Prayer Followup

Hopefully Toney's surgery will be tomorrow (Tuesday) at UCSF Mt. Zion. I am uncertain of the time depending on Toney’s stability. Right now please pray that the mass in his abdomen is not connected to any main organs - kidneys, large intestine most importantly.

BIG prayers……….

With gratitude.

Tikva Everywhere

My intuition, my connection to all that is, is getting more and more refined.
And I am trusting it, listening to it more.
Choosing to pay attention and see meaning in small and big things.
Choosing to notice the hearts everywhere.

While Dave and Dahlia were out on Saturday, I spent some time at my computer poking around on different blogs and websites.
For some reason, I decided to visit a blog I hadn't looked it in many many months.
It's written by the husband of a woman my age who has successfully overcome lymphoma.
She is the sister of a woman I know, but whom I haven't seen in a long time.
This man writes beautifully, and I read with a new kind of tears this time.

Later that afternoon we all went to Stinson Beach for a friend's birthday.
There, we saw the sister of the woman who survived lymphoma.
I smiled when I saw her, because I had just visited her brother-in-law's blog that very day out of the blue.
Of course.
We talked about the openings created in us when we are able to be present with other people's pain.
Beautiful.

She was nursing her 6 month old son, and Dahlia gravitated to him immediately.
Pangs...
Dahlia loves younger children, loves babies.
Since Tikva came into her life and left again, Dahlia has an awareness she never had before about being an only child.
She has told me she is angry that Tikva went with God and that she wishes Tikva was still here to be her little sister.
She tells me she wishes she was Maia's sister or Jett's sister or the sister of any of her little friends after a playdate.
And she is just so sweet and gentle with babies.
I went to the grief resources website online and ordered some children's books about losing a sibling.
I didn't know there was a catalog for resources about grief and loss...

Laurie and I walked a long ways down the beach and saw large beached jellyfish that looked like placentas.
And little tiny ones that looked like crystal clear stones.
Dahlia and Maia played naked in the sand while their daddies talked.

Sunday we spent the day in Dave's home town, Novato, with some of his oldest friends from high school and college.
Dahlia loved playing with all of their kids, and spent probably 4 straight hours in the sunny warm pool, happy as a mermaid.
I sat in the shade and talked to the moms and the dads, about things that didn't have anything to do with the last 8 months.
At one moment, Tikva popped into my mind suddenly and something made me look up in the direction of the pool.
In that second, a milkweed seed floated by over the happy kids in the water.
I smiled, knowing Tikva was there.
Of course.

Later I was talking to one friend and noticed a bird in the sky.
Definitely not a crow or a turkey vulture or anything smaller.
I kept looking at it as it floated in the wind, not moving at all, just hanging out above us.
It must've been floating there in mid-air for 2-3 minutes.
Then it started to fly, and I could see it was a hawk.
I called to Dave and pointed to the bird, and everyone looked up and smiled.
Liz said to her daughter, "It's Tikva's bird."
I told Dave that the hawk had been floating above us, watching us for a while before flying away.
"Of course," he smiled.
Beautiful.

I went to bed with a headache last night and I still have one today.
The kind of dull tense headache that goes down my neck into my shoulders and doesn't go away for a few days and eventually dissolves.
Strong or mild at different times in the day.
I woke up a few times in the night and had a hard time falling back asleep because of the headache.
I had a lot of dreams, too.
The first time I woke up, I had a song in my head: Send Me An Angel.
I don't think I've thought about that song since it came out in the 80s, but there it was in my head in the middle of the night.
I tell you, Tikva comes to me in the night.

Rosh Hashanah begins tonight.
The new year, 5769.
The other day Dave's dad said he was ready for a new year, a better year, because this past year hasn't been a good one.
I so feel him, so understand him.
In so many ways, I wish it had taken a different turn,
That I would be taking Tikva to High Holy Day services at Chochmat tomorrow.
As I'd imagined, carrying her on my body in a Snugglewrap,
Her little oxygen tank in a backpack on my back.
My prayer, my vision, my deep deep wish.
My desire unfulfilled, and yet still so present.

But letting go of 5768, moving on to a new year, feels sad too.
I don't want to let go of the year when Tikva came into my life,
Into my heart.
I don't want to let go of the time when I carried her inside me for 9 months,
Starting exactly a year ago today on the Jewish calendar.
5768 has been my year of Tikva, my year of the greatest hope ever.
The greatest desire, longing, promise, prayer, vision, LOVE.
Moving into the new year, can I do so and still carry Tikva with me, inside me?
I'm scared to get even further away from her with every day, with every Rosh Hashanah that will unfold from now on.

I can't experience this is a "bad" year - that feels too simple.
Because if I made all of the "bad" go away, could I do so and still have my Tikva?
In 5768, Tikva LIVED.
Tikva was a mighty warrior.
Tikva leaped, risking everything, and she soared.
In 5768, I loved my daughter like I never knew I could love.
I carried her, birthed her, loved her, lost her.
I still and always will hold her, be guided by her.
I will always see her in milkweed seeds,
In hawks,
In hearts,
In butterflies.

In my story, 5768 is the year when I am forever changed.

One of the strangest things about this time:
When I look at pictures of Tikva,
I realize that those images are replacing in my mind's eye
The immediate memories I have of Tikva's little face and body.
In the same way that the photos from my childhood eventually replaced the actual events they captured.

I look at the picture of her at the top of my blog, where she is peaking out from the crook of Dave's arm.
Captured from a video he took when he was alone with her at the hospital,
The day he describes as the last day she was doing well.
The day before the road changed directions so dramatically.
A moment in time that is the closest picture of what Tikva really looked like without all the stuff on her face.
At least in the moments when she was not breathing her last breaths.
When she was doing well, yet still working so hard to breathe.

I look at pictures from the last week of her life,
When she was puffy and rashy and sleeping most of the time,
Almost entirely paralyzed from all the medication.
So fragile, so clearly unable to thrive.

I don't love those images any less than the ones where she looks rosy and able to get better.
I love her completely - every single form of Tikva.
She is always beautiful to me.
I don't know which images are harder to look at...
Those where she is doing well
Or those where she is not.
Both give me pangs in different ways.

I love the picture of Tikva with Lambie on the swing.
I wasn't there for that moment either.
It was captured by Allyson on the ICN Polaroid.
I love it because she looks like a regular old baby there.
Confused by the new feeling of being on a swing.
I love it because she has most of her full head of thick dark hair,
Sticking straight up.
I love it because in it she looks like a photo of me when I was a baby.
I love it because of her funny little face in it,
Her worried expression.
Just real Tikva, funny faced, different than the idealized Tikva that is an angel now.

Chava, our homeopath in Jerusalem, told us that according to eastern medicine, the first child usually resembles the father, and the second usually resembles the mother.
In our case, this is definitely how things unfolded.
Dahlia looks so much like Dave to me, and feels like him energetically
(Though she definitely has a lot of both of us in her emotionally, and a lot that is just purely her).
To me, Tikva looked and felt so much like me.
Old friends of my dad's would tell me that she looked like me.

When I looked into her eyes, it was like looking in the mirror.
Perhaps because she looked like me,
Or maybe because she reflected my essence - the pure love that poured from me onto her.

I know that if she had grown up, she would have looked like me when she was a woman.
I know that she would have been such a pretty girl,
Just like Dahlia is such a pretty girl.
I know that she would have been wise.
I just know she would.

I've added a picture of her to the right...
It is the picture in which, to me, she looks the most like me.
Something just feels so familiar,
Like I am looking at myself.
Maybe it helps me to know how real and really mine she is.
Not mine in the ownership sense,
Because you can't own your children.
But that Tikva the spirit chose me for her Mama.
That my body helped to make hers.
That she came from and out of me.

I still think about what if my body had made her differently,
Free of her diaphragmatic hernia,
Free of the challenge of breathing,
Healthy and well.
For now, I rest in the trust that something so much bigger than me was at play when Tikva's body formed the way it did.
I just can't hold that responsibility for how much she struggled.
Otherwise, I would have to take responsibility for Tikva's eternal journey,
And the incredible and incomprehensible work of Tikva and God.

One more thing that is so strange to realize:
I don't think I got to see Tikva smile.
Maybe because she was so busy working so hard at just being alive.
Or maybe because she died before she got to the age where babies start smiling.

Perhaps I saw her smiling at least at moments with her eyes?
I definitely felt her smiling with her body,
With the sweet comfort she felt when she dissolved in my arms and fell into peaceful sleep,
Her numbers going up to reflect that she was doing well.

But I have no idea what she would have looked like with a smile on her face.
I imagine it may have been like Dahlia's,
Because they both have the same open mouth while sleeping,
The same gorgeous lips.
I imagine it may have been like mine.
But I'm not sure.

I got to hear her cry a little, a few times.
But I can't really know what her loud powerful cry would have been like.
I don't know what her voice would have sounded like,
Or the way she would have formed words with her mouth.

And yet...

I did get to feel her lips against mine.
I did get to taste her drooly bubbles when I kissed her.
I did get to gaze into her pretty and big brown eyes.
I did get to feel and smell her breath.
I did get to touch her soft warm golden skin,
The softness of her hair.
I did get to give her eskimo kisses, nose to nose,
Butterfly kisses against her cheeks.
I did get to squeeze her squishy arms and legs.
I did get to notice that her belly button was shaped like a spiral.
I did get to massage lotion into her skin when it was dry.
I did get to change her diapers and kiss her little tushie.
I did get to rub her soft back with my hand that covered its entire width.

I did know Tikva intimately.
My sweet Baby Girl.
This year, 5768.
Forever changed.

L'Shana Tova.

Prayer Call

For all of you out there who are moved to pray...

Please hold in your hearts a sweet man named Toney, his wife Kat, their two daughters, their son, and their soon-to-arrive new baby. Toney is having surgery on Tuesday to remove a large tumor from his stomach. Kat and Toney's baby will arrive any day. Our prayers go out to them all for healing, wellbeing, endless love and patience, deep trust, and holding. They are surrounded by an amazing extended family, and I am holding them all in a very deep place in my heart.

Thank you.

PS. Thank you to everyone who prayed for my friend's father, Max. He departed peacefully from this world a few weeks ago, surrounded by his loving family.

Grief, Loss and Idealism

(Disclaimer: Everything below is about me, and is part of my process on this complicated journey. I write with no intention of offending. Please know that I love and care for you all deeply, and that I come from a place of love and respect.)

Grief.
Loss.
Two words that are everywhere these days.
In books and articles,
Blogs and websites,
Conversations and thoughts,
Things I write and say myself.

It's true that Tikva isn't lost somewhere.
It's true that I have her with me always, everywhere.
But I have still lost my Baby Girl.
I have still had to say goodbye to my second child.
I still grieve the loss of her,
Her death,
Her illness,
How much she struggled,
The shortness of her life.
Her absence from my arms.

I still have moments every day when I can't believe she's no longer alive.
Moments even when I can't believe she was born so sick.
When I can't believe that the ultrasound doctor really said to us - to US, "There's a problem."
There's a problem with my baby? Are you serious? How is that possible? No way.

Staying away from brand new babies right now feels like the right thing.
It just hurts too much, it's too right there in my face, too noisy and painful.
I'm not sure yet if I feel the need to also stay away from pregnant women.
What's hardest right now is how clueless they seem.
I know that's totally unfair, because what do I know what's going on in their minds.
(Just writing this down is hard, because when I see the words on the page I feel bad for even thinking them.)
After all, how clueless and idealistic and la-la-la was I when I was blissfully pregnant with or holding baby Dahlia?
Why should they feel anything but what they are feeling?
Why wouldn't they completely trust it all?
And what does it have to do with me anyway?

Dave reminds me regularly, "It's not about me."
Same goes for the frustration I feel when I see people I care about smoking.
How can they do that to their lungs when they know my baby died because she couldn't breathe??
Again, it's not about me.
Still, it pisses me off.

And it's probably a good idea for me to stay away from brand new babies and pregnant women.
Otherwise I might say something unfair out loud,
Something that has nothing to do with them and everything to do with me.
Like, "Do you know how incredibly lucky you are that your baby is/was fine?!"

I have felt that way when I think about the children I know who were born at home without having had ultrasounds.
I acknowledged the anger that is in me when I think how lucky their parents are that their babies were born healthy.
That they never had to face the reality of their child being really sick upon birth.
That they never had to face the possibility of regretting their decision after the fact.
Because without an ultrasound, Tikva would have lived probably 20 minutes outside my womb before dying.
She would have had no chance at all of surviving.
And the fact that she didn't survive - even with an abundance of ultrasounds and so much intervention - doesn't change how I feel.
Because I know that we did all we possibly could to give her every chance possible.
I know that because of what we knew from that first ultrasound 8 months ago, we were able to give her 8 weeks and 2 days of the most remarkable love imaginable.
We were prepared emotionally in advance, so that when she was alive we could give her fearless and undistracted love.
With no time wasted on the shock we would have felt if we had not known she would struggle as much as she did.

But you know what?
My friends' children are not mine.
And Tikva was not their daughter.
She chose us for her parents, perhaps because she knew we would help her journey unfold as it was meant to.
If she had been born at home with no ultrasound, to another family, her journey would have been a different one.
And it would have been perfect however it unfolded... right?

I don't know about that.
I think a lot about how little control we have over any of it.
How life unfolds as it does, how little we are in charge.
How all we can do is be completely at peace however it comes together.
Right?

This is where I get stuck.
I get stuck in something I am starting to be really aware of:
That we can't possibly know how we would respond in a situation until we are IN that situation.
It's pointless for me to ask my friends who didn't get ultrasounds the question I have been wanting to ask them:
What would you have done if your baby had been born as sick as Tikva and died, in your arms, at home?
Would you be as peaceful as you hoped you would be no matter how it all unfolded?
It's pointless for me to ask this question because any answer would be meaningless unless they had actually already been through that experience.
Until I found out my baby would be very sick when she was born, I could never have known what I would do upon hearing that.
I could never have known how I would undertake the rest of my pregnancy.
I could never have known all the choices I would make for the life of my child.
Until the day Tikva let us know it was time for us to let her go, I could never have known how I would respond.

When Dahlia was in my belly, Dave and I talked about which, if any, prenatal test we would do.
As first-time parents-to-be, we declared that no matter what we found out, we wouldn't terminate a pregnancy because something was "wrong" with our baby.
So why bother with any tests?
We did one ultrasound and that was it, mostly because we wanted to see our baby.
How could we feel any other way before we had actually experienced what we've now experienced?
And when we found out about Tikva, we still made the decision to continue carrying her to term,
To give her every chance possible to survive and to thrive.
Not a single regret has even entered my consciousness about that.

But knowing what I know now, and having traveled with Tikva on her mighty journey,
Would I do it all again in a future pregnancy?
I don't know.
While I am pretty sure that I could handle anything that came my way,
I don't know that I could watch another child of mine struggle so hard to live.
And yet even here, I can't say what I would do then, because I haven't been there yet.
And hopefully I never will be.

What I do know very clearly is that I will want to know all I possibly can about another baby in my belly.
Prenatal tests I never thought I would do all of a sudden give me a great sense of comfort.
I fully recognize that there are hundreds of complications that cannot be diagnosed prenatally.
I know that babies die in utero for no apparent reason, at every week of gestation.
That more is out of my hands than within my control.
But after all I have seen - both in Tikva's journey and all around us in the ICN - there are things I will want, will need to know.
There are choices I will make not from a place of fear,
But from a place of knowing so much more than I knew when I first became pregnant with Dahlia five years ago.
I am a completely different person than I was then.
I went from planning two homebirths to having both of my babies in the hospital,
To no longer feeling safe having my baby at home, and no longer feeling scared to have my baby in the hospital,
Actually feeling safer having my baby in the hospital.
Funny how things can change so completely.

An older, wise friend reminded me once that consistency is overrated.
I think as I grow older, being flexible and able to change is much more important.

One of the greatest losses of this time for me is the loss of my idealism when it comes to pregnancy and birth.
The loss of that la-la blissed out feeling of being pregnant with everything ahead.
It's not replaced by fear.
It's not replaced by despair or a giving up.
I still have every beautiful hope of getting pregnant again when the time is right,
Of loving another child from that place in my heart that is now forever wide open.
I still hold the promise of birthing and holding and nursing a baby,
Of helping that child grow,
Of growing old with my grandchildren around me.
Simply wanting to have children is one of the most hopeful acts.
Yet I will never take any of it for granted again.
Nothing is guaranteed - none of us has any idea how long we have with each other.
Even my relationship with Dahlia has changed.
Now when she barrels into me with a hug so big it knocks me over,
I hold her tight as long as she needs,
Even if we are already late for school,
And I am conscious to approach her with the most patience I can muster.

Loving unconditionally.
Living completely in the moment.
All the while holding onto hope for many tomorrows together.

Yesterday a public health nurse visited me from the SF Department of Public Health.
She stayed for over two hours and interviewed me for the department's Fetal Infant Mortality Review.
They want to get as much information about all the babies who died somewhere between 20 weeks gestation and one year of life.
Their hope is that all this information will help them be able to prevent infant death in the future.
I shared generously about our experience with Tikva, and hope that one day no baby will have to die of CDH and no family will have to grieve that baby's loss.
It felt good to tell Tikva's story.
It felt empowering to hear myself speak with clarity about her journey.
I felt peaceful, all the while with some tears in my eyes and some disbelief about it all.
The nurse was wonderful, and was so moved when I told her about the graceful way Tikva had left her body in the outside air.
I didn't know there is such a thing as a public health nurse...
I'll add that to my bag of ideas for the future.

I don't know how it will feel to get pregnant again when I'm ready.
I don't know how I'll know that I'm ready, but I'm not worried about that.
I don't know what I will be like as a pregnant mama after journeying with Tikva.
I imagine I will have moments of great joy.
I imagine I will have moments of inconsolable tears.
I imagine it might be healing.
I imagine it might be triggering.
I know only that it will be its own experience entirely,
And that I will be a me I have never been before.
Flexible and ever changing.

Nothing to relive of what has already passed.
Only what is ahead that has yet to unfold.
I imagine it will be as beautiful as it has been so far.
With some bittersweet, some complicated.
Perhaps it will be even more beautiful than I can ever imagine.
That's hard to imagine - more beautiful - but how can I say it won't be?
Isn't it so much about how you choose to look at it all,
What you choose to see?

Early this week as Dahlia and I came home,
I looked out my car window just before pulling into the garage
And saw three hawks circling overhead.
They formed a triangle, and they circled repeatedly
Moving with each circle further and further away from the ocean.
We watched them until they were too far to see.

In yoga yesterday, I felt my heart beating really strong, very suddenly during a pose.
In that moment, I felt Tikva not around me, but inside me, within my beating heart.

Last night next to the faucet of our bathroom sink,
There was a small puddle of water,
And in that puddle were two perfect hearts.


This morning, atop my decaf soy latte, extra hot: another heart in the foam of the soy milk.


The hearts make me smile, they make me think of Tikva.
Why can't she be everywhere all around and within me,
Sending me love?

A Sermon to Myself

I found this today in a book of quotes for Rosh Hashanah:

Lord, I do not ask for the faith to move mountains.
I pray only for the energy to move me.

Prayer is not so much a petition to God,
It is a sermon to ourselves.
He who rises from prayer a better person,
His prayers are answered.

Pray as if everything depended on God.
But live as if everything depended on you.

- Author unknown

When we were still in Israel, I read the two last lines of this in the new prayer book of Reform Judaism.
I remember writing it down in a notebook I kept in my bag,
And then typing it into a blog entry shortly after our 21-week ultrasound of Tikva that revealed her CDH.
It brought tears to my eyes as I still felt so bewildered by such fresh, raw, terrifying news,
And all the unknown ahead.

I don't pray in the classic sense.
I rarely even sit quietly with my eyes closed,
Except maybe in yoga class.
Writing my blog has been my prayer.
Crying has been my prayer.
Sharing stories
And worries
And memories
And hopes
And working through complicated things with friends and family has been my prayer.
Living deeply and having profound relationships with others has been my prayer.
All of these continue to be my prayer.

When we learned about Tikva's condition in Israel,
I prayed for the power to move mountains.
I prayed for a calmness amid the fears.
I prayed for grace.
I prayed for the strength to maintain hope and trust and faith and promise.
I prayed for the stillness and wisdom to listen to my Tikva's spirit since I carried her inside me.
I prayed for the energy to move me... the energy to do it all.
For the faith to let go of ALL that was out of my hands
And trust something much much bigger than me.

Now it isn't time to DO.
Now it is time to BE.
I pray for the ability to remain still enough
So that I can understand even a tiny part of that much much bigger thing.

I am not preparing for High Holy Days this year.
I am not contemplating or reflecting about what I want to leave behind of the old and carry into the new.
For me, for the doer that I am, there is too much action in that.
This year, this Rosh Hashanah and Yom Kippur, I enter the Days of Awe just being.
Just being.
Just me.
My soul continues to open to the wonder,
The complexity,
The mystery,
The sorrow,
The loneliness,
The missing,
The questions and the answers.
That's the most I can do right now.

(Is awe just the other side of the coin that is bewilderment? They're similar, aren't they?)

Karate

Yesterday I took Dahlia to an earlier karate class to see if she would have an easier time being less tired than she feels at the later class.
I realized very quickly that I absolutely cannot take her to the earlier class regularly...
The reason?
There were three moms there holding babies who were right around the age Tikva would be now.
They didn't know me, and there was no way they could've known,
So I can't feel anything negative towards them
For stroking their babies' faces lovingly, unaware of how lucky they are.
It broke my heart and I almost started sobbing right then and there.

Instead, I took a deep breath and connected with Tikva and loved her as she is.
I felt her presence so close to me, her spirit so connected.

And yet the longing for my own child on my body was so strong,
Especially as I saw the big brown eyes of one baby in a sling
And thought of Tikva's big eyes looking at me.
The contrast between that longing and the three babies right in front of me was just too much.

Dahlia will definitely stay in the later karate class from now on...

The Truth

When I tap into the bigger things that are going on in the world, I do so for only a few minutes at a time.
I can't pay attention for much longer than that, or I will get really depressed.
Dave mentions that there has been another bombing in Jerusalem,
Near a cafe that was about 10 minutes from where we lived earlier this year.
Another bombing... How am I supposed to feel about that except sad?
Sad sometimes seems like such a silly and insufficient word for emotion.

At the beginning and end of each day, and many times in between,
I open my blog and look at the pictures of Tikva.
Lately I wonder at what feels like such a huge gap
Between Tikva in body in photos, in video, in the smell of her on her Lambie in the glass jar,
And Tikva in spirit, Tikva I feel all around me, so close especially in the morning that the tears are almost right there
In my eyes.
Is it possible to reconcile these two feelings of Tikva together?
Now that she is spirit, and I can so feel her this way,
How do I relate to the images and feelings and memories of Tikva in her body?
Tikva I held in my arms, smelled, touched, felt so completely,
Held inside me?

I don't have an answer to this question right now.
I'm realizing that soon Tikva will have been pure spirit longer than she was spirit in body.
Or to put it in more basic terms: She will have been dead longer than she was alive.
I don't like the feeling that maybe she was just a dream.
Because she wasn't.
She was real. She is real. She is here with me, and she is also so far away.
At least out of physical grasp.
And that's weird. Just weird.

Do these thoughts make me feel good?
I don't think it's about good or bad.
Right now this is where I need to be - feeling whatever comes.
Both the "good" feeling of knowing Tikva is always with me
And the "sad" feeling of knowing I will never hold her warm body again.

The sad feeling of Stephanie the ICN social worker calling to check in
And mentioning that, while it probably wouldn't feel right for me,
But if I wanted to come, the ICN would be having a Halloween party
For the kids who have gone home and their families.
No, that would be way too strange, and heartwrenching.
It would make me notice the striking contrast that is not where I want my focus to be.
It's enough just to see moms pushing strollers with healthy babies.
That's more than enough already.

Last week I saw two moms from my prenatal yoga class holding their babies in slings.
I was relieved they didn't recognize me.
If they had asked about my baby, I would have told them the truth:

That my Baby Girl was born beautifully,
That she was a mighty warrior who lived an incredible 8 weeks and 2 days,
And that she returned into God's fold too early for me, but exactly when it was right for her.
And that I miss her terribly and will probably for the rest of my life, at least in some way.

I love you, Tikva.
I don't regret a single moment with you.
I wouldn't wish you had never chosen me,
Because then I would never have known you.

Your sister misses you.
Last week she said she was angry you had to go with God,
Because she wanted you to be here with us.
I told her I was angry too.

I have more to write about anger, but I'm too tired tonight.

Come to me in my dreams again tonight.
I will be waiting for you.

Carrying Each Other

Red Tail Hawk carrying a little bird.
My Tikva and me, flying together.
Right now it feels like Tikva is the hawk,
And I am the little bird she carries.

What an incredible honor to have carried her when I did...

(The feather I found in the woods yesterday looks like the brown ones on the hawk in this photo.)

Tikva's Angel

I received this from my dear friend Liz tonight. I love the idea that Tikva and I are each other's angels... eternal.

A baby asked God, 'They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?' God said, 'Your angel will be waiting for you and will take care of you.'

The child further inquired, 'But tell me, here in heaven I don't have to do anything but sing and smile to be happy.' God said, 'Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy.'

Again the child asked, 'And how am I going to be able to understand when people talk to me if I don't know the language?' God said, 'Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.'

'And what am I going to do when I want to talk to you?' God said, 'Your angel will place your hands together and will teach you how to pray.'

'Who will protect me?' God said, 'Your angel will defend you even if it means risking its life.'

'But I will always be sad because I will not see you anymore.' God said, 'Your angel will always talk to you about me and will teach you the way to come back to me, even though I will always be next to you.'

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, 'God, if I am to leave now, please tell me my angel's name.'

God said, 'You will simply call her, 'Mom.'

Eucalyptus Forest

Written in my journal this morning:

I left yoga class right at the beginning - crying.
Something opened and the tears came.
It felt confining to be in class, surrounded.
I pictured myself outside so I left and came here -
Into the eucalyptus forest of Mt. Parnassus.

Tikva came with me and is playing all around.
In the tiny round green bird that came by me.
In the squirrel on a tree branch way above me.
In the leaves and seed pods streaming down onto me from overhead.
In all the crackling noises that make me feel I am not alone.
As if another person is walking somewhere.
Or maybe an animal.

Ivy crawls up the tall trunks of the eucalyptus trees,
Almost to their tops.
I picked some blackberried growing wild.
I can hear the voice of a child in a garden of a house nearby.
Ivy hangs down in vines from a leaning branch of a fallen tree.
A seed pod lands on my head.

Hello!

Hi Baby Girl.
I feel you here,
So close to me.
Comforting me.
How can I miss you when you are here?

Still the tears - maybe grief stored in my body somewhere.
In the fall the leaves fall from the trees to prepare for winter.
It smells good here - crisp and clean and fresh.
Ancient.
I'll come back in the spring to feel everything new come out.
Smell the woods after rainfall.
I know I will smell you then, Tikva.

Red Tail Hawk lives here somewhere.
A nest in one of these trees high above.
I look up.
My cheeks feel cool from the fresh air here,
High above the city.

I see you, Tikva, in the two squirrels who chase each other.
In the rays of sunlight on certain leaves and patches of ivy.
I stood in one of the rays and felt you.
Your essence.
Your pure sweetness.

I see red leaves through the trees to my right,
Glimmering in sunlight against light green just below.
So pretty.

I pictured coming here after you died and doing something loud -
Like beating a drum -
To detach myself symbolically from this place.
But that is not how I feel now.
I am here with you.
As much here as when we were in the mountains last month after sitting shiva.

As much as at home when I watch Dahlia sleeping.
You look alike.
You would have grown up looking alike.
I say hi to you in all the forms you take with me here.

Hi Tikva.

(As I left the forest, I looked down and found a large feather... I am pretty sure it's from the Red Tail Hawk.)

A Little Raw, A Little Peace

Today I got the following message from our dear friend and guide on this journey, Julie, who has been connecting and working energetically with Tikva and me since our pregnancy. When we were still in Israel and I first told her about Tikva and the CDH, she wrote three words I have held since then and continue to hold: Trust her journey.
She continues to remind me to trust my own journey. Julie wrote today:

"This morning I saw a Red Tail Hawk floating high above the top of Bernal Hill where Ari (her dog) and I were walking. It made me think of Tikva and tune into her as I walked meditatively back down the hill.

We had a little conversation, she and I. She said she doesn't regret a day she had in her life. She expressed such deep gratitude for your being there for her, and how you were there for her. She knows you have to mourn because that's the process you're in, but she doesn't want you to ever feel bad for her. She wants you to not focus TOO much on her, to be present with yourself and live your life fully, even now in the rawness of your grief."

What Julie wrote doesn't surprise me. I know she must feel that way - how could she not now that she is no longer burdened by a fragile body that couldn't sustain itself or hold breath in her lungs? I've been talking to Tikva a lot, and I can hear her say, "It's okay Mommy."

Right now I am asking myself this: What is it about me that is so resistant to the idea that I can feel okay, now that Tikva is no longer alive? I still have so many tears - days like today, they linger just under the surface and sometimes I can keep from crying for almost the entire day. I still miss Tikva, and listening to Julie's reminder, I am noticing when it is Tikva I miss, and when it is the idea of her. I don't feel bad for Tikva. When I feel bad for anyone, I feel bad for me. But then I'm not sure if that's entirely it: How can I feel bad that I got to know and love my Baby Girl so deeply, so completely?

Today while I was doing errands in town, I spotted a woman who looked vaguely familiar, peacefully carrying her very new baby in a wrap against her body. A few seconds later, I remembered that she had been in my prenatal yoga class during the spring. Her due date was a month after mine. Lucky girl, to be carrying her little one against her as she took a walk to Starbucks. I dreamed of the day I would be able to carry Tikva in a wrap against my body. But would I trade places with this other mom if it meant that I wouldn't have my Tikva? I wouldn't. And that's the clincher... I only get Tikva in this way, and I have to love her - I do love her - as unconditionally now as I did since before she was born.

I love you no matter what. This is what I told her during those last few days in the ICN. And I know she knows that.

There has been a part of me these last 6 weeks that has a hard time wanting to feel better. There is something comforting in the tears. It feels strange to feel okay. Is the whole point of all this simply to come out stronger and wiser, but without my baby in physical form for the rest of my life? I haven't yet completely understood how this all fits into my greater soul journey - and perhaps it isn't something I will completely understand until it's time for me to join Tikva as a pure part of Source, of God, and nothing else. Hopefully a long long time from now when I'm ninety-something.

A week ago, I got my first period since I became pregnant, and it feels long and endless. It's probably not helping my mood, and it's making my skin zitty and the opposite of the glowy it was during my pregnancy and the two months I was pumping milk for Tikva. In spite of my period, I still don't have much appetite since she died. I am deeply grateful for the meals our community continues to leave at our door - I think without them I would resort to grazing a maximum of 1,000 calories a day of snacks from Trader Joe's. Right now I feel PMMessy even though I'm at the end of my period. I feel weepy, a bit irritable, and less patient than I want to be with Dahlia and Dave.

Maybe I'm being hard on myself... Dave keeps reminding me to be gentle with myself.

In the first few weeks after Tikva died, I had this feeling of having been spit out. Like I had been flung out the 15th floor of UCSF Hospital, where the ICN is, far from where I had originally started before all this, and now I found myself in strange terrain I didn't recognize, flat on my butt, which felt kind of sore. I still feel like that sometimes, but I am recognizing that I don't need to have it all figured out right now.

Trust life, Gal. Flow downstream and just trust something much, much bigger than you.

I have to find work again, and I am craving something that is not too complex right now, yet still interesting. Something I can do 1/2 to 3/4 time but which will provide benefits and medical insurance. I have a lot of incredible talents, and it's time to put them to use professionally again. Yet sometimes when I think about getting a job, rejoining society in regular life, I think, "After all I've been through, the hugeness of it all, this incredible, purposeful journey with Tikva, is this all there is right now? Isn't there something bigger going on?"

I'm scared not to focus on Tikva. Scared to let go of her. Scared to lose her, forget her. She gave me such clear purpose. She opened up a part of me I never knew before, and I don't want to lose that. (So why can't I be as open and unconditionally patient and loving in every moment with my living breathing healthy Dahlia?) How do I allow life to go on without returning to the same old not-always-so-satisfying same old?

I want to live my life fully, but right now the regularness of it feels strange and sometimes dull. I keep myself busy with yoga class, writing, time with friends one on one - which is sweet and feels good - time with Dahlia and Dave, keeping up with the laundry and dishes (and being lazy with the mopping and vacuuming), looking at job postings online. Sometimes the normalcy feels disconnected from all I have experienced in the past year.

I have been reflecting a lot today on love, on unconditional love, and on the idea that it took the hugest love I had to be able to let go of Tikva when it was her time to let go of her body. The words of some dear friends have resonated deeply for me in the past few days, and I would like to share them. Thank you, dear ones, for the reflections that you are for me.

"Reading your words… wondering if you loved her enough? Big sigh, you loved her enough to let her go. I do not know a more selfless, loving gift."

"I think you did the right thing. Every single step of the way. And I think you continue to do the right things. And while I cannot possibly imagine the kinds of doubts you are having, I do understand doubting significant decisions - going back over every tiny detail a million times, agonizing, feeling guilty, blaming yourself. And, while I hope for you that you will pass those feelings and see what the rest of us see - that you made exactly the right decisions, that you did EVERYTHING that you could, that NONE OF THIS is your fault - I hope that you'll be gentle with yourself... that knowing will come when that knowing is ready."

"You or your body, no matter what, did not cause Tikva’s CDH. What you did do was give her LOVE, pure unconditional love. What you did do was give her a chance to complete her journey, however short. What you did do was listen to her and to yourself as her mother to know when it was time to help her to return to God with love and dignity. What you continue to do is love her, hold her spirit, and be her earth mother as much as she is your angel baby."

"My heart has been... reminded that the balm for all of it is to just keep opening your heart to love wider, deeper, truer than ever. To thank life for all of it... every moment, every circumstance, every now as it unfolds. You have journeyed with light pouring out of you, with acceptance your constant wish and challenge, and with love the fuel for endurance and triumph."

My Tikva

I feel my Tikva so close to me when I first wake up in the morning,
As if she is just brushing my face after visiting me in my dreams.
Mornings are hardest because I feel her so close
I could almost touch her,
Almost smell her.
But I can't touch her.
It's easier sometimes to experience her in a butterfly
Or in a milkweed seed flying by,
Or the wind against my face.
Because I know I can't grab those...
Nor would I want to stop them on their journey by.

Hope Springs Eternal

"Hope humbly then; with trembling pinions soar;
Wait the great teacher Death, and God adore.
What future bliss He gives not thee to know,
But gives that hope to be thy blessing now.
Hope springs eternal in the human breast:
Man never is, but always to be, blest.
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come."

-Alexander Pope

I like this painting...
It's titled, Hope Springs Eternal.
It makes me remember that Tikva's spirit
And my own
Are able to mingle together in all that is,
Even if I am still in my body
And Tikva is already fully in spirit.

Words I had to look up:

pinion: the outer part of a bird wing including the flight feathers
(makes me think of Tikva in the red tail hawk)

expatiate: speak or write at length of in detail
(makes me think of all these words flowing out of me onto my blog)

A Week In My Life

MONDAY:
Support group for families who have lost children who were in the hospital and/or very sick, and families who are still caring for these babies.
It was just me and one other mom and the facilitator this time, but usually other families are there, and some come with their babies.
The other mom's baby had died in June.
We shared our stories, and it felt so strange to start at the beginning and have such a definite "ending."
(Is death really an ending, though?)
Not sure that part made me feel entirely good.
It felt good to be there while I was there, I think, but when I came home I felt very sad.
Heavy, maybe from having told Tikva's story from the beginning.
Even more alone.
Afraid that I didn't want to go to a support group where babies - especially sick babies - would be there.
It's not where I am - maybe it would've been more helpful a place while Tikva was alive?
I don't even think that: When she was alive, I was exactly where I wanted to be - with her, caring for her, loving her.
In the present, in the moment, in the pure love of that "being present."
Not sure it's the right support group for me.
Not sure a support group is what I need.

TUESDAY:
Long phone conversation with Tikva's doctor Roberta.
I had so many questions, so much to sort through to quiet my busy doubting fearful untrusting brain.
I wanted her to tell me, "There was nothing more we could have done for Tikva. You made the right decisions the whole way."
In a way, she did tell me that, not in so many words but in feeling.
I don't think I was ready to take that in, though.
Not quite ready to return to that deep graceful place where I just trusted something much bigger and let that energy and my Baby Girl's energy guide me.
Roberta and I also talked about the multitude of prenatal tests that are available to detect so many possible things that can go awry in babymaking.
And so many things you can't detect... There will never be an absolute knowing trust in a future pregnancy.
And yet I have already experienced a pregnancy while holding so much "unknowing," so I think it won't be more scary when the time is right for a next time.
It was still comforting to talk to Roberta, and to run into her a few days later outside Dahlia's school.
Bittersweet: Making a friend because my Baby Girl was in the hospital.

WEDNESDAY:
Acupuncture with Linda. Just what my body needed.
Support group number two, this time for people who had experienced babyloss of any kind.
The meeting was at another campus of UCSF, which I didn't think would be strange since that isn't where Tikva or I had received our care.
But it was weird: The bathroom had the same smell, the same antibacterial soap I had used in the ICN, the same alcohol hand stuff, the same seat covers, the same paper towels, the same study information hanging on the back of the door, and the same "HOT H2O" sign above the sink.
Again it was just me and another woman and the facilitator.
The other woman had had two first trimester miscarriages.
Her pain was as present as mine, her loss as deep.
Yet our experiences were so different.
We shared our stories, and it felt different to tell it from the beginning this time.
Telling it in a different way that felt a little better, because really it's my story to tell in my own way, right?
Then I did something that is classic Gal: I started becoming the helper.
I started to offer words of comfort and guidance to this other woman.
I don't know that that's what I need right now either - to be taking care of someone else.
Still don't know if a support group is what I need.
Wondering if what I need is really to talk more, or maybe to talk less and just let my feelings flow forth through writing.

THURSDAY:
My period arrived for the first time in a year.
Dave's aunt Marty came for lunch to see all 300+ photos of Tikva.
We talked for a long time, then we sat on the couch and looked at the photos.
Recounted Tikva's life and our journey together.
Marty is an amazing listener, and she loves us so deeply.
She gave me space to be right where I am, a mother missing her Baby Girl.
She reminded me that we did everything we possibly could have done for Tikva.
She reminded me that Tikva persevered in the mightiest of ways.
She loves Tikva too - my girl's picture sits on Marty's desk at home.

FRIDAY:
I sent a long email to Tom, Tikva's other special doctor, asking him my unsettled need-more-information questions, many of the same ones I had asked Roberta.
Needing to talk things through a little more, to understand how things unfolded the way they did, how we got to such a different conclusion than where we thought we were going just weeks before.
To make sure we had done the right thing at the right time when we had let Tikva return to God that Thursday night almost 6 weeks ago.
Later we had a playdate with friends and their kids at Ocean Beach to see the Buffalo Bill's Wild West Show exhibit.
Then Shabbat with Dave and Dahlia.
We lit Tikva's candle again just before lighting the Shabbat candles.
I took in some of the light from all three candles and then blew it up and outwards to Tikva in the air.
Then we sang the blessing, slowly.
Dahlia reminded us that Tikva is still part of our family and we still love her.
Dave recited the children's blessing a second time at Dahlia's request, for Tikva.

SATURDAY:
I spent time with an incredible family friend who had lost a child 35 years ago.
I had asked if we could get together earlier in the week, and early that afternoon I went to see her.
She understood me from such a profound and personal place.
She felt my yearning, my unsettled questions.
She felt the wound deep below that was so touched by this experience.
She asked me to explain why I had so many questions about how I might have been responsible for all that happened to Tikva.
She asked me if, even if Tom told me, "You did everything right. There was nothing more we could have done for Tikva. You can trust your heart and intuition completely," would I believe him if I wasn't ready to trust that core knowing, trusting part of myself?
After over an hour together, we had a big hug and I got back in my car to head home.

A few blocks away, my phone rang and I didn't recognize the number.
But something told me to answer it, and on the line was Tom, calling to talk about my questions.
I pulled my car into a parking spot and took out some paper and a pen, and we talked for about 40 minutes.
Tom explained so many things to me that I hadn't understood.
He elaborated on what he and Roberta had already explained about bronchomalacia.
He explained that with the severity of her bronchomalacia, Tikva could never have come home on a portable ventilator.
He explained that at best she would be on a hospital ventilator for years and years, possibly her entire life, and would need 24 hour medical care.
He told me that his heart sank when he saw the film of her bronchoscopy.
He told me he had never seen a baby in her condition survive, because something always got in the way, like infection or pneumonia.
He told me again that Tikva's departure was the most beautiful ending he had ever experienced, and that even though it was cold outside, he could feel the warmth and love in the air.
He understood the doubts and questioning in my words and responded to each one.
We talked about quality of life vs. life at all costs.
Essentially, he told me what I needed to hear: That we did the right thing at the right time for Tikva.
He told me we were extraordinary parents guided by love, with a lot to teach doctors and other parents.
After we said goodbye, I sat there for a minute and thought, "Now I can let go of the doubts. Now I can trust my heart again."

Talking to my friend before the call with Tom, I think something had been opened just a sliver.
(Maybe it had even been opened earlier in the week when I had called her asking if we could get together.)
A crack of allowing, a glimmer of acceptance.
I by no means felt like I was already there, but it was as if I had started to point my ship back in the direction of trusting my inner guidance.
When Tom called, my ship was already pointed in that direction, and his words met me right at the point of my ship.
My friend was right: I could have had that conversation with Tom and been left feeling just as many doubts.
But this time I was ready to hear the medical information and find in it a clear reminder that everything unfolded as best as it possibly could have for Tikva under the circumstances of her challenging medical condition.
50% was my ship ready to turn downstream again.
50% was that I got the answers I needed to my overwhelming questions.

That night we had dinner with Alesia and Andy and their twin boys - Dahlia's age - who had spent their first 2 months also in the ICN, and their baby brother who was born a robust 9+ pounds.
Sweet Alesia, who has held me so completely throughout our journey with Tikva.
Held me from a place of deep knowing, understanding, empathy, compassion.
Crying and praying with me.
With so much love and hope.

In the car on the way to Alesia's, I was telling Dave about my conversations that afternoon.
We were deep in conversation when Dahlia asked out of nowhere from the back seat, "How are babies made?"
"Oh not now," I mumbled, almost pleadingly.
Dave quickly began to explain in much more detail than Dahlia was seeking that the first thing you need is a lot of love between a man and a woman ("In some cases," I said. Times are a changin', after all.)
Then Dahlia said, "And love from a sister."
Then it hit me: Dahlia wasn't actually concerned with how the egg and the sperm come to meet in Mommy's belly, but how the baby grows once it's in the belly.
And she felt completely a part of the love that contributed to Tikva's growing when she was in my belly, and during her life outside.
"You're right," I told her. "Love from the sister is very important to make a baby too."

SUNDAY:
Dahlia had a morning bath, and as she and Dave were in the bathroom, I joined them and gave Dave a big hug.
Watching us hugging, Dahlia said, "Wow, that's a lot of love. Is there a baby coming soon?"
Sometimes I wonder if she isn't already in touch with the baby spirit who is preparing to join our family in the future?
I am sure she was in touch with Tikva even before I knew I was pregnant, or at least very soon afterwards.

Dahlia and I spent the afternoon with Laurie and Maia in Marin.
Just before leaving Laurie's house to go to the park, the friend I had visited Saturday afternoon called to see how I was doing.
She said she had cried the whole way home from our meeting.
I told her about pointing my ship in the direction of acceptance.
How even if I wasn't quite ready to accept it all as it is, at least I could make that my destination, my ambition, my intention.
I told her about talking to Tom, and how amazing it had been to learn more and return to that place of trusting completely in my love for my daughter.
I told her about Dahlia's questions and observations about babies, and her "prediction" about another baby spirit.
She thanked me for sharing all that with her and I thanked her for helping me to open that crack of acceptance.

Laurie and the girls and I drove to Fairfax and settled onto a bench in the shade of a warm park.
In the distance, a live band was playing Beatles covers, and they sounded like we were listening to the Beatles themselves.
(Of course they were playing the Beatles... What else would they be playing?)
Dahlia squealed with delighted from afar when they played "All You Need Is Love" and I told Laurie about how that song was playing in the room the day they had done Tikva's cardiac catheterization.
I remembered her big round brown eyes wide open, so aware that something huge was happening to her, probably also hearing the music for the first time.
She didn't feel afraid to me, and the music comforted me that everything would go well.
The cover band also played "Hey Jude," which was the song that followed "All You Need Is Love" that day in the hospital.

Laurie and I talked for a long time about it all.
About all that had unfolded in the past week.
About my feelings of responsibility for the challenges of Tikva's life.
That maybe my body had been responsible for the hole in Tikva's diaphragm.
That maybe I hadn't been ready to get pregnant when I did because I had recently finished taking prednisone for colitis, and had had colitis for 2 years before that.
That maybe I should have waited a few more months to be stronger.
(Interesting that Dave has not once questioned if his body failed in some way. Smart man.)
That maybe I had been too stressed in Israel, or too sick when I had shingles early in my second trimester.
That maybe I could have done something different to change the outcome... at any juncture of her life in and out of my belly.
That maybe I had some control over something SO MUCH BIGGER AND GREATER THAN ME.

We talked about how my mind works, and what that need for control is about.
About the times in my life when I had been caught so completely off guard.
(Laurie found it funny that I would use such delicate language. Instead, she suggested, "How about sideswiped by a 2-ton truck a few times?")
About feeling responsible on so many levels.
We talked about how my mind needs anchors, and how I have been looking outside of myself for those anchors.
(Like the need to talk everything through with Tom or Dave or Julie or others to feel clear and connected.)
About maybe looking somewhere deep within me now for that anchor.
Like my essential self, you mean?

I talked to Dave more about this when I got home that night.
I asked him what about me, what part of me, is my essential self.
I asked him if he thought my essential self, my core energy, is LOVE.
He said, "Isn't everyone's essential energy just pure love?"
(The bumper sticker that reads, "God is love" comes to mind.)

I think about my mom and my dad and my sister, my family of origin, all of whom I have not been able to save or protect from their own challenges and struggles and pain and sorrow.
Whose journeys I have not been able to change no matter how much I love them.
Whose journeys are not mine to change, because they are theirs and in that they are perfect.
(I'm working on fully grasping this one: The idea that it is all perfect even if it sometimes gets really messy and ugly, even if it doesn't end the way I'd hoped.)
I think about how, very young, something in me came to believe that, if only I can love them enough, my love will be able to make it all better.
How could I believe anything else about Tikva?
Knowing that I could not seal the hole in her diaphragm or grow her lungs for her...
Knowing that I could not do her work for her or take away her pain or struggle...
Maybe then I could make it all better if I just loved her enough.

(Oh, here come the tears.)

But that's just it: I did love her enough.
I loved her in a way I have never loved before.
But was I really loving her completely unconditionally if I hoped my love would fix her?
Or was even that hope conditional?

So now here I am.
Still deeply connected to my little girl who exists completely now as spirit, as angel.
My angel and Dahlia's angel and her own angel self and so many other people's angel.
And I still love her - completely.
I always will.
But now I can't love her conditionally.
I can't love her in the hope that my love will be enough to make her better, to bring her back.
I can only love her - AS SHE IS.
And by loving her that way, NO MATTER WHAT, I have to accept her now.
And in this acceptance, I must release any feelings of responsibility.
Accept that I did not cause Tikva's challenges.

(Oh dear, more tears.)

I accept that she came to fulfill her own journey and that she is still fulfilling it in the freedom of the wind.
I accept that she chose me because she wanted to know the deepest kind of love.
I believe that she bathed joyfully in my most profound love.
And I thank you, Tikva, for choosing me.
I thank you for the gift of understanding what it is to truly love unconditionally.

A Box Full of Hope and Love

Under a small table in the corner of our bedroom live a box and a bag with two glass jars.
In these containers, I keep all of Tikva's things.
Two months of life all in a box and a bag of jars.

I can't really say that all of Tikva's life is in these.
Her life is so much more than things, I know that.
But it's still impressive to see her things all together now.

Here is what they contain...

In one jar are her Lambie and her Duckie.
When I open the jar and breathe deeply from it, I can smell Tikva still.
In the other jar are her blankie, her hat from Alex that she wore outside, and her little kipa she wore during her last 10 days of life.
When I open this jar and breathe deeply, I can smell a different part of her too.

In the bag with the jars are her prayer flags from our blessing gathering in early May.
The flags that hung above her bed in the ICN the entire time she was there - following her when she would change spots.
We would like to have a quilt made with these and a few other items.
Any quiltmakers out there who could help us with this creation?

Then I open her box of treasures and find some other things that will be incorporated into Tikva's quilt:
Two hand-made onesies from Aleta, mom of Deidre, who is married to Dave's cousin Dan and is also new mom to Isaac.
Her personalized onesie from Carol that reads, "I'm Tikva... and they're with me."
Her red silk "camicino" from our Italian friends, Sara and Andrea, that reads, "fortuna.
The blue and green heart hat that Alex knit for Tikva before she was born.

Other things in the box:
The dangling frog flag from Nonno that also hung by Tikva's bedside.
The colorful sign I made in the ICN with the words "Happy" and "Celebration framing" the name "Tikva Ahava".
The bright yellow sign I made during her more difficult final weeks that reads, "Hi. I'm Tikva. Please keep my space extra quiet. Thanks."
A picture Dahlia drew months before Tikva was born which also hung in the hospital - of a rainbow and a bear cave.
More of Dahlia's art for Tikva, which she made at school to hang in the ICN.
Tikva's astrological chart.
An envelope with the dates of Tikva's yarzheit for the next 20 years. (20 years!)
Also in the same envelope: Tikva's ultrasound images.
Dave's notes from when he made her funeral arrangements with Sinai Memorial Chapel and Rabbi Pearce.
The lyrics of "In This Heart" by Sinead O'Connor, which Sharon sang at Tikva's funeral.
A beautiful card from midwife Sue - of a regal fairylike mother and her angel princess baby - that sat on our dresser since May.
CDs with all the photos of Tikva, my pregnancy, the blessing and the celebration.
The rainbow teddy bear that slept on Dave's chest since January 23rd until Tikva died, which Dave said he was ready to put away now.

And then another precious smaller box within the larger box.
A beautiful box the ICN has on hand for when babies die.
A box Elaine put together for us the night Tikva died.
Afterwards when she bathed Tikva and collected her few things we had left behind:

A little hand-knit purple hat that was too small for her head but which sometimes shaded the light from Tikva's eyes.
A little white sock that went on her hand once or twice to keep her from pulling out her feeding or breathing tube.
A cast of Tikva's footprint in a little frame, which Elaine took that night.
A little card with an envelope that holds a lock of Tikva's soft hair.
Her tiny handprints and footprints in blue on white, her name and a little heart below in Elaine's handwriting.
A lavender ribbon tied in a bow with the words, "Thinking of you, Love Elaine."

And in this sweet box - with flowers on the outside from nurse Robin's "family crafts box," and also one of the name labels with Tikva's medical record number that were on everything of Tikva's: charts, records, my pumped and frozen milk, her belongings, her medication.
In this sweet box I have added so many little Tikva things:

Dahlia's rendition of her family - the four of us all dressed like princesses, Tikva the tiniest of all, Dave with the biggest head and the longest princess hair.
Messages from Nonno that hung above Tikva's bed during her last few days.
One ultrasound image of her from May 7th, which Dave had in his car, which followed me into labor, and which sat in my bedside table drawer until a few weeks after Tikva died.
The positive pregnancy test from October 5, 2007.
My ticket stub from the John Mellencamp concert Dave and I went to, with strong encouragement from the nurses, the Saturday before Tikva's passing.
(Symbolizing our sense that Tikva might be doing better, or well enough for us to leave for a few hours. We went to see her that night after the concert, in the quiet of the ICN at night. I told her about the music as she slept.)

The nail file from Sharon that I used to trim Tikva's long perfect fingernails.
An origami flower from Michelle from Tikva's blessing.
My almost entirely faded purple bracelet which allowed me entrance into the ICN - my ID in that place as the parent of an ICN baby.
My other two hospital bracelets from when I delivered Tikva.
A photograph of Tikva's nurses who came to our celebration.
An empty milk bottle with one of Tikva's name labels on it.
A "Posey" wrist band that was used to hold one of Tikva's CO2 sensors on her, or maybe to hold some of her many wires and tubes in place.
(I didn't know Dave had brought this home, and I cried when I found it during the following week.)

Inside the top of the smaller box and also on the outside of the larger one: One of the sticky gold hearts that held Tikva's temperature monitor against her belly.
Receipts from the birthday cake Dave got me on the day of Tikva's surgery, and from the day during my pregnancy when Sharon and I went to buy a nightgown for labor and a shirt for the blessing.
Tikva's insurance cards.
Footprints from the day she was born.
Two index cards with hair from haircuts she had to make room for IVs - June 15th and August 6th.
(Her hair is still so soft and real.)

Some extra Tikva name labels from the hospital.
(I had so many left over unused after she died.)
Two talismans from a Buddhist shrine in Akita, Japan, which KC sent me to protect and bless Tikva.
A tiny green stone turtle from Nonno.
A pewter spoon from Jerusalem, from Elizheva.
A photo of Dahlia petting an iguana, which hung above Tikva's bed.
Two magnets that also hung above her:
One reads, "Hope will find you."
The other, "Spread your wings! Archangel Ariel: 'Do not hold back right now. The timing is perfect, and you are ready to soar!'"
(I looked at that one a lot during Tikva's last days, thinking maybe her angel was telling her it was okay to soar back into God's fold.)

The Jewish children's blessing we brought back from Jerusalem, which sat on my bedside table during my pregnancy, and then rested above Tikva's bed.
A rendition of Tikva by Dahlia; if I remember correctly, it was of Tikva grown up.
A yellow bear mobile I found in the arts and crafts cart to hang near Tikva's bed.
A still-wrapped extra sticky gold heart.
Allyson and Elaine's addresses from the last night we left the ICN.
The card Tom gave us that same night with his email, in case we ever needed to contact him.
An impossible to decipher yellow form that lists all the drugs administered to Tikva on the day of her surgery.
The sign Allyson made on a paper towel that she hung on Tikva's impromptu canopy when she started to get really sensitive to loud noises, which reads, "Beauty rest in progress... Please do not disturb!"
The little blue plastic thing to clean under our nails that came with the scrub sponges at the washing sink in the ICN.
The empty-of-ink purple pen I used to write daily in my journal about the details of Tikva's journey.

Some fortunes that had hung on our refrigerator:
"Now is the time to set your sights high and go for it."
"An unexpected event will soon make your life more exciting."
"Your present plans will be successful."
"Life is a series of choices. Today yours are good ones."

Fortunes from teabags:
"Your destiny is to merge with infinity."
"Open up to infinity and you become infinity."
(I guess this is what it's all about, right? The moral of this story?)

The little paper origami stars I had hung above Tikva's bed on her very last day - the ones that made Dave call me a "living prayer flag" - were buried with her.
(Was I still holding onto hope that day, or did I just want her to feel my never-give-up love till her very last breath and beyond?)
I placed the small cluster of rainbow colored stars in the center of the wooden Star of David that was glued to the top of her small coffin.
I also placed on her coffin a magical purple Dahlia from Laurie's garden, which had a tiny tear of white on a petal in the middle.

I love this box.
I know I am not the only mom who has put together a box like this to hold her child's things.
I know I am not the only one who has opened up a box like this to touch, see and smell these hints of her daughter's life.
These reminders that she really lived, that she really existed, that she was not just a dream.
These spots along the road of a visit through Tikva's days, details that bring back little moments so vividly.
I imagine they will feel just as vivid 20 years from now, after I have honored every anniversary listed on the yarzheit list.
When once in a while I will take the box off a shelf high in my closet (I can already see it there in a closet in a house I have not yet lived in) to revisit its contents and the memories they hold.
Or maybe the clarity of the memories will fade, and I will hold some things in my hand unable to remember why I placed them in Tikva's box.
I don't think so, though...
But if I do forget, I will reread this to remember why each of these things is important.
Important simply because they tell the story of my Baby Girl.
Who really lived - even though she isn't here in her body anymore.

I miss you, Boo Boo.
I miss you, Sweet Girl.
Thank you for the gift of you.

The Most Courageous Act of Love and Hope

Last night I sat on the couch near Dave and we both sat quietly sifting through our emails.
I reread some sweet emails people had written after Tikva died, and moved them to my "Tikva Love" folder to save.
(It is a very full folder.)
I found one from our friend Naamah, who runs the rabbinical program where Dave studied in Israel.
The day after our first ultrasound that detected Tikva's CDH, we sat in Naamah's office and talked - stunned - about our journey ahead.
I remember that Naamah said to us then, "I never really knew fear until I had children."
In her email from early August, after she learned of Tikva's passing, Naamah wrote:

"This special girl will forever be the most courageous act of love and hope...
Nothing can end that...
Not even death."

I've been sitting with that since rereading it last night.
Sitting with the feeling of Tikva as a courageous act.
Her own courageous act.
Tikva as an action, Tikva as a verb.
Active, in no way passive.
With us - her family - to help her in her movement.
To hold her on her journey.
That suits her, actually.

Then there is my other brave daughter, Sweet Dahlia.
Who did wonderfully at the dentist's this morning.
Who ran to give one of her teachers the biggest, most genuine and loving hug in the hallway.
Who holds her Angel Sister Tikva with her everywhere she goes.
So naturally, so completely, any emotions around that totally pure.
Dahlia's teacher told me that Dahlia has been doing a lot of expressing through her art.
Her images all include Tikva right now.
When they did self-portraits, Dahlia's is of her with tiny little Tikva by her side.
Both of their hands look like flowers.
On her place-marker card, Dahlia drew Tikva too.
Tikva is there - she is everywhere - and Dahlia knows this completely.
And perhaps she is also missing Tikva too,
Wanting to make sure she doesn't disappear completely,
And that's why she's making sure we don't forget her.
Like when I tell Dahlia I love her and she says, "And you love Tikva too."
Tikva will be Dahlia's Angel Sister for the rest of her life...

I sit and feel what it's like to have an Angel Daughter.
To have had a living daughter whom I held, and now to have this Angel forever with me.
This Spirit who always felt part angel to me, even when she was alive.
Perhaps she knew she would only be in her little fragile body for a short time.

This morning Dahlia picked up a small photo of me from when I was about her age.
She asked, "Mommy, is this me?"
"No, it's me when I was little."
"How old were you?"
"About your age. I think I was four."
"I'm four and a half!"
Then she asked, "Was I a spirit then?"

She seems to have grasped the idea that before she was born, her spirit was already with us, her parents.
We have told her that on the day of our wedding, we felt the spirits of our children already whirling around in the warm breeze.
She likes that - being present and a part of things even way before she was conceived.
Always being a part of our family.
So why wouldn't she have been there in spirit already when I was four years old?
And why can't Tikva continue to be with us now?

And if Tikva is a verb, and love and hope are active energies...
Then why would they ever stop existing?

I have asked myself many times what I do - now that Tikva didn't survive - with all the hope I felt before and during her life.
Dave keeps saying, "Why do you need to do anything with it? It's just there."
Just there, as energy, active energy.
Hope and love whirling around me, around all who are touched by Tikva, and even everyone else.

Still With Tikva

My t-shirt that reads, "I'm with Tikva" has taken on new meaning.
I am learning to settle into the acceptance of Tikva as she is,
And realizing that I still am very much with Tikva.
I can connect to my essence - to God, to Love, to Source, to Light -
Simply by connecting to Tikva's energy.
Because she knows already that she is very much part of
God-Source-Love-and-Light.

In a text exchange with Julie when we were still in the mountains,
I wrote, "I am learning this new way of being connected to her.
Kind of like how we were connected
Spirit to spirit
When she was in my belly."
For Dahlia, Tikva is her angel sister.
Why can't Tikva be my angel too?

She always felt not completely human in the few months she was in her body.
Still an angel from the angel all babies are before they are born.
Still an angel until she got to return to being only energy again.
Pure Angel.

Thank you for choosing me, Tikva.
If I could have all this pain go away, but it meant I would lose all memory of you,
All experience of you, all connection still and forever to you,
I wouldn't give the pain away, for I would have to give you away too.
I wouldn't want to do that.
You are and will always be a part of me.

Prayers Please

Please pray for our dear friend London's sweet father, Max.
Max just had a massive stroke and is now in a coma in Southern California.
Our prayers go out to Max - for love, healing, quality of life, and peace.
Our prayers hold London and the rest of Max's family.
Please join us in our prayers.
Thank you all.

Only Love

I miss looking forward to all that was ahead.
The last line of my last post.
Like any baby, Tikva was all promise, all hope.
Everything was ahead, and anything could unfold.
Anything.

That is one of the losses I feel right now - the loss of promise.
The loss of being able to exist completely in the moment with Tikva,
Not knowing how long the moment would last,
But knowing that it could continue.

This morning Tikva was in my dream.
She wasn't alive, but her soft little body was there.
In the care of Allyson, who was doing some testing.
She had no wires attached to her.
A few times in the dream Tikva opened her eyes and looked around from side to side,
Allyson explained that they sometimes do that after they've died.

I looked at her cute little face with eyes open.
I spoke to her, told her I missed her.
Then I told Allyson that I knew she wasn't alive anymore,
But it still felt good to talk to her while her eyes were open.
I woke up feeling like she was right there.
She probably was.

I went to bed so sad last night.
Scared, too.
Every once in a while, I had been reading a blog post by other moms who have lost babies.
Not too many, but still finding them once in a while; visiting another mother's loss and grief.
I can't do that anymore, at least not right now.
I feel too deeply for them, my heart just breaks.
I crave a community that understands my experience from a similar experience.
Yet each of us is so different - our babies were different, our experiences are different, the way we experience loss is different.
I think in the end, while we can hold each other gently, compassionately, we are each alone in the part of our personal experience that only we feel.

Stillbirth has been on my mind lately.
All of a sudden I am so aware of yet another way in which women lose their babies.
I know a handful of women whose babies have died late in their pregnancies or during labor.
They share their beautiful stories in such raw honesty.
Yet it is not my experience, and I worry that carrying its energy will just make me more afraid.
More afraid when it is time to get pregnant again.
More afraid at how precarious it all is.
So I pay attention to releasing its energy, if that's possible.
Or separating myself from it, if that's possible.
Caring deeply without absorbing.

Fear is not a fluid energy - it feels stuck and it doesn't move easily within me.
Grief, sadness - these energies are more fluid, they move.
I have always been a "you have to go through it to get through it" person.
This is how I have always encountered the huge challenges in my life.
I go through all of the dark and complex emotions and I come through it in the end.
Often tired and sometimes weary, but clear and more free.

I wonder, though, if Dave has figured out a better way.
Maybe you don't have to go through such dark heavy sticky muck on the road to healing.
Maybe it's possible and completely okay to feel good through this grief?
Who am I to say I have it all figured out?
I really don't.
And this journey is so different emotionally than the others I have been on.

My period came on Thursday, for the first time in a year.
It's a good thing, I know, because it means my hormones are balancing back to normal and that needs to happen if I want to get pregnant again in the future.
A different kind of loss, though - I wasn't supposed to be bleeding right now.
I was supposed to be nursing my daughter.

Seeing very young babies and pregnant women is still hard.
That is part of the same grief.
I wonder if they truly appreciate their blessings.
I ask myself that every day when I am with Dahlia: Am I appreciating this incredible child enough?
Sometimes I do a better job than others.

I went to the cemetery on Wednesday for the first time since Tikva's burial.
I didn't plan it, it was spontaneous.
Driving there I realized it was September 10, and Tikva would have been 3 months old.
Just three months since her birth, and already she's been gone for 5 weeks.

Thankfully it was sunny, which makes Colma kind of a pretty place.
When it's foggy and gray and cold it makes me sad.
But on a sunny day, I notice the hills and the butterflies and the birds and the tiny flowers growing in the grass.
I look around at the gravestones and whisper their Jewish names to hear their sounds on my tongue.
Wondering who they were and how they lived, who they loved and were loved by.


I brought golden daisies in a pot to Tikva.
And to my grandmother Ala at the cemetery down the street.
Tiny yellow flowers had started growing in the grass above Tikva.
Tiny daisies grew in the grass above Ala.

Ala died 23 years ago when she was 72.
She died of pancreatic cancer, and she died younger than she would have without it.
But she died when she was older after living 72 years.
The distance from the time when she died and the fact that she'd died as a grandma makes it easier to visit her grave without tears.
I cried a lot as I sat with Tikva.

I know her spirit isn't there in that cemetery.
But being there where her body was buried made it easy for me to talk to her.
Like in my dream from this morning, I told her how much I miss her.
I told her how much I wish she had lived,
How much I wish she were still with me in my arms,
Rather than floating around me in the breeze.

Then I saw two butterflies playing
And a bird that kept pausing like a hummingbird.
And I knew she was there with me.
In the tiny yellow flowers that had sprouted in the grass, too.
And I just let myself cry for a long time.

I never imagined I would be at the cemetery where my Baby Girl was buried.
Next to babies whose gravestones had only one date, or who had lived a few weeks, a few months, a year.
Again the disbelief that I have a child who died as a baby.
Who was born so sick, with insurmountable hurdles.
Who was so mighty and courageous and beautiful.
Who lived for such a short time.

BUT WHO LIVED.

That is what I said to Dave last night: I am so glad that Tikva lived.
Even though it makes the pain of losing her so great.
She could have been born and not survived her birth.
But instead, SHE LIVED.

My friend Lauren reminds me: Tikva is real. She lived. And she died.
She certainly did live... Oh, how she lived.
And I got to hold her.
And I got to give her my milk.
And I got to touch her.
AND I GOT TO LOVE HER... from the minute she was conceived.
I got to hold her as only a mother can hold her Baby Girl.

In her lifetime, TIKVA KNEW ONLY LOVE.
BOY DID SHE KNOW LOVE.

Disbelief

Sometimes,
Especially when I look at the photos of Tikva
Where she looks round and healthy and so very alive,
I can't believe that she's gone.

Sometimes it's just hard to believe
That someone who was alive not so long ago
Isn't alive anymore.
Especially when it's my Baby Girl.

Sometimes I can't believe
That the road turned so abruptly,
So swiftly,
So permanently.

Not where I wanted to go...
Yet here I am.
No more Tikva in my arms.
Sometimes I just can't believe that.

Sometimes I wish I could have her back.
Even though I know that now I have her in another way.
In my heart.
It's not the same, though.

I miss you little one.
I miss your alive presence in your little body.
I miss holding you, looking at you.
I miss looking forward to all that was ahead.

I miss you.

Donating in Tikva's Memory

Several people have asked where they might make a donation in Tikva's memory. Thank you so much for your thoughtfulness.

Calling UCSF to inquire about the possibilities has been on my list of to-do's since Tikva's passing. About a week after the celebration, I finally felt I had it in me to start making the calls to learn more. It took a while to get in touch with the right people, ask all the questions I had, and gather as much information as possible. I'm nothing if not thorough...

Here are some suggestions for ways to donate - based on my experience with Tikva, the unique needs of babies like her and their families, and ways in which we can help. Thank you for your desire to help other babies who are both fragile and mighty like Tikva. By the way, all donations are tax-deductible.

There are two ways to donate through UCSF:

1. Families come to UCSF from all over California, and in some cases all over the country and from abroad, to get the most advanced care for their children. We saw so many families whose babies were medically transported in from other parts of California, and whose families needed places to stay when they could come be with their children. Sometimes they slept in the waiting room until the social workers could find them temporary housing while there were there. How incredibly blessed we are to have had our own home so close to the hospital, and such a supportive community bringing us meals. How important it was for babies to have the love and presence of their parents there with them as much as possible.

To directly help families who have children in the ICN, there are two ways to donate to UCSF Children's Hospital's "Pediatric Social Work Fund." Donations to this fund are used to help pay for food, housing, transportation and, in particular, unintended medical expenses that families often cannot afford to pay for their children's care - such as co-payments or deductibles not covered by insurance, or expensive medicines or medical equipment.

If you would like to make a donation by check, make them out to: UCSF Childrens Hospital.

In the memo section of the check and/or an attached letter, write Pediatric Social Work Fund - ICN. You can also specify that the donations are in memory of Tikva Ahava Spinrad.

Please send checks to:

UCSF Children's Hospital
Attn: Tara James - Box 0210
505 Parnassus Ave
San Francisco, CA 94143

If you would like to make a donation by credit card, you can do so online in the following way:

Go to http://www.ucsfhealth.org/childrens/about/donation.html.
The second paragraph on the page says "Online" and has a link called makeagift.ucsf.edu. Click on that link on the page.
Select your gift type (gift or pledge).
On the same page, select the Gift Destination as Children's Hospital.
Just below in that same section, select Family Services - Social Work Emergency Services.
Under additional comments, you can specify that you would like your gift to be designated specifically to the ICN. You can also select how the funds will be used - for uncovered medical expenses, room and board for families, transportation costs, etc.
Just below that you can specify that your gift be made in memory of someone (click Yes). This will take you to a Tribute Giving page where you can fill out some or all of the information. If you need it, our address is:

1378 36th Avenue
San Francisco, CA 94122

2. Another wonderful way to help babies is by making a donation to the UCSF Fetal Treatment Center's Kids & Moms Foundation. I spoke with Dr. Harrison, the doctor who was the first ever in the world to do fetal surgeries of any kind. We had met with him early on when we returned from Israel to discuss the possibility of the experimental fetal surgery for babies with CDH. When I sent an email to the Kids & Moms Foundation asking for more information, I received a call from Dr. Harrison directly. He explained that donations to the foundation go to support:

Research to prevent birth anomalies in the future.
Fetal treatments to improve chances of survival and better quality of life once the baby is born.
Neonatal treatments - such as all those Tikva received - to help the child once s/he is born.
Long-term care while the child is in the ICN and after the child goes home.
Additional support for families with children in the ICN (similar to the Pediatric Social Work Fund).

You can make a donation by clicking the Donation button on their website, using a PayPal account (credit cards okay too). When making your donation, you can specify what you would like your donation to support. I would recommend sending them an email (address also on website) after you have made your donation to let them know it is on its way and again specify what you would like your donation to support. If you'd like, you can even specify that your donation support babies with CDH.

I would recommend any project of UCSF's that support the health and wellbeing of children, and also helps their families. The Children's Hospital is an incredible place filled with heart, soul and incredible hope.


To make a more general donation to support research and information on behalf of babies like Tikva everywhere, please visit the March of Dimes website.

With incredible gratitude and love,

Tikva's Family, the Spinrads