A Week In My Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Oh, here come the tears.)

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

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

(Oh dear, more tears.)

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