Like A Ghost

I woke up around midnight last night very suddenly
From a dream about Tikva.
There was more to the dream, but this is what I remember:
Dahlia and I went to look for Dave who was resting in a bed in a guest bedroom somewhere.
Next to him on a pillow was Tikva's body.
She looked like she was sleeping, but we knew she wasn't alive.
She looked peaceful, still pink, still soft.
We all said to her over and over,
We love you Tikva. We love you.
Our words made her open her eyes.
Her eyes were blue, dark blue like Dahlia's.
She looked at us, her eyes looked back and forth at all of us,
So aware of us and what we were saying to her.
I seemed to be the only one who noticed she had opened her eyes
And I tried to get the words out of my mouth:
She opened her eyes! She opened her eyes! We woke her up with our love...
But they kept getting stuck in my throat.
For a moment I entertained the idea that if we just told her we love her enough,
She would stay awake, come back to life.
But I knew this wasn't true.
And I awoke.

This is pretty much how I've been feeling this week,
If only...
The tears are about a millimeter from the surface,
Always almost there
But I didn't really feel like letting them out at work.
I did cry on Tuesday morning watching this
In wonder at the reality that my Tikva is one of these babies,
One of these stories,
So similar, so familiar.
And I cried all over Dave's sweatshirt on Wednesday night
After my longest workday of the week,
Pure exhaustion,
Weariness.
Disappointment that this is all there is now - a regular day at work,
Something so normal and with so little meaning.

Grief and despair call for a lot of energy
And so does the social aspect of work.
For months - even since before Tikva was born - I have been shying away from a lot of social interaction.
Now I have to be around people a lot, and function.
I'm not complaining about having work, but it's hard sometimes;
I do better these days "socializing" remotely.

On Wednesday I woke up feeling like I had dreamed about Tikva.
I couldn't remember anything, but she just felt so close,
So almost there
And that made me so sad, so sensitive all day.

I think the part of her life that haunts me the most is her last day
And how it unfolded until we said goodbye.
In response to one of my posts in November about disbelief, Kate wrote:

I know you know this already, and I'm going to say it anyway because I need to tattoo it onto my own heart, too. You and Dave did not make a decision for Tikva. She made her own decision. The two of you simply helped her, orchestrated her moving beyond in a way that was loving, and on your terms as a family. Whenever anyone says the word 'decision' in your presence just spit twice and throw salt over your left shoulder. Or something. It's never meant badly, but it can echo in your head badly. So banish it.

She's right, so right, and yet this is the irony:
It's not anyone else who is calling it a decision.
It's me who feels that way, who forgets now,
Four months and five days since the day we let Tikva go,
The grace and clarity of heart that held and guided all of us.
I am the one who keeps doubting,
Who keeps asking me to go over the events of that day
So that I can remember how clearly it was time to let Tikva go.

I don't know that I have experienced anything harder than having to make the decision
To take Tikva off all of the machines that kept her alive in order to let her go.
To see her that final day so weary,
So tired of fighting,
So hypersensitive to the tiniest movements around her and in her own body
That could set her off into a horrible episode,
The need to keep her paralyzed so that she could merely survive.

THE REALIZATION THAT IT WAS TIME TO LET MY BABY GIRL REST,
Time to stop trying
Because there was nothing more to try,
Because it was time.

When I think about it now -
And believe me, I don't make myself think about it, it's just there,
So consistently there -
I just can't help see so vividly how we chose to keep Tikva alive with the machine that breathed for her
And all the drugs that supported her everything else.

Was it right to do that? Was it real? Was she really alive?

It makes me feel more and more how thin the veil is that separated Tikva's spirit from her fragile living body.
I wrote to Kate once that when I went to UCSF to see Tikva in the ICN on the 15th floor,
Way up there buried in the thick fog of summer in San Francisco,
It felt like I was meeting her halfway between heaven and earth.
She never felt completely embodied to me,
She always felt part spirit in between her time inside me and her time back to fully spirit.

And yet we tried...
We really tried to help her with all the machines and all the medicine
Until she could do it all on her own.
We hoped that she would get well and no longer need the machines or the medications.
We thought that maybe she just needed a little help for a while,
For a while...
Then I remember how in those last 10 days
She just kept getting worse and worse
Until it was clear.

But could we have done anything more
To bring her back to okay?
To help her over this hump until she could get stronger?
To help her breathe enough so that she could get the oxygen her body struggled for?
Did we keep her alive too long as it was?
Were we ever being realistic,
Us and the doctors in those weeks we thought she was improving?

I haven't had time to let myself ask all these questions all week
Without bursting into tears in my cubicle at work...
So here they all are.
This is the stuff that goes on in my head.

I feel a bit like a ghost here in San Francisco now.
Like somewhere in some parallel universe
There is another me living in Cincinnati with my two healthy daughters - Dahlia and Tikva - and my sweet husband who is still in rabbinical school
Since we all made it home safely from Israel last summer.
I didn't feel like a ghost here when Tikva was still in my belly
Or when she was alive,
But now I do.
I'm not supposed to be here, and yet here I am.
At work only a few people know the road I have arrived here on;
To them I am just me, not a ghost.

Here's how Dave and I see things differently:
For him, being here now, without Tikva, is also strange.
But he finds comfort and pride in knowing that it is the result of the huge choice we made to return here and give our Baby Girl a fighting chance.
That is a glass-is-half-full way of looking at things if I ever saw one.
When I think of it that way, though, it just makes me sad,
Like, I came here to give my daughter a fighting chance and now she's gone and I'm still here, working a job that isn't what I really want to do (writing, nursing), antisocial and feeling like a ghost.
That is a glass-is-half-empty way to see it.

I have to admit that I feel worlds better after I've really let myself cry,
After I've really been able to cry
Because sometimes even though they are just under the surface
The tears still don't come right away.
Eventually though, they do
And I am able to shed yet another layer of the heaviness that likes to hang out
In my shoulders,
In my jaw,
In my temples and the space on my forehead in between my eyes.

It's heavy stuff, having birthed a child who was born so sick,
Having lost her.
I'm still learning how to integrate it into my life going forward,
Knowing that I will always carry her in me.
I wonder if I will ever look at Dahlia or hold her and not think just a little bit about Tikva.
It's not that I'm not being present with Dahlia...
If anything I appreciate her in a way I maybe didn't enough before.
But how can I look at one daughter and not think even a little about my other daughter?
Then Dahlia will say something about Tikva,
Which she does at least a few times each day,
And I'll know that Tikva is there just as much for her Sister
As she is for her Mama.

My mind stills now,
Post brain-dump,
Post tears.
It's almost Shabbat
And I need the rest.