Reopening a Broken Heart

Trigger warning: grief and loss, neonatal loss, twin loss

I wondered, in the beginning, what happens to the grief.

I had started having a lot of vivid dreams about William earlier this year, and I knew it was time to revisit the cove where we let his ashes go almost 10 years ago.

Elliott!

William, my son who passed away at 6 days old (10 years ago Bastille Day), seemed to be calling me. I had dreams where I was surrounded by him, his light. He was a blue light, and the dreams were comforting because I needed to sense him. They brought this stark reminder of his absence, and this time, they also reminded me I had something I needed to do.

His twin, Elliott, hit double digits this year and continues to baffle me frequently with his intelligence, resilience, and heart. He is brave, and strong enough to climb boulders and mountains, has ideas about games and programs to design, reads books and writes stories. He loves his little sister and sleeps amongst all of the household pets, whom are drawn to his gentle nature and sense his kindness (the beasts actually battle over the spots closest to him in bed, cats vs. dogs being the most common matchup). He is curious and information-seeking; for example, this year he informed me that owls have long legs and (I couldn’t believe it without a google search) they do.

He is incredible. He saved my life.

When William died, I was flooded with grief. It felt impossible to imagine even an idea of the steps I could take to grasp onto something, anything, that would remediate the feeling that my heart was an open, bleeding, vulnerable wound that could never heal, not ever. In fact, the only thing that helped me to get out of bed at that time was the knowledge that I had to keep it together in some form in order to help Elliott through his battle for his life, as he faced the NICU and all of its pain. If I wasn’t there, if his father wasn’t there, he would have been alone, after spending months squished next to his brother through their gestation, their every gesture and heartbeat registering with each other even before I could feel their tiny movements.

Grief is strange. There are moments, sometimes even for more prolonged time now, where it seems ephemeral. When it surges up again more powerfully, I feel a sense of guilt for its prior absence. It tends to visit in visions of what it would be like if he was here: What would it be like if he was having his first day of 4th grade, how would he dress for Halloween, what would his temperament have been or what talents would he have had, what kind of song would he have performed in the piano recital, what sports would he have wanted to play. How would he and I have related, or he and his dad. How would he and Elliott have gotten along, what would he have thought of his little sister. Sometimes it comes at certain times of the year, unconsciously, and it only registers in my body like a heavy weight on my chest. When the grief visits, it inspires a deep ache in my heart and guts, at times memories of the torture it was to have to let him go, and holding him as he died, howling the deepest cry I’ve ever uttered as I felt it happen, then the doctors and nurses taking his body away down the hall, and finally, letting his ashes go into the ocean. When the grief visits, more often than not you sit with it alone.

Elliott and his dad.

And then it fades. And then I have to do things, and be functional and tend to the myriad responsibilities in my life. It seems to go in waves, in sets. But it seems as time passes, more frequently I find myself looking away and feeling terrible for it, the sets get further apart and smaller, but then another high tide will hit and there’s no choice but to sit and surrender as it swallows you again.

Greta!

The mythology we have around “closure”, “coming to terms”, “making meaning”, “finding peace” is so powerful, and one who is grieving often wonders if they will ever get that gift: the gift of feeling at peace with the loss of their child. That maybe one day they will be able to remember what it was like before time stopped and everything went sideways, when everything fell beneath a dark, haunting and uncertain shadow and we all at once forgot who we were before, because we couldn’t be that person any more. That person was gone, dead along with our child, and in her place was a person walking with an absence that nags and pulls us unpredictably back beneath the surface of the water, never free of the knowledge that a piece of our soul has been taken away, and unable at times to be present with joy. If it was linear, at least it could be predictable.

In July, we made the trek to William’s cove in Big Sur.

For those that have never been, Big Sur is along the northern California coast: a place that wasn’t particularly accessible to humans until 1937, when a precarious highway was constructed along its cliffs, spidering down its mystical coastline and hugging the mountains beside it, enabling humans to explore its magnificent surroundings and state parks. There is a lighthouse there whose primary purpose was (and still is) to ward off ships due to the treacherous nature of the coast’s tides, bluffs and rocks. There is no uncertainty when observing the ocean there, that it is powerful. I’ve heard that the big fish like to hang out in its waters. Big Sur is as spellbinding as it is dangerous. “Ethereal” is an understatement when considering Big Sur: it is holy.

It had been 10 years, and my brain had suppressed the memory of this sacred space, perhaps in an effort to keep the grief at bay. Immediately upon being there I recognized my need to have been there, a familiar need, just one I hadn’t been able to be conscious of for some time; and I felt gratitude for recognizing it again. Staring at the trees and cliffs and the ocean, hiking down to William’s cove, it was like I was in my own body again, it was like I was whole with who I was. It was like I was present again, because I was embracing my grief again, the very grief I had made some concerted efforts to ignore in an effort to be “functional”.

Once again I was human, humbled by the gravity of nature’s force, and in acknowledgement of my powerlessness in the face of it.

Home

When we arrived in the cove, I climbed onto a stone where a creek flows into the ocean, and suddenly sank into my body, recognizing a feeling I hadn’t had in ten years. A feeling that was both familiar and terrifying, comforting and unsettling, a story that I lived and live that took me back into its arms. I knew in that moment that I’d found myself atop the exact same stone I had crouched on that day a lifetime ago, as a huge piece of my heart went out into the sea and I had to observe, in complete surrender to it all, as William once again slipped away, and nature wrought her powerful force, and I in turn transformed into a person that I no longer recognized nor understood.

Witnessing my children, now, in this present moment, as they explored this space while I sobbed, letting out the air I had held in for a decade, I could recognize again that this is all it is: this very moment. And all one can do is sit in surrender and gratitude for it all, as painful (and beautiful and loving and vibrant and thick) and fleeting as it all is, in recognition that one is always in the water, surrounded by it all even if we sometimes don’t notice.

So grateful for this sacred place and to share it with my surviving children, and that she welcomed us home via heart memory and grief and that painful familiarity that is only ever a heartbeat away.

On Jumping Off A Cliff With The Hopes That A Tiny Branch Might Save You [Pregnancy After Preemie].

My full term daughter was born on December 23, 2018 on a full moon. A cold moon. The cold full moon, and the first day of capricorn: the goat. She burst out with her robust cry weighing 8 pounds, and they put her on my chest so she could feel me and smell me. We laid there together for almost 30 minutes before I cut her umbilical cord.

Her name is Greta. She is very strong.

Her brother Elliott, a surviving twin who was born at 26 weeks, is now seven years old.

The surreal nature of my daughter’s birth was stunning— I laid there with this gigantic sweet baby whom I could touch and who was in the same room with me, and I couldn’t believe the sheer grace of the entire thing. That I could protect her eyes from the lights with my hands, that she could sense me, that she wasn’t immediately swifted away in an avalanche of terror, that there was no loss. I couldn’t stop crying. All emotions came overwhelmingly to the surface, and as someone who’s been called “stoic”, it was like being in a whirlpool.

Everything about her strength brought me back to the precariousness of her brothers’, William and Elliott’s, birth.

From the minute of the positive pregnancy test my body awakened to the dread of what could happen-- what could finally come again— what would probably do me in for once and for all— the loss of another baby. And each moment of the pregnancy felt like a conscious decision that I could be putting another baby into a dangerous situation for the fact that they were living inside of my body.

My body: the one that I still, deep down, blame/d for the death of my son William and for the prolonged hospitalization of Elliott. My angry and disorganized body. The body that could go haywire at 26 weeks and people could die from— that body. My friend Erika said she would make birth announcements that mentioned that nobody died; she got it. I just hoped I got that far.

So that’s the background.

There was this other half of me that had always longed for more babies despite my massive fears.

I found a doctor I trusted. We talked about the medical history. I pulled from my ancient knowledges to describe each medical intervention they used with my boys and tried to keep myself from describing my sons’ suffering as a result of the preterm labor. She said the Makena shot was a miracle. She said she’s seen a lot of success.

At 18 weeks, as we approached the danger zone, my high risk doctor joked that due to my advanced maternal age, previous preterm labor, and my (new and fun thing [kidding]) low-lying placenta, that we had our work cut out for us. I bit my lip trying not to worry, but spent the rest of the afternoon that day googling each condition, the likelihood of preterm labor associated with it, and crying.

I realized throughout the pregnancy that there was power in my body’s memory, and that I had pushed that part out of me— out of my conscious thought. I realized that my body remembered everything despite my desperate and elaborate attempts to eradicate it over the course of 7 years. And with the help of my partner and my doula, I tried to walk through the steps of acceptance that this was not the same, that it would not be the same, even if the darkest of fears felt as if it was omnipresent. When the labor hit and it was real, the emotions rushed to the surface again, even despite my knowing we were in the “safe zone” of being past 37 weeks. And by some grace, I was lucky enough to be able to experience giving birth to a healthy daughter. Through the entire pregnancy and the birth, I was able to start forgiving myself (maybe for the first time) for the things that were not my fault, possibly for the fact that historically I had only experienced trauma associated with childbirth and motherhood.

The night before she was born I saw two falling stars.

Greta and Elliott <3

There is something to be said for getting the chance to sleep in the same room with your baby the night they were born and to KNOW exactly what it feels like to not have that for 88 days, or ever. For being able to put her in a carseat and take her away from the hospital a couple of days after her birth, and remembering the carseat tests that kept your son from leaving for days. For feeling her suckle within the first hour of her birth—something I had never experienced. To put her in clothes you picked out (the nurses had dressed Elliott the first time, when I wasn’t there). To listen to her breathe unassisted, no wires or tubes: to hear her full cry even in those very first moments, a LOUD cry. Even in staying up all night with her for months on end— just you and your family— and no one to tell you some dire reason that she couldn’t sleep. For being able to make the first decisions for her, and not having to weigh what medical intervention would be the least likely to have long term consequences.

Pregnancy after preemies, for me, was like being repatriated with the things I never thought I’d experience having, and to have every moment of it be a godsend, but a godsend of which I was hyperaware. I sometimes think that only the parents who’ve experienced trauma have this “gift”: the gift of being able to recognize and feel gratitude for the very precious thing you have in front of you, to have your hopes realized in the form of a baby, to not have the capability of taking the fragility of that for granted. To be reminded of the strength of your babies that were forced to fight. To realize the absolute gift that babies are. I am filled with a gratitude that is just as wordless and powerful as the grief (and gratitude) that came with loss almost 8 years ago, and once again, I am speechless.

[Note: I’ve debated for months whether or not to write this blog with the understanding that this isn’t what always happens with a pregnancy after preemie. The intention of this is not to say that this is what typically happens nor that this was simple. I chose not to discuss the various issues that came up over the course of my pregnancy that were scary (in this particular blog). This is not intended to imply that only healthy babies are worthy. My hope was to convey the wonder and love that came back to me with my daughter, and existed wholly with my sons, albeit under different circumstances.]

Is Growth Possible after Trauma?

My new post at Preemie Babies 101 went up today; it talks about the sometimes unexpected changes that can occur after having gone through NICU trauma. Check it out: 

"...After the NICU, as we assessed what still stood around us, what hadn’t changed dramatically or crumbled in our lives, I wondered how the experience would affect my story, our story, the story of our family. Did this trauma mean that we would become a sad story? Our lives a tragedy? Would our lives forever be shifted into the shadow of grief?

The answer, unexpectedly, was no."

To read more, click here. 

4 Things About Mindfulness Anyone Can Learn from a NICU Parent

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The travails of a parent with a baby in the NICU are scarcely describable in language. After what is oftentimes a traumatic birth experience or high-risk pregnancy, parents are thrust into a fast-paced medical world, bamboozled with jargon, major life decisions, separation from their babies, trauma, frequent traveling back and forth to the hospital, interaction with a multitude of strangers regarding the care and survival of their babies, and, sometimes, the isolation that comes with going through an experience quite unfathomable to most of their friends and family. Even if their baby survives the NICU and comes out unharmed, parents are often left to cope with the grief and loss that comes with having their lives upended, all that is recognizable about it stripped away, only the bare bones of their beliefs left apparent.

The experience, suffice it to say, is not something that can be wrapped up in a bow and sold as something that is “inspiring” or positive. It is, however, oftentimes a unique opportunity for parents to discover what it is about themselves that can withstand a traumatic experience, as well as what it is that they will take a stand for in moving forward. Researchers are finding that it's common for individuals who have been through a traumatic experience to find things about themselves that maybe weren't apparent before: appreciations, values, understandings, goals. In discovering these things, individuals can in a sense "reconstruct" themselves after trauma, organizing their lives in a way that honors these discoveries, feels meaningful, and that appreciates the difficulties that they've experienced. 

In going through our own experience and in reaching out to other parents who have gone through it as well, I've found there are some shifts that have commonly taken place among NICU parents. Here are a few incredible things that the circumstance imparts to many that go through it, and that can benefit anyone looking to find mindfulness in their lives: 

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1.) Never underestimate the miracle of breath. There is something to be said about seeing your baby struggle to take a breath in the NICU. It washes away all cares about minor matters: things like whether you’re having a boy or a girl, whether your baby is bigger, smarter, more advanced or more beautiful than others, whether you have the perfect products to decorate their room, whether you seem to be the perfect parent or whether you're meeting the unspoken expectations of the people around you. The phenomenon of losing your care for things that really don’t matter in the long run can persist for NICU parents, and all that other stuff? In the context of breath? They lose their importance. Letting those things go can give you the ability to see, embrace and enjoy the “little things” we oftentimes unintentionally take for granted. And it’s breathtaking to witness when you’re able to appreciate it.

2.) Planning for the future doesn’t serve you very well when you’re in the moment. Going through a crisis, one can’t predict the next hour, much less the next week, of their lives. In our day to day life, when things feel simpler, or we feel more “in control”, it’s easy to lose sight of the fact that the hopes and fears of the future that we hold oftentimes mean nothing in the face of what actually might happen. Letting those go and making a deliberate effort to be present can have a profoundly positive influence on your life. Embracing the unexpected can highlight the beautiful imperfections you may not have noticed in attempting to follow a plan, and can soften the blow of a challenge or disappointment.

3.)  This is water. If you’ve never heard the David Foster Wallace speech, I recommend you listen now. In it, he talks about the importance of setting aside the single-minded perspective most of us hold, of seeing things as how they affect us as opposed to deliberately creating a space for empathy, even in the most banal and frustrating of circumstances. I remember on one of the more terrible trips my husband and I took to the NICU, when William's health had taken a turn for the worst, of driving frantically to the hospital, weaving through traffic to get there as soon as possible, terrified that every moment we were absent was one we had lost forever. But, to everyone else, we likely looked like road-ragers. After that experience, I realized that the anger or annoyance that sometimes sprouts up when you’re dealing with the actions of anonymous others? It’s not worth it, because you never know what someone might be going through in that moment. Practice forgiveness; practice patience. Try to sit with the idea that all of us contend with our own struggles, our missteps and mistakes may just be indicative of the amount of pain from which we suffer. 

View image | gettyimages.com

4.) Love is stronger than you think. It’s hard to fathom just how strong you are until you are forced into it. NICU parents are swept up into a world that’s as painful and anxiety-provoking as it is miraculous to see their tiny charges thrive. In going through it, one realizes that the love we have for each other is one of the only things clearly apparent, even in the most dire of circumstances. Many parents never could have imagined that they’d be able to manage a life in which their baby’s basic survival could be called into question on a daily basis for weeks on end; I certainly never thought that I could. But in the moment where you think you could lose everything, suddenly what you DO have becomes blatantly apparent, and, surprisingly, you can find beauty, strength, and comfort in even the simplest of expressions of love. Hold onto it as hard as you can, because the magnitude of that love will help you get through almost anything at all. 

I'm curious as to other realizations, values, beliefs or appreciations that other NICU parents may have discovered through their journey? Please feel free to share in the comments section below.

After the NICU: What Meaning do You Take with You?

After Elliott was discharged from the NICU and on quarantine, I was left with a lot of time to think. For me, having lost William and spending so many days bedside in the NICU with Elliott, it felt like my entire world had been scrambled into something almost unrecognizable in comparison with what it had looked like even months prior. Transitioning from the "survival" mode of everyday getting to the NICU, making medical decisions, consulting with doctors, nurses and therapists, working towards Elliott's various discharge goals and witnessing Elliott's progress to medical stability was difficult. I had gotten used to the fast-paced nature of the NICU, made friends with his nurses and doctors, become accustomed to the idea that every day could present a new challenge; I even had my favorite places in the hospital to get coffee or take a break from being bedside.

We shifted to a life of being at home on quarantine, adjusting to the day to day, getting used to troubleshooting issues that presented themselves on our own, spending precious alone time with Elliott and starting the process of mourning. All of the events of the past few months started to solidify in my memory, and I started to understand just how this story would profoundly change my life story. But what would that look like? Would this story transform our family into some kind of tragic example of loss? Would we fade away from our friends and family? Was there anything powerful we could take away from it, that, maybe, we wouldn't want to lose, even as painful as the experience was?

When Elliott was about six months old (three adjusted) the peace lily we had put in his room bloomed:

It bloomed in a pairing of two petals, uncommon for peace lilies, which normally  produce one white petal in their flowers.

It was a twin bloom.

When John and I saw it, we were astounded. We felt comforted by it, as if it was some kind of a signal that the earth knew what had happened, that what happened was not to be forgotten. To me, it was also a symbol that despite having gone through that pain, we had somehow been able to move forward. And though it wasn't the way we would have ever chosen to move forward, it had revealed different aspects of ourselves that maybe we hadn't ever noticed before, or seen as a strength. It reminded us that he would always be with us; that our time with him had changed us forever.

Post-traumatic growth is a newer idea in the psychological community. The premise is that after an individual goes through a traumatic or challenging life experience, they then, oftentimes, experience positive psychological changes (Tedeschi, R. & Calhoun, L., 2004). In other words, when you go through an experience in which everything you thought you knew or could rely on is somehow taken away, one oftentimes finds ways of coping with that experience by developing new beliefs or discovering inner resources that before that moment in time were not apparent. Recent articles have shown that, in fact, post-traumatic growth is often more common than the development of PTSD after someone goes through a traumatic experience.

The NICU seems to have the ability to burn away the things that perhaps seemed important in the past, but no longer hold meaning for parents. I don't know a single NICU parent who doesn't understand the very profound value, the gift, of being able to witness your child take a breath unassisted, or swallow without choking, or make eye contact even for a few fleeting moments. Things that for many parents, go (blissfully) without notice.

Oftentimes, for NICU parents, the love that we hold for our children becomes very "operational". In other words, it becomes a very deliberate act of noticing and interacting with our little ones. We go to the NICU, we make decisions and advocate for them, we learn how to participate in their therapies, and accept the problems that present themselves along the way. Love, then, is not just an idea that we have about our relationship, there are actions involved. Prior to having gone through the NICU experience, if you had asked me if I thought I could get through something as challenging, I likely would have told you that I couldn't. That I did get through it in itself is very powerful, and, for me, gave me a sense of just what parts of my sense of self would survive the NICU experience; and it was comforting to discover that it was love that survived it all. It was also awesome to see that my partner had that same sense, and that I could rely on him to carry on on the days that I couldn't.

Despite the pain and anguish of going through an experience that quite literally takes your breath away, perhaps in the survival of that, we find the parts of ourselves that are the most resilient. And I feel gratitude to my boys for having highlighted that for me with their fortitude and grace. Each year, around this time, I get reminded of it when I think to myself about the ways in which I want to move forward in the coming year.

To other NICU parents: what do you DO with the experience of having gone through the hospitalization of your baby? How does your experience make itself known in your day to day life? Have you ever been surprised at how this experience has changed your sense of self or your relationship with your little one(s)? Was there anything of value that you could find in the NICU experience?

References:

Barr, P. (2011). Posttraumatic growth in parents of infants hospitalized in a neonatal intensive care unit. Journal of Loss and Trauma. 16, 117-134.

Spielman, V. & Taubman-Ben-Ari, O. (2009). Parental self-efficacy and stress-related growth in the transition to parenthood: a comparison between parents of pre- and full-term babies. Health and Social Work. 34(3), 201-212.

Taubman-Ben-Ari, O. & Kuint, J. (2010). Personal growth in the wake of stress: the case of mothers of preterm twins. The Journal of Psychology. 144(2), 185-204.

Tedeschi, R. & Calhoun, L. (2004). Posttraumatic growth: conceptual foundations and empirical evidence, Psychological Inquiry. 15(1), 1-18.