Last night was the first StoryWell storytelling event hosted by The Well, a program of The Temple in Atlanta, GA. I was honored to be among six storytellers sharing personal stories based on the theme of permanence. Here is my story, both the audio and the text.

(im)permanence – StoryWell audio

I had a dream that she came out of my belly. She came out to tell me that she was a girl, and that her name was Tikva. She came out to tell me and then she went back inside.

I wasn’t sure what to make of the dream. In the morning I asked my husband, “What do you think of the name Tikva?”

“Hope,” he said. “That’s nice.” That was it, in that moment. It was still early, I was only halfway through my pregnancy. We put the name aside – a possibility. We didn’t know if she would be a girl or a boy.

Ten days later we got in a cab and drove to the other side of Jerusalem for the ultrasound – the big one you have in the middle of your pregnancy. The one to make sure everything is okay with your baby.

We took our older daughter, she had just turned four. It never occurred to us not to bring her. At her ultrasound the doctor had happily told us, “Everything looks perfect. Enjoy the rest of your pregnancy.”

There are three words you never want to hear from a doctor. Three words that change your life forever:

“THERE’S A PROBLEM.”

We had told him we didn’t want to know the sex of the baby, that we wanted it to be a surprise. But as soon as he told us something was wrong, it became so important to know this simple thing that would allow us to connect with our baby.

“She’s a girl,” he told us. Of course she was.

“Tikva,” I said to my husband. “Hope. That’s her name.”

We went home broken. Scared. The known had become unknown. My vision of what awaited my family was blurry. Frightening.

Would Tikva live past the moment of her birth? Would she overcome this imperfection that made her wellbeing so tenuous? Could modern medicine save her so that she could live a long, full life as our daughter?

How long could I keep her inside me, safe and held?

My husband walked to the Western Wall to pray. I gave him my prayer for my daughter on a tiny piece of rolled up paper.

Please, God, don’t make me bury my daughter. I won’t survive.

It snowed outside that January in Jerusalem. The city shut down as its single snowplow struggled to clear the streets. Somehow I made it for a second ultrasound and an amnio.

I made phone calls to specialists all over Israel. I sent emails back home, to San Francisco, connecting with experts there who understood our daughter’s condition. All of them encouraged us to come back home.

I cancelled our lease and packed our suitcases, and we landed in San Francisco the day before Valentine’s Day.

****

She was born 4 months later.

MY TIKVA. MY HOPE.

The moment I pushed her out and my husband cut her umbilical cord, she was swept away to be put on a ventilator.

I developed a love-hate relationship with that ventilator – this machine that kept her alive, weakened her airways, required a feeding tube so she could be nourished by my milk, and made holding her so complicated.

There was a brief period that started around day 30 when she didn’t need the ventilator, only oxygen. The doctors talked to us about what it might look like when we brought her home, how she would need oxygen probably for many months. We were ready for anything.

Please God, just let our daughter come home.

We held so much hope.

Tikva struggled. Our tiny seven and a half pound girl fought for her life. She wanted to stay, I really believe that. But her body was too fragile. She could never get enough air.

On the morning of day 58, as I pumped my milk for her, showered and got dressed, I had a feeling it was time. I didn’t say anything to my husband about what I felt, but later he told me he also knew. I headed to the hospital, and after taking our older daughter to preschool, he met me at Tikva’s bedside.

She had had a rough night in the critical care bay of the NICU. Her oxygen numbers had dropped frighteningly low. Twice the doctors and nurses rushed to her bedside as the words “CODE PINK” resonated over the hospital loud speaker. This time the code pink was for her.

I looked down over her and asked for her guidance. She opened her eyes to look at me and she told me she was done struggling, and it was time for her to go.

Please Tikva, please know how much I will always love you.

We took her outside for the first time in her short life, and her last breaths were of fresh misty air, no ventilator.

I held her as she died, and I did bury my daughter. And I survived.

****

She came out of my belly in a dream that winter to tell me her name was Tikva. She came out of my belly again in summer to teach me these three things:

She taught me how to hold onto hope when everything is unknown.

She taught me that all I needed to do in my powerlessness was to love her unconditionally, for as long as we had together, and forever after that.

And she taught me that everything is both finite and infinite. That nothing is permanent except love. That impermanence makes each moment so incredibly precious. And that we survive our losses and our struggles because even those don’t last forever.

In that time each fall when the milkweed seeds float around, or when I look up to see a red tail hawk flying overhead or perched in a tree, I feel like Tikva is there.

And as soon as those brief moments end and the milkweed and the hawk float away, I know she is still there.

Infinite.

My greatest teacher.