Missing

Yesterday I drove on Lincoln down the hill from UCSF and as I stopped at a light, I looked to my left and there it was - the hospital in all its glory.
I looked at the window on the 15th floor where Tikva's bed would be and just cried.
And for the first time I said this aloud:

Oh Tikva, I wanted you to live. I so wanted you to live.

I'd never said it, and it just hit right at the core of what I am feeling right now.
I miss the hospital because I miss Tikva, and I wish there was a place where I could go to hold her again...

Stark Reality

I have waves of realization throughout the day, where something stark hits me like:
I gave birth to a child and that child died.
That child died before me.
That child died just two months after she was born.
That child lived her whole life in the hospital.
That child was so very sick.

I look at the photo where I am saying goodbye to Tikva, letting her know it is okay to leave her body, and I realize that hers is the same little body I carried and nourished for 9 months, pushed out into the world, continued to love and nourish for 2 more months, and then had to let go.
I GAVE BIRTH to Tikva and now she's gone.
That's not how things are supposed to go.

When this kind of reality hits me, my next thought is usually something like:
I should probably find myself a support group.
Or maybe see a therapist.
I wonder if all of this will ever not feel so strange.
Do I even want it to get to a place where it no longer feels strange?
I wonder if I will ever not miss my Baby Girl.

Real life now peeks out from its perch and tells me that it's time to "move on."
I hate terms like that; they sound trite.
What does it mean to move on?
Am I supposed to let go of this experience, give it closure?
I don't think it works like that this time.

It's going to take time to integrate.
For now I am just here.
Missing Tikva, loving her.

The Story of an Angel

Lorrie, a very special cousin of Dave's, sent us a beautiful card that read, "When we share the beauty of the human spirit, we plant a garden of hope within every life we touch." Inside the card, she pasted this beautiful story which she had written:

One day God went to the angels' bullpen and said: "Who wants to go down to earth for a short time to be a baby? To be the child of two of my most beloveds? To show them the true meaning of selfless love and compassion? To help strengthen their faith, their knowing? To help them deeply understand that they are on their true life paths? To open their hearts? To allow them to trust? To strengthen their belief? To give them the opportunity to give and to receive? To let them feel their community? To let their community support them? To give them the opportunity to feel the full range of human emotions? To be my child in their care for a short time?"

The Angel of Hope and Love raised her hand. "Oh God, pick me, pick me! I can help them feel the love and compassion with grace and gratitude. I can help them open their hearts and souls. In return they will touch countless lives by sharing their journey and guiding others on theirs. I will help make them into the most blessed mother and father; the most blessed nurse and rabbi; the most blessed friends and teachers. They will be glorious in their joy and in their pain. They will inspire all those they encounter. They will carry your spirit and your gift profoundly and forever."

So God sent the Angel of Hope and Love to earth for a short time to be the most sacred teacher. One of pure hope and love. One that touched all that met her and her family. One that will continue to touch thousands of souls. Like the rings of water that ripple across an entire pond from a small stone, her gift of hope and love will bless all of those that hear her story and encounter her family. All of the patients that Gal touches and their families and friends; and all of the seekers, devotees and their families that Dave meets. Tikva's gift of hope and love will live on forever.

Preserves

Just the other day, I received the most beautiful letter with a package of homemade preserves. It was from my friend Hilary, with whom I'd taken a midwifery class several summers ago. Hilary's own daughter, Stella, was born just two days after Tikva. The letter read...

"Dear Gal, David, and Dahlia,

On August 6, my mother arrived from Maine to meet her first grandchild and to help me preserve some of the organic fruits and vegetables that we have raised on our small family farm here in Humboldt county.

On August 7, as we made the apple butter, our baby Stella was uncharacteristically fussy. By evening, she was crying inconsolably but finally fell into a deep sleep around 9:45 pm. I think my Stella and your Tikva were connected all along.

On August 8, I read your blog - as I have done daily for months now - and saw Tikva's beautiful face, free of tubes and utterly at peace. I cried for your loss as we made the salty brine for the dill pickles and pickle relish that morning.

On August 9, I watched David's video journal and absorbed the magnificence of Tikva's final journey. That day, we made the blackberry jam and it seems to be the best I have ever made. As I stirred the rich, purple fruit, I cried tears of joy for the strength and beauty of your family.

Every time you choose to see hope and love, you are seeing the world through Tikva's big, beautiful eyes. Tikva is everywhere because hope and love are everywhere. Because you had the courage to share your family's story, those who have been lucky enough to bear witness to Tikva's life through your writing have that same chance to see the world through her eyes. All over the world, hope and love are getting another chance to thrive because of Tikva and your choice to give her a voice.

One tiny baby. One courageous family. A whole world of healing.

I know your big hearts will heal and your private Tikva will be close by you forever.

With love and respect,

Hilary, Ty and Stella"

Thank you, Hilary. With deep gratitude and mutual respect. The preserves, by the way, are delicious.

Far Away

It's so strange...
Just over three weeks ago, Tikva was alive.
Now she is no longer.
She's not here anymore.

Time moves forward, and I feel like Tikva is further away.
Even while I feel her all around and within me.
I look at pictures of her in all her moments and Tikva in her body feels far away.
Then her smell in her belongings brings her right back.
Yet still far away.

It's been a hard few days for me.
Lots of tears.
Lots of tears.
Lots of tears.
I miss her terribly.
I see babies in carriers in their mothers' arms and I think that I could've had my Tikva in my arms if things had been different.
Sometimes when I see babies who are about 10 months old, I think that I could've had a baby that age in my arms if I hadn't miscarried.

Right now I grieve not only the loss of Tikva, but the loss of both babies I don't get to carry anymore.
And I try to keep the fear at bay, the fear that comes so easily with the sadness.
I try to just BE - HERE - NOW.
Even if here and now hurts.
It's as if the pain is a way to stay connected to Tikva.
And if I stop feeling pain, stop crying, then she will really feel far away.
And it will all feel like a dream I can't be sure really happened.

I miss you, my sweet Baby Girl.
Maybe now you can hold me a little.

Tikva's Nurses

Allyson, Elaine, me, Sue and Robin (Jennifer and Wendy not pictured)

Four of the most special women in the world came to Tikva's celebration yesterday.
They are four of the six women who were Tikva's primary caregivers in those 8 weeks and 2 days of her life.
I love these women.
I admire them completely.
I am filled with endless respect for them.
Yesterday I told them I love nurses so much that I want to be one of them...
And not just because I really want my own scrubs with Snoopy on them.

Having them there yesterday made a magical and already unforgettable day complete for me.
I hold these women as my friends because of the journey they accompanied us on.
Because of the unconditional love they gave to Tikva.
Because of all they witnessed of the intimacy we shared with our Baby Girl.
Because they miss her now that she is no longer in their care.
You can't share all this with someone and not remain friends.

I hugged them a bunch of times yesterday and promised them that I would stay in touch - and I will.
I am really really really good at staying in touch with the important people in my life.

Incredible women, you are my inspiration.
Thank you for the love and care you gave to Tikva so completely.
And thank you for the love and care you gave to the rest us.
And to all the little babies you hold in the ICN.
You are angels among us.
I look forward to the day when I get to join your ranks.
In deep gratitude for all you are and do.

Images

Tonight I downloaded the remaining photos of Tikva from my camera.

Photos I'd forgotten I'd taken from her final weeks...



When she was still on the nasal canula and the doctors were speaking about our bringing her home.



When she seemed to be doing so well, but in reality was working SO HARD to breathe.



Pictures where she already looks like such an old soul...



That in hindsight look to me like she is so tired in her fragile body.



The scar from her surgery healed so much that parts of it no longer showed.



Photos I took during her last few days...



When she was puffy from the paralytic...



Rashy from who knows what, probably all the drugs she was on...



Sleeping a lot, weary looking...



Wearing her little kipa and surrounded by her trusty Lambie and Duckie...





Which Allyson would always place at her side, positioned the same way Tikva was lying.

Photographs from her very last night in the ICN...



As I was letting her know that it was okay for her to return to God...



When Dahlia came to say goodbye and realized that Tikva would not be coming home...



As Roberta hand-ventilated Tikva to keep her breathing just that little bit.

I took many photos of her little body after she had passed.
After we returned from that beautiful courtyard where she breathed real fresh cool moist air.
Photos of the vessel that carried her in this life.
Feeling her no longer there, but still mystified by her body that was still warm even though so clearly no longer alive.
Compelled to take these photos before the moment we left the ICN and would not ever see her in that form again.

The image I posted on my blog the night she died is of that little mighty body after her big mighty spirit left it behind.

Without all of these images, Tikva's story is not complete.
They aren't always easy on the eyes - it's not easy to see a baby so fragile, so worn out, struggling so to live.

But they are Tikva - in all her incredible beauty.
In all her hard earned perfection.
They are my Baby Girl, MY BEAUTIFUL BABY GIRL.
They are my Tikva as she worked so hard.
They are my Tikva as she prepared to leave her weary body behind.
They are us as we listened to her, as we allowed, as we let her go to a better place.
They are her caregivers who held her, who held us.
They belong in Tikva's story.

Turning A Page

This morning as I was getting ready to take Dahlia and I for a playdate with friends...
To get us out of the house so that I wouldn't have to tackle - quite yet - my overwhelming to-do list...
This morning as I was transferring my belongings from my backpack to my smaller purse...
Because I no longer need to carry my backpack with so many things everywhere I've been going around my visits to the hospital...
This morning after waking up at 6:30 a.m. worried that I had ruined my "I'm with Tikva" t-shirt by accidentally putting it into the dryer...
And going downstairs right then to make sure it was okay and bringing it back upstairs to hang it up neatly in my closet before I could try to get back to sleep...
This morning I kept stumbling on things that belonged in Tikva's box...
The purple pen, now empty of ink, that I used to write daily in my journal, noting every detail of all that happened to Tikva each day...
The ins and outs of her ups and downs, the drugs she was on, the changes in the machine settings, the precious moments she got to do regular baby things like fall asleep in our arms or get nourished by my breastmilk...
The positive pregnancy test I saved from October 5, 2007 and brought home from Jerusalem...
Which I remembered also at 6:30 this morning and searched for and found before leaving the house today...
A little blue plastic tool to clean under our nails that came with the sponges we used to scrub our hands and arms upon arrival at the hospital...
Which I had saved in my car all this time and finally took out to put away.

All of which led me to Tikva's box of belongings from her short life, which is actually pretty full...
And then to the bag that sits on top of the box, which holds the things that still carry her smell...
Her Lambie, her soft blankie, her Duckie, her hat from that last night, and the little kipa she wore during her last week of life.

I've been taking a deep breath into each of her belongings almost every day since she departed.
When I smell her it is like she is right there.
I can almost feel her soft warm skin under my hands.
I can almost hear her breathing in all the complicated ways she breathed.
I can almost see her, asleep, awake, sedated, conscious.

I smelled her Lambie and her blankie this morning and the same tears that have hung out just beneath the surface all day since were immediately unleashed...
For about a minute I just cried, deeply.

I spent most of the day talking with Amy while Dahlia played with her daughter Simone.
We didn't talk very much about Tikva until the end of the day, but every once in a while I would think about her and I had to breathe deep in order to keep the tears from coming up again.
Not because I had to - I certainly could've started bawling in front of Amy - and a few times talking about Tikva, about this journey, they came out just a little.

Now I sit in the sunroom...
Where I spent so much of my time during my pregnancy, holding Tikva safely inside me.
Now I listen to the flute music that sounds like what her spirit has always felt like to me...
Light and sweet and slightly melancholy.
Crying the tears I didn't cry all day.
Missing my Baby Girl.

Last night Dave said, "I can't believe she isn't here anymore."

I can't believe she isn't here anymore.

Deep breath today when I woke up and came out of the haze of the early morning and remembered where I was.
Remembered what day it is... the day after it all.
The day after Tikva's celebration yesterday.
The day after our week away in the mountains.
The day after our week of sitting shiva.
The day after Tikva's funeral.
The day after she breathed her last breaths and returned into God's arms.
The day after two months of daily life in the ICN.
The day after four months of weekly appointments at UCSF.
The day after moving into our house in San Francisco.
The day after our month living with Dave's aunt and uncle in Marin.
The day after returning to the Bay Area from Israel.
The day after getting up in front of Dave's classmates and professors and rabbis and telling them we were leaving to get help for our Baby Girl.
The day after that first ultrasound when Dr. Kreisberg said, "There's a problem."
Today is that day... the day after it all.

I am still writing the same story, but today a page has been turned.
The next chapter?
I'm not sure...
Maybe it's more that blank page in between two chapters in a book.

All I can do to keep myself moving forward...
In spite of not knowing exactly where the story is going now that Tikva is gone...
Is to keep writing.

Like the Pumpkins

My dear friend Amy shared this passage from Willa Cather's "My Antonia".
I don't know if she knows that in Russian, Tikva means pumpkin...



"I kept as still as I could.
Nothing happened.
I did not expect anything to happen.
I was something that lay under the sun and felt it, like the pumpkins, and I did not want to be anything more.
I was entirely happy.
Perhaps we feel like that when we die and become a part of something entire, whether it is sun and air, or goodness and knowledge.
At any rate, that is happiness; to be dissolved into something complete and great.
When it comes to one, it comes as naturally as sleep."

Thanking, Loving, Feeling My Daughter

I wrote this last night and read it today at our Celebration of Hope and Love in memory of Tikva:

We’ve been in the mountains for the last week, just the three of us. I’ve spent most of the time listening to the stillness of only the soft wind, gently lapping waves against the shores of Lake Almanor, and crickets at night. Interrupted only by Dahlia’s sweet voice telling me about the great adventures of Lava Girl or various princesses of the day, or asking questions about Tikva, her sister who is with God.

In body, it has been the three of us – Dahlia, Dave and me. In spirit, we have been joined by Tikva. I have felt Tikva so close – in the breeze touching my face, in the milkweed seeds floating by, in the birds and the bats flying overhead, in the light of the sun shining against and through the tops of pine trees. Deep inside my heart. She is so close.

I have cried this week more than I have cried in years. I’ve cried tears I never thought I would cry – for the loss of my daughter. I have wondered if I will ever stop crying. Even while I feel Tikva so close, I grieve for her loss. For the loss of my Baby Girl. For the loss of all that didn’t get to be. For the loss of all that won’t get to be.

And each time I cried this week, I would look up and another milkweed seed would be floating playfully by. “There’s Tikva,” I would say to Dave and Dahlia.

Two questions have occupied my thoughts this past week…

The first question:

If I had been told, on the day Tikva was born, that she would live for just 8 weeks and 2 days, would I have loved her any less deeply, any less completely? No. Because her fragility was always so vivid – because it was something we knew since long before she was born – there was no way to avoid the possibility that she might live just a short time. In fact, we didn’t even know if she would survive the day of her birth.

And yet I did love her completely, deeply, purely. I loved her the most that it is possible to love. I always will. I loved her because there was no guarantee that I would have tomorrow to love her more. I could not have done it any other way. This is unconditional love. This is Tikva’s gift to me. And in this way I was able to give her the love of a lifetime – a lifetime’s worth of love. Complete love. Completely.

The second question:

And what about those moments of hope in Tikva’s lifetime? What happens to those now that I know her body didn’t survive? What happens to the day she was born smoothly and easily stabilized? The day of her smooth and successful surgery? The day she was extubated? The delicious moments I held her as she slept in my arms? The first time she got to have my milk through a tube? The days she was doing so well and making such progress that her doctors talked about our bringing her home?

What happens to those moments of hope? What happens to that hope now?

It is still there. Those moments are Tikva’s gift. That joy remains. It is forever here as pure energy all around us.

That hope is what kept me going – all the way from January 23rd in Jerusalem. That hope is what allowed me to trust Tikva’s journey and help her in its unfolding. It is impossible to exist without hope – that hope is what gave me such profound guidance and meaning. Such PURPOSE.

MY TIVKA GAVE ME PURPOSE.

She still does. Now my purpose is a little less apparent, less obvious, but it is still there:

To love completely.
To be my most pure and complete self.
Deeply connected to God.
In every experience.
In every relationship.
In every moment.
In every interaction.

The day after Tikva departed, I wrote this on my blog:

I am forever changed because of you, my Sweet Tikva.
Changed in a way I can't really explain.
Changed in an irreversible way.
Changed in a way I needed to be changed.
I am a stronger, wiser, more humble, more patient, more grateful and more loving soul because of you, my Tikva.


I will hold you in my heart forever, and I trust that eventually my heart will hurt a little less every day.
I will feel you in every breath of wind that touches my skin.
I will remember you as I breathe deeply my own breaths.
I will lean on you, remember your might and your presence, when life feels hard.
I will share your story with everyone I meet.
You will always continue to touch hearts and lives as you have already.
I promise you this.

I love you, Tikva Ahava.
I love you as my gift to forever lift your spirit into the wind.

Those wispy milkweed seeds that float by look like they are having fun, carefree and light. Tikva’s spirit is now free, forever expanding, boundless and unhindered by the physical. Although I still cry many times a day, all I have to do to feel Tikva now is take a very deep breath. And she is there, around and within me.

Two more things:

First, a special thank you to our friends at UCSF. You never know where on life’s journey you are going to make some very special friends, and I can’t say I expected that it would be in the ICN. But looking back now it doesn’t surprise me at all. With Tikva’s nurses and doctors and all the others who cared for her, we shared in loving and caring for our daughter. We shared unconditional love – love no matter what, love that is given without needing to have it reciprocated. We shared hope – for it is hope that drives every inch of that vast hospital and school. We shared an intimacy and vulnerability that brings you close really quickly. We shared such incredible and mutual respect. Thank you for caring so completely for Tikva, and for loving her.

And finally, my deepest gratitude to all of you – our entire community – for holding Tikva. Thank you for holding our family in so many ways. Furnishing our home, bringing us meals, sharing your hopes and visions, sending us loving emails, praying from the deepest parts of your souls, planting trees in Tikva’s memory, loving both of our girls so deeply.

Thank you for believing in hope and in love with us.

Your faith helps Tikva’s mighty spirit to soar.

For Tikva

written by Ellen, a very special friend to Tikva and our family

One ripple moves the whole pond.
One ripple disturbs the stillness of the whole lake.
One ripple moves the whole pond,
its unbroken surface broken into expanding rings.
The rocks beneath it change color,
the sediment is disturbed, moves on and resettles, resting in a new way, in a new place.
The fish comes up to feed on the insects,
the insects move, the water is disturbed again,
the green brown algae moves.
The lake has changed again.
The surface is the same, the interior is not.

You are the trout in the pond.
We await and watch you.
We marvel at you.
Your color.
Your shape.
Your eyes.
Your sound.
Moved,
the watchers, forever moved.
The lake forever moved.
The algae forever moved.
The insects forever moved.

The ripple of our lives,
the lives you have touched, forever changed.

We are awakened to a new and different place.

You swim on.
The ripples begin anew.

The Night You Were Born

Written August 13-14, 2008

My Dear Sweet Tikva ~

I want to tell you about the night you were born. I want you to know how much I loved you already before you arrived, how deeply I loved you during your short life, and how powerfully I love you still and will always love you.

You brought such hope, such love, such light with you. Such growth. I am forever changed because you chose me to be your Mama. Your passing, your return to God, is still so raw. I know that you are no longer struggling for breath, working so hard as you did from your first day outside of my body. Now it is time for the rest of us to hurt, until the hurt becomes a little less profound each day.

I miss you. I miss you so much.

You were born on a Tuesday at 2:22 AM. On Monday, your Daddy and I must’ve known you’d be here soon, because we sat in the sunroom that morning and talked about you before yet another antenatal testing appointment. We talked about wanting to give you the best possible chance at doing well when you were born, and how it would be best if you came out while you were still thriving inside me. With no drama, no added complications, because you already had a lot to contend with in your body. It was already two days past your due date and the doctors really agreed.

But you didn’t want to come out. You knew you had a good thing inside, where you were safe and warm and held, where you did not have to breathe on your own or digest your own food. Where you received breath and nourishment from your Mama. Of course you wanted to stay inside. I wanted you to stay inside too, which is probably why my body needed a little help to get labor going.

I wish I could’ve kept you inside me forever. I really do. But then how would you have lived out your purpose? And I so looked forward to seeing you, to touching you, to holding you in my arms. I am so grateful that I got to hold you in my arms, to touch your soft skin, to put my hands on your warm back as you slept on your belly so peacefully.

It was a beautiful sunny day that Monday and your Papa and I set off for UCSF for antenatal testing. You continued to do well inside me, and I’d gotten so used to seeing you there inside me on the ultrasound each week, and hearing your heartbeat and watching my contractions on the monitor.

I’d had contractions on an off for a few weeks. About 10 days before your birth, I even went into labor and delivery one evening, bag packed, thinking I was really in labor because I had intense cramping. I had the flu, a nasty one that drained me of all energy and made my body ache, and I had gotten really dehydrated. That caused the contractions, and after 4 hours at labor and delivery and 2 bags of IV fluids, the contractions calmed down and we returned home. We met a really sweet nurse named Deb from Nashville that night. I ran into her on the elevator a few weeks after you were born, and told her that you were doing well. Because I’d had contractions on and off for so long and had called UCSF so many times, they were all waiting for you eagerly both in labor and delivery and the ICN. They must’ve known how important you would be.

After antenatal testing, the nurse called our OB-GYN, and both she and the doctor on duty that day asked me to please go across the street to L&D and have them break my water to get labor going. A little earlier, as I was sitting with the monitors on my belly listening to you move inside me, I got a text message from Julie, who had been working with your energy and mine throughout your third trimester. In it she asked if I was at UCSF, and said that something was telling her that a little external intervention would be a good thing. You must’ve been ready too. Your Daddy and I looked at each other and headed across the street and checked me into L&D. Then your Daddy went home to get my bag of things for the next few days.

They had all been waiting for us, Tikva, and were smiling that I was finally coming in for the real thing. For a few hours before the shift change, I had a beautiful nurse named Therese. She and I were standing looking out the windows of the incredible corner labor room at the view of downtown San Francisco and the eucalyptus trees on Mt. Parnassus when a red tail hawk flew by. Your power animal. Our power animal that has guided us on your journey – our shared journey – since before you were born, and still now after your passing. I sent your Daddy a text message that said, “Red tail hawk just flew by.”

I have felt your spirit soaring with the red tail hawk, and I always will.

It took Therese and another nurse five tries to get my IV in, but I didn’t really mind. I felt peaceful and excited that you would soon arrive. Your Daddy returned with our things and then your Auntie Sharon joined us, and we settled into the beautiful spacious labor room. I set up a birth altar on the windowsill and taped an ultrasound image of you above it. Totems of mine, talismans given to us to protect you, things that eventually joined you in the ICN, pasted above your little bed.

Your Daddy took a few last photos of me with my giant pregnant belly, you inside. I wore a striped brown and beige nightgown that I’d gotten with Sharon a few weeks before, wanting something comfortable to birth you in that wasn’t a hospital gown. Without realizing it, I put on the same nightgown when I went to sleep the night you returned to God. When I woke up the next morning it was drenched in milk that had leaked out of my breasts – yearning for you – during the night.

Nuria, the doctor, wanted to break my water and give me pitocin at the same time to stimulate labor, but I asked her if she could just break my water first and see if the pitocin was even necessary. I had a feeling that it wouldn’t take much, and I wanted to avoid pitocin if I could. I did a guided meditation that our doula friend Rachel had prepared for us, and got ready to have my bag of waters broken.

It was around 11:15 PM when the doctor broke my water, and it was torrential! I knew I had extra amniotic fluid inside me because of your CDH, but I wasn’t prepared for how much water came out of my belly. Lying there, I watched my belly lower and lower until it was more the size of a regular pregnant belly. Truly amazing. I heard Nuria and the nurse comment on how clean the water was, with no blood or meconium in it. That made me smile. Nice and easy, no drama, a smooth delivery for my Baby Girl.

Contractions started almost right away when my water had been broken, and I knew I wouldn’t need pitocin. Pretty quickly, they became painful, and I was feeling them in my back much more than I’d expected. I think I must’ve been a little constipated too, which didn’t help. When the doctor checked my dilation after breaking my water, I was at 5 cm. I think I got a little worried, because I couldn’t find a position that felt comfortable as I breathed through the contractions. They hurt, and I told your Daddy that I didn’t feel relaxed.

I really wanted and needed to feel relaxed. It wasn’t really a thought, just a feeling. I wanted to feel relaxed because there was so much surrounding your arrival that could make me not relaxed. I didn’t know, Tikva, if you would even survive your birth. I didn’t know if the doctors would be able to stabilize you fast enough. I didn’t know if they would be able to stabilize you at all. I didn’t know how long you would live, if you would make it past your first day. Something just told me I needed to be relaxed so that it could all unfold smoothly.

I asked for an epidural, and the sweetest resident named Shelly came to do it. It took her a while, and she wanted to get it in just right, and I had to sit up for her to do it. And you know what? The process of sitting up to get the epidural helped my body to finish dilating to 10 cm! I’ve asked myself since then why nobody – including my own knowledge – told me to sit up or stand up to get my body to finish dilating. I’ve had regrets that I probably didn’t really need that epidural in the end. But I really couldn’t have known it would go so fast. My labor with your sister had lasted 38 hours, and most of those hours I experienced incredibly painful back contractions. I couldn’t do that again, not with all that was ahead once you were born.

In the end, it doesn’t matter about the epidural. It probably actually helped, because once I was at 10 cm and I was wheeled into the OR where you would be born, one of the doctors told me that I couldn’t push yet because the whole team wasn’t completely ready for you. Imagine having to try not to push when the urge is so overwhelming. I think the epidural probably helped to relax me enough that I could hold you in when all I wanted to do was push you out. I had to do this through 3-4 contractions before I was finally told that I could push.

Your Daddy and I had done two private prenatal sessions with our friend Rachel who is a doula, and she had told me about the idea of “breathing” you out instead of pushing. I tried this for 3-4 contractions while I was encouraged to “push!” by the doctors, but you weren’t going anywhere. Funny, how we plan so much, prepare so much, have so many ideas of how we want to do things, and then so much just goes out the window. I finally told myself to forget the breathing and just started to push, to really bear down with each contraction. I loved that, in spite of the epidural, I could still feel my contractions, actually feel pain – even though it was manageable. I loved that I felt totally present and calm during your birth.

And you know what, Tikva? As I bore down, your little head started making its way out. And what I loved the most was that I felt that in my body. I could feel the stretching of my vagina. I could feel that ring of fire I had heard of, something I hadn’t felt with Dahlia. It was amazing, and at one point I reached down and I could feel your head of hair still inside me but making its way out. It felt almost like a ridge, I think it was the bones of your scalp forming a little ridge on your head, which I noticed also for the first few weeks after your birth. I think I pushed 3-4 times, and then your head was out, another push or two and your entire body was out.

AND I GOT TO SEE YOU, ALL OF YOU. Before your umbilical cord was cut and you were whisked away to the set-up room to be stabilized, I got to see you as Nuria held you up above me. You were big, robust, pink, chubby, dark haired, beautiful. And you let out a tiny little almost cry, just enough to let me know you were fine and strong, but not such a big cry to make anyone worry that you had taken in air into your intestines while they were still in your chest cavity. (Your cry was the same one we got to hear again a few days after you were extubated.) Off you went, then, into the set-up room, and the doctors and nurses were waiting for you. I felt such relief at how smoothly it all had gone. I knew you would be okay.

You were born at 2:22 AM on Tuesday, June 10, 2008. You shared a birthday with your grandmother, my mother Orit. I’d had a feeling you would since very early in my pregnancy, sometime during your first trimester.

Your placenta came out quickly and easily, and it was a beautiful one – perfect and round. I still have it in our freezer, and soon I will plant it in Laurie’s garden with a beautiful rose bush that will always remind us of you. We still have to choose the kind of rose we will plant, but I promise you it will be a fragrant one, the prettiest rose you can imagine.

I had the shivers for a while as the epidural wore off, but I was smiling as I was wheeled back to my labor room. A half hour later, Mike, one of the neonatologists who had been there in the set-up room came to tell us that you were stable and we could go see you in the ICN whenever we wanted. He had sparkly eyes and a warm smile, and I felt such relief and joy. Mike was the attending doctor on duty during your last week in the ICN.

I was able to get up and walk and pee quickly, and I was eager to see you, so they got me a wheelchair and your Daddy and I headed to the back bay of the west wing of the ICN, just down a few hallways, to see you. In the middle of the night, in the incredible peace that is night in the ICN, to the room where you would spend almost your entire life. Lights low all around. Your first nurse, Anna, who had been there during your birth, caring for you.

AND THERE YOU WERE. THERE YOU WERE. PERFECT. BEAUTIFUL.

A machine breathed for you and your body lay completely still because you had to be paralyzed so you would not try to breathe on your own while your lower organs were still in your chest. You’d be paralyzed until after your surgery a week later. But none of that mattered, Tikva. All I saw was my perfect Baby Girl. All I saw was YOU. You had been born easily, smoothly, peacefully. You had been born big – seven and a half pounds – and strong. Nothing else was added to the already complicated challenges ahead for you. Just you, my Tikva, ready for it. After so much anticipation, so much preparation, you were finally here, finally outside my belly.

You came out so gently, so fast. I didn’t tear, just had a little abrasion on the inside of my right labia, and I was surprised that it didn’t even hurt and I was able to walk comfortably so soon after your birth. You came out with the same gentleness that I had felt when you were inside me, the same gentleness that emanated from your being for all of your short life.

Now as we sat at your bedside, I just looked at you and thought, “We can do anything.”

Such Hope, Tikva. You brought with you such Hope. We had just overcome the first hurdle – a healthy birth – and everything was ahead of you. I hope you know how much I believed in you, and how none of that is erased by the fact that you are no longer alive. To me, my Sweet, you DID make it. You did so much. So much more than they ever predicted you would. You are the mightiest being I have ever known, I think probably the mightiest I will ever know. Like the red tail hawk that has followed you, you have soared to the greatest heights.

I will miss you, my Sweet Baby Girl. I will always hold you in a place that is raw and pure.

You are in every breath I take and in the wind on my face. I love you.

~ Your Mama Always

The Mountain

For the past few days I have been driving part of a familiar route to pick up Dahlia from karate camp each afternoon.
I take Kirkham to 19th Avenue and make a right.
Kirkham is the street I drove to get to UCSF weekly for my prenatal appointments - and then daily to be with Tikva - the past 5 months.
Kirkham has less traffic than Irving, no streetcar like Judah, less stop signs, prettier houses.
Kirkham would take me straight to Mt. Parnassus, straight to the eucalyptus forest that on foggy days looks like it belongs in Africa.

I had lived in San Francisco for 8.5 years before we moved to Oakland in the summer of 2004, when Dahlia was 5 months old.
In all that time, I don't think I ever once drove past UCSF or even on Parnassus St.
It was as if I didn't even notice this huge and powerful mountain where the fog was always thicker and the wind blew so much stronger than the rest of the city.
A few times I went for a walk in its eucalyptus wilderness, but since I walked to get there, I didn't have the perspective to realize that I was treading on such a huge mountain.

Sutro Tower, the huge radio tower painted red and white, stands high at the top of the mountain.
I had certainly noticed the tower before, but seemed to miss completely the fact that it stood above a mountain.
Strange, to miss something so apparent.
But really, why would it have mattered to me before now?
Why should I have noticed it without being able to see the future?

I took a detour to Dahlia's karate school yesterday to get some shampoo at a health food store.
As I encountered a bunch of no left turn signs, I found myself heading closer and closer to UCSF as I tried to get myself to my destination.
Mt. Parnassus is a vortex of energy and its pull was magnetic.
About 10 blocks away, its presence was haunting.
I could have continued driving all the way into the parking lot, parked my car at Purple H or Blue F and gotten into the elevator.

I stopped at a stop sign for longer than usual and thought, "So much of my energy is still there. I really need to do some work to release that."
Part of me also thought, "Maybe when we leave the state this energetic connection will go away."
But I know how energy works, and I know that a cord could still link me to that mountain even if I were thousands of miles away.
The clearing of energy needs to be conscious.

As I continued to Dahlia's school, I pictured parking my car at the edge of Mt. Parnassus, behind UCSF, where the trail begins.
I pictured walking through the woods, taking deep breaths of eucalyptus filled air.
I pictured crying a long and loud and profound cry.
I imagined feeling Tikva's spirit there and helping to release the part of her soul she may also have left behind in those trees.
I saw myself crumbling to my feet at the realization of just how much energy I have poured into that place.
I felt the incredible gratitude I hold for the care Tikva received there.
I felt the way in which the mountain held all of us on this journey.

No matter how much I am able to release, I think Mt. Parnassus will always haunt me a little.
The place where my daughter was born after so much preparation for her arrival.
The place where she lived her entire short life.
The place where she struggled and succeeded and performed her entire life's work.
The place where she breathed her final breaths on her own.
The place where she died.

I spoke to Tom and Roberta, Tikva's doctors, this morning.
I had a few questions I needed answers to in order to understand in a medical way the unfolding of Tikva's final weeks.
It felt good to talk to them, to get more clarity, more peace.
Tom said he will never forget the experience of being with us in the garden when Tikva died.
Chills up my spine thinking about that night...
I thanked them both for everything.

Is it strange that I am still pulled there?
That I still love that place where I poured so much of my heart?
Where so many others poured so much of their heart for my little girl?

I know that it is time to let go.
Time to say goodbye.
Time to understand in that place deep inside that Tikva won't reappear there if I just drive my car to the hospital and make my way to the 15th floor.
If only it were that easy to have more time with my Baby Girl.

Right now I just want more time with her than I got.
Nothing more profound or complicated, just more time to hold her and smell her and touch her soft skin and look in her eyes.
I had imagined that when they finally took off all of her attachments and tubes and wires, it would be because she was coming home.
Home turned out to be a different place, I guess.

I miss you, Tikva.
I miss you so much, Baby Girl.

My Own Private Tikva

The flow of love that has been coming through our house since we began sitting shiva on Sunday has been amazing.
And it has been hard, draining.
At the end of the evening today, I looked at Tikva's photo on the mantle and realized that I felt very far from her in that moment.
In spite of words I shared with friends about her.
In spite of the fact that we are sitting shiva for her.

I realized that there is a public Tikva that I will forever share with all of the amazing people who have been touched by her journey.
I realized that we are the ones who have chosen - I think through a hand greater than our own - to share our Tikva.
It wasn't a previously thought out idea, it just kind of happened.
Out of a need to rally community to hold us on a difficult journey.
Out of a summoning of prayers for her wellbeing.
Out of our shared thirst - all of us - for a sense of hope and love and faith.

Now Tikva is gone and yet she is still here.
I find myself able most of the time to connect with the idea that her spirit is all around me.
And then I find myself as her mother, Mama just missing her Baby Girl.
The Baby Girl I miss is not Tikva the inspiration, Tikva the teacher, Tikva the Hope.
She is just Tikva the little baby whose life was too short.
Just Tikva my Sweet Baby Girl I wish I could love in her cute little body for longer than 8 weeks, so much longer.

I need time and space now to be with that Tikva, my Tikva.
I need time and space to be with Tikva's spirit as it tickles my face in the wind.
I need time and space to be with my daughter, the Tikva who is just mine, the Tikva only I know and can't share, don't want to share.

I am very connected to my blog, and I will keep writing, but I am going to take a break for a little while, not sure how long.
On Saturday we are going to the mountains for a week, just the three of us, to take a DEEP BREATH.
No computers, no city, no full house.
Just us.
And Tikva in the fresh mountain wind.

A Celebration of Hope and Love

Dear Beloved Community,

While we are in the midst of sitting shiva for Tikva, we cannot help but marvel with appreciation for the hope and love she brought not only to our immediate family, but for the lives she touched among our greater community as well.

We hope you will join us on Sunday, August 24th, noon to sundown, for a Celebration of Hope and Love in honor of our beloved Tikva Ahava. We envision a joyous day together to honor Tikva and the global community that has held her and our family since we returned to the Bay Area to receive care last February.

We have reserved the same beautiful spot where we were married 6 years ago at Stafford Lake Park in Novato, where the warm sun is guaranteed to shine.

Details:

A Celebration of Hope and Love
Sunday, August 24, noon to sundown
Stafford Lake Park, Novato - Picnic Area 2
3549 Novato Blvd
Novato, CA 94947
Park Information

Parking is $8 per vehicle; we encourage you to carpool.

Please bring the following to create a beautiful celebration together:

* A potluck dish or dessert to share
* Grillables to cook up on the large grill (we'll provide the charcoal)
* Your own plates, silverware, cups, serving utensils, and napkins (so we can avoid waste)
* Something to drink and keep you hydrated in the hot sun (coolers are a good idea)
* Blankets, chairs, sun umbrellas to set up on the grass (there are also covered picnic benches)
* Outdoor games and balls to play with
* Musical instruments
* A jacket for the later afternoon/evening, when the fog sometimes rolls in over the hills

Children will make the celebration even more joyous, and there will be lots of space for them to run around. Clean bathrooms are located right at Area 2, and the location has power outlets if you need electricity. We'll make sure there is music to surround us.

No need to RSVP. We look forward to celebrating Tikva's gentle and mighty spirit together on the 24th.

Love,

Gal, David and Dahlia

Milk Sisters

Since Friday, I have been working on stopping lactation.
It's not natural to stop my breasts from making milk so abruptly.
With Dahlia, I slowly weaned over several months when she was a year and a half.
It happened naturally as she nursed less and less frequently with time, at her own pace.
No pain, no engorgement, only a little sorrow at this shift in our relationship.

But it's different now, and also surprising how quickly my body has gotten the message that we no longer need to make milk for Tikva.
I am blessed that I've had no problem making more than enough milk the past two months.
I know that producing enough milk can be challenging and sometimes frustrating for moms.
I am in awe that my milk has flowed so abundantly in spite of the fact that it did so with only the help of a breast pump and my own hands to express it.

But really, I'm not surprised: What kept me going was the knowledge that I was doing it for Tikva.
During a time when I could not do so many of the basic things that mothers usually do to care for their babies, I was able to make milk for my girl.
I was able to make milk that she received.
And I was able to keep my body producing milk in the hope that one day she would nurse at my breast.
Always knowing the possibility that she would not, holding that sadness, but continuing to pump milk nonetheless.

Throughout Tikva's last day in this life, my milk kept letting down with each step we took with her in letting go.
The milk she drank that afternoon and evening through her feeding tube was fresh, pumped just that day and given right away without needing to be refrigerated.

As I grieve for Tikva, I grieve also as I stop making milk.
I grieve that I never got to nurse my Baby Girl.
I grieve that so much milk was stored and will not fill her belly.
I grieve for all the times I was not able to comfort her through her challenging journey by simply putting her at my breast.

The other night I woke up suddenly because my breasts were hurting, throbbing to be emptied.
I started crying, and I went to the freezer to get something cold to put against them to ease the pain.
I didn't have any ice packs, so I took one of the bottles of my frozen milk out of the freezer and held it against my breasts.
Tears flowing down my face as I lay in bed, this cold bottle of milk nestled against my chest, comforting.
When I woke up in the morning I poured the warm milk from this bottle into the dahlia plant that is growing in our sunroom.

A few nights ago I sent an email to a list of parents that I have been a part of since Dahlia was born.
In it, I told a little of Tikva's story and shared my blog.
In it, I offered to share my frozen milk with another baby who might need it.
I received some amazing responses, including many people who were impressed that I would want to share my milk so soon after Tikva's passing.
But what else could I do?
It comforts me to know that the milk is going to the bellies of babies who need its nourishment.
It would break my heart for it to go to waste.
While it does hurt a little to let it go, it also feels healing to give it away.

Two little girls will be nourished by Tikva's milk: Halima and Willa.
Halima's mother had a severe hemorrhage during her birth 12 weeks ago that caused her pituitary to fail so that she cannot produce milk.
Willa was born two months ago with congenital emphysema and had to have surgery during her first weeks to remove the top lobe of her left lung.
I was moved by her own journey, especially the connection with the lungs.
I love the idea of sharing our milk with both of these baby girls.

May you be nourished with love and light as you drink this beautiful golden milk, little ones.
Grow and thrive with its nourishment.
In doing so, you are Tikva's milk sisters.


Halima


Willa

David

Today is our 6th wedding anniversary.
Dave and I got married at the same place where we will be having Tikva's Celebration of Hope and Love in a few weeks.
It seems perfect, because on our wedding day I could feel the spirits of our children whirling in the warmth around us.
We took some time tonight to read our ketubah together, and just now alone I reread my wedding vows. How did I know...

David -

Just before our first kiss I let myself lean on you and your steadiness grounded and calmed me. Later that night you let me calm and steady you. As you sat across from me, something very powerful inside was telling me that the rest of my life had just begun. What a beautiful life it is.

The past year and eight months have been the most magnificent adventure I’ve ever experienced. The work we have done together brings us here beneath the chuppah, to the most precious day of my life. You have become the most important person in my life – the one who knows everything about me, the one I get to share my life with, the one I light the candles with on Shabbat. You hold and comfort me when I feel sad or afraid. You make me laugh. You reflect my most beautiful self. You teach me to relish in the joy of life. YOU ARE MY LIGHT.

I want to walk on this path with you forever, holding your hand without holding you back. I want to support you and light your way should you ever get lost. I am your biggest fan, and I will remind you of your strength and wisdom if you ever have doubts. It is an honor and a joy to walk this road by your side.

Promise me that you will always trust me, hear me, and laugh with me, and I promise that I will trust, hear, and laugh with you. I will be good to you, because you are deserving of tenderness, of gentleness and of respect. And because you are so easy to love. You are such a gentle and soulful man. I am proud to call myself your wife.

Together let us make a family that knows how much we love them and each other. Let’s teach them the stories of where they came from and help them form the stories of where they will go. Let’s build a home together that is warm, nurturing, secure and filled with laughter. Let’s explore the world together, learn together, teach each other, and sing and dance together around the kitchen and in the world. Let’s bring only love and healing to the Universe.

David – Always know and feel from the bottom of your soul how deeply I love you. Because I know how you love me and your love is a gift I receive every day. I thank God for you, for this moment, and for the bright light that surrounds us.

My prayer for us is that we will always be so blessed.

I love you, David. I am here to comfort you always.

Baby Girl

I won't lie:
I miss my daughter.
I miss my child.
I miss my Tikva.
It hurts, especially at the end of the day when the house empties of the bustle of our sweet and loving community and the vulnerability of night returns.
I look at the photo of Tikva as she is breathing her last breaths, and the one of her after she has gone to sleep for the last time, and I think...
A baby isn't supposed to die.
A baby shouldn't have had to work so hard to live.
Tikva looks old and tired and wise, as if she has lived a whole lifetime.
Already the photos begin to replace in my mind's eye the images of Tikva that I saw every day as I went to her at the hospital.
Will I remember what she looked like years from now?
Or will I remember her essence, the feel of her that is indescribable but inside me now?
Will it hurt less tomorrow than it does today, even though today it feels like it hurts more than it did yesterday?

Today I spent a few hours reorganizing Dahlia's room, clearing the clutter and putting away her toys in new containers.
It felt good, soothing, distracting.
Yet there were moments when I realized that Tikva would never have a chance to play with these toys as I'd imagined she would.
When I realized that Dahlia would never get the chance to play with her little sister Tikva.
I always knew I would have two daughters, but I never imagined them not growing up together.

Yesterday I held a friend's 10 week old baby boy.
I was struck by how robust he looked and felt in my arms.
All these weeks I spent with Tikva, I did not see her as my sick child.
In my eyes, she was only my child, my daughter, my sweet baby girl.
But yesterday as I held this little guy, it struck me just how sick Tikva was.
Just how hard it is to be robust when you can't breathe, when you are supported by machines for breath and nourishment, when you are on so many different drugs, when you can't really move very much, when you don't spend most of your time being held.
The other night I watched the videos of Tikva which Dave took over the past month, videos taken when she was doing well.
For the first time, I was able to see something I hadn't seen before: She was working SO HARD to breathe.
She did remarkably well, unexpectedly well for a baby with a CDH as severe as hers.
She got all the way to breathing with a nasal canula for a time, but those breaths took so much out of her.
She used up all her energy and then she got pooped.
And then her fragility became really clear.

I miss you Baby Girl.

Hope

(Thank you, Bryan)

Hope still remains
As a feeling deep inside
Touched by little Tikva
Hope still remains
In the warmth of our community and the strength of their support
Hope still remains
For it must
Hope still remains
and brings with it love

Hope still remains
And caresses us with sunlight and soft breezes
Hope still remains
Carrying blessings
Hope still remains
as a light in the darkest of times
Hope still remains
It is hope that shall fade last in our world.
For when our hope is gone, our humanity is gone
Hope still remains
With Infinite LOVE it surrounds us all and wraps us in the divinity of being
Hope still remains and it always in all ways will

Blessings to little Tikva and David, Gal and Dahlia.
May you always bask in the spark of light that she brought to this world and remember the love she inspired.

Where Is Tikva?

I know where she is...

She is in the soft warm wind that gently brushed my face at the cemetery yesterday.
And in the deep breaths I took at her graveside as her tiny coffin was lowered into a small hole in the ground.
She is every red tail hawk I will see for the rest of my life.
And she is in the kisses I share with my husband and with Dahlia.

Rabbi Pearce read this poem during the funeral yesterday:

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.

As I felt that breeze on my face and the warmth of sun within it, surrounded by blue sky that just for that day replaced the eternal fog that usually covers the cemeteries in Colma, I knew that Tikva was all around me.
Of course the sun shone... Tikva's biggest moments always happened on sunny days.

I miss her still.
I miss the smell of her.
The warmth and softness of her skin.
Her little peaking dragon eye.
Her little hand gripping my finger.
Her little monkey feet with the almost opposable thumbs.
Her button nose.
That soft place on her neck next to her pointy chin.
Her long eyelashes.
Her spiral belly button.
Her tushie with the fur just above it.
Stroking her back as she lay peacefully on her belly.
I miss all of the things I will never get to do with her.
I miss my girl.

God's Garden

God looked around his Garden and found an empty place.
He then looked down upon his earth and saw your loving face.
He put his arms around you and lifted you to rest.
His Garden must be beautiful, he always takes the best.
He knew that you were suffering, he knew you were in pain.
And knew that you would never get well on earth again.
He saw your path was difficult, he closed you tired eyes,
He whispered to you "Peace be Thine" and gave you wings to fly.
When we saw you sleeping so calm and free of pain,
We would not wish you back to earth to suffer once again.
You've left us precious memories, your love will be our guide,
You live on through your parents, you're always by our side.
It broke our hearts to lose you, but you did not go alone.
For part of us went with you, Tikva, on the day God called you home.

Tikva's Gift

A sweet soul posted this note about Tikva on my blog...

"Tikva - you have touched poeple all over the world, literally, through your parents' journals. Through their writings that beared their souls, you have taught me more about love and having faith. I have stopped to think about my life and my family in deeper ways than I have before you arrived. In your honor, I choose to try each day to focus on the important things in life and to deepen the relationships with my children and my husband. You are an inspiration and so are your parents. Go with God, little, powerful child."

The Week Ahead

Please feel free to share this information with others, as I am having trouble sending emails right now...

(Curiously, I had the same problem sending emails when we first shared the news about Tikva's diagnosis from Israel, letting our community know that we were returning to San Francisco for her care. Perhaps difficult news is difficult for even a computer to share.)

**********************************************************************************

Dear Beloveds,

Two nights ago our Tikva returned into the arms of God.

With the help of the UCSF team, we were able to bring her on her bed down from the 15th floor to a secluded garden patio outdoors. We held her in our arms, looking down on our baby girl while she looked up, and into, our eyes, one last time. One by one, the nurses unhooked her from the support that has kept her alive while we whispered to her and sang to her and kissed her goodbye. Free of all life support, Tikva's last minutes and final breaths were of moist, San Francisco night air.

In her brief time in this world, Tikva touched our lives immeasurably. A teacher in the most dignified sense of the word, she will never be forgotten and we are the better for the blessing of being called to be her parents.

For these many months we have been writing and posting images and video on our blogs. We continue to write in these places where we feel so held by your love. Thank you for joining us on this journey, and for continuing to hold us now as we adjust to life - forever changed - without our Tikva.

While her service and burial tomorrow will be for immediate family only, we invite you to share with us during our seven day period of sitting shiva, beginning this Sunday. We will open our home to your love and company each day from 4-7pm, between Sunday August 10 - Friday August 15.

Here is some information about the custom of shiva.

Our address is 1378 36th Avenue, San Francisco 94122.

If you have any questions, please contact my sister Sharon at sharonadam@gmail.com.

We hope you'll understand if we aren't answering the phone very much right now, but we welcome your love in messages and emails.

Please save the date: On Sunday, August 24th, we will be having a Celebration of Hope and Love for Tikva at Stafford Lake Park in Novato, CA from 12 noon until sundown. We hope you will join us, and will send more information about this soon.

Thank you for being such incredible reflections of the bright light of hope and love that Tikva came to teach us. We love and appreciate each and every one of you very deeply.

Gal, Dave and Dahlia

Lambie

Tikva's Lambie joined us for Shabbat tonight.
Before I lit the Shabbat candles and Tikva's candle - all from Tsfat in Israel, bought around the time I had the dream about Tikva - I took a deep breath in Lambie's stuffed animal fur and breathed Tikva's sweet smell.
And I cried deeply.
I lit the candles and took in their light, into my heart and eyes.
Then I blew some of the light from my palms into the wind for my Tikva.

I will do this every Friday night for the rest of my life, Tikva.
I promise you, Sweet Angel, that you will be there with me.
Thank you for sharing your life with me so intimately.
I miss you...

A Beautiful Goodbye

I love my husband so much...

A Breath of Fresh Air

Tikva breathed her last breaths on her own.
Tikva breathed her last breaths with no help from machines.
Tikva breathed her last breaths with nothing on her face, in her nose, in her mouth.
Tikva breathed her last breaths outside - fresh cool moist San Francisco summer air.
Tikva felt the wind and the mist of the fog on her face.
Tikva breathed on her own before her soul flew away on a breath of fresh air.
Hand in hand with God.
Enveloped in God's arms.
Already a part of God... This she knew.

Yesterday we knew it was time to let her go.
Dave and I both knew that morning, but neither of us dared to tell the other.
I wore my Miss Piggy socks for a reason that morning, the ones Dave gave me on my birthday during Tikva's surgery.

We knew even before the bronchoscopy that afternoon confirmed she had a severe bronchomalasia on the right side.
A weak bronchial passage that would not allow enough air into her right lung.
Something that would require ventilation for years, if it were even able to provide enough pressure to keep the airway open, with no guarantee of healing and a lot of long-term damage to her already weak lungs.
What kind of life is that?

Dave and Mark and I went outside for some air and on our way out we saw a young girl, around 7 or 8, in pajamas and a wheelchair, struggling to breathe.
A messenger.
I smiled at her with love.
With no judgement, Dave whispered to me, "Quality of life."

We knew when we looked into Tikva's eyes that she was preparing for her departure.
She opened her eyes several times during the day, even when she was on the paralytic medication, to let us know.
She looked straight at us, directly into our eyes, soul to soul.
And we told her it was okay, that we were ready to let her go with all the love and faith in our hearts.

More and more over the day, Tikva's body affirmed what her spirit was already expressing:
That it was time to leave her fragile body.
That she had worked hard enough and she was tired.
That the most important work she had done since before she was born was to become even more deeply One with God.
That because of this she knew she was safe and she was not afraid.
That she knew we were there to help her on her way, to hold her, to give her the dignified and peaceful departure that she so deserved.

All day I pictured her breathing fresh air, and I started mentioning this to the social worker, to her sweet nurse Allyson, to her main doctor Roberta.
They were ready to make this happen for Tikva.

Dahlia came to say goodbye to Tikva, and she was truly remarkable.
I will never forget her maturity, her pure love, her sadness that Tikva would not be coming home, her faith that Tikva would be going to God.
She left with Tikva's Mickey Mouse and the princess mirror her nurse Wendy had brought her last weekend.
My father, Tikva and Dahlia's Nonno, came to say goodbye, and he brought us his tallit to wrap Tikva in outside and when she is buried, the tallit he was married in.
Sharon and Mark had been there most of the afternoon and they said goodbye.
Grandma had been there in the morning and had said goodbye.

Then it was evening and it was just us.
Dave and me.
Allyson and Elaine, her main day and night nurses since her first days.
Roberta, the CDH doctor who had been holding us since we were in Israel.
And Tom, the attending doctor who had finished his rotation last week but stayed all day yesterday because I think he knew that he needed to be there.

And Tikva. My Sweet Tikva.

They prepared everything - with the help of another nurse and a respiratory therapist - to bring Tikva in her little bed down to an outdoor garden off the 6th floor of the hospital.
One final journey together.

I didn't know this, but for the past 8 weeks I had been looking down on this garden from the back hallway behind the West Wing of the ICN.
I had wondered what it was, without realizing it wasn't on the ground floor.
It was so beautiful there, with flowers and benches, so unlike the inside of the hospital where Tikva had spent her entire life.
Where we had gone every day for 58 days.

I asked Tom, "Do you believe in God?"
He answered quietly, "Yes."
I said, "You have to to work in a place like this, don't you?"
He nodded.
"God is here," I said.

As they got things ready to put Tikva on our laps in this garden, untangling the wires and wrapping her in more blankets, Dave and I looked at Tikva and spoke to her.
She opened her eyes - SO WIDE - and looked straight into our souls.
In that moment I saw her at every age, as if she had lived a whole lifetime, right in that moment, before my eyes.
I saw her wisdom, her ancient soul.
She told us she was ready to return to God's arms.
In her eyes I heard her say, "Thank you."
I heard her say, "I love you."
I heard her say, "I see you."
I heard her say, "Stay with me forever, Mama."

I looked into her eyes and I said thank you to my greatest teacher.
I looked into her eyes and I told her, "I love you forever."
I looked into her eyes and I said, "I see you. I see your soul."
I looked into her eyes and I told her I would always be with her.
I looked into her eyes and I told her I would miss her.
With or without words, I spoke to her - soul to soul.

As Roberta continued to hand ventilate Tikva through her breathing tube, our Baby Girl was placed into our arms.
My father's tallit enveloped her body around many blankets and the little tiny soft pink blanky - Tikva's "mally" - that had covered her since she was born and was now against her skin.
The soft hat that Alex had just knit for her, which Dahlia brought, was on her head, under my hand.
Slowly, gently, Allyson took off the tape holding her breathing and feeding tubes.
All day Tikva had continued to get my fresh breast milk through her feeding tube - pure Mama love - and the flow of milk was stopped as the tube was removed.
We looked at Roberta, who had tears in her eyes, and told her she could stop pumping air and Allyson could take out the breathing tube.

For the first time ever, we saw Tikva's whole face, uninterrupted, pure.
Peaceful.
The face of an Angel.

For the first time in her short life, Tikva took her own breaths.
And in those breaths, she breathed fresh air.
Cool air.
Moist air.
Mist on her face.

Her breaths were short, with space in between.
She breathed for a long time, her right eye peering open just a tiny bit.
As her heart slowed.
As we held her, felt her - spirit whirling around us already, body in our arms.
As we looked deep into her soul.

I sang that moment's version of her special song:

You are my sunshine.
My special sunshine.
You've made me happy
When skies have been foggy.
I know you know dear
How much I love you.
Now it's time for you to fly fly away.

Then I hummed Lullabye, Close Your Eyes.
Comfort as she made her journey from her precious soft warm little body.

As Tikva breathed her last breaths, her own breaths, I asked Tom if he could use his cellphone to take her picture, and this is what he captured.
Pure beauty.
Pure grace.
Pure Angel.

Tom sent me the photo this morning with this message:

"We just wanted to express our deep sadness at Tikva’s passing but our belief that she is now in a better place. She was such a remarkable child and she gave us the gift of 8 weeks. Thank you for entrusting us with her care and thank you for your incredible faith and patience. For all of her difficult moments, we always felt Tikva’s bed space had a special aura of love and tranquility. It was no wonder that so many of us became attached to your family and that she touched so many lives. You are in our thoughts and prayers."

Gusts of wind surrounded us every once in a while and I could feel Tikva's soul already in the breeze.
Then she had left her body, and I realized how peaceful I had felt the whole time.
Just a little fear - fear at her first gasp for air, fear that I would not get to spend the rest of my life knowing Tikva in this incarnation - but complete peace at having given her this departure.
At having offered her these breaths of fresh air.
At having listened to her since before the ultrasound, when she told me her name was Tikva.
When she told me just after the ultrasound to trust her and give her this chance.
When she entrusted me with her care, asked me to share her journey.
Every step of the way, knowing we had done everything right.

I called her my besheret - my "meant to be".
I told her she could go, and she went.
I told her I would always love her.
And I thanked her for her trust, and for the hope and love she has forever left in my heart.

Sometime around 9:45 PM, Tikva breathed her last breath.
This morning when I talked to Stephanie, the ICN social worker who has been with us since my pregnancy, she told me that right around that time she was tossing and turning in bed unable to sleep and Tikva came to her.
This from a tough Jewish broad from New York.
This child touched souls...

We put Tikva back on her little bed and Dave and I recited the mourner's kadish.
We covered her face with the tallit and we went back upstairs.

Dave took down the prayer flags and all the beautiful talismans and pictures and words we had hung above her bed.
Allyson and Elaine gave me their addresses.
I took off all of the bandages and medical tape on Tikva's arms and legs.

I smelled her still warm skin and noticed that her Tikva smell was no longer there.
Just a little, maybe, at the top of her head.

I touched the incredible soft skin on her neck, right next to her pointy chin.
I am going to miss touching her there.
I am going to miss her sweet face.

Pure sweetness, my Tikva.
She has felt so sweet to me since I carried her in my belly.

Elaine put her forehead against mine and said, "Go with God."

Then we said goodbye to Tikva's little body, and to the ICN, and we left the hospital and went to the parking garage with Allyson, who had stayed hours past her day shift to be with us.
Allyson who said her own goodbye to Tikva.

Elaine told us that she would clean Tikva's body and wrap her up in blankets.
Blankets I had brought earlier in the week for her bed, but which she never used on her bed because she was too fragile to move for fear that it would cause a desat.
Blankets which were clearly meant to be for her final day.
Blankets that aren't the ones from the ICN blanket warmer with the little feet on them... I was so tired of seeing those little feet.
I brought her "mally" home because it carries her smell, and I will put it with all of her things in a special Tikva box that I will keep forever.
We will make a quilt with her prayer flags.

Dave held me for a long time while we talked into the night, eventually drifting off to sleep.
In the very early morning, around 4:40 AM, Dahlia came into our bed and asked questions about Tikva and told us she was sad that she would not be coming home.
She asked me when I would have another baby.

I started writing this blog when I was pregnant before Tikva, a second pregnancy that ended in miscarriage after 10 weeks.
The day I miscarried I was in the emergency room, a few days before Passover.
Dave was reading about the Passover seder and I was sitting on the table, waiting to find out what my body would do.
Out of nowhere, I said to him, "What would you think if I became a nurse?"

I've often wondered if that soul I carried for that short time, which always felt tentative and as if it were floating around me rather than within me, was the same soul that came back as Tikva.
A soul that knew the huge work it had to do and wasn't sure it was up for the task that first time around.
A soul that returned when it was ready.
A soul that gave it a mighty try, and truly succeeded.
Exceeded.
Perhaps it was that soul that planted the seed that I become a nurse, knowing that I would need that curiosity and interest to care for her with presence and trust these last 8 weeks and two days.
Perhaps...

I am forever changed because of you, my Sweet Tikva.
Changed in a way I can't really explain.
Changed in an irreversible way.
Changed in a way I needed to be changed.
I am a stronger, wiser, more humble, more patient, more grateful and more loving soul because of you, my Tikva.

I will hold you in my heart forever, and I trust that eventually my heart will hurt a little less every day.
I will feel you in every breath of wind that touches my skin.
I will remember you as I breathe deeply my own breaths.
I will lean on you, remember your might and your presence, when life feels hard.
I will share your story with everyone I meet.
You will always continue to touch hearts and lives as you have already.
I promise you this.

I love you, Tikva Ahava.
I love you as my gift to forever lift your spirit into the wind.