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.

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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.

 

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on fear and courage

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I went ziplining with my daughter and a small group of women and one man a few weeks ago. My daughter was the only one I knew well in the group, but there is something about cruising 210 feet above the ground in 30 seconds, between two trees that stand a quarter mile apart from each other, that brings people together.

I was absolutely terrified but I knew I had no choice but to try it. I’m not much of a fear of missing out kind of person, for me it was more of a fear of disappointing myself, a fear of regret kind of thing. I knew that if I had the opportunity and didn’t take it, I would be letting myself down.

I told myself that I had already done something much more terrifying: I had jumped out of a plane on a tandem skydive for my 25th birthday, an unforgettable experience. How much more frightening could ziplining be? But then I told myself that I was almost 20 years older now, a wife, a mother, more personally aware of things like pain and suffering and loss… and death. I’ve noticed something about inhibition as I’ve gotten older: Certain things are more scary now than they were when I was in my twenties, while others feel so much more surmountable.

There was nothing logical about my fear. I knew that if anyone had died or been seriously injured on that zipline, the place would no longer be in business. I knew I wouldn’t fall. I knew I wouldn’t crash into a tree or fall off a platform. I knew that the worst thing that could happen was that I would spin around, go too slow and have to drag myself in at the end – basically that I wouldn’t get to go fast enough to have the most fun possible. Our guides were phenomenal and professional, I knew I truly had nothing to fear.

But I could still feel my heart thumping, fast and hard and loud. I still couldn’t believe what I was about to do.

My 11-year-old daughter was 100% totally and completely unafraid. She knew there was no real risk, so why waste a second being scared? She was excited and confident and I did my best to follow her lead. The other people my age and I were not surprised; we talked about how invincible you feel when you’re a kid – of course she was undaunted and brave. That’s also her personality – she came into this world with things to do and she has never looked back.

I asked myself when that changes, when fear enters in and why. I told our guides I would need to be one of the first to try the first zipline in our group of nine because I knew that watching eight people go ahead of me would give me too much time for further freak-out. My daughter said she would go first, and I would go second.

There were seven zips, and there was the option to stop after three. The fourth and fifth were the longest – the quarter-mile ones that last for 30 long seconds, provide the most beautiful views and are the most exciting. I knew I had no choice but to do all seven. Not because of any pressure from my daughter, but again… that fear of regret thing. And the determination that I could turn my fear into one of those surmountable things.

I was shaking and about to cry after the first short zip. I knew that my response was purely physical, it felt beyond reason and out of my control. I wondered what had just happened in my body chemistry as I experienced fear, and as I overcame that fear enough to do something absolutely frightening. What was going on inside my body that caused my hands to shake and brought the tears I did everything in my power to breathe through – all of these physical feelings I was having after having successfully crossed the first line and reached the second platform? Why was I clinging for my life to that tree trunk, afraid beyond logic of being so high up while I could see, not six inches from my face, the harness that would keep me from falling?

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I shook a little less after the second zip across, and by the third I was no longer shaking and I no longer felt like crying. Then I found myself staring down the fourth zip – the longest, highest, fastest one. The one where the opposite platform – my destination – was so far away that I couldn’t see it nor the guide who would be waiting there for me. We were told to look to our left at the incredible view of the Smoky Mountains as we zipped across, that it was breathtaking.

My heart raced, and I surrendered to trust, lifted my feet and told the guide on my platform that I was ready and she could let me go. My body felt rigid but I was determined to stay straight and move gracefully across. I could hear myself breathing as if I were laboring to birth one of my children – rhythmic breathing, consistent, loud and determined. I did look to my left and I did see the view, quickly, afraid that if I turned my head too much I would start to spin. It was breathtaking. And then I was on the other side. And I almost cried, but not from fear. From elation, from relief, from pride in myself.

I zipped back across that same distance on the fifth run. By then I felt like the fear was no longer a part of my experience, a thing I had surmounted. The sixth and seventh zips were short and easy and I even let go completely of my hands and let myself spin and play. The final tree’s platform sat way high up and the tree was small and swayed in the wind as it held us – 8 women, 1 man and 2 guides. I can’t say I felt stable until I was back on solid ground, but by then on that final platform, I knew completely that I was safe.

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I’m not sure exactly when, but sometime in the last few years I’ve become increasingly aware of the finite nature of the years I have ahead of me. That is assuming, of course, that nothing unexpected happens and I get to follow in the footsteps of my paternal family and live an abundantly long life that takes me almost to 100. Ninety-something is a lot of years, and yet it feels like not enough as I find myself about halfway there. I have moments of panic where I think, How did I get to my forties already? Have I done enough already? Have I wasted time I can never get back? My usual response to calm myself down is to think of all the things I have done – the big things – and tell my story in a different way: My, how full and abundant the last 44 years have been! Look at me. I am so incredibly lucky.

Still, I feel closer to aging now than I ever have. My father struggles with a degenerative disease and I can’t help but wonder how long I have left when I can still call him on the phone. I think about my beloved great aunt who died two years ago at almost 96, how even though she lived overseas I could always call her and hear her voice, and how even though I can’t anymore it still feels like she is close. My parents’ generation has now become the grandparents, and my generation – we are the grownups. We are the ones holding the challenges our parents once held – the aging parents, the mortgages, life insurance policies, illnesses. We are the ones becoming aware of our fragility, of our finiteness.

I ask myself if it’s death I am afraid of. I’m not sure. When I was a child, maybe around my daughter’s age, I was sometimes afraid of going to sleep, fearful that I wouldn’t wake up. I’m not sure where that fear came from and I don’t remember ever speaking to my parents about it. I was a bit of an insomniac then, and I would stay up very late, the last one in the house to go to sleep. I would lay thinking and sometimes I would worry, and eventually sleep would take over. I felt relief in the mornings when my parents would wake me up and I was still very much alive.

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I heard a story once about a very old woman who was on her deathbed. Someone was interviewing her for a magazine article and they asked if she was afraid of dying. She had a smile on her face and a sense of peace in her entire being, and she responded that she wasn’t afraid at all because she would at last be reunited with her baby. She had lost a child over 65 years before, at birth, and decades later she still waited to see her again.

Tomorrow will be seven years since I held my daughter Tikva as she breathed her final breaths. She feels closest to me in the most full and courageous moments of my life – which are sometimes also some of the most challenging moments. It’s as if she is saying to me, Yes! This is how to live your life deeply. I could feel her spirit whirling high up in those trees I zipped through. I knew very soon after she died that the grief I had to work through was for me, not for her – that she didn’t need me to spend the rest of my days sad and bitter because she was gone. I knew that I would honor her life most powerfully by living my life well. By truly living.

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I consider myself an emotionally courageous person. The hardest parts of life don’t scare me, and I have been through my share. I am an easy crier, tears don’t scare or worry me, my own or others. I worry more when I’m going through something difficult and I can’t seem to cry, because it usually means I’m stuffing something down that will eventually catch up with me. (And it always does).

In seventh grade peer counseling class, I learned about active listening, and I found a language for something that already came easily to me. I know now that I was learning then about the power of compassion, about unconditional love. I learned early that connection is what I live for, that friendships feed my soul. I don’t shy away when those around me are going through something challenging. I can sit with emotional pain, with loss, grief, sorrow and anger – others’ and my own. In this space, I am unafraid.

But I have always felt much braver emotionally than I am physically. At least that’s what I came to believe. Maybe that’s just the story I’ve been telling myself and it’s actually just that – a story, one that isn’t really true.

I used to say that I can handle any amount of emotional pain, it’s the physical pain I can’t do. But then I gave birth. And I had shingles. And I’ve struggled with an autoimmune condition that at times has been incredibly painful. And I’m still here, a little scarred, a little cracked, but very much intact. Still courageous. Perhaps more courageous now than before. Definitely much more aware of the preciousness of life.

I used to say that I my strength is in my heart, in my mind, not in my body. But it takes great strength, great courage, great faith and fearlessness to live with a chronic illness – and to live well. And I think of all the physical things I have tried at different times in my life: Skydiving. Ziplining. Boxing lessons where I sweat more than I ever had before, and which made me feel like a total badass. Dance classes where I had so much fun even while getting tangled in my feet. Rock climbing at the climbing gym and feeling mighty and high (and totally badass) as I looked way down to the floor. Lifting weights with my husband when he was a personal trainer, spotting him on weights twice as heavy as those I lifted myself. In perfect form on the pilates reformer, unleashing the strength in my core. That moment when I had done yoga long enough that even the most challenging poses came with ease. And even those six months I spent trying out running before I acknowledged that it wasn’t for me.

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I’ve been thinking a lot lately about where fear originates, and also what creates fearlessness. I’ve been thinking about the true meaning of courage and all the ways every single one of us is courageous. I’ve been thinking about aging and death, and what it is that scares me when I remember, Holy shit, I’m 44?! I’ve been thinking about how fragile we all are, and how mighty we are at the same time.

I don’t think they are exactly opposites, but perhaps fear and courage are two sides of the same coin. Perhaps they need each other, cannot exist without each other. Perhaps it is fear that inspires courage, and I needed the fear to push me off that platform and across those trees.

It’s been a strange summer, one in which I have spent a good deal of time extremely aware of the fragility of life. The days I sat at my father’s bedside last month reminded me of the days I spent in the NICU sitting with Tikva seven summers ago, as she struggled to breathe and even on those days when she breathed a little more easily. I remembered the fear I felt in those moments when doctors and nurses would rush to her bedside in response to a code pink, and also the grace I felt knowing that she was held – I was held – by something so much bigger.

I held the image of the red tail hawk so tightly throughout Tikva’s short life, and seven years ago tomorrow I released it as her spirit was finally able to soar. When I went skydiving almost 20 years ago, what I loved most were the moments before the parachute opened up, the moments that were the closest thing to soaring I have ever experienced, when I was literally floating on the wind.

I tapped in just a little to that feeling as I zipped across the trees two weeks ago. Even in those moments of fear and courage, I knew I was held. And like my Tikva and the red tail hawk, I knew that it was up to me to play.

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almost time

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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.

wired for love

Love is all you need

“The only map of your right life is written on your soul at its most peaceful, and the only sure compass is your heart at its most open.” ~Martha Beck

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What did you come here to do? What is that thing at the core of your being that most vividly expresses who you are?

Did you come to dance with confident abandon? Did you come to nurture others? Did you come to make the world more beautiful with your art, with your poetry, with your song?

What drives you? What pulls you? What moves you along the road of challenge and growth and expansion?

Are you driven by connection? Are you drawn to success? How do you know you have succeeded?

Are you wired for love?

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I know this about myself: Love is what guides me, it is my North Star. In everything and always. Love is at the heart of all that matters to me. I think I have always know this at my core; but at this time, in this place, I am sure.

In the weeks leading to our wedding, my husband and I were asked by a Jewish teacher, What is the one word that best describes the other person for you? My husband, in my eyes, was calm. To him, I was caring. I believe in these, believe that they are more than just a representation of what each of us needed from the other.

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Beatles music was the anthem of my childhood. I spent hours lying belly down on the shag carpet of our living room, Beatles songs playing while I looked at every detail of their vinyl album covers and followed along with the lyrics. George Harrison was my favorite, for me the most handsome Beatle. I preferred Paul’s voice to John’s, but some of John’s songs were my favorites. I could sing along to practically every song on every album with every member of my family. We always joined together on the shoop in Come Together, no matter where we were in our one-story house, where the walls were paper thin and sound traveled freely. I remember shooping together in the car on road trips when I was very little in France. I took to heart John’s reminder that love is all you need. Paul guided me to let it be when life felt heavy. Rocky Raccoon would invoke images in my mind inspired by the westerns I watched on TV with my dad. One day I might have to write a book titled, The Story of My Life in Beatles Songs, something like the Sgt. Pepper movie from 1978, which caused a short-lived crush on Peter Frampton when it played on TV in fourth grade.

In the months after my daughter Tikva died 58 days after she was born, we asked each other what should go on her headstone besides her name and the dates of her short but huge life. As the mother of a dead child, creating my daughter’s headstone was a way in which I could express my love, a way I could still mother her, call out to the universe that she will always be my child. A way of honoring the greatest lesson she taught me – I believe the most important lesson I will ever learn: how to love unconditionally.

Following our first meeting with the owner of the headstone company, sitting at an all you can eat salad bar with my husband, it was clear what those words would be:

Love is all you need.

The Beatles had played in the children’s hospital OR the day the doctors took our fragile daughter to another floor for an echocardiogram. Hey Jude, Let It Be, and All You Need Is Love, one song after another guiding the medical team. Her eyes were open so wide during that procedure as she experienced the shock of being in a place that wasn’t her small warm bed in the NICU, doctors and nurses all around her. I was afraid for her, I wanted to hold her and comfort her, put her at ease – something I couldn’t do because she was in such fragile condition most of the time and even a mama’s hug could do her harm. I had to step back against the wall and let the doctors do their job in that room.

So I stood back and listened to the music. I listened to Paul’s reminder and thought about the irony that a Jewish girl would feel such a connection to Mother Mary because of her lifelong connection to a song. I focused on love and I watched my tiny daughter in that big space, and I looked at my husband who had also been listening beside me.

Of course the Beatles are playing, my husband’s eyes told me. Of course, my eyes spoke back.

I rely on love with every fiber of my being. I rely on the love of others who have guided my way through their example and caring for almost 44 years. I rely on the love within to strengthen me during trying times. I rely on the love that I am in order to find my way forward. I try to shine love, reflect love, be love.

Sometimes I forget. Other times I remember. I know I have succeeded when I feel peaceful, trusting, connected.

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I traveled back home with my family recently to celebrate Passover with everyone. Back home is where I grew up, where my husband grew up, where our daughters were born. It’s where most of our extended families live. Back home is familiar, the place that will always hold a piece of my heart. Back home is one of the most beautiful places on earth – I will never deny that. But it’s not the place that pulls me anymore, because for me home is where I am now, where my husband and children are, where we have made our home. What pulls me now about back home is our family and those I call my framily. My people whom I’ve loved for a very long time. And the Pacific Ocean.

IMG_6144I went with my father to visit Tikva’s grave during our visit. It was a sunny spring day with only a few clouds in the blue sky and a small breeze. As is his tradition, my father read Goodnight Moon to his granddaughter, as he had during his visits to the hospital. As is my tradition, I brought a rose from the bush we planted with her placenta in the garden of our aunt and uncle. There was a golden beetle taking a walk around the base of her headstone, like the scarab that represented eternal life in the tombs of ancient Egyptian kings.

Of course.

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My father told me the most beautiful story one day when I was with him. It had been a tiring day for him, but the grandchildren playing around him – my daughter and son and niece – brought light and peace. At one point we sat down together, away from the busy-ness, and he asked, “Do you want to hear a story?” His dark eyes got incredibly clear and focused and he started. It was a love story from when he was 21 years old, on his way from Greece to Israel. It was the mid-1960s and a romantic and revolutionary time to be moving to a kibbutz in Israel. He told me about a young woman he met on the ferry who lived with a disease she’d had her whole life. He didn’t remember what exactly, but it required ongoing care and blood transfusions. He saw her just a few times after they arrived in Israel, then fell out of touch.

Listening, I marveled at the clarity in my father’s eyes, which had seemed tired earlier that day. His words came easily as he told me this long and beautiful story, more easily than they come sometimes because of the Parkinson’s he courageously lives with. I wondered why this experience had come back to him then, 50 years later. He spoke about this woman, this young love, as if with some regret that he had not done more to love her for a longer time. I reminded him that he didn’t know then what he knows now, that he was only 21 years old, barely out of his teens. There was such compassion in his telling, as if now he understood what it is like to live with a disease.

I love my father more than the world. I always have. Without knowing it, he created for me from very early on my idea of the perfect man. Loyal and nurturing and dedicated and worldly and smart and soulful and handsome, so very handsome. He introduced me to westerns and science fiction, taught me history and politics and multiplication tables, brought me with him on planes to Europe, hung a basketball net above the garage for me to play with, brought me Playmobil and Legos and Kinder eggs from Europe on his business trips, took us to get donuts and sit on the roof of the car to watch fireworks on the Fourth of July, took me on a bike ride around town to teach me how to navigate using a map, helped me buy my first car. After my mother left him alone with two daughters when he was about my age, he did everything in his power to keep our lives stable. My father helped teach me what it means to love.

It’s not easy to watch your parents age. It’s hard to do so without being hit with the thought that one day they will be gone. I know many who have already lost parents. During our visit back home, my husband pointed out to the extended family how much was the same as when he was a child, except that now we fill the shoes of our parents, and they fill the shoes of their parents, and the kids… well, they are the new generation who get to be the kids. The constant throughout time is the gaggle of cousins – this time ages two to eleven – playing together and chasing each other around the house; good and abundant food; and love.

It’s the love that is eternal.

all the things that are out of my hands

When I was a child in France, the remedy for all minor scrapes and cuts was mercurochrome. The liquid, applied with a little brush like on a nail polish bottle, would leave my knee or finger candy apple red with a golden metallic sheen, and it would stop the bleeding almost immediately. It was in the medicine cabinet of every home and you could usually see mercurochrome red spots on the bodies of at least a few kids at school each day. Mercurochrome is no longer sold in the U.S., France or Germany because it contains mercury (thus the name). I didn’t know this until recently, when I looked it up to see why I’d never encountered it in the 11 years I have been a parent.

Mercury? Really? I was an active kid and I got a lot of scrapes. I vividly remember watching the bleeding stop as the mercurochrome dried on my knee. That’s at least seven years (possibly longer, as I’m pretty sure a bottle of mercurochrome made its way with the rest of our belongings when we moved from France to the U.S.) of mercury regularly making its way into my bloodstream through open cuts. Great.

I’ve never had a desire to have my levels of heavy metals measured. To be honest, I’m pretty sure I’m walking around with heavy metals in my body just as most of us are. Lead from the old paint in that gorgeous Victorian I lived in during my mid-twenties, and the gasoline in cars when I was little; mercury from mercurochrome and dental fillings and tuna salad and sushi and probably some of the vaccines from when I was little and they hadn’t changed the formula yet to avoid thimerosal. I can only imagine what the process is to eliminate these metals from our bodies – if that is even entirely possible (I’m dubious). I got my share of cavities when I was younger and those mercury fillings hung out in my molars for decades, until I had them replaced with white fillings as they began to wear and crack during my thirties. I know that’s not a benign procedure, that dentists can only do their best to keep that mercury from getting into your system as it is being removed with a drill.

Every time I take my daughter in for a cleaning, the dentist brings up coating her very back molars with a plastic resin to prevent cavities. And each time I let him know I’m not interested – that I don’t like the thought of her slowly absorbing the chemicals in plastic without knowing the possible effects. Since it’s a relatively new thing in children’s oral hygiene, they don’t yet know what they now know about mercury fillings. So I remind my daughter to spend a few extra moments on those back teeth each time she brushes.

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When we moved to the Midwest from California in 2009, I met the head of neonatology of a major children’s hospital. We sat in his office for over an hour and I told him about Tikva, how she had been diagnosed with a congenital diaphragmatic hernia (CDH) in utero and lived for two months after she was born. CDH is less rare than many other congenital conditions, but it is less researched than it could be because few babies survive, and those that do are often too fragile to have their bodies poked and prodded any more than they need to be to support them. As I sat with the neonatologist, he told me about CDH research they were participating in with a university in Australia. The research was being done on sheep, and diaphragmatic hernia in fetuses was induced by injecting a concentrated amount of a regularly used herbicide into the amniotic fluid while the sheep were in utero.

An herbicide. A chemical that is toxic to plants and is used in gardens to destroy unwanted vegetation. Injected into the amniotic sac of a fetal sheep, it quickly induces the forming diaphragm not to form correctly, completely or at all. 

Shortly after I met the neonatologist, my husband was bemoaning the growing amount of crab grass on our front and back lawns. He wanted to spray it with some kind of weed killer and replace the crab grass with new healthy grass seed. I listened to him complain about that crab grass for the entire four years we lived in that house, but I wouldn’t let him spray. Instead, my head spun with thoughts about when my body could have unknowingly taken in enough herbicide chemicals to eventually cause my baby’s diaphragm not to form completely.

I had hoped to get a job at the children’s hospital during our time in the Midwest; give meaning to my daughter’s short life by putting my management skills to use on behalf of others like her and the medical staff who care for them. It’s probably a good thing I didn’t. Sometimes knowing too much is not helpful.

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So what do we do with all that information? What do we do with all those lists of things that are out there, all those things that are or might be bad for us, that can harm us? What do we do with the fears they bring up? Can there be a balance between fearing everything and making the best choices we can with all the things we know and the exponentially larger number of things we don’t know?

I have no idea what caused the hole in my daughter’s diaphragm. It wasn’t the shingles I had while pregnant, the doctors assured me, because by the time I got my first blister her diaphragm had already formed. Was my body not ready to grow a healthy child because I had struggled with an auto immune condition and taken medication for almost two years until my symptoms healed just before getting pregnant?

Shortly after Tikva died I read something in the book, Healing With Whole Foods, that really angered me. Among other prohibitions to ensure successful conception and healthy pregnancy, the book instructed: Do not conceive if either partner is weak or sick. That hit me like a brick on the back of my head, and I almost threw the book across the room. I have barely picked it up since, and this is why: I think it is completely arrogant to think that we have much control over any of it. I used to think that the reason my older daughter was born so healthy is because I did “everything right” while I was pregnant with her. But I was wrong. She is radiantly healthy because that is the constitution and the spirit she brought with her into this life. Would she have been born as healthy if I had been an IV drug user while carrying her? Doubtful. But beyond not ingesting knowingly addictive and harmful drugs while pregnant, beyond eating enough good food and drinking a lot of water and getting good rest – to take care of both my unborn baby and myself – I think the rest is just random luck. Nobody warned me about avoiding deli meats while pregnant, and I spent a good month of my first trimester eating turkey sandwiches daily. I ate soft cheeses daily for five weeks as we traveled through Turkey during the second half of my pregnancy. And she turned out completely fine. (And honestly, do women really avoid sushi in Japan when they get pregnant?)

A babylost friend I met shortly after Tikva died wrote about the random shitstorm of life, and how when our babies died we were caught right in the eye of the storm. I know, now, what an incredible random miracle it is when everything goes “right” and a baby is born healthy and easily. I know more about the thousands of ways babies can die than I wish I knew, and yet there is something freeing in that: Because I am not in control. I know that for every one danger I can try to protect my children from, there are ten I cannot even imagine or predict.

I hope more than anything that my children always remain as healthy and strong as they are now. I hope they will thrive free of illness and challenges. I hope tragedy stays far away from them and those they love, and I know that about 99% of that is not in my hands. I will continue to feed them well, good and healthy food, teaching them healthy habits that I hope they will embrace as adults. I will make sure they wear a helmet when they ride a bike. I will take them for their pediatrician and dental checkups regularly. I will sign them up for softball and soccer and (gulp) even football. I will kiss their booboos and hug them when they fall, carry bandaids in my purse at all times, bring home popsicles when they get sick. I will give them their vitamins and, if they need fillings, get the white ones. I will teach them self-care and self-love. And I will love them unconditionally.

Beyond that? I’m not so sure any of the rest is in my control. And to be honest, I find that liberating. Something about knowing I am doing my best as a mother, as a human being, and that is enough.

almost

DSC_0962

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.

 

honoring the healers and the helpers

 

A few days ago on February 1, UCSF Benioff Children’s Hospital moved from its original home on Parnassus Avenue to its new standalone children’s hospital in Mission Bay. The intensive care nursery, labor and delivery, and the fetal treatment center are no longer on the fifteenth floor of Parnassus, nestled so often in the thickest fog and boasting spectacular views of the city, the Golden Gate Bridge and the eucalyptus trees that are home to so many red tail hawks.

On February first, one of my second daughter Tikva’s two primary neonatologists during the 58 days of her life posted a picture on his Facebook page that gave me chills. In it, an endless row of ambulances was lined up in front of the hospital on Parnassus, departing every five minutes with a child who was moving from the old hospital to the new. Once they arrived at Mission Bay and the child had been moved to their new space, the ambulances returned to Parnassus to continue. Can you imagine what went into coordinating that effort? I hope you’ve never had a baby in the NICU, but if you have, you know how complex a baby’s space in the hospital can be, how many machines, wires, tubes, IV bags of medications and other wonders of science and medicine are necessary. Picturing those babies, each in their own ambulance for the ride across town, accompanied by nurses and EMTs and I imagine in some cases doctors, is what gave me those chills.

UCSF Sunset

It’s been six and a half years since Tikva died. 40 times as long as she was alive. During the year after she died, when we still lived in San Francisco, that 15-story hospital on Parnassus was a haunting presence – the place where she lived, the place where she fought to breathe, the place where we loved her unconditionally, not knowing how much time we had, the place where we said goodbye and sent her spirit on its way. Sometimes I would drive by, from near or far, and the hospital would be buried in fog so thick you couldn’t see the top floors. Other times, as if honoring its namesake neighborhood, it would be showered in the glow of the sunset. Now when I visit the city of my heart, I feel a sense of peace and awe at this place that was the setting for a chapter in my story that changed me forever into who I am.
UCSF Close
In Tikva’s nurses and doctors and social workers, I saw angels walking on earth. Something about people who choose to care for our tiniest and most fragile beings… I’ve never met anyone like them before or since. They loved my daughter as if she were their own. They celebrated good days with us and cried with us during the hard days. They ran to her bedside en masse during a code pink and did everything to help her. They held our hands, helped us hold her even when she was so fragile that leaving her little bed was dangerous. They took pictures of her, prints of her tiny hands and feet. They gave her sponge baths and changed her diapers and blankets, reinserted her feeding tube when she would pull it out, monitored her numbers, her x-rays. And on her last night, they helped us bring her outside to breathe fresh air for the first time.
UCSF Lincoln
For me Parnassus will always be a place where magic happened. Not just for the families of the babies who make it home, but for parents like me whose babies lived their entire lives there. I can’t say every parent feels like this, but I do. I am forever grateful to you, Tikva’s caregivers – Allyson, Elaine, Robin, Sue, Chrissy, Roberta, Tom, Stephanie and everyone else who loved our daughter and who held us through. Thank you for your wisdom and your big, big hearts. Thank you for all you are and for all you do each day. I know your work continues across town.