Grief, Loss and Idealism

(Disclaimer: Everything below is about me, and is part of my process on this complicated journey. I write with no intention of offending. Please know that I love and care for you all deeply, and that I come from a place of love and respect.)

Grief.
Loss.
Two words that are everywhere these days.
In books and articles,
Blogs and websites,
Conversations and thoughts,
Things I write and say myself.

It's true that Tikva isn't lost somewhere.
It's true that I have her with me always, everywhere.
But I have still lost my Baby Girl.
I have still had to say goodbye to my second child.
I still grieve the loss of her,
Her death,
Her illness,
How much she struggled,
The shortness of her life.
Her absence from my arms.

I still have moments every day when I can't believe she's no longer alive.
Moments even when I can't believe she was born so sick.
When I can't believe that the ultrasound doctor really said to us - to US, "There's a problem."
There's a problem with my baby? Are you serious? How is that possible? No way.

Staying away from brand new babies right now feels like the right thing.
It just hurts too much, it's too right there in my face, too noisy and painful.
I'm not sure yet if I feel the need to also stay away from pregnant women.
What's hardest right now is how clueless they seem.
I know that's totally unfair, because what do I know what's going on in their minds.
(Just writing this down is hard, because when I see the words on the page I feel bad for even thinking them.)
After all, how clueless and idealistic and la-la-la was I when I was blissfully pregnant with or holding baby Dahlia?
Why should they feel anything but what they are feeling?
Why wouldn't they completely trust it all?
And what does it have to do with me anyway?

Dave reminds me regularly, "It's not about me."
Same goes for the frustration I feel when I see people I care about smoking.
How can they do that to their lungs when they know my baby died because she couldn't breathe??
Again, it's not about me.
Still, it pisses me off.

And it's probably a good idea for me to stay away from brand new babies and pregnant women.
Otherwise I might say something unfair out loud,
Something that has nothing to do with them and everything to do with me.
Like, "Do you know how incredibly lucky you are that your baby is/was fine?!"

I have felt that way when I think about the children I know who were born at home without having had ultrasounds.
I acknowledged the anger that is in me when I think how lucky their parents are that their babies were born healthy.
That they never had to face the reality of their child being really sick upon birth.
That they never had to face the possibility of regretting their decision after the fact.
Because without an ultrasound, Tikva would have lived probably 20 minutes outside my womb before dying.
She would have had no chance at all of surviving.
And the fact that she didn't survive - even with an abundance of ultrasounds and so much intervention - doesn't change how I feel.
Because I know that we did all we possibly could to give her every chance possible.
I know that because of what we knew from that first ultrasound 8 months ago, we were able to give her 8 weeks and 2 days of the most remarkable love imaginable.
We were prepared emotionally in advance, so that when she was alive we could give her fearless and undistracted love.
With no time wasted on the shock we would have felt if we had not known she would struggle as much as she did.

But you know what?
My friends' children are not mine.
And Tikva was not their daughter.
She chose us for her parents, perhaps because she knew we would help her journey unfold as it was meant to.
If she had been born at home with no ultrasound, to another family, her journey would have been a different one.
And it would have been perfect however it unfolded... right?

I don't know about that.
I think a lot about how little control we have over any of it.
How life unfolds as it does, how little we are in charge.
How all we can do is be completely at peace however it comes together.
Right?

This is where I get stuck.
I get stuck in something I am starting to be really aware of:
That we can't possibly know how we would respond in a situation until we are IN that situation.
It's pointless for me to ask my friends who didn't get ultrasounds the question I have been wanting to ask them:
What would you have done if your baby had been born as sick as Tikva and died, in your arms, at home?
Would you be as peaceful as you hoped you would be no matter how it all unfolded?
It's pointless for me to ask this question because any answer would be meaningless unless they had actually already been through that experience.
Until I found out my baby would be very sick when she was born, I could never have known what I would do upon hearing that.
I could never have known how I would undertake the rest of my pregnancy.
I could never have known all the choices I would make for the life of my child.
Until the day Tikva let us know it was time for us to let her go, I could never have known how I would respond.

When Dahlia was in my belly, Dave and I talked about which, if any, prenatal test we would do.
As first-time parents-to-be, we declared that no matter what we found out, we wouldn't terminate a pregnancy because something was "wrong" with our baby.
So why bother with any tests?
We did one ultrasound and that was it, mostly because we wanted to see our baby.
How could we feel any other way before we had actually experienced what we've now experienced?
And when we found out about Tikva, we still made the decision to continue carrying her to term,
To give her every chance possible to survive and to thrive.
Not a single regret has even entered my consciousness about that.

But knowing what I know now, and having traveled with Tikva on her mighty journey,
Would I do it all again in a future pregnancy?
I don't know.
While I am pretty sure that I could handle anything that came my way,
I don't know that I could watch another child of mine struggle so hard to live.
And yet even here, I can't say what I would do then, because I haven't been there yet.
And hopefully I never will be.

What I do know very clearly is that I will want to know all I possibly can about another baby in my belly.
Prenatal tests I never thought I would do all of a sudden give me a great sense of comfort.
I fully recognize that there are hundreds of complications that cannot be diagnosed prenatally.
I know that babies die in utero for no apparent reason, at every week of gestation.
That more is out of my hands than within my control.
But after all I have seen - both in Tikva's journey and all around us in the ICN - there are things I will want, will need to know.
There are choices I will make not from a place of fear,
But from a place of knowing so much more than I knew when I first became pregnant with Dahlia five years ago.
I am a completely different person than I was then.
I went from planning two homebirths to having both of my babies in the hospital,
To no longer feeling safe having my baby at home, and no longer feeling scared to have my baby in the hospital,
Actually feeling safer having my baby in the hospital.
Funny how things can change so completely.

An older, wise friend reminded me once that consistency is overrated.
I think as I grow older, being flexible and able to change is much more important.

One of the greatest losses of this time for me is the loss of my idealism when it comes to pregnancy and birth.
The loss of that la-la blissed out feeling of being pregnant with everything ahead.
It's not replaced by fear.
It's not replaced by despair or a giving up.
I still have every beautiful hope of getting pregnant again when the time is right,
Of loving another child from that place in my heart that is now forever wide open.
I still hold the promise of birthing and holding and nursing a baby,
Of helping that child grow,
Of growing old with my grandchildren around me.
Simply wanting to have children is one of the most hopeful acts.
Yet I will never take any of it for granted again.
Nothing is guaranteed - none of us has any idea how long we have with each other.
Even my relationship with Dahlia has changed.
Now when she barrels into me with a hug so big it knocks me over,
I hold her tight as long as she needs,
Even if we are already late for school,
And I am conscious to approach her with the most patience I can muster.

Loving unconditionally.
Living completely in the moment.
All the while holding onto hope for many tomorrows together.

Yesterday a public health nurse visited me from the SF Department of Public Health.
She stayed for over two hours and interviewed me for the department's Fetal Infant Mortality Review.
They want to get as much information about all the babies who died somewhere between 20 weeks gestation and one year of life.
Their hope is that all this information will help them be able to prevent infant death in the future.
I shared generously about our experience with Tikva, and hope that one day no baby will have to die of CDH and no family will have to grieve that baby's loss.
It felt good to tell Tikva's story.
It felt empowering to hear myself speak with clarity about her journey.
I felt peaceful, all the while with some tears in my eyes and some disbelief about it all.
The nurse was wonderful, and was so moved when I told her about the graceful way Tikva had left her body in the outside air.
I didn't know there is such a thing as a public health nurse...
I'll add that to my bag of ideas for the future.

I don't know how it will feel to get pregnant again when I'm ready.
I don't know how I'll know that I'm ready, but I'm not worried about that.
I don't know what I will be like as a pregnant mama after journeying with Tikva.
I imagine I will have moments of great joy.
I imagine I will have moments of inconsolable tears.
I imagine it might be healing.
I imagine it might be triggering.
I know only that it will be its own experience entirely,
And that I will be a me I have never been before.
Flexible and ever changing.

Nothing to relive of what has already passed.
Only what is ahead that has yet to unfold.
I imagine it will be as beautiful as it has been so far.
With some bittersweet, some complicated.
Perhaps it will be even more beautiful than I can ever imagine.
That's hard to imagine - more beautiful - but how can I say it won't be?
Isn't it so much about how you choose to look at it all,
What you choose to see?

Early this week as Dahlia and I came home,
I looked out my car window just before pulling into the garage
And saw three hawks circling overhead.
They formed a triangle, and they circled repeatedly
Moving with each circle further and further away from the ocean.
We watched them until they were too far to see.

In yoga yesterday, I felt my heart beating really strong, very suddenly during a pose.
In that moment, I felt Tikva not around me, but inside me, within my beating heart.

Last night next to the faucet of our bathroom sink,
There was a small puddle of water,
And in that puddle were two perfect hearts.


This morning, atop my decaf soy latte, extra hot: another heart in the foam of the soy milk.


The hearts make me smile, they make me think of Tikva.
Why can't she be everywhere all around and within me,
Sending me love?