lot of trust and patience,
Especially with ourselves.
I think those around us grieve too
For the loss of us as we were to them before.

I think so often about Kalmin, Tikva's sweet little friend from the ICN.
Kalmin is home with his parents now, 7 months old today.
They are among the most amazing and inspiring people I have ever known,
Positive and present and stepping forward toward life in the most dignified, humble and loving way...
These people have definitely been growing throughout their lives in order to come together and become Kalmin's parents.
Kalmin is courageous and hardworking, and also fragile and needing a tremendous amount of support
For an indefinite amount of time,
The future unknown but all possibilities possible.
I am always rooting for Kal, always...

And I wonder so much what life would be like right now if Tikva were home
With us,
Needing constant medical care
And machines and medication
To survive.
There was a time I was able to imagine Tikva coming home needing some support,
But I'm not sure just how much support I could imagine
Beyond an oxygen tank and maybe a feeding tube
For a while
Until she could do it all on her own.

I never thought about what if she could never do it on her own?
Until the very last day of her life
When that became reality.

Every relationship has to offer quiet understanding of our travails accompanied by the capacity to give without expecting too much in return.
Isn't this also what Tikva needed from us?
Isn't it also what Kalmin's parents are giving him?
It's that unconditional love thing showing up again
And again and again and again...

Then this question came to me while I read:
Are some kids just not supposed to make it?
When do you stop trying to save them?

Is there a science to knowing when to hold on and keep fighting and when to let go?
Or is the answer bigger than science,
Emanating from a more intuitive,
More connected place?
Do we decide for them,
Or is it our children who decide when they are ready to go
And when they feel they can stay?
I don't really have an answer to these questions
But I think about them a lot.

The same old wise friend I've mentioned before wrote me recently and pointed out something that I have also thought about before:
That it is the most amazing miracle when things go "right"
And a baby is born, alive and healthy.
He's right, and this is a good thing for me to remember.
Because I can process and reprocess the 600 hypothetical reasons Tikva's diaphragm didn't fully form when she was in my belly
And find a way to make every single reason point to something I did wrong or didn't do right.
But really, it's the most random thing in the world why one child is born healthy and alive and smoothly and one isn't.
I just don't know how much I want to tangle my heart into knots trying to figure it out.

Which brings me to this, which I have been thinking about a lot lately as I prepare my body to get pregnant again:
How much will I do to know in advance if my third child will be healthy?
How much do I do now, before getting pregnant, to make sure my womb can help that child grow strong?

I am doing a homeopathic detox that I got from my acupuncturist
Who specializes in pregnancy and women's bodies.
Every morning when I take my 5 drops each from 3 little bottles in a glass of water
I ask myself, Does this even matter, especially if it's all just random anyways?
Does it really matter if I put my food in the microwave just this once
Or forget to take my folic acid for a few days
Or bring my lunch to work in a plastic container
Or eat that little wrapper of Smarties from the candy bowl?
If it does matter, how do you explain the millions of babies who are born just fine to mothers who eat fast food their whole lives and smoke throughout their pregnancies?

At 13 weeks you can do a CVS test, which is like an amnio except the sample fluid with the same large needle comes from the placenta, to test for all the chromosomal abnormalities they currently know how to test for.
At the same time, you do a neucal translucency ultrasound to check the amount of fluid at the back of the baby's neck, to rule out Down Syndrome and other similar anomalies.
At 13 weeks, an ultrasound may be able to detect something like CDH and some heart anomalies... maybe.
Because of my history, they would probably look for that, especially if I insisted on it, which I am good at doing.
I can have genetic testing for hundreds of other things they are able to test for.
I can get a whole lot of information about things they know how to detect in advance.
I can find out if my child is a girl or a boy.

And then I have no choice but to let go...
Completely let go
Because what else can I do about the thousands of other unpredictable things they can't test for?
The chromosomal abnormalities that are so rare that they don't know how to test for them yet?
The unexpected things that can happen during a pregnancy - placental abruption, cord accidents, stillbirth, hundreds of things I don't even know about?
All that can go awry during labor and birth - infection, loss of oxygen, meconium aspiration, shoulder dystocia, so much more?

I just can't hold that all right now,
And I don't know how I could hold it all during an entire pregnancy.
So I will do what I can to learn what I can know about things that feel important now,
Now that I know what I know - that it really is a miracle when everything goes "right."

And then I will do my best to let go and to trust again
That miracles do happen.

Things may not have gone "right" in the way I imagined when she was conceived
Yet WHAT AN INCREDIBLE MIRACLE TIKVA WAS.
There is one thing I have never questioned:
That from the moment we learned that Tikva was going to need help to live
We did everything we possibly could and then some to give her a chance...
Everything.
She brought out the best in me, in us, in all of us.
And with the help of science and whole lot of love, she did live.
She lived for 8 weeks and 2 days outside of me
And 38 weeks and 5 days inside of me.
Just that is a miracle.

From A Friend

I received this last week from someone in my family, who got it from an old friend of hers, who has a friend who just recently lost a child. I was so sad to find out that yet another woman has joined this club, and another baby has joined ours in angel-land. The author of this list is unknown, but I really appreciate what they wrote. Feel free to spread it around.

1. I wish my baby hadn't died. I wish I had him/her back.

2. I wish you wouldn't be afraid to speak my baby's name. My baby lived and was very important to me. I need to hear that s/he was important to you also.

3. If I cry and get emotional when you talk about my baby, I wish you knew it isn't because you have hurt me. My baby's death is the cause of my tears. You have talked about my baby, and you have allowed me to share my grief. I thank you for both.

4. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

5. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my baby, my favorite topic of the day.

6. I know you think of and pray for me often. I also know that my baby's death pains you too. I appreciate the phone messages and I hope you know how much they mean to me.

7. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my baby until the day I die.

8. I am working very hard on my recovery, but I wish you could understand that I will never fully recover. I will always miss my baby, and I will always grieve that s/he is dead.

9. I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.

10. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.

11. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I am feeling miserable. Please be as patient with me as I am with you.

12. When I say, "I'm doing okay, " I wish you could understand that I don't "feel" okay and that I struggle daily.

13. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, frustration, hopelessness, and overwhelming sadness are all to be expected. So, please excuse me when I'm quiet and withdrawn or irritable and cranky.

14. Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

15. Please excuse me if I seem rude, certainly it is not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

16. I wish you understood that grief changes people. When my baby died, a big part of me died with him/her. I am not the same person I was before my baby died, and will never be that person again.

17. I wish very much that you could understand - understand my loss and my grief, my silence and my tears, my void and my pain. BUT, I pray that you will never understand.

To Be Held

Thank you, dear friend...

Home

Tash over at Glow in the Woods wrote a piece recently about home.
At the end, she asks the question:

What was your relationship to your house after your child(ren) died? Had you already created a space for them? What happened to that space? Did you move or wish you could to escape the memories that are intricately tied with the space in which you live?

I've been thinking since then about home and what it means to me,
What it has meant on this journey,
How it holds me in ways not always simple and not always obvious.

We have a breakfast nook and a small sun porch in our house, around which the rest of the house flows.
It's a square house that feels like a circle, good feng shui.
It's cold in the house, usually colder inside than outside,
Especially in winter and the foggy months of summer out here in San Francisco's Sunset District.
It is a hard house to keep warm
Except in the breakfast nook, which is easy to heat with a space heater,
And which stays warm longer than the rest of the house.
During the foggy months, the sun porch was often warmer than it was outside,
Because it is covered by glass,
To let in the sun and keep out the fog and wind.

I love sitting in the very center, the very heart of the house
Right next to my space heater,
At the round red kitchen table
Typing on my laptop
Like right now.
I buy fresh cut flowers to always have on the kitchen table
And some plants sit in the sun porch just beyond the windows of the breakfast nook.
Cozy in spite of the cold in the rest of the house.

I didn't ever get to a point of feeling at home in the apartment we rented while we were in Jerusalem.
Too much noise and constant chaos outside at the construction site across the street (immense).
Our street was generally quiet otherwise, especially on Shabbat when the whole city shut down,
But Jerusalem never felt peaceful to me the rest of the week where we lived.
Apartments there are made of limestone and cement,
Cold as ice in the cooler months.
When I was sick with shingles during the beginning of my second trimester carrying Tikva,
Home was the red couch on which I lay in pain for most of a month,
Watching the entire Twin Peaks series on my computer.
In Israel, I mostly found home in my computer,
Where I could connect with family and friends far away,
Write on my blog, watch shows, read about things.
I call my computer my Mothership,
It's where I ground much of the time.

It was fitting that it snowed in Jerusalem a week after we had the ultrasound.
The freezing cold in our home suited the way we felt - stunned, scared, frozen.

Dave and I hugging each other tightly, crying in the middle of the night, surrounded by the chill in the air, relying on each other's bodies and an old smelly space heater to keep warm.

The stillness of a city that shuts down when it snows suited the mood, too,
And made it impossible for us to do anything more than just be with our fear and the unknowns ahead.
(Not easy for two doers, two planners.)
And it was magical, surreal, and beautiful to watch Dahlia experience her first snow ever.

One of the very first messages we received from beyond:
That what we did have for now was hope, the possibility of magic.

I didn't let myself root in Jerusalem because I was reluctant to be there.
When it was time to return home to get care for Tikva,
Four months earlier than we'd planned,
I was relieved
To be returning to the familiar
So that the familiar could hold us
While we navigated the unknown.

Still, how strange to be returning to San Francisco
Because we weren't supposed to be here,
We were all set to head to Cincinnati after our year in Jerusalem,
Brand new baby in our arms,
Beginning a new life in a new home in a new city,
A family of four.

It felt like bookends to me, because we returned home to Marin,
To the home of Dave's wonderful aunt and uncle,
Where we had spent our very last week in California just before leaving for Israel in June of 2007.
Now we were back, spending a month with them before moving to San Francisco.
So comfortable, so familiar, a place where Dahlia feels so at ease,
And Dave and me too.
A place filled with loving hearts and open arms and late nights talking everything through with Auntie Marty in the kitchen.
From this home, we organized our new life back home:
Got ourselves on emergency Medi-Cal for insurance.
Bought cars to replace those we had sold before leaving.
Asked our community to help us furnish our house in San Francisco
Since all of our belongings await us in a storage unit in Cincinnati.
Found not one, not two, but three schools that could give Dahlia a place to spend her days with kids her age.
Set up our phones, Internet, auto insurance, utilities.
Started seeing the doctors at UCSF.

Then it was time to move to our home in San Francisco,
Where Dave's Uncle Frank had lived as a teenager,
Where Dave's cousins had lived and painted the walls wonderful colors,
Where all of the rooms and cupboards and drawers are filled with
Dishes, cups, flatware, cookware,
Towels, bedding, pillows, rugs,
Tables, chairs, beds, couches, dressers,
Toys, games, clothes,
Everything we could possibly need and then some.
Everything we could possibly need and very little of it ours.
Amazing.

This home is all about Tikva.
If it weren't for her, we wouldn't be here.
We prepared for her arrival here...
Her prayer flags hung over our bed from early May until mid-June,
When they moved to be with her in the ICN.
I sat many times in the sunroom
Reading and writing and feeling her inside me with my hand.
I called UCSF Labor and Delivery many times from that room in the weeks just before she arrived,
Unsure if I might be in labor already, yet.

I cried a lot in this house, unsure of all that was ahead.
I cried a lot in this house while Tikva was alive, tired, scared, relieved, hopeful.
I have cried a lot here since.

The glider in the corner of our bedroom where I sat and pumped during the two months of her life is still there
And sometimes I look at it and I am right back there,
Middle of the night, Dave asleep in the bed, the hum of the breast pump going back and forth, back and forth,
The spray of my milk sometimes leaving tiny dots of white on the fleece blanket my mom sent for my birthday.
I went for a walk recently and noticed some of those tiny dots on the cover to my iPod,
From when I listened to music as I pumped my milk.

The baby clothes and bottles and toys that people gave us have been sorted through and put away in boxes in a closet in the garage
Where I don't have to see them every time I drive in with the car.
The bigger items - carseat, baby chair, bags of maternity clothes - have been returned to friends.
We have all of those in storage in Cincinnati for when we'll need them again.
The breast pump has been returned.
Only one tiny bottle of milk remains in the freezer,
Left behind accidentally when I gave my milk away.

We didn't know when and if Tikva would come home,
And if she did come home, there was no way she would sleep anywhere but in bed with us,
So we didn't have a crib or a bassinet or a co-sleeper.
We didn't get diapers or a changing table.
All we had was a carseat to bring her home in,
And the anticipation of the slings I would buy to carry her on my body every second of the day
Afterwards.

We have a picture of Tikva in a frame in the living room,
The picture of her just after she had died.
Eyes closed, spirit already gone.
Marty framed it for us,
It has been there since the day we buried her.
But it makes me sad
And it sits in the room I spend the least time in.
I want to frame the one of her alive,
Eyes wide open,
Piercing and present
And hang it in the breakfast nook
Where we eat together as a family,
Where Dahlia sits and draws pictures,
Where I write.

During the last day of Tikva's life
When I knew that it was time to say goodbye,
I pictured myself coming home and posting a picture of her on my blog
With the dates of her birth and of her death...
Rest in peace, little one.
Even in the not wanting to admit it,
I knew what was ahead,
Just knew.

It's sad in this house without Tikva
(At least to me, it is)
Because it is so much about her.
Not just because we wouldn't be here if it hadn't been for her,
But because I lived almost her entire life here
And now I exist here learning how to exist without her.

I healed from giving birth here.
I felt my sore breasts throb with the urge to express milk when it was time to stop lactating here.
I have typed thousands of words here about my daughter and my broken-wide-open heart.
I have been held here by my husband and our family and our friends.
We have welcomed so many to sit with us during shiva,
Recited the mourner's kadish here,
Lit Shabbat candles and yarzheit candles here.

For better or for worse, this cold house that is a circle is home.
Empty of Tikva but not of hope.
Filled with love and laughter and chaos and light.
Space to stretch out and space to curl into a tight little ball.
It is where we live right now
In the aftermath, the afterglow of the story of Tikva.
Before the next chapter that will push us along on our course
In a strange new city in a part of the country we don't know.
For now, this is home
And here I feel safe.

Home is where the heart is,
Even when the heart is cracked open.
There is a lot of heart in this house.

New Lungs

Ann, my friend's friend who has cystic fibrosis and has been awaiting a lung transplant,
Is now at USC and new lungs have arrived for her.
I think she will have transplant surgery in the next few days.
My heart skipped a beat when I heard my friend's message that lungs were available to her,
Then tears flowed down my cheeks
For the hope of years and years ahead for Ann and her sweet family.
Then a very powerful feeling came over me:
That I needed to tell Dave and those who care about me that I want to put myself down as an organ donor.
It's something I've thought of in the past, but I haven't gone through the formality of signing up with the DMV
And writing it on my advanced medical directive.
For a while I attached to the idea in Judaism that you return to the earth in the same "complete" way you came in.
But that doesn't resonate with me anymore for several reasons...

I don't believe that my body will carry my spirit after I die,
So what does it matter how much of my body ends up in the earth
Where it will feed the worms and nourish the soil?

I don't believe that I am any less complete if some part of me isn't buried with the rest of my body.
My Baby Girl was born with only half a diaphragm, small lungs and underdeveloped airways.
Does that mean she came into this world any less complete than me?

If Tikva had grown older, it's possible that she might have needed something like new lungs one day.
If she had been born with another condition, who knows what she might have needed.
Who knows... But it really hit home how important lungs or another organ could be to someone as sick as Tikva.
Ann awaits her new lungs supported by a ventilator, the same kind Tikva needed.
Would I not want to help someone who struggles like my child did,
Someone who could be saved by my unneeded organs?

My prayers tonight are these:

That Ann's surgery happens in time,
That it goes smoothly and is successful,
That her body welcomes its new lungs without complications,
That her new lungs allow her to breathe on her own
And grow old enough to know her great grandchildren.

That I, too, get to live a long healthy life
So that I can also know my great grandchildren.
Only if that's not meant to be, I will know that someone might live for what I have to spare,
What I would be able to share.

It even occurred to me tonight that we could have donated some of Tikva's strong organs.
Strange thought, I know, and I'm not sure they would take organs from such a sick child.
Obviously the thought didn't occur to us then,
And I don't think I could have handled the thought of her body going through more, even after her death.
But I can't help but think quite often that so much of Tikva's body worked so well,
And how strange it is sometimes to think that if only her lungs and airways had been stronger,
If only her diaphragm had fully formed around 8-10 weeks gestation...
Well, I just thought tonight that her heart and her brain and her kidneys and liver and spleen and pancreas
Were all strong and healthy, if just a little tired from how hard she worked to live.
And her eyes... so beautiful, clearly so capable of taking in all that surrounded her.
You can even donate your eyes to someone who can't see.
Amazing... I used to think I wanted to keep my eyes no matter what,
But now, really, what does it matter?
I see so well and my eyes are big and soulful,
They could allow someone to see.

Strange thoughts...
Hard ones not to think of now
With all I know...

Like A Ghost

I woke up around midnight last night very suddenly
From a dream about Tikva.
There was more to the dream, but this is what I remember:
Dahlia and I went to look for Dave who was resting in a bed in a guest bedroom somewhere.
Next to him on a pillow was Tikva's body.
She looked like she was sleeping, but we knew she wasn't alive.
She looked peaceful, still pink, still soft.
We all said to her over and over,
We love you Tikva. We love you.
Our words made her open her eyes.
Her eyes were blue, dark blue like Dahlia's.
She looked at us, her eyes looked back and forth at all of us,
So aware of us and what we were saying to her.
I seemed to be the only one who noticed she had opened her eyes
And I tried to get the words out of my mouth:
She opened her eyes! She opened her eyes! We woke her up with our love...
But they kept getting stuck in my throat.
For a moment I entertained the idea that if we just told her we love her enough,
She would stay awake, come back to life.
But I knew this wasn't true.
And I awoke.

This is pretty much how I've been feeling this week,
If only...
The tears are about a millimeter from the surface,
Always almost there
But I didn't really feel like letting them out at work.
I did cry on Tuesday morning watching this
In wonder at the reality that my Tikva is one of these babies,
One of these stories,
So similar, so familiar.
And I cried all over Dave's sweatshirt on Wednesday night
After my longest workday of the week,
Pure exhaustion,
Weariness.
Disappointment that this is all there is now - a regular day at work,
Something so normal and with so little meaning.

Grief and despair call for a lot of energy
And so does the social aspect of work.
For months - even since before Tikva was born - I have been shying away from a lot of social interaction.
Now I have to be around people a lot, and function.
I'm not complaining about having work, but it's hard sometimes;
I do better these days "socializing" remotely.

On Wednesday I woke up feeling like I had dreamed about Tikva.
I couldn't remember anything, but she just felt so close,
So almost there
And that made me so sad, so sensitive all day.

I think the part of her life that haunts me the most is her last day
And how it unfolded until we said goodbye.
In response to one of my posts in November about disbelief, Kate wrote:

I know you know this already, and I'm going to say it anyway because I need to tattoo it onto my own heart, too. You and Dave did not make a decision for Tikva. She made her own decision. The two of you simply helped her, orchestrated her moving beyond in a way that was loving, and on your terms as a family. Whenever anyone says the word 'decision' in your presence just spit twice and throw salt over your left shoulder. Or something. It's never meant badly, but it can echo in your head badly. So banish it.

She's right, so right, and yet this is the irony:
It's not anyone else who is calling it a decision.
It's me who feels that way, who forgets now,
Four months and five days since the day we let Tikva go,
The grace and clarity of heart that held and guided all of us.
I am the one who keeps doubting,
Who keeps asking me to go over the events of that day
So that I can remember how clearly it was time to let Tikva go.

I don't know that I have experienced anything harder than having to make the decision
To take Tikva off all of the machines that kept her alive in order to let her go.
To see her that final day so weary,
So tired of fighting,
So hypersensitive to the tiniest movements around her and in her own body
That could set her off into a horrible episode,
The need to keep her paralyzed so that she could merely survive.

THE REALIZATION THAT IT WAS TIME TO LET MY BABY GIRL REST,
Time to stop trying
Because there was nothing more to try,
Because it was time.

When I think about it now -
And believe me, I don't make myself think about it, it's just there,
So consistently there -
I just can't help see so vividly how we chose to keep Tikva alive with the machine that breathed for her
And all the drugs that supported her everything else.

Was it right to do that? Was it real? Was she really alive?

It makes me feel more and more how thin the veil is that separated Tikva's spirit from her fragile living body.
I wrote to Kate once that when I went to UCSF to see Tikva in the ICN on the 15th floor,
Way up there buried in the thick fog of summer in San Francisco,
It felt like I was meeting her halfway between heaven and earth.
She never felt completely embodied to me,
She always felt part spirit in between her time inside me and her time back to fully spirit.

And yet we tried...
We really tried to help her with all the machines and all the medicine
Until she could do it all on her own.
We hoped that she would get well and no longer need the machines or the medications.
We thought that maybe she just needed a little help for a while,
For a while...
Then I remember how in those last 10 days
She just kept getting worse and worse
Until it was clear.

But could we have done anything more
To bring her back to okay?
To help her over this hump until she could get stronger?
To help her breathe enough so that she could get the oxygen her body struggled for?
Did we keep her alive too long as it was?
Were we ever being realistic,
Us and the doctors in those weeks we thought she was improving?

I haven't had time to let myself ask all these questions all week
Without bursting into tears in my cubicle at work...
So here they all are.
This is the stuff that goes on in my head.

I feel a bit like a ghost here in San Francisco now.
Like somewhere in some parallel universe
There is another me living in Cincinnati with my two healthy daughters - Dahlia and Tikva - and my sweet husband who is still in rabbinical school
Since we all made it home safely from Israel last summer.
I didn't feel like a ghost here when Tikva was still in my belly
Or when she was alive,
But now I do.
I'm not supposed to be here, and yet here I am.
At work only a few people know the road I have arrived here on;
To them I am just me, not a ghost.

Here's how Dave and I see things differently:
For him, being here now, without Tikva, is also strange.
But he finds comfort and pride in knowing that it is the result of the huge choice we made to return here and give our Baby Girl a fighting chance.
That is a glass-is-half-full way of looking at things if I ever saw one.
When I think of it that way, though, it just makes me sad,
Like, I came here to give my daughter a fighting chance and now she's gone and I'm still here, working a job that isn't what I really want to do (writing, nursing), antisocial and feeling like a ghost.
That is a glass-is-half-empty way to see it.

I have to admit that I feel worlds better after I've really let myself cry,
After I've really been able to cry
Because sometimes even though they are just under the surface
The tears still don't come right away.
Eventually though, they do
And I am able to shed yet another layer of the heaviness that likes to hang out
In my shoulders,
In my jaw,
In my temples and the space on my forehead in between my eyes.

It's heavy stuff, having birthed a child who was born so sick,
Having lost her.
I'm still learning how to integrate it into my life going forward,
Knowing that I will always carry her in me.
I wonder if I will ever look at Dahlia or hold her and not think just a little bit about Tikva.
It's not that I'm not being present with Dahlia...
If anything I appreciate her in a way I maybe didn't enough before.
But how can I look at one daughter and not think even a little about my other daughter?
Then Dahlia will say something about Tikva,
Which she does at least a few times each day,
And I'll know that Tikva is there just as much for her Sister
As she is for her Mama.

My mind stills now,
Post brain-dump,
Post tears.
It's almost Shabbat
And I need the rest.

Lighting Candles on Sunday

This Sunday, December 14th, is the annual worldwide candlelighting for all the children we have lost.
Children of any age, our own or those of others we know or know about.
Dave, Dahlia and I will be going to a special candlelighting event at UCSF that afternoon.
I will carry in my heart the names of all of your beautiful angels.
When we come home, I will light a candle and a stick of incense for Tikva
And all of her angel friends.
Join us if you'd like...
Light a candle,
Light the incense you got at Tikva's celebration in August,
Hold her and all of the other angels in your hearts.
And give an extra hug and smile to those you love.

Just Like That

(This incredible quilt is made of pressed flowers...)

I went to yoga yesterday morning.
It was the most crowded class I think I have ever been to,
But I decided not to bother getting annoyed...
So I didn't mind.
The class hadn't started yet so people were talking
And it was noisy in the room with the rumble of the heater.
Two women were talking across from me,
Barely mumbling so that I really shouldn't have heard them.
But I did hear them,
I heard because I was meant to hear what they said to each other
And because I heard from a different part of me.

Their conversation went something like this:

One of them said to the other, who was someone she had just met,
I just came back from being with my best friend
Who lost her baby a month before her due date.
Her baby just died, just like that.
The other responded,
That happened to a friend of mine about a year ago.
She has since had twins... so there is hope.
The first one continued,
My mom lost a child too, before me,
She was born premature and didn't survive.

That's when I got up and walked over to them and squatted down.
I said, I overheard you talking about your friend who lost her baby.
I am so sorry. I lost my baby four months ago
And I wanted to make sure your friend has the support she needs.
They were so sweet, so sensitive, so able to be present,
These two young women who haven't yet had children of their own.
We spoke more after class and I learned more about this woman
Who doesn't even live close by, but who shares this experience.
I gave her friend my contact information
And the link to Glow in the Woods.
Her friend told me that she was grieving too,
And I told her I understood.
She told me she was so sorry for my loss
And I said I was sorry for her friend's,
And for hers.

The three of us talked.
We talked about why this happens so frequently
And yet you don't hear about it until it happens to you or someone you know.
These two young women were the ones who said it,
They were the ones who were frustrated by that, stunned.
And here I was, one more person they knew of who has lost a child.
I thought about how they will carry this knowledge when they, too, get pregnant.
I thought about what that would have been like for me to carry before I had Dahlia.
This woman knows it can happen
Because it just happened to her best friend, her "sister" as she described her.

There was something moving for me about being in that yoga class
In between the two conversations with these two women.
For the 90 minutes of the class, I knew that they knew this about me,
That my daughter had died four months before.
It felt good, having them know,
Even if the three of us were completely in our own zones during class.
It just felt less anonymous amid the 40-50 people in the class that morning.
I had a surprisingly good class even though my period had just arrived that morning,
Three days late and not a moment too soon.

I have started making Tikva's quilt.
It feels amazing to be working on it,
To see it unfold and in the unfolding,
To imagine what it might look like in the end.
Elizheva is my coach, and so is Elaine.
Elaine was Tikva's primary night nurse for almost all of her life.
She was there when Tikva died and she was the one who bathed her body afterwards
And prepared the most beautiful box of mementos for us...
Little footprints and handprints and some of her hair,
Some baby things she had used in the ICN.
Today Elaine came over with sewing tools and we cut squares
Out of beautiful batik fabric Elizheva and I found over the weekend.
And we talked.

I have 43 prayer flags that hung above Tikva's bed in the ICN.
They were prepared by my sister
And each one has a prayer or blessing on it
Written by loved ones at our blessing for Tikva last May,
About a month before she was born.
The flags are so beautiful, so infused with love,
So infused with Tikva.
They surrounded her and us since before she was born,
When they hung above our bed for those weeks until her birth.
Elaine and I cut out 43 larger squares in different colors
And each of the flags will be framed in one of these squares.
From these Elizheva and I,
With Elaine's help,
Will make the quilt,
Probably in a circle
Around the onesie from Carol that reads,
I'm Tikva... and they're with me.

I have felt many times on my life's journey that I am
Deeply grateful to be a creative person.
That I can express myself in words, writing, speaking,
That I can express myself in color, making things out of
Paper, beads, wire, collage, images, fabric, things from nature.
I am thankful for my creativity because it
Soothes me,
Comforts me,
Calms me,
Relaxes me,
Focuses me,
Gives me time to reflect,
To be with myself.
It is cathartic,
Healing.

I know making Tikva's quilt will be all of those things.
I'm not in a hurry to finish it.
I want to do it right, mindfully.
One day it will hang on a wall in our home...
Always.

A Bag Full of God Revisited

In mid-May, almost 3 weeks before Tikva was born, I wrote this on my blog:

Tikva, you are indeed a bag full of God. I believe we all are. Remember that you are always connected to and a part of the Source energy that you come from, whether you are a spirit or once you have incarnated out of my belly. When I look down at my big belly that holds you and feel your life that pulsates from within it, I can't help but feel deeply connected to and a part of God.

This morning as I was driving home from dropping off Dahlia at school,
I was on the phone leaving a message for Elizheva
About the quilt we are making together out of Tikva's prayer flags.
As I spoke about Tikva's quilt,
A hawk flew by... of course.

I had another visit from a Red Tail Hawk the Friday after Thanksgiving as I was on my way to yoga.
He came past me just outside our house, and flew to the top of one of the big trees across the street.
And he just stayed there, perched at the very top, looking around.
I watched him for about 5 minutes, talking to Tikva, feeling her.
I took her spirit with me to yoga, dedicated my practice to her,
Breathed deeply in her honor.

Tikva is still with me...
She is still a part of me,
And I am still a part of her,
And together we are still a part
Of God,
Of Source,
Of all that is...
No matter what.
I always told her that when she was alive,
And before,
And I still mean it.

To A Milkweed

by Deborah Digges

Teach me to love what I've made and judgment in that love.
Teach me your arrogance, with each five-petaled horned flower teach me how much blossoming matters along roadsides, dry-beds, these fields no longer cleared.
Teach me such patience at each turning, how to live on nothing but will, its milky juices, poison to others, though when its stem is broken bleeds.
Teach me to need the future and the past.
Let me be tricked into believing that by what moves in me I might be saved,
and hold onto this.
Hold onto this until there's wind enough.

(Thank you, Aliza)

Kaleidescope

by Kate Havnevik

Kaleidoscope

You cut me out in little stars
and place me in the sky.
I lose my sense of time

You know me
How troubled I can be
but through your kaleidoscope
I let go.

Cuz you show me
the world as it could be
through your kaleidoscope
it's beautiful

A tingle travels up my spine
a cluster of colors and twine
as we melt into wine

You know me
How troubled I can be
but through your kaleidoscope
I let go

Cuz you show me
the world as it could be
through your kaleidoscope
it's beautiful

Kaleidoscope

(Thank you, Alex)

Releasing Attachment

It's about forgiveness... forgiving ourselves.
I've been stewing over this for the past few days,
The idea that we may be responsible for our children's deaths...
An idea that is everywhere on our blogs,
Those of us who have lost our babies.
I think every single mom who has lost a baby feels responsible
In some way.

How can we not when we have carried our babies inside us?
In that place we thought was the safest place they could be
To grow healthy and strong and alive.

But it's about forgiveness...
The idea that we can forgive ourselves,
That we have to.
Because feeling responsible for their deaths is an attachment
To something that doesn't make our babies come back,
Something that makes us feel horrible,
Something that we really had no control over even when we thought we did
Before something terrible happened to our babies.

I had a conversation with Dave several months ago
About how I felt responsible for Tikva's illness,
For her struggle, her death.
He pointed at Dahlia asleep in the back seat of the car and said,

So what about Dahlia? How do you explain her aliveness, her wellness? You carried her inside you too.

Oh, but Dahlia's all you. That's why she's always been so full of energy.

Oh, I see, he replied. I get all the credit for Dahlia's robust health and you take all the blame for Tikva's death. Make's sense.

(The gentle sarcasm in his voice accentuates the ridiculousness of my conclusion.)

Hindsight is a screwy lens to look through to evaluate yourself.
After knowing why our babies died, it's so easy to say,
If only I had... If only they had... If only...
But how could we have known to, perhaps...
... be more cautious than we already were?
... be tested for more things we didn't even know existed until they happened to our babies?
... done less or more yoga?
... eaten different foods?
... trusted ourselves less?
... trusted ourselves more?
... known how to avoid something whose cause isn't even known?

It's crazy-making, all this banter in my head, all this guilt.
And I'm realizing how little good it does.
So many maybes, so much perhaps.
There will always be more to come up with, don't you think?
Always more room for second-guessing, for doubt.
The ego is a powerful force.

Of course we share such a culture of responsibility for the loss of our babies.
The maternal urge is about protecting, not harming, our children.
Many of us carry that maternal instinct from the time we are little girls.

Yet when I look at Dahlia,
Amazing, wonderful, challenges-me-every-moment, alive Dahlia,
I see already that I can't ever protect her from everything.
She's not really mine,
That's just an illusion.
I learned that really vividly with Tikva...
She was just passing through,
Here to live out her purpose in a concentrated blink of an eye,
Which was all she needed to do everything she came to do,
While I seem to need more time to do my work.

I don't believe that the womb is a dangerous place.
When I try on that idea for size, it feels wrong in every cell of my body.
I believe that life is fragile
And that when a child is born safe and alive,
It is nothing short of a miracle,
One that is sometimes easy to take for granted
Because we are taught that if only we (fill in the blank), then we'll have a healthy living baby.
I believe that in life things do go "wrong"
And that we have very little control over anything.

I hesitate to use such a qualitative and judgmental word as "wrong"
Because how could the very existence of Tikva ever be wrong?

My old wise friend pointed out something recently:
That when something goes "wrong" we ask, Why?
But how come we don't ask Why? when things go "right",
The way we hoped they would?
Isn't one just as likely or unlikely as the other?
How can we be so sure things will work out a particular way?

Which brings me to this:
How can we be so sure the next time will be horrible/difficult/awful/heartbreaking/gutwrenching also?
I know, now that we know how bad it can get, we know how bad it can get.
But why does that mean it will get bad again?
If it's just a huge crapshoot,
Isn't there as much of a chance that it will get better,
That it will go fine?
Am I just naive because losing a baby has only happened to me...
Well... twice?

And this, which my dear husband reminds me of:
Is it as black and white as good or bad...
Or is there more to it?
Is there some blessing in the heartbreak?
Some still unknown lesson amid the madness?
Are we throwing away the baby with the bathwater if we remember our babies just as those who died
And not, also, as those who lived inside our bodies and our hearts,
Who still live inside our hearts,
Our hearts cracked wide open forever by their presence?

I am reading Pema Chodron's When Things Fall Apart right now.
I am not a Buddhist, but something told me to get this book, and I asked a friend if she had it because something told me she might and she did.
(That's how things have been since last January... intuitive like that.)
I've been thinking a lot about attachment,
The idea that we attach ourselves to ideas,
And that most of the time it is our attachment to ideas that causes our pain.

Her book is really working for me right now.
It's a tiny little book, something you can probably read in a few days,
And it is precious if you have lost in such a profound way as we have.
I love this:

Being right on the spot nails us. It nails us right to the point of time and space that we are in. When we stop there and don't act out, don't repress, don't blame it on anyone else, and also don't blame it on ourselves, then we meet with an open-ended question that has no conceptual answer. We also encounter our heart... As one student so eloquently put it, "Buddha nature, cleverly disguised as fear (or grief, or sorry, or heartbreak, or despair...my additions), kicks our ass into being receptive."

So where am I now that my heart is forever cracked wide open,
Now that I have been nailed and forced to notice,
Now that I am paying attention to all that I might have missed before
Going on all around me?
Am I being gentle, patient, compassionate and forgiving with myself?
Am I open to the possibility that Tikva's short life might be a gift I never expected or asked for?
Am I ready to embrace my new purpose as the holder of this shattered yet more compassionate heart,
Even if it is a purpose I didn't ask for?
Can I let go of attachment to responsibility for the loss of my child
So that I can embrace her for the perfect beauty of who she was?

She was, after all, the object of my love
And love is the most pure and essential energy of all.

The Price of Breath

Breath is so precious.
I never realized it until I knew Tikva.
Because I knew Tikva,
I am most deeply moved when I learn that someone can't breathe.
I am shocked when I see perfectly healthy people smoking.
But mostly, I am shaken to want to do something to help.

I get frustrated sometimes that I can't do more,
That I can't wrench the cancer out of someone's abdomen,
Heal another person's pancreas,
Undo the impact of a hereditary illness.
But I can hold them in my hearts
And invite others to do the same.


This is a woman named Ann.
I think of Tikva when I think of Ann,
And ask my Angel Tikva to watch over Ann.

Ann's husband's name is Jason and their daughter's name is Katie. Ann has cystic fibrosis and is awaiting a double lung transplant. She recently had her right lung collapse and had to have surgery to attach it to her chest wall to keep it open. On Thanksgiving morning, her other lung collapsed. On Tuesday, she had the same surgery to attach the left lung to her chest wall as well. The surgeon (who had successfully done the prior procedure on her right lung 3 weeks ago) was uncertain of its success, as the hole in her left lung was much larger. He said we have to wait 48-96 hours to know for certain. Unfortunately, Ann was only extubated for ~3 hours prior to requiring re-intubation due to difficulty breathing on her own and a consequential buildup of C02 levels in her lungs. She has been breathing on a ventilator for ~18 hours; thus we are praying that she can be extubated as soon as her C02 levels will allow/drop. Please pray for Ann and her family. That Ann will hold on until she can get new lungs and that new lungs will come in time.

Such familiar words...
Intubated
Extubated
Ventilator
Lung
CO2
Surgery
Breathing

Take a deep breath...
And hold Ann in your heart when you do.
Our collective energy is powerful support.

(I will continue to post updates about Ann at the bottom of my blog under the section requesting prayers.)

Two Mes

It's my second day at work and I am sitting stuffing envelopes next to a colleague who is about 6 months pregnant.
It's her first pregnancy, and one of the reasons I was hired was to fill in for her when she goes on maternity leave.
It's not hard for me to be around pregnant women.
Maybe because I have already been pregnant myself - three times.
(Though one was cut short.)
(Though I only have one living child.)
Maybe because I know that I want to get pregnant again.
Maybe because I have never had trouble getting pregnant.

Maybe because I know that no pregnant woman is out of the woods for sure,
So how can I assume that they are lucky when I can't predict their story?
And honestly, I know I'm lucky: I got to be Tikva's mother.

I ask her when she'll be going on maternity leave
(Knowing the answer because my boss told me when she hired me)
And she tells me that she's not sure yet
Because she has a low-lying placenta
That may or may not become placenta previa.
If it is, she'll be on bedrest starting in January.
Otherwise, she'll go on maternity leave in March.
She asks me how old my daughter is and I tell her, Almost five.
It goes by really fast, I say, after the first really intense six months.

She only knows that I have one child.
I don't tell her anything else.
I don't say anything about Tikva.
I don't want to add to what is probably enough worry.
I don't want to be the one to make her realize it's never guaranteed.
She smiles sweetly, seems unaware even of any danger she might be in.
I don't really know if she is in any danger,
But surely there is some risk if she might be on bedrest for her last trimester.
Even if I said something,
I don't think she'd realize it anyway,
Without having gone through it.
I don't want to say anything,
So it doesn't matter.

It's strange not mentioning Tikva,
But I understand that mentioning her is more complicated than saying,
I had another child, but she died.
It's strange like she never existed.
For them, she never existed.
My boss and three other people in this large organization are the only ones who know,
And they won't say anything to others or even to each other.

But there is something else:
I don't really want to share my Baby Girl with them.
I like the idea of keeping these two worlds separate,
Just going to work and doing my job and then returning to my own world.
I don't want people looking at me in the hallway with looks of pity,
Of seeming to know when they likely don't know.
I want Tikva to remain mine,
(Held by you who read this)
But not a part of my work life.

I know that each person there probably holds a story of their own,
A story of sadness, loss, grief, sorrow, darkness, complexity.
Still, it's such a strange thing to bring up,
Your baby who died.
Different than a parent who died when you were young,
Or an illness someone you love is suffering from.

I'm going to be at this job for seven months.
Tikva will be a part of me for the rest of my life
And beyond.
So today, I smiled and said nothing.
Maybe another day I'll say something.
Who knows what fears and worries might have been going through her mind as we spoke.
I understand, I would have told her.

Prayer Requests Updated

I continue to post prayer requests at the bottom of my blog.
They are for people in need of some extra love and positive energy,
For people struggling with challenges too great to carry alone.
I don't believe that anyone should have to carry any burden alone.
Thank you for checking in when you can and holding them in your
Hearts,
Thoughts
And prayers.

The Birth of Hope

Yesterday morning as I was preparing some food for Thanksgiving,
Dahlia asked Dave to see some of the videos of her with Tikva.
We watched one of her visiting Tikva on July 26.
She was so sweet and gentle with her baby sister,
She asked that Tikva dream of "happy and not scary stuff,"
Of the two of them together.

It was the day before we started to understand just how fragile Tikva was,
The day before I collapsed to the floor leaning against Dave
As all of the doctors came racing into the isolation room to help her recover from a major desat.
I was right there in that moment, as if it had just happened.

Then Dahlia pointed at the computer screen and said, "That one!"
And there I was standing next to her yesterday,
Watching Tikva coming out of me on the day of her birth.
I cried thinking, "That was just the beginning,
There was so much hope.
The birth of hope."

I felt such incredible profound love and wonder for Tikva as I watched her come out of me,
Then be taken away to a small room a few feet away
To be stabilized for all that was ahead.
She was so brave...
And so was I.

It's harder to be brave after you've lost your child,
Much harder, and so much more important.

When her little head full of hair started appearing,
I reached down to feel my baby coming out.
I said, "There you are."
I pushed her out in deep sighs
And noticed how beautiful and perfect and robust she was
When she was out of me and I got to see her for a few seconds
Until her umbilical cord was cut and she was carried to the setup room.

I watched closely on the video to see through the window into that room,
To see what they were doing there for her.

There is something kind of haunting about watching the beginning
Now that I am at the other side of the end of Tikva's life on earth.
Something so hopeful, even though the hope is now in the past.
Just watching the beginning
When everything was ahead...
Ahead.

I got an email recently from a sweet woman who is 25 weeks pregnant
And found out her baby has CDH.
She had found my blog somehow.
I cried when I read her email, for all she has ahead of her.
Tears of sadness and tears of hope,
Wondering how it felt for her to read that Tikva died
While she carries her little one in her belly.
She tells me that my words give her comfort and inspiration.

I played with baby Isaac at Thanksgiving and he was a sweet little gem.
Four months old, tiny, sweet, big brown eyes and little sounds coming out of his mouth,
He's discovering his voice right now and talking to his stuffed toys.
I connected with him as a pure soul.
He isn't Tikva, he's just him,
Each of them on their own journeys,
Each of them radiant.

I did miss Tikva at moments throughout the day,
But it wasn't because of Isaac.
I could've been anywhere missing her,
Reflecting on this past year
And all that has been gained
And all that has been lost.

I keep thinking about something Alesia wrote me:

2008 is the year Tikva lived and died.

I don't forget that this year she lived.
I don't ignore how huge that is,
That even that is a gift not everyone gets.

I think there is a part of me that is starting to release some of my attachment
To what isn't,
To what could've been if only...
There is great sadness in that release,
A loss in itself,
But I don't know what other choice I have.
And I know it's what Tikva would want from me,
To release that attachment
And remember her beauty and grace and not dwell on her death.

I looked at Isaac and thought,
"They're just different, Tikva and Isaac.
This little one was meant for a different journey than Tikva's.
Not because he is more special or more important,
Not because his parents are more deserving,
Just because he is Isaac and she is Tikva."
Just because...

My older wiser friend shared with me something his father shared with him years ago:
That we have no idea what God has in store for us.
No idea...

P.S.

I am deeply thankful for all of you...

Thanks To Give?

For the past few days I've been thinking that I should write a gratitude list to help me feel something close to thankful as Thanksgiving approaches.
But every time I start to think of the hundred things that would go on that list,
Because there really are probably a hundred things,
I get annoyed, and keep coming back to the very real fact that

My Baby Girl is not here with me this Thanksgiving
As I'd imagined she might be,
And that just makes me sad.

But for the sake of the exercise, I'll see how much gratitude I can come up with,
And I will probably surprise myself because maybe it will actually feel good to write,
Or at least it will help me have a good cry...

This year, I am grateful, I am thankful for (in no particular order):

Dahlia in all her robust and sometimes troubled glory, for continuing to love me and need me even though I am not the same as I was before.
My sweet husband Dave, for being patient with my ups and downs and ups and downs and downs and downs, for holding me and holding me up, for loving me unconditionally on this complex grown-up journey.
Family - holding us together and sticking close by, no matter what.
Community - close and lasting, ever expanding, holding me gently and solidly through this sad and messy terrain.
A warm cozy home to give me sanctuary.
The heated seats in my car on a cold gray morning.
The fact that I actually got a job in this terrible economy, doing work I am good at, in a caring environment, and with a part-time schedule that will still allow me time for myself and my family.
My body's health, and the fact that I am healthier now than I have been in probably ten years.
My father's health, his constant presence in my life, and the love he gives by visiting Tikva at the cemetery and reading her Goodnight Moon every time he drives up to see us.
My sweet wise solid as a rock sister, who lives just on the other side of town.
The incredible care we received at UCSF before and when Tikva was alive, and still.
Dahlia's incredible school and all of their support.
The beauty and specialness of San Francisco, the ocean, the park, the funkiness, the Bay Area.
Karina living close by for the first time in years.
My go-to gals who are always there for me in all my muddled emotions.
The nourishment of yoga and walks in the park, and the strong body that allows me to take that in.

Breath. I am thankful for breath.

The reality that Tikva lived...

I am so deeply grateful for that,
For being able to hold her,
To touch her,
To pour my love all over her and into her heart.
I am so deeply thankful that she got to grow by taking in my milk,
That she felt my bare skin against hers,
That she knew my voice
And looked into my eyes.
I feel so much gratitude that I got to know her,
That my life has been touched by her sweet spirit.

That I got to know a love unlike any I have ever known,
Pure and whole and free and eternal.

And I am so sad angry frustrated longing broken missing grieving confused crying empty pissed off weepy lost
That she didn't get to stay,
That she was born so sick,
That she had to struggle so much for those 8 weeks and 2 days of life,
That she couldn't stay,
That she isn't here
To spend Thanksgiving with me.

And yet if I had the choice of forgetting all the sorrow and all the grief,
But at the same time I would forget that Tikva ever came through my life,
Touched and cracked open my heart,
I would never give that away.
I would rather carry this pain for the rest of my life,
Even if it hurts so much.
SO MUCH.

I've never really cared one way or the other about Thanksgiving.
We didn't really do Thanksgiving when I was a kid,
Except that sometimes my mother felt inspired to make chicken
Because she found turkey too dry.
After my mom left, my dad and sister and I became Thanksgiving orphans,
Enjoying the holiday in the homes of various friends over the years,
Never having to cook anything, just eating the food.
Thanksgiving became more of a holiday for me when I met Dave
And joined his sweet family for a big boisterous meal,
Serenaded by football on the big screen.
Going around the table at a Thanksgiving dinner
And saying what I was thankful for always felt a bit strange,
Made me feel self-conscious,
Aware that this was not the only day of the year to feel gratitude.
But until now, Thanksgiving kind of just was,
Neither here nor there.

A year ago we were in Israel for Thanksgiving,
Celebrating with other Americans and some Brits at the home of sweet friends we met there
Who made a turkey and hired a DJ.
Dave and I danced, and I wondered why my shoulder and elbow were feeling sore.
The next day I realized that I had the beginnings of shingles.
That's what I mostly remember about last Thanksgiving...

And this: I was already anticipating spending our next Thanksgiving in Cincinnati
With our new baby in a high chair at the family table,
Maybe even two babies.

I guess it's no wonder I am feeling so sad this time around.
I guess it's understandable that Thanksgiving is so acutely reminding me that Tikva isn't here.
I guess I should be gentle and loving with myself for feeling so confused about where I want to spend the holiday this year,
Because there will only be one sweet beautiful baby at the family table this year,
And I feel so stupid for feeling afraid to be with him
Because I don't know what emotions will come up in me that might feel too big to hold,
And I so don't want to be the one to bring the party down
When there is so much reason to celebrate.

It all just makes me want to bury my head in a deep hole and hide.

I just wanted my Baby Girl to be there.
I just wanted her to live.
I just wanted her to be healthy.
How do I make that desire go away?
I'm all in support of desire,
That thing that propels us forward toward our potential.
But what do you do with desire that can't be fulfilled,
Especially when it feels so strong?

Last night Dave said, "This has been a shitty year."
He's right, it has.
And 2008 is the year that Tikva lived and died.
I don't think I have had a bigger year than this one,
And I can't imagine what could make any year still to come big in the way this one was big.

Big like when you're on stage in a play and the spotlight is on you,
Bright and clear and undisturbed,
And the whole theater is silent,
Watching and listening to you.

Then the play ends and the lights go out and it's still quiet but now you're alone,
And a chill runs up your spine as you realize the show's over.
That's how I feel right now,
After the chill when the let-down comes
And it's not a special show anymore
And I'm just me again,
Costumes off, wig off, makeup off,
Bare...
And waiting to be cast in my next role.

To feel that spotlight of grace again...