tikva’s quilt

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A month before Tikva was born, our community of family and friends surrounded us with the most incredible love, circling around David, Dahlia and me – and Tikva still in my belly – blessing us with everything we would need to welcome our second daughter when she was born. All together in that giant circle, they gave us the strength to take on the unknowns the future held, and the 58 days that unfolded of Tikva’s mighty life, days spent entirely in the critical bay of the intensive care nursery at UCSF.

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For that day, my sister had prepared blank prayer flags that people could write on, sharing their messages for Tikva. We planned to hang the flags above her tiny bed in the hospital.

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Tikva was born 11 years ago today, in the wee hours of the morning while it was still dark outside. Just as I arrived in the labor room, I looked out the window at the eucalyptus trees that surrounded the giant mountain where the hospital sat and a red tail hawk swept by just a few feet away.

Tikva was past her due date, showing no signs of being ready to come out on her own. She knew she had a good thing going inside me, where my body breathed for her, fed her, held her safe and warm. They broke my amniotic sac to induce labor, and as soon as she came out, she was intubated because she couldn’t breathe on her own.

She was beautiful. My Baby Girl.

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Her prayer flags did indeed hang in her little corner, surrounding her with our community’s love and holding. Above the machines attached to the wires that monitored the oxygen saturation in her blood. Above her ventilator and C-Pap and IV bags and the hospital baby blankets with the little footprints and the pictures Dahlia drew for her sister.

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58 days later, the morning after Tikva breathed her final breaths outside in the hospital garden, held by David and me, surrounded by her two primary nurses, Allyson and Elaine, and her two doctors, Roberta and Tom, Dr. Tom wrote to me, 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.

If you ever want to meet an angel on earth, spend time with the nurses and doctors who work in the neonatal intensive care unit. They are high souls.

After she died, I wanted to do something with Tikva’s prayer flags, something lasting that held her story, her meaning, and the hope she brought with her. My friend Elizheva helped me begin to turn them into a quilt. I wanted it to be circular, like a mandala, because for me Tikva is infinite.

We began to sew, by machine and by hand. I never made a quilt before this one, and mostly I sewed by hand.

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Tikva’s nurse Elaine asked me for a piece of the yellow fabric that would become one of the corners on the quilt. This is Elaine playing with Dahlia and me in Golden Gate Park, sometime during the year after Tikva died. I’ll never lose touch with the special people who cared for my daughter.

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Onto the yellow fabric, Elaine quilted a red tail hawk – the animal spirit that followed us before, throughout, and since Tikva’s life. Red tail is a divine messenger, bringing messages from the spirit world.

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As we drove cross-country for our move to Cincinnati, I sewed circles and spirals onto the quilt. Infinite.

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And in Cincinnati I connected with another quilter named Barb, and she helped me continue my project. I added the corners, Elaine’s hawk and pieces of baby onesies friends had made or gotten for us. Barb sewed the checkerboard back side of the quilt.

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Four years later, just before moving to Atlanta, our son Judah was born and became a part of our family through adoption. I didn’t do very much work on the quilt in the five years we spent in Atlanta – my plate was full with caring for a new baby, supporting Dahlia through her bat mitzvah and middle school, working, and being the partner of a newly ordained rabbi.

But as soon as we moved to Alexandria, I saw the wall in my new sunroom where I would hang Tikva’s quilt, and I knew I had to finish it. So I asked around for a quilter at the synagogue that was our new home, and I met Sandi. And she helped me to finish Tikva’s quilt.

When I traveled west last fall to say goodbye to my beloved mother-in-law before she died, I brought the quilt with me. I wanted her to see it, and I finished sewing it there, quilting little spirals throughout the quilt.

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When I got home, I sewed a crystal bead onto the quilt for my mother-in-law, imagining her holding Tikva, their spirits now intertwined.

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I spend a lot of time in my sunroom, on the couch under my bookcases, surrounded by two of my most favorite things in the world – Tikva’s quilt and my books. It feels as though this wall was built for Tikva’s quilt, and I know I finished sewing it at exactly the right time, even if it took me ten years.

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I feel a strange kind of peace, 11 years later. Or maybe it’s more acceptance. Grief is no longer a sharp and jagged thing, edges smoothed by time and space. And yet I think a lot about the sliding doors that closed and opened, a parallel universe in which Tikva survived. I could be sitting on this couch with my 11-year-old Tikva, the quilt above us as I tell her the story of her beginning. Or a time and a place in which she was never diagnosed with a birth defect and was just born healthy and well like her sister – no quilt at all. Probably in a different city. In a life where we may never have met her brother.

Strange how life unfolds. Complicated and mysterious, far beyond my grasp. I’ll get cupcakes today, as I do every year, and with my husband and my children, we will celebrate the day Tikva was born. The day she changed everything.

Happy birthday, my beautiful Baby Girl. I love you forever.

The Best Picture of Tikva - Rudi Edits

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within the discomfort

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I’m sitting in the sukkah on our back deck. Poles of PVC tubing hold up three walls of plastic tarps, while the fourth side of the square structure remains open. The “roof” is wooden lattice, we didn’t get around to covering it with fallen branches from the trees in the woods across the street before it started raining. The rain stopped yesterday but it still smells wet, clean and fragrant. And it’s still humid from the hurricane in the Gulf of Mexico that caused devastation in Nicaragua but was only a storm by the time it reached northern Georgia.

The sukkah reminds me of when I first went to the Burning Man festival, where friends and I constructed a geodesic dome – also from PVC – covered by a translucent white parachute. I can’t remember how many rolls of duct tape it took to put that thing together so that it created some semblance of shelter and shade from the hot desert sun. But I do remember the massive high desert dust storm that blew off the parachute and almost blew away the structure itself and everything that was inside while we kept cover inside our cars.

Everything is temporary.

So striking – and humbling – when you are in the middle of a vast empty desert, in a temporary “city” that only exists for a week. This was back when very few people came to the festival in RVs and most people slept in tents or domes like ours.

That’s one of the lessons of the Jewish holiday of Sukkot, one of the reasons we build this “temporary dwelling” and spend time within it each fall. We’re also supposed to invite people into the sukkah, including the spirits of our ancestors.

Everything is temporary.

I feel incredibly uncomfortable right now. Last night I couldn’t fall asleep, my body was restless, my skin felt itchy and dry, my belly rumbled, my mind swam with unsettledness, and I was annoyed that I was so tired but still awake.

My beloved California – where I grew up, where I come from – is burning and I am so far away. One calamity follows another right now, before we are able to catch our breath, before there is time to recover. No time to heal, no space to hope.

Everything is temporary.

I think about all of the people in the world for whom this is their always. The constant worry about where their next meal will come from. The loss of babies from malnutrition. The temporariness of homes and jobs when there is income insecurity or no jobs at all. The fragility of health. Fear of violence. And even the ability to summon up hope for something better, perhaps, one day.

Somehow the discomfort feels like my responsibility right now, like this dwelling I need to sit in and stay connected with. Especially as someone whose actual home is intact, whose family is safe and well, whose pantry is full, whose job is secure, whose car runs well, whose children get to go to school, whose skin is white.

Are most of us feeling this right now, or are there people, maybe entire communities out there that remain untouched, that don’t feel troubled, that are not concerned? Is it business as usual for anyone, or is this now our new business as usual? Is there anyone who doesn’t feel like we have fallen into an irreversible dystopia fit for fiction? Because I’ve read a lot of those books and it doesn’t feel as though we’re headed there, it actually feels like we may well have arrived. Dystopian fiction is written as a warning. What we need now are prescriptions…

for resolution

for answers

for unity

for justice

for healing.

Please tell me that everything – even our collective discomfort and all of this pain and destruction – is temporary.

resilience

Cracks

re·sil·ience

rəˈzilyəns/

noun

1.

the physical property of a material that can return to its original shape or position after deformation that does not exceed its elastic limit.

2.

an occurrence of rebounding or springing back.

3.

the capacity to recover quickly from difficulties; toughness.

****

Resilience is a big word right now. There are studies about teaching resilience and grit to children in schools. Which I think is awesome, and much more helpful to becoming a functional human than understanding geometry, or even global politics.

Facebook COO Sheryl Sandberg, whose husband died suddenly two years ago, is making the media rounds speaking about her new book and foundation, Option B, which “helps people build resilience and find meaning in the face of adversity.” I admit that there is a part of me that is resistant to the idea of a celebrity making this into a movement – giving us collective permission to grieve properly and in our own ways through our losses, and teaching the world around us how to better support us. I’ve been talking to some of my friends who have also lost young children and our conversations seem to go like this: What do you think of this? Haven’t we been going there for years now? This stuff – this really tragic, really hard, really bad stuff happens so much more than people want to know. Why does tragedy need to happen to a celebrity for it to become okay for our society to finally talk about it?

But the nagging feeling I get when I look at the Option B website is this: Do we have to make something out of our losses, our challenges, our trials? What happens if we don’t?

I think most of the time, when it happens – when we develop resilience – it’s not because we did anything. It just happens. And sometimes it doesn’t, and the hard things are just hard, and they suck, and you don’t come out the other side feeling more capable of handling anything that might come next. You are just tired and you want to shout, Enough already! This effing blows!

And that’s okay. You are not a failure if you don’t come out the other side of your awful tragedy feeling stronger, wiser, or more resilient. You are not better than with resilience than you are without. There is nothing about resilience to be proud of. Resilience doesn’t have to be the goal. In fact, there doesn’t have to be any goal when life is hard except getting through a day.

Recently I had the thought that I have earned my resilience out of all that I have suffered or struggled through or overcome. But have I really? Or did the resilience I have just develop on its own? Maybe it’s even something I came into this life already possessing.

I just don’t know that I buy the notion that what doesn’t kill us makes us stronger or more resilient. The idea that we are transformed into better people out of what we have lost, what we have grieved, what we have suffered. Because I would give up my resilience and strength and wisdom in a heartbeat if it meant that my baby didn’t die eight years ago and instead was a healthy girl about to finish third grade and celebrate her ninth birthday. Or that my parents hadn’t turned my world upside-down at age 15 when they divorced. Not to mention how quickly I would give back the autoimmune condition I have struggled to live a normal life with for 20 years.

Because living children are better than resilience. And physical health is better than the emotional strength gained from surviving an illness. And a stable family of origin is better than the wisdom I gained from being independent and responsible beyond my years as a teenager. All those hours in therapy and doctor’s offices and the neonatal intensive care unit took a lot of time, energy and money I would joyfully have spent otherwise. Like on a beach in Hawaii.

I get it: The human search for meaning, especially building meaning out of adversity. It’s what keeps us moving forward. It helps us to rebuild. Otherwise nothing makes sense, and it all feels like a big cruel joke.

But what if we can let it be okay to just live through adversity and arrive at the other side cracked, or even completely broken? What if we don’t have to overcome or become stronger, but just figure out a way to put one foot in front of the other and wake up each day feeling a little less shitty than the day before? What if there will always be a part of you that is keeping an eye over your shoulder for the next unexpected kick in the back of the head?

This is the thing: I don’t think we bounce back out of adversity to how we were before. Adversity changes us completely, forever. Even in our cells, our DNA. (see: epigenetics)

I think the idea of rebounding or springing back – which is often part of conversations about resilience – can be a setup for feeling 100% like a failure, even if you do manage to come out the other side a little stronger. You don’t bounce back because there is no back to go back to. You just do your best to move forward, maybe evolve a little, maybe transform a little – or maybe you just find yourself in unfamiliar surroundings, hardly able to recognize yourself, but accepting your changed self anyway. Because that’s your only option.

That kind of acceptance can require an enormous amount of forgiveness. Towards ourselves, mostly.

Maybe – not even by doing anything intentional – you even exceed your elastic limit, and you become bigger. Not better, just more expansive. Because we aren’t static. Even when we feel like shit, part of that feeling comes from knowing that there is something that feels just a little bit better. Even if we don’t exactly know how we might get there, or if we even want to.

After I lost my baby daughter, people would say things to me like,

I just don’t know that I could survive what you’ve survived.

And also:

You’ve been through so much.

With all you’ve been through, how are you as grounded and balanced (as you seem to be; meaning: How are you not a bitter, angry mess?)

You’re so strong. (Meaning: From now on, this is how we expect you to be.)

You’re so wise. (Really?)

And I would reply, But you would survive. Because you just do. Because you aren’t given any other choice.

I’ve surprised myself with what I can survive. People around me surprise me constantly, too. Friends and family battling cancer. My refugee clients at work. Everyone I know who lives with a chronic illness. I just don’t know that surviving is any great feat. It’s just what we do when shit happens.

I don’t get knocked down easily anymore.

I have survived “the worst” already, but I also know that doesn’t mean there definitely isn’t any more “worst” to come.

I know that I can handle what life is going to dish out next.

Maybe partly because of resilience, because of strength, because of wisdom.

But mostly because I just know I have to.

Perhaps that’s all resilience is. One step in front of the other. Forgiveness. And being really, really gentle with ourselves and each other.

Because life is hard, and it can be good too. That much I believe.

(im)permanence

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Last night was the first StoryWell storytelling event hosted by The Well, a program of The Temple in Atlanta, GA. I was honored to be among six storytellers sharing personal stories based on the theme of permanence. Here is my story, both the audio and the text.

(im)permanence – StoryWell audio

I had a dream that she came out of my belly. She came out to tell me that she was a girl, and that her name was Tikva. She came out to tell me and then she went back inside.

I wasn’t sure what to make of the dream. In the morning I asked my husband, “What do you think of the name Tikva?”

“Hope,” he said. “That’s nice.” That was it, in that moment. It was still early, I was only halfway through my pregnancy. We put the name aside – a possibility. We didn’t know if she would be a girl or a boy.

Ten days later we got in a cab and drove to the other side of Jerusalem for the ultrasound – the big one you have in the middle of your pregnancy. The one to make sure everything is okay with your baby.

We took our older daughter, she had just turned four. It never occurred to us not to bring her. At her ultrasound the doctor had happily told us, “Everything looks perfect. Enjoy the rest of your pregnancy.”

There are three words you never want to hear from a doctor. Three words that change your life forever:

“THERE’S A PROBLEM.”

We had told him we didn’t want to know the sex of the baby, that we wanted it to be a surprise. But as soon as he told us something was wrong, it became so important to know this simple thing that would allow us to connect with our baby.

“She’s a girl,” he told us. Of course she was.

“Tikva,” I said to my husband. “Hope. That’s her name.”

We went home broken. Scared. The known had become unknown. My vision of what awaited my family was blurry. Frightening.

Would Tikva live past the moment of her birth? Would she overcome this imperfection that made her wellbeing so tenuous? Could modern medicine save her so that she could live a long, full life as our daughter?

How long could I keep her inside me, safe and held?

My husband walked to the Western Wall to pray. I gave him my prayer for my daughter on a tiny piece of rolled up paper.

Please, God, don’t make me bury my daughter. I won’t survive.

It snowed outside that January in Jerusalem. The city shut down as its single snowplow struggled to clear the streets. Somehow I made it for a second ultrasound and an amnio.

I made phone calls to specialists all over Israel. I sent emails back home, to San Francisco, connecting with experts there who understood our daughter’s condition. All of them encouraged us to come back home.

I cancelled our lease and packed our suitcases, and we landed in San Francisco the day before Valentine’s Day.

****

She was born 4 months later.

MY TIKVA. MY HOPE.

The moment I pushed her out and my husband cut her umbilical cord, she was swept away to be put on a ventilator.

I developed a love-hate relationship with that ventilator – this machine that kept her alive, weakened her airways, required a feeding tube so she could be nourished by my milk, and made holding her so complicated.

There was a brief period that started around day 30 when she didn’t need the ventilator, only oxygen. The doctors talked to us about what it might look like when we brought her home, how she would need oxygen probably for many months. We were ready for anything.

Please God, just let our daughter come home.

We held so much hope.

Tikva struggled. Our tiny seven and a half pound girl fought for her life. She wanted to stay, I really believe that. But her body was too fragile. She could never get enough air.

On the morning of day 58, as I pumped my milk for her, showered and got dressed, I had a feeling it was time. I didn’t say anything to my husband about what I felt, but later he told me he also knew. I headed to the hospital, and after taking our older daughter to preschool, he met me at Tikva’s bedside.

She had had a rough night in the critical care bay of the NICU. Her oxygen numbers had dropped frighteningly low. Twice the doctors and nurses rushed to her bedside as the words “CODE PINK” resonated over the hospital loud speaker. This time the code pink was for her.

I looked down over her and asked for her guidance. She opened her eyes to look at me and she told me she was done struggling, and it was time for her to go.

Please Tikva, please know how much I will always love you.

We took her outside for the first time in her short life, and her last breaths were of fresh misty air, no ventilator.

I held her as she died, and I did bury my daughter. And I survived.

****

She came out of my belly in a dream that winter to tell me her name was Tikva. She came out of my belly again in summer to teach me these three things:

She taught me how to hold onto hope when everything is unknown.

She taught me that all I needed to do in my powerlessness was to love her unconditionally, for as long as we had together, and forever after that.

And she taught me that everything is both finite and infinite. That nothing is permanent except love. That impermanence makes each moment so incredibly precious. And that we survive our losses and our struggles because even those don’t last forever.

In that time each fall when the milkweed seeds float around, or when I look up to see a red tail hawk flying overhead or perched in a tree, I feel like Tikva is there.

And as soon as those brief moments end and the milkweed and the hawk float away, I know she is still there.

Infinite.

My greatest teacher.

 

how love smells

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I washed my hands in the restroom of a doctors’ office the other day and smelled it instantly. It lingered on my hands even after they were dry. The smell of that particular kind of medical antimicrobial soap, I will know it forever.

In a flash, for a moment, it is 7 years ago and I am back at the big sink outside the NICU, the one whose water flow is controlled by foot pedals. Or the sink inside, right next to my daughter’s tiny bed. The one only nurses are supposed to use, but which they let me use as well. That same soap. That same smell.

For a while it unsettled me to encounter it. Just over a year after my baby died in that hospital, I found myself at the sink in the bathroom of another children’s hospital in a city 2500 miles away. I had just interviewed for a job managing a research project in their NICU, and before returning to my car in the parking garage, there I was washing my hands and that smell… I almost collapsed as I watched the tears flow down my face in my reflection. In a daze I found my car, and I sat privately and cried, doubting that I was ready to be working in such a hauntingly familiar environment. Wondering if my desire to create meaning from the loss of my baby girl would be overpowered by the raw emotion of having so recently lost her. I didn’t get the job, and perhaps it was for the best. I would have been so good at it though. Good for the right reasons.

Then one day that same smell surprised me – in the moment that it went from being unsettling to comforting. It was February 2011 and I had come to the hospital to deliver the twins who had stopped growing mid-pregnancy inside me. They gave me – the grieving-mother-to-be – the largest room, the nicest room, and also the room furthest away from the other mothers (those giving birth to living children) in Labor & Delivery. I went to wash my hands at the big hospital sink and there it was… that smell. With tears in my eyes I said to my husband, “It’s the same soap.” And I just stood there and smelled it. I washed my hands at that sink many times that night, and the smell remained the strangest kind of comfort throughout.

The smell doesn’t haunt me now. Whenever I am in a medical office, I smell the soap to see if it is the same one. When I encounter it, I take the time to smell it, and I travel back for a moment and return to a time and place where my daughter is still alive. Where the possibility of her survival still exists. Where my entire purpose each day after washing my hands up to the elbows is to sit by her side and love her.

****

I keep my baby daughter’s things in a wooden chest in our home. It’s amazing what accumulates from such a short life. Not just things she touched but things that came afterwards. Like the little shrine I made in her memory for Dia de los Muertos that first fall, with three friends who had also lost their babies. Like pictures her sister drew as she navigated her own grief. Like the shirt I wore at Tikva’s blessing way when I was still pregnant, the sweater that kept me warm throughout the second half of my pregnancy, and the nightgown I wore when I delivered her.

The tiny blanket that lay over her during those weeks is in a jar, along with the hat that covered her head when we took her outside to breathe her final breaths. The stuffed lamb and the stuffed duck that lay against her fragile body are in another jar. I open those jars sometimes and take a deep inhale. The smell is the same, a little musty but so familiar. Perhaps it’s not exactly her smell, and whatever it is has replaced the familiar in my memory because I would open those jars to smell it so frequently in the months immediately after she died. Like the soap, it brings me a tiny bit closer across the divide between the living and the dead.

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It’s been more than 7 years since she lived and died. That’s a long time. And yet there have been times during those years when her loss feels especially present. There is no rhyme or reason to why and when that happens, it usually catches me by surprise. The loss of her is very present for me right now. It’s not a stabbing pain, more like a dull gnawing to remind me. I said to my older daughter the other day, “What do you think life would be like right now if Tikva had lived?” She replied that we probably wouldn’t have my son, her brother. She’s right. We always wanted two children and Tikva would have been the second. So this little being who came and went so fast and will forever remain a baby, she will eventually come to represent something to the little boy who came afterwards, her brother.

After Tikva died, on one of the nights of our shiva, as friends and family filled our home with love and food to share in our mourning, three amazing women came through our door. Two of them had been the midwives we’d worked with during my first pregnancy with my older daughter, and it had been years since we’d seen each other. The third was an acquaintance from many years before whom I’d gotten reacquainted with when I donated some of my breast milk for her baby. I had freezers filled with my pumped milk from the two months of Tikva’s life, more milk than she was able to drink through her feeding tube, and I wanted it to go to babies who needed it. This woman who came to our shiva with our midwives was one of them. It’s hard to explain the connection you have with someone who was able to nourish her baby with the milk you pumped for your own baby who is no longer living.

She walked into our home carrying a basket of warm muffins wrapped in a beautiful napkin, and I hugged her with tears in my eyes. She did not take her basket and napkin with her when she left, and they have followed us in the 7 years since. This little basket that is perfect for small corn tortillas, and this beautiful single cloth napkin.

And you know what? It is my son’s favorite napkin. He calls it “My Napkin” and it is the only one he will use, even when it is filthy and needs washing. He throws a fit if anyone else picks it up.

And I love that. I love how it is all connected – this baby who came and went too fast, this mother I reconnected with whose baby drank my milk, this napkin that has followed us from that time and which didn’t end up in the trunk of Tikva’s things, but instead fell into the hands of my son, the one who came into our lives as the culmination of everything that began when Tikva left us.

The connection between them all is love. It’s that same connection I feel when I smell that hospital soap. It’s in the musty smell inside the jars in Tikva’s trunk. It’s the connection to love – my love, the ones I love, the love from others. The smell and the feel of love.

 

on writing and authenticity

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Self-Portrait, college photography class, 1991

I started blogging in February 2007. I didn’t set out to write a blog, at least not one that would become public. It began as a log of my second pregnancy, and I wrote mostly for myself and eventually to share with family and friends. I don’t remember blogs existing when I was first pregnant with my oldest daughter in 2001. Pregnancy and motherhood blogs were not yet everywhere, nor was Buzzfeed or Twitter or Instagram, even in 2007. I didn’t have a Facebook account until sometime in 2009, still hesitant about my online presence.

That second pregnancy ended in miscarriage at 10 weeks in April 2007, and my writing took an unexpected turn. I found myself in shock to be among the 1 in 5 (likely more like 1 in 4) women who have miscarried. I found myself publicly grieving what could have been. I wrote a lot that month, and then I slowed down, less attached to my online space until I got pregnant again in September 2007. We were living overseas by then, far from family and home, and this was a way I stayed connected to my people.

I was thrilled to be pregnant again, hopeful. In spite of my previous loss, I trusted my body and my baby. The only time in early pregnancy when I remember worrying was when I first suspected I might be pregnant and had some cramping, likely from the fertilized egg implanting into the lining of my uterus. But after that, after that pregnancy test that was so vividly positive, I was full steam ahead. Positive and happy in spite of the morning sickness. Confident.

I spent 6 weeks of that pregnancy in agony on the couch with a horrible case of shingles. I didn’t take antivirals or pain medicine because I didn’t want to endanger my baby. I made it through what was by far the most physically painful 6 weeks of my life straight into a 10 day sinus infection. But still I was undaunted. I was pregnant  and I could feel my baby kicking inside me. I had no reason to think anything would go wrong.

And then it did. At my unborn baby’s 21 week ultrasound, the doctor told us there was a problem. And I found myself relating to my online space differently. It became my lifeline to those who loved us who were far away, across the ocean. As I journeyed through the second half of my now-high risk pregnancy, my online space grew as my circle of support grew. We returned home from overseas to navigate uncharted waters with support and familiarity, and to do so in English. When Tikva was born and for the 58 days she lived, I shared our powerful story together at Growing Inside. I shared our love. And the love that surrounded us – the love that held us – that love grew.

After Tikva died, I kept writing. I wrote for my survival. I wrote also at Glow in the Woods, a website created by and for parents who had also lost babies. I wrote – again – about the loss of all that was possible, the loss of my dreams, the loss of my child. I connected, via my blog, with other babylost parents, with women who held me and whom I was able to hold through their grief and rebuilding. I wrote 471 posts at Growing Inside, and at the end of December 2009, almost a year and a half after my daughter had died, I felt it was time to stop.

I started a new space, at the time a more private space, a few months later. I called it Clearing Space and Settling In and I wrote in it sporadically, but without the momentum I’d had writing at Growing Inside. The internet is like that, you can exist somewhere, then you recreate yourself and exist somewhere else. It’s still you, still your story, but the space feels fresh, new, and I think I was hopeful it would inspire movement within me. Inspiration. Maybe it did. I’m not sure.

Then in late 2010, again with news to share, I created another new spaceA Radiant Beam of Light. With some help, I had gotten pregnant again, this time with twins. Here in this new place, I wrote about the ups and I wrote about the downs. I wrote about sharing the news with our older daughter, her joy, my joy. When one of the twins died just after we had told our daughter she was going to be a big sister again, I wrote again about loss and grief and sorrow, and this time I wrote about anger. I wrote about fear. I shared my prayers that I wouldn’t lose the second baby. I held the loss of Tikva and I held my breath. I could not drop into this pregnancy with ease. This time pregnancy was scary.

That post I’d written about telling our daughter we were expecting twins breaks my heart to read now. What do you do with hope that existed – hope that was put into words – and then was lost? Does its energy still exist in the history of all that has been?

And then I could no longer feel the second twin moving inside me, and on Valentine’s Day I found out he had died. A few days later, I delivered my almost-babies. Again, I said goodbye to my dreams, to what might have been. Again I grieved. This time it was angry, hopeless grieving. I wrote sporadically at A Radiant Beam of Light and then I stopped in April 2013, two years after losing the twins.

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The desire to write – at certain times the need to write – hasn’t left me since I discovered it almost 35 years ago. I have always written and I have always wanted to write. I have always had the desire to share my stories. I’ve filled countless journals since I was 10 years old. I’ve submitted stories and won prizes. I’ve written long letters and postcards in tiny print to and from countries all over the world. I’ve kept lengthy computer diaries on my DOS word processor. I’ve written down a piece of my family history that grew into my college honors thesis. I’ve written pages-long emails over years of correspondence with friends – all of which I’ve kept and some of which I’ve dreamt of editing and publishing in some form because they are so heartfelt and true. I’ve taken creative writing classes and participated in writing workshops for women. I’ve written fiction. I’ve written almost-fiction that comes from my experiences. I’ve written professionally. I’ve been published in the media a few times and had so many ideas for other pieces I want to write.  I have written down story ideas on tiny scraps of paper and begun stories and even finished some. I have dreamed of writing books. And I have blogged.

There have been times when my writing has surprised me, as if I were a channel for something that simply needed to come through me, but not responsible for the words themselves. As if the words came from a place other than my mind. My soul? It’s not a religious thing and I am by no means any kind of sage. I think it is what writers – or artists of any kind – refer to as being in the flow. For me, it is creating while connecting to something bigger – or connecting to something bigger by writing. At times writing at Growing Inside, I felt this so deeply. I would sit down to write at the kitchen table or, after we moved, at my desk in the sunroom, and it would just come out, and out, and out. And then I would read what had just come through me and say, Yes. It was cathartic and healing, and I learned later that it was sometimes healing, or nurturing, or validating for those who read my words, too. To me, that was the greatest gift my writing gave me – knowing that it could help others in some small way to know they are not alone. I thought of the books I’ve read, the ones that have touched me most deeply – the way they have spoken to me, the way they made me feel understood.

Isn’t the purpose of bravely sharing our truest selves to be able to resonate with each other?

My whole life I’ve written to make sense of my world and myself. I’ve shared my stories because I suspect – I hope – they are in some way universal stories. We are all on our hero’s journey, with its losses and triumphs, its lessons and its incredible potential for growth and for love. As I’ve gotten older, I’ve become braver about sharing my thoughts, my beliefs, my personal philosophy as it becomes concrete. I’ve been bolder about being authentic, and as a result I’ve discovered that it is the only way I truly want to be in the world. It is the only way I can be and now, at 44, it hurts to be anything else.

So I started writing here, in this new space, just 8 months ago. I thought of the words that make my heart sing and the energy I want to put out into the world and Love, Beauty & Abundance became its name. I thought of how much of myself I want to share, and confronted the fears that came up about being too public in an online universe that can be crazy and unforgiving. I think each time I write about the people closest to me and their privacy, their own personal stories that are theirs, wanting to respect them while respecting my need to share my own experience. I think of how I can honor them with my words. That’s not always easy to navigate – I think for any writer – but I can tell you that my intentions are good.

I don’t lie in this space. I’m not here to pretend I am something I’m not. I try to be humble and I let myself be confident – because I think we (especially women) are quicker to play down our strengths than to share and celebrate them. I am not a competitive person – I believe in abundance, that there is room for all of us to share our gifts, to share our stories. I am inspired by so many people around me – those I know and others I know only by name, or by their words. What inspires me is connection.

Thank you for joining me here, in this space. And for sharing this piece of my story. 

 

 

almost time

mandala

A mandala I made of my favorite quote by Leonard Cohen from the song, Anthem

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It’s almost June 10. Almost my Tikva’s seventh birthday. Almost the beginning of the two months of summer between the day she was born and the day she took her last breath in our arms.

During the first few years after Tikva died, those two months each year felt like they were engulfing my summer, taking away from me the possibility of truly savoring what had always been my favorite time of year. I wanted more than anything to just get to August 8, to return to the 10 months of the year that weren’t a daily reminder of the child I had lost. To be in a place where the loss of her didn’t overtake every cell of my being, every second of every day.

It hasn’t been like that in recent years. For the last two summers, in fact, I didn’t even realize it was August 7, the anniversary of her death, until I received a text or an email from a loved one wishing me a peaceful day and remembering my baby girl with me. It always moves me when someone remembers, when they reach out; and it surprises me when they remember before me.

But really, I am not so surprised. Her birthday will always matter, but the day she died holds less weight now. I think it’s because I don’t relate to Tikva simply as my child who died. She is my second daughter, one of my beloved children. She is the one I got to touch and hold and love in her body for a only short time, the one I will continue to love in my heart always. She has become – or or perhaps she always was – a part of every cell of my being. Because of that, the loss of her no longer overpowers me.

She is with me and absent. Inside me and very far away. Her story is in the past and will forever be told. I think that’s just how it is when your child dies before you.

Sometimes she feels more like an experience than a baby – I find myself talking about that time as, “During Tikva.” Because I was completely transformed by her, by her life, by the loss of her, and by the process and stretching and struggle and growth of the years since. I am not who I was before June 10, 2008. I am not who I was before January 23, 2008, when we first learned about her condition in-utero. I think I am better because of her. I think she helped me drop more deeply into who I get to be in this life.

It gets easier. The cracked and jagged edges get smoothed out a bit more with each year – like beach glass, eventually polished smooth and shiny after years of travel in both tranquil and tumultuous ocean waves. The sharp pain transforms into something that feels less raw, less fresh, as if it has been diluted with love.

On January 23, 2008, after the ultrasound that diagnosed the difficult and unclear road ahead for our daughter, I prayed in the classic sense probably for the first and only time in my life. I cried out, “Please don’t make me bury my daughter. I don’t know if I can survive burying my child.” But I did. I loved her and I buried her. And I did survive, and almost seven years have passed, and I am here. Still standing. Still loving.

And now, with the time that has passed, I can hold the hand of a friend who lost her child more recently and promise her with all my heart that she will get to a place where the jagged edges soften and the pain is consumed by love.

the way we birth

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When I was preparing to give birth for the first time more than 11 years ago, I made a birth plan with my husband and our midwives. I deeply believed in my birth plan. I was going to have my baby naturally and at home. I was going to eat and drink if and when I wanted to. I was going to walk around my apartment freely, unencumbered by an IV. I was going to trust my body and my baby to know how to do this. I was going to breathe, as I’d learned in our homebirth class, for as long as it took. I was going to avoid bright hospital lights and cold floors, doctors I didn’t have a relationship with. I trusted myself, I trusted my baby, I trusted my partner, and I trusted my midwives.

And none of that trust changed. But the plan did.

I did labor at home – for 32 hours. In between contractions, which were all in my lower back, I took occasional bites of bagel with jam and drank juice diluted with water. I sat on the exercise ball in the shower with scalding water aimed at my back for so long that I had scars afterwards. An acupuncturist friend came around hour 28 and put 16 needles into my lower back for the pain. I got to 8 centimeters but no further, for hours.

Then I looked at my husband and our midwives and said with 100% conviction and clarity, “I want to go to the hospital.” It was noon on a Tuesday.

I left the dark cocoon of our bedroom for the first time since the previous day at 5:30am to get into the car. It hurt. And the outside world – going about its business as usual all around me – felt surreal, like it was moving full speed while I was in slow motion. My sister dropped us off, my husband got a wheelchair that I didn’t use because it hurt too much to sit and I’d already been sitting for 20 painful minutes. I walked into the room and lay down on the hospital bed. I got an IV and a monitor was wrapped around my belly.

When the anesthesiologist walked in, it was as if an angel had just entered. “You’ve been laboring for how long?” “32 hours,” I replied. “Let’s get you that epidural. We’ll skip your blood work and get on with it.” All these years later, I can’t begin to describe the sensation when the medicine began to take away the pain I had been in for a day and a half. All I remember is relief, and the colorful woven hat that the anesthesiologist wore on his head.

Finally able to relax, I dilated to 10 centimeters and the doctor said I could push whenever I felt ready. Then she stepped back and let me do the work, guided still by my midwives. My daughter came out an hour later, pink and beautiful, head covered in black hair, right hand coming out “fight the power” style immediately after her head. She was pregnant herself, the doctor, 32 weeks with her first. She was a third year resident so less experienced than my midwives, who had between them attended so many births. She watched the whole thing, respecting the relationship I had developed with my midwives during my pregnancy, and the work I had done already at home.

My daughter almost did a flip off the little metal table as they checked her Apgar scores. They gave her tens, clearly this one was just fine. Four hours after she was born, the three of us were back home in the bed where I had labored. Parents. A radiantly healthy energetic baby who hated swaddles and slings and anything constricting from the second she was born. We were a family of three.

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With everything I’ve experience related to birth since then, I can’t help but view my first daughter’s birth through rose colored glasses. It wasn’t what I had planned, but it had turned out so well. Immediately following her birth, however, I gave myself a tremendous amount of grief that I had given up” and stopped laboring at home, that I had chosen to have an epidural and go to the hospital. I told myself that if I had just kept going, I could have had the homebirth I had planned.

I held this disappointment for two and a half years, until I took an 8-week midwifery course with one of the world’s most renowned homebirth midwives. I sat with her during one of our lunch breaks and told her my daughter’s birth story, and I asked her if she could tell me what had happened – why I hadn’t been able to progress past 8 centimeters no matter what I did, no matter how much time went by and how many contractions I endured, no matter what my midwives tried or what position they guided me to labor in. And her eyes got wide and her body got really still and then she popped out, “Deep transverse arrest!” “Deep transverse arrest?” “Deep transverse arrest! Go home and research that this week and you can teach the class about it when we meet again.” And I did.

A deep transverse arrest is when the baby’s head is engaged a little off in the pelvis so that its head doesn’t hit the cervix quite right. This means that the cervix, which relies on the pressure of the baby’s head along with the mother’s contractions to open fully, can’t open fully. My daughter’s head was turned just slightly, and her right hand was next to her left cheek for most of my labor (causing the painful back labor). Her head was engaged enough to get me to 8 centimeters, but no further. And with each contraction, instead of relaxing to open and create space for her to move, I literally contracted and tightened and she got more wedged in.

“You were right to go to the hospital and have an epidural, because then you could relax and make space for her slightly turned head to shift into the right position. Your body knew what it needed and you listened,” she told me, this decades-long experienced homebirth midwife. In that moment, all of my doubts and disappointment in myself dissolved and I felt peace.

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It amazes me how much we are capable of torturing ourselves as mothers about the ways in which we failed to follow our birth plans, our supposed hopes and dreams for the beginnings of our babies’ lives. It amazes me how deeply my ego was invested in the outcome of my plan – and how much of it all is just that: ego. The idea that we can actually plan how our children’s births will go, that we have any control.

I planned two homebirths and had none. A few years after my daughter was born, I miscarried another pregnancy at 10 weeks. A few years after that, I was pregnant again with Tikva, and again I planned to birth at home. And again the universe laughed. Tikva was diagnosed in utero at 21 weeks with a life threatening birth defect. She would not only be born in the hospital, but she would be born in the operating room, so that a team of neonatologists, obstetricians, anesthesiologists and nurses could be prepared for anything she needed. So that she could be put on a ventilator within minutes of her birth because she wouldn’t be able to breathe on her own.

An hour into my labor, I asked for an epidural. My labor was short – just a few hours long – and for weeks after Tikva was born I second-guessed myself again, thinking I had not needed that epidural, could have birthed her without it. But this is the thing: In that moment, I was terrified. I was about to release from the safety and warmth of my body a baby I knew would not be able to breathe or eat on her own. Inside me, she had been safe – I breathed for her and ate for her and could hold and protect her; outside, she was not. She could live for just a few minutes after her birth, or she could live a whole lifetime – none of us had any idea what was ahead, and I was scared. And I was stressed. And I did not want to be distracted by the pain of labor. And I didn’t think this through in actual thoughts, I just knew. And I fell instantly in love with that anesthesiologist too, an amazing third year resident who was so gentle and precise, and who gave me just enough medicine so that I was still able to feel the moment when Tikva came out.

The second she was out and the cord was cut, she was whisked away through a window in the wall into another room where she was put on a ventilator and given paralytic medication so she wouldn’t destabilize herself. I would really see her about an hour or two later for the first time, intubated, feeding tube in her nose, IV in her arm. My beautiful girl.

And then, our real story together began. 58 days long and every day since she breathed her last challenging breath almost 7 years ago. For those few months we were a family of four.

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Three years later I was pregnant with twins. Twins! Twins that came to us with help and with work. Twins who were all promise, all hope, all healing – for their mother, their father and their sister. Twins who would bring a beautiful whirlwind of baby energy into our home. Twins who would be closely monitored to ensure a safe pregnancy, ultrasounds and amnio and bloodwork and frequent appointments. Ten weeks in, one of them stopped growing. At 18 weeks – on Valentine’s Day – I no longer felt the other one move. A few days later, I went to the hospital to be induced and 24 hours later I delivered my very small babies-to-be. And a few hours later, after holding the one who had grown enough that he was fully formed, only just the size of my hand, we left the hospital without our babies. These beings I had also labored to birth, whose ashes I would sprinkle on the same beach where I had walked during the very beginning of my very first labor so many years before.

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I birthed my son in my heart, and another woman that I will forever be grateful to conceived and nurtured and birthed him from her body. He came out 6 weeks early by C-section. He was tiny and he was perfect. He always breathed on his own and he learned to take a bottle in a few weeks and we brought him home. He never breastfed, but I nourished him with my love and formula till he was ready for food. Two years later, he eats like a teenager and is so heavy I can barely carry him.

And we have been, once again since his birth two years ago, a family of four, surrounded by the beloved spirits of the babies we lost.

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This is the thing: You may be able to set an intention for how you’d like things to go, and you may be lucky when it all goes “right,” but it’s all just so random and out of our hands. I thought I was responsible for how healthy and strong my first daughter was, that it was all because of how well I had taken care of myself during pregnancy. But then that means I was also responsible for how fragile and sick my second daughter had been. I have no idea why her diaphragm didn’t form correctly, and neither do the doctors. I have no idea why my twins didn’t make it, or why I miscarried all those years ago and again before we adopted our son. What I know now, though, is that when it does work out well, and that healthy baby is born – it’s an incredible amazing miracle of life. And that miracle is as arbitrary as when things go another way.

I cry tears of joy and relief every time I learn about a baby who has been born healthy. If I know a friend is in labor, I take a deep breath and I exhale when I hear that all went well.

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There’s a way we talk in our culture about birth after it’s happened, and I think that way is skewed. I’ve heard it from men who have witnessed and supported their partners’ labors, referring to the women as warriors because they labored naturally, at home in a birthing tub, without pain medication or medical intervention, and gave birth to a healthy 9 pound baby that immediately knew how to suckle and nurse. I’ve also heard it from women who have been through labor – talking, like I did, about the ways in which they felt they had failed – because they hadn’t been able to do it naturally, because they had needed help, or because their babies had died. So we are warriors if it goes one way, and we are failures if it goes another. Or we are warriors in the eyes of everyone but our own critical selves.

But this is the thing: We are all warriors. We are warriors when we birth, however we birth. We are warriors when we need help to birth. We are warriors whether or not we nurse. We are warriors whether we wear our babies or sleep with our babies; whether or not they sleep through the night. We are warriors when our babies are conceived with assistance. We are warriors when we are not able to conceive or carry a baby to term. We are warriors when someone else carries our babies for us. We are warriors when we miscarry. We are warriors when our babies are born still. We are warriors when we mother by caring for our babies’ graves. We are warriors when we choose not to have babies and we love in other ways. We are warriors when we are allies for other women. We are warriors in how we nurture the world.

We are warriors because, in some way, we choose to love. Whatever that love looks like. However it is birthed.

Happy Mother’s Day to all of the warriors out there. I hope you know who you are.

fresh spring air

I attended a funeral yesterday for someone very dear in our community. Her death was unexpected, accidental. Her time came too soon. It was a graveside funeral attended by so many. She was such a presence in the community that it’s impossible right now to imagine it without her. She was one of the first people I met here almost two years ago, instantly welcoming. She embraced my children and they loved her right back.

Hers was the third graveside funeral I have attended in my lifetime. The last one was for my baby daughter, Tikva, almost seven years ago. My most vivid imprint from that day was that her coffin was so small that the man from the funeral home carried it in his arms, without the gurney he had brought that is used for larger coffins. The first graveside funeral I went to was in Paris almost 20 years ago when I traveled with my father to be with our family as we buried a patriarch, my beloved great uncle. The other funerals I’ve attended have all been indoors, in a chapel or synagogue or church.

When I was in eighth grade, after a fierce battle with cancer, my grandmother died just a few months before my bat mitzvah. She was a Holocaust survivor and her determination and fight showed in how long she survived with pancreatic cancer. I loved her so much; being in her presence was like being enveloped in love and nurturing. She knit, she crocheted, she cooked, she baked, she hugged. It was April when she died and the grave diggers were on strike, so she wasn’t buried until a few weeks later. My mom didn’t let me go to the cemetery that day, I’m not sure why. She said it was enough that I had been at her service at the funeral home a few weeks before. It didn’t feel like enough to me. Perhaps there is some kind of closure in seeing a loved one’s body lowered into the ground, and something inside me knew I needed that. I had dreams for years afterwards that I carried my grandmother’s coffin around, looking for a place to bury it.

When I was a freshman in high school, a friend took his own life on the train tracks behind the school. I remember the cops thought a homeless person had been killed by the train, because it was 1986 and my friend wore a trench coat and dyed his hair black, and only homeless people wore trench coats, right? I remember the minister at the church service wore a belt buckle that said “BOB.” I think Pink Floyd was played.

I’ve been to two viewings at Catholic funerals, but only entered the room where the deceased lay at one of them. Viewings are unfamiliar to most Jews, whose dead are buried naked except for a muslin shroud and sometimes a prayer shawl, in a simple pine box, and caskets are always closed.

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At one point yesterday, close to the end of the service, I moved away from the crowd and looked down the hill, listening to one of the rabbis as he spoke so beautifully. I don’t know what I was thinking about exactly, but it felt as if I were holding all of the deaths I had experienced in the past and all the deaths that awaited in the future in that one present moment. I took a deep breath, then another. Cemeteries have always felt strangely peaceful to me, especially on sunny days. Birds flew overhead, a fuzzy caterpillar walked on the grass and paused for a moment next to a man’s shoe, a turtle swam in the man made lake nearby. At my feet was a headstone for a man named Sol who had died in 2002 at the age of 92. I hope I get at least 92 years.

There is so much I don’t know about what awaits me, but that doesn’t really scare me. It’s kind of freeing to accept all I do not know. I go about my days hoping I will get so many others. Then I stop to pause in moments like these – standing graveside waiting to help shovel dirt over the burial place of a friend – and I think about how precious life is, how finite, how miraculous. In Tikva I learned that some souls do all of the work of an entire lifetime in 58 days, while others need decades. From my friend who was buried yesterday, I am reminded to live fully, to love unconditionally, and to show gratitude for how precious it all is and how lucky I am to be able to take another deep breath of fresh spring air.

Rest in peace, M. I will miss you.

almost

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I wrote something on one of my earlier blogs about lemonade. It wasn’t really about lemonade; lemonade was just a metaphor. I wrote it almost four years ago about something that happened exactly four years ago today. I wrote it about the day I birthed twins who had stopped growing, one at 10 weeks and the other at 18 weeks. So I went searching for that post today to reread it, the first time I have reread it in at least three years. I didn’t wake up aware of this strange anniversary; I realized it a few hours into my day. I realized I felt neutral about it, not triggered, not emotional. I realized that four years feels like longer. It feels far away and yet I can bring myself right back to that hospital room where drugs administered through an IV slowly convinced my hesitant, mid-pregnant body that it was time to release my babies.

A lot of hope left me that day. Hope for the promise they brought after the loss of Tikva two and a half years before. Hope for siblings for my older daughter, who had waited for so long to be a big sister. I wrote that post with both sadness and bitterness, holding a white flag of surrender.

And yet hope came back.

I can’t say exactly how or when, but it came back, slowly, over time. We chose a different path to growing our family, to bringing into our fold another child to love and hold and help to become himself. There was a point when I let go of the need for that child to come from my body, and with that release came a calm I hadn’t felt since I learned about Tikva’s condition when I was 21 weeks pregnant with her seven years ago. And here I am, four years since I delivered two almost babies who had died, with a feisty, smiley almost-two-year-old kicking soccer balls and throwing footballs to his big sister, laughing as they tackle each other on the rug.

On February 22, 2011, I wrote:

You don’t get to love the way you think you’re prepared to, but you do get to love the way you discover you can.

Somehow even then I knew I needed to understand this, or at least come to believe it. And I was right.

I wonder what life would be like if three-and-a-half-year-old twins were running around the house right now. Or if Tikva had lived, and a six-and-a-half-year-old was playing with her older sister. I think of how I wouldn’t have gotten pregnant with the twins if Tikva had lived; how we wouldn’t have adopted our son if any of them had lived.

I think a lot about parallel universes that might exist side by side with the one I exist in; other roads I was on that did not continue because my life took one detour, and then another. What it would be like if… And if those realities are perhaps still happening somewhere in time.

I’m remembering those little ones today, my almost babies who got away. How much I wanted them and loved them for the time I carried them and held them. How different it is to mother them than it is to mother my living children. How I will love them always.