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.