gratitude

It’s gut wrenching how much I long for her these days.

A whirl of small brown leaves flies against the windshield of my car as I drive by their tree, almost bare.

Hello, Beautiful…

I feel her close, I really do.

And also, deep in my gut, everywhere in my heart, in all of me – the awareness that my child in her body is missing.

For about a month, we’ve had her picture close by in the dining room of our new home. It’s in a temporary frame… I’m working on something much more grand, much more beautiful. But her sweetest face is there in all its 8x10 glory, peeking out at us as we eat, draw, do homework, putz around on the computer, talk. As I write this.

There she is… and yet that’s not her. It’s just her photograph. Sometimes I feel her there. Sometimes she is in the leaves. Sometimes in the occasional milkweed seed that reminds me of the oh-so-sad-so-terribly-incredibly-painfully-sad week we spent in the mountains after we said goodbye to her. Sometimes in the red tail hawk that flies above Cincinnati, though much less frequently than she did in San Francisco.

When I look at that photograph, I just miss my Baby Girl… in the flesh.

I am reminded each time I look at it just how beautiful she was. And how much she struggled with each breath. That’s when the tears come, when I remember those days in between,

She’s doing surprisingly well… this is what she’ll need in order to come home,

and,

She just can’t get enough air into her small fragile lungs, even with all this support.

That’s when I imagine what it would be like now if things hadn’t turned, if she had come home on oxygen and continued to get stronger.

*****

I know how lucky I am that I got to know her when she was alive. I know how lucky I am that I got to hold her, to kiss her, to sing to her, to touch her soft skin, to look into her eyes as she looked into mine. I know we didn’t all get that in this community of deadbabyparents… I wish we all had. I wish all of our babies were still here, in the flesh, alive and well.

Maybe I have more photos of my baby, but it doesn’t make it easier to have lost her. Nothing can make it easy to lose a child. Easy isn’t a word I identify with anymore. As a word, it feels trivial and doesn’t serve me much. But hard… that feels too simplistic. Sometimes it isn’t hard. Sometimes it just is.

Strange feels more like it these days. Strange because I can simultaneously feel acceptance and disbelief. So many days that is my normal. I still say to Tikva, several times a week, silently or out loud,

Oh Baby Girl… you died. You died.

Then a voice within me will remember, will insist,

But you lived, too. I won’t ever forget that you lived. And for that, I am grateful.

It may have been a blink of an eye, like a daydream… but I wouldn’t trade it in for forgetting the loss of you. Not ever.

*****

I was terrified last year at this time to spend Thanksgiving with our family. I was terrified to be up close and personal with Tikva’s cousin, who was born during the weeks in between my daugther’s birth and her death. I was so scared of being face to face with the reminder that my baby wasn’t there, that he was here and she was not. The fear became something bigger than itself, and I almost spent Thanksgiving separate from my entire family.

But in the end I went. And I sat with this beautiful little boy on my lap, felt his newness, looked into his big brown eyes that reminded me of Tikva’s. And I saw his bright soul, felt his pureness. The ease of being with an uncomplicated soul that a baby is. Connected to him as his own self, not as a reminder of what I didn’t have. He had no idea that he had a cousin who died shortly after he was born. One day he will, and forever he will remind me of the age Tikva would be if only…

But in that moment he was just pure love. And I let myself take that in.

And I looked around at my family all over the house, watching football, taking one more bite of pie while talking and drinking coffee. And I felt so deeply grateful for every single one of them who had held me together before, during and since Tikva’s life. The loss of the months leading up to last Thanksgiving didn’t take away my gratitude for all that remained.

I felt I was still here because of them. Because of my husband and my incredible and brave older daughter, my Dahlia. Because of my sister and my father and my family and my friends – my community. Because of my city, my ocean, my park to walk in, my hawks flying above. My yoga classes to cry silently in. My work to go to for a day’s worth of distraction from my thoughts, and time to read a babylost blog when I needed to go in.

And because of this place I stumbled upon in the early months after Tikva’s death. Where I breathed a sigh of relief that I wasn’t alone, and soon felt the uncomfortable mingling of that relief with the realization that the only way I could not feel alone here was for other parents to also have lost their babies. Where you just get it without my having to explain.

Thank you.

*****

I’m not much for holidays honoring consumerism and the massacre indigenous peoples. I’m not a huge fan of turkey and the gluttony that accompanies this holiday, especially when I know that many of us aren’t blessed to eat every day, much less such a feast. But I do get swept up – just a little – in taking pause for gratitude.

For me, gratitude after loss is different. It’s too simple to say that because of all I have lost, I appreciate what I have so much more. It has something to do with the impossible-to-shake-now-and-probably-forever recognition of just how fragile it all is… that all I really have, no matter how much time I get here, together with those I cherish, is this moment I am in. That understanding just doesn’t let go of me, and neither does the gratefulness I feel that seems to go hand in hand with it.

Because if all I have is this moment, then I better kiss my Dahlia one extra time today, better eat that last piece of dark chocolate waiting for me in the cookie jar, better call my dad to tell him I love him, better tell my husband one more time just how proud I am of him… and I better be kind and gentle with myself.

*****

Thank you, Tikva, for awakening me to the present moment more than anyone ever has. Because with you, I could do nothing greater than be completely present – unconditionally – for as long as we would get together.

And beyond.

.::.

How does gratitude feel to you now? Is it there? The same? Different? If you do feel it, what makes you feel grateful?

why me?

Throughout the journey of losing my child, I have never asked myself, Why me?

Honestly, it’s just not a question I ask. Not because I wonder but won’t let myself ask. But because I could just as easily ask, Why not me? And because I already know the answer(s).

Why me? Because Tikva needed me as her mother, to love and hold her on her BIG journey.

Why me? Because there was a part deep inside me that was calling out – even if I didn’t know it – to be cracked open, stretched and expanded in this way.

Why me? Because even when I doubted it, Life knew I could do this.

Why me? Because I have boundless love and compassion – for my children, my family, my friends, in supporting others.

Why me? Because only through this could I become more fully me.

That’s not to say I wouldn’t trade it all in for a healthy, living Tikva toddling around me right now, nudging me off the computer and into a game of blocks with her. I would’ve been quite fine continuing on my way a bit less stretched, my soul less expanded, less fully myself.

But those are not the cards I got, and I want to remain in the game. So I’m making the best of the hand I’m holding now. As it turns out, I’ve got better cards than I thought.

***

I have wondered a lot if it’s all just about outlook, the color of the lenses on the glasses we choose to put on each day.

It’s easy when you’ve lost a child to go to that place of feeling like the person who got hit by lightning. What are the odds? In my case, they were somewhere between 1 in 2,500 and 1 in 5,000. That’s how often a child is born with a congenital diaphragmatic hernia. Me, I’m the one. 2,500 to 5,000 times more likely to be the majority, but this time I was the one. ONE.

It struck me sometime after Tikva died just how lucky I was that Dahlia, my first child, was born healthy and with no complications. What are the odds of that? One in how many? And my second pregnancy, which ended in miscarriage at 10 weeks – 1 in 4. Pretty high odds, but at the time I was utterly dumbstruck. Me? This happened to ME? I had to laugh about that when I learned that I’d made 1 in 5,000.

Back to outlook… I could look at that in so many different ways:

I must be the most unlucky mother in the whole world.

Someone out there must think really highly of me to be paying so much attention to my little self and giving me so many *$%@#! challenges.

What did I do to deserve this? Did I do something wrong?

The odds could be even smaller, I could be one in ten million.

The Universe is a random place, and shit happens.

Somebody has to be the one.

***

There is so much ego in this business of making sense of loss. So much ME in it all. So much of my busy mind trying to rationalize the irrational, comprehend the incomprehensible. Trying to fit something messy and confusing into a neat little container that can be shut and put away on a shelf, retrieved and reopened as needed.

I don’t think it works that way, though. I can put all of Tikva’s things – the physical reminders of her existence – in boxes in a beautiful wooden chest and keep it close by. But the meaning of it all – the WHY – isn’t so cooperative. And the answers don’t seem to come from my busy mind. From my ego.

Sometimes I ask Tikva…

Why me, Tikva? Because I needed you to hold me and look into my eyes and speak to me and kiss me, to lift me up.

Why me, Tikva? Because you are special, Mama.

Why me, Tikva? Because others will need your help.

Why me, Tikva? I don’t know, Mama, but I’m glad it was you.

***

I sat in a park in Jerusalem with Dave, just weeks before Tikva was conceived. It was sunny and warm and we lay in the grass under a tree.

I said to him, “I want to get pregnant.”

“When?” he asked.

“Now. Soon. This month.” It was just before Rosh Hashanah.

I was absolutely and completely sure. Ready. I had no idea why, but I was sure. Maybe Tikva was whispering in my ear. Maybe there was a part of me that was calling out, unknowing, for the journey ahead. It took us only one try.

If we had waited another month, would it have been Tikva? Would our child have been healthy? We didn’t wait another month. I don’t believe we could have.

Why me? Because this is my story. Tikva is my child. The only child I could have created in that moment in time.

It’s just not a question I ask myself, maybe because if it hadn’t been me, I would never have had a child like Tikva. And I would never have learned to love in quite the same way.

.::.

What are the questions you ask? Do you have answers? Where do the answers come from? How would you lost child(ren) answer your questions?

a great and noble life

I sit in the sanctuary. It is Yom Kippur, the holiest day of the year on the Jewish calendar. The year when even the least observant Jew can be seen in a synagogue.

I am not the least observant Jew… Not really possible with a husband who is studying to become a rabbi. Not really possible with the amount of Jewish tradition I was raised with. Not really possible with Polish grandparents who survived the Holocaust. Not really possible with the number of Jewish food calories I have consumed in 38 years.

And yet it is still somewhat a surprise to me that I am there, in this synagogue, following along with this kind of service. It is a traditional Reform Jewish service. The prayer book – Gates of Repentance, special for this day of atonement – talks of

God as Lord,

God as male,

God as judging,

God as forgiving.

I can’t quite bring myself to recite along during the call and response. I can’t bring myself to say, God, oh Lord… out loud.

This is not how I relate to God, to Source, to all that is around and within me. This is not how I connect to my divine essence. Not in this language.

My “God” is not separate from me.

My “God” is not in charge, deciding what I will receive and what will be taken away, when I will struggle and when I will overcome.

My “God” does not judge or punish me.

My “God” does not care whether I fast on Yom Kippur, or that my fast today included drinks of water and kombucha, that my day of atonement included a trip to Whole Foods and time sitting on my couch writing in my journal and reading a (non-Jewish) book.

Then I find this in the prayer book during the afternoon service: 

This is the vision of a great and noble life:

To endure ambiguity and to make light shine through it;

To stand fast in uncertainty;

To prove capable of unlimited love and hope.

And it resonates inside.

Hmm… A great and noble life as one that is lived as well as possible in spite of its precariousness, in spite of our fragility. Amid the fuzzy blurred boundaries that keep changing on us without warning, and rugs that are pulled out suddenly from underneath us.

I have proven capable of unlimited love and hope. Each day I surprise myself that I continue to feel it even more. In spite of the uncertainty that comes with knowing that things can completely fall apart and come crashing down again and again.

I never before thought of my ability to bounce back as being a quality of a great and noble life. I never before related to survival that way. Yet survival is what it is, isn’t it? Isn’t that what I’ve been doing? Surviving? 

Or perhaps I have actually… been… thriving…?

***

It is later in the afternoon and the yizkor memorial service has begun. The mood is quiet and solemn and the passage is about our finiteness, words about being on the road towards death from the moment we are born. (I close off some when I hear the words birth and death in the same sentence.) Again I start leafing through the prayer book, unsatisfied with the gloom and doom.

I find this: 

May the pains of past bereavements grow more gentle;

Indeed, let them be transformed into gratitude to our dear ones who have died

And tenderness to those who are still with us.

I was so lost at this time last year. I was so angry… at everything and everyone. I cried through the entire day at our warm and wonderful Renewal congregation in Berkeley, surrounded by friends who were there at every turn to hug me and sit with me or leave me alone outside if I needed that. I didn’t fast. I felt no obligation, no inspiration.

I felt no connection to this day, so soon after Tikva had died. All I could do was picture her spinning in circles in a white dress, dancing to the music, a year later. The two of us together in a parallel universe where she had continued to live.

All I could do was cry an endless stream of angry lost tears.

Now, a year later, the pain has grown more gentle. I think of Tikva with gratitude for the gifts of hope and love she gave me, for the compassion space she cracked open and expanded within me. For asking me to love her in a way I had never before known I could love, for teaching me that hope never completely goes away, even when everything feels lost

Or finite.

And I think of Dahlia, who daily stretches my capacity for patience, who demands my presence, my tenderness like no one else can, who reminds me to laugh in my most frustrated and exhausted moments, and I feel gratitude for both of my daughters, the deepest kind of gratitude for the way things are.

Just as they are. 

***

I surprise myself, that I can feel this lightness, especially today. On this day that for many is solemn and serious, reflective and laden with guilt needing to be cleared and asking for forgiveness. I surprise myself that I feel anything other than rebelliousness about Yom Kippur, this holy day I was determined to mostly blow off this year.

Then I woke up this morning and felt peaceful, held. By an energy that is comforting, serene, gentle. It didn’t matter that I was not spending the day with my community back in California, but instead in my house and at the grocery store and at services that felt mostly foreign.

It didn’t matter that I hadn’t asked anyone’s forgiveness, nor made any big plans for ways I wanted to grow and expand in the coming year.

All that mattered was that when I stepped outside to watch four monarch butterflies and two fat bumblebees holding for dear life to the white flowers as the wind blew them furiously around, 

I felt connected… to all of it.

Connected to the wind, to the smells in the crisp fall air, to the bees and the butterflies, to the light streaming through their gold-orange wings…

Connected to Tikva. 

Connected to my essence, the most pure and true part of me.

Connected to a deep knowing inside me that I can and will continue believing in hope and love.

Perhaps the makings of a great and noble life are that simple.

.::.

And you? How do you connect with the part deep inside that is most entirely you? Is there something bigger that helps you feel connected? How have you stretched and expanded through losing your child? What makes you recoil, contract? What helps you to feel you are thriving? What are the makings of your great and noble life? 

after the transformation

Oh, ppphhhhhh… 

What do I do now?

She’s been gone longer than she was here, even counting the time she was inside me.

I’ve passed all of the first anniversaries: her ultrasound, the day she was born, the day she died on both the Jewish and Gregorian calendars.

We’ve anticipated her arrival.

Hoped deeply.

Said hello, welcomed our second child to the big world.

Loved unconditionally.

Taken her outside to breathe fresh real air.

Said goodbye.

Buried her fragile little body in a tiny coffin in the ground.

Her box of memories is full, her photo album is made. Her special soft things in jars, still smelling a little bit like her. Everything put away in the trunk that sits next to me in the sunroom, keeping me company.

Her quilt is coming along, something I am not in a hurry to finish… When I work on it, I feel close to her.

I still haven’t framed and hung her photos, but I will… soon.

Her headstone has been made, set and unveiled. Flowers planted with her placenta. Her DNA and ours stored at the hospital for research. Her birth and death certificate are in a safe place with other family documents, confirming that she really did exist, always a part of our family.

We’ve moved away and settled into our new home across the country.

Our new chapter has begun.

Now what?

*****

Today I watched as two cicadas completely left their exoskeletons and began a new chapter in their new skins, so bright green they were almost turquoise. They hung there from the branches of a tree, clinging still to their old shells, transparent wings spread, contemplating new destinations, new purpose.

It was stunning… I’ve never seen anything like it. For three weeks now I’ve been listening to them singing their songs outside, surrounding me with constant tropical melodies. I’ve just never seen a cicada before, not even in a photo.

Everything changes, nothing stays the same.

Impermanence... I see it when I look in the mirror. I look different than I did last summer. I look different than I did two summers ago. I think I look different than I did a few months ago. I’ve reluctantly left my exoskeleton, sometimes hesitating to leave it completely behind. Longing for it, for simpler times.

My old shell consists of all the mes I’ve left behind, said goodbye to, willingly or not.

It’s this next place I’m not so sure about. This after the transformation place. I can so easily tell you how changed I am from the person I was before I knew Tikva. I can describe in vivid detail how she transformed me, and for the better. But I’m not exactly sure what that means for me now… now that I’ve been transformed by knowing, loving and losing my child. Now that I’ve undergone a change I never in a million years would have chosen. Now that I’ve gotten kind of used to this new person that I am.

*****

How many children did you bring with you to Cincinnati? he asks my husband.

We have two children, but only one living. We’re here after a year off, since we lost our second child last summer, my husband answers.

I say nothing, look away even, let my husband tell him. Then I look at this new acquaintance and see the sadness and searching in his eyes as he looks at me then quickly looks down. I know what he wants to say. After a year, I am so aware of the sadness I’ve held in other people when they look at me after learning about Tikva. Some days I can take it better than others. This time I just notice it, allow the compassion to flow in silence. Nothing needs to be said.

*****

I hoped to be carrying another child by now, but I’m not yet. Still, I can feel that child’s spirit close, waiting. Sometimes I can’t distinguish it from Tikva’s spirit. I don’t think that matters. Baby spirit energy is one and the same. I think it comes from one big well.

I watch my older daughter and feel how powerful is her desire to be a big sister to a living sibling.

I wish I had a sister to play with who wasn’t a spirit, she says.

Me too, I answer. Me too.

She would have a sibling who would be almost two right now, if I hadn’t miscarried in between her and Tikva. Then there would never have been a Tikva… Strange.

Tikva would be 14 months now, would probably be walking. She would be so beautiful, that I just know for sure.

For two and a half years we have wanted to give Dahlia a sibling… One who can play with her.

We still do.

*****

It’s almost the new year on the Jewish calendar. The biggest time of the year. This is supposed to be a time of reflection, of going inwards, of making amends, making peace. I always find this time tumultuous inside, unsettling, unsettled. I guess that’s the point. I don’t know if I’m ready for a big time right now. I’m feeling especially un-Jewish right now, which is ironic as the wife of a future rabbi. Really, I just feel like climbing under the covers and not coming out until October. Until the new year, a new season.

Last year at High Holy Day services, less than two months after Tikva died, I alternated between sitting next to Dave in the sanctuary, crying, and running outside to cry alone. I resented everyone dancing in the aisles all around me. I felt no joy, no peace, no serenity. I felt isolated, empty, lost. Dave wrote angry messages to God in his journal. I did not fast on Yom Kippur. Dave and I got into a fight about something, I can’t even remember what. Afterwards I went with a friend to a candlelight vigil for babies who had died. It was one of the saddest days of those first few months after losing my Baby Girl.

I don’t feel especially compelled to fast this year either. I don’t feel especially inspired to do much that is Jewish, to be honest. Keeping kosher – in the limited way we’ve been doing so for several years – feels kind of trivial after what I’ve lived the past almost two years. That is not how I connect to something bigger, by eating my meat and my dairy separately… by fasting on Yom Kippur.

*****

There is a new layer of sadness churning deeply in me right now, a layer I’m not quite ready to shed. A space I just need to exist in for a while. I’m not entirely sure what it’s all about, but I do know that it’s less tidy, more raw than I’ve felt in many months.

It’s not the part of me that wondered how I would ever survive losing my child, terrified at the thought of forever having to hold that experience. I’ve survived, relatively intact. But I’m not settled. In fact, I’m feeling rather unsettled right now. In a new kind of limbo, an in between place.

Now what?

Now life goes on. Now life continues.

That’s it? It just continues? Just goes on, business as usual, except that I’m completely transformed in the middle of a world that hasn’t really changed much at all?

Yup.

How come I have to adjust to the same old world around me, and no one has to adjust to me?

Because you’re not the majority.

I’m not? I know and know of so many parents who have lost babies, our numbers grow every day, and we’re still just a minority? But this is all I know. What am I supposed to do with the transformation I just went through? With this new self I am sort of used to and still getting acquainted with?

*****

Tikva? Are you there? Are you still close? Is that you in the giant yellow and black butterfly I saw yesterday? In the turquoise under the transparent wings of the cicada? In the tiny bird eating an Oreo cookie outside the ice cream store yesterday?

What do I do now… still without you?

I will let myself cry for as long as I need. There are no rules around how long is enough before being done with the sorrow. You are never really done, are you? Here in this place, we know better than to create those kinds of boundaries. Here we feel what we need, when we need, how we need to.

I miss you, Tikva. I miss you differently now. But oh how I miss you still, my Tiny Love.

.::.

Where do you find yourself now? Are you comfortable here? Is it still new for you? Unsettling? Do you feel like an old hat? Transformed, for better or worse? What do things look like now, here, for you?

Letters of Significance

We thought we were having a boy.  I like surprises, and thought the birth of a child was quite possibly the best one out there (nailed that, eh?).  So we did the obligatory lists of boy names and girl names.  Which over time grew shorter.  Until we were down to one boy name (really, days before birth this was agreed upon) and two girl names.  I'm not going to say we phoned in the girl names because they were both lovely, but I never really took them seriously.  Because I was having a boy.

Until I had a girl.

And we stared in her face, and pondered, and said them both out loud, and then they took her away for observation.

And then the wheels came off the bus.

And not quite 48 hours later, not long after a doctor informed us we were at the point of palliative care, we named her.  I will confess that the thought flitted across my brain that I was using this name up -- that I was wasting this name -- that it could never be used again, that it would be turned to ash along with her.  Perhaps I should use the name that by now was a distant #2?  But #2 name didn't fit.  I looked at her, and it just didn't fit.  It didn't sound right with her nose and closed eyes and delicate lips.  And even though I thought when I added her name (the one I ultimately chose) to the girl list a few months earlier that I would use the nickname "Lena," it now seemed completely inappropriate.  I looked at her lying in her cot, a perfect little 6lb girl plugged into a sea of tubes, and "Maddy" (or "Peanut") just flew out of my mouth as I reached for her still limbs.

I picked up the NICU form that they wanted us to fill out regarding visitors, and across the top, in a ballpoint pen, finally set it down for the first time:  Maddalena.

When a small part of my imagination tries to -- forcibly or unconsciously -- wonder if I could ever dare to be pregnant again, one tiny pebble in a series of roadblocks that inevitably springs to mind is the name.  What if I had a girl?  What on earth would I ever name her?  I could never now use the other name, the one that might have been destined for her.  (I'm not even sure I could use our top boy name any more if I were to have a boy, it's so close to this whole series of events now.)  And I feel as though I used the best one.  On a dead baby.  On someone who's not even here to hate it or enjoy it, to curse us or bless us, to go through a life of misspellings and mispronunciations.

Since wandering into and through the blogs of parents who lost children, I have run across numerous stories of naming:  As Niobe wrote here on GITW, she didn't want, couldn't bear to name her twin daughter.  But was forced to record something on paper.  Some of you didn't want to use a certain name, with the small ember of hope that someday it might be used on a live child.  Some of you, knowing your baby was dead already, turned to family lineage, or nicknames from your pregnancy.  Some, I'm sure, grasped at the air and understood that name would never be that of a supreme court justice or a punk rock singer, but simply letters on a death certificate.  

I know Niobe's story, but how did you settle on your dead child's name? Or did you decide not to name him/her? (Were you given that choice?  Did you WANT that choice?) Was it a family name or one you simply liked? Did you decide what your child would be named before you found out s/he wouldn't live? How do you feel about the name now? Or the art of naming in general? If you use nicknames or initials in cyberspace, please don't feel pressured to spell the name in order to talk about the significance.