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.

Learning the Language of Grief: Telling Your Twinless Twin About Their Twin

My new piece about grief posted at Hand to Hold today: 

"When you become a parent, you don’t expect that one of the lessons you’ll have to impart is that of how to grieve. Even though you know that your child will have their own pains, their own struggles, their own sense of groundlessness at times as they grow, it’s your hope that at least there will be a break, a reprieve, a pause before they have to learn how to navigate something so utterly difficult, a time where they can bask in unconditional love without the notion of pain. But sometimes that’s not the case."

To read more, click here. 

NICU Healing.

*Trigger warning: neonatal loss and preterm labor discussed*

I once lived a life in which absurdity was my mainstay of entertainment. Or maybe music? Anything in C-sharp minor. My job as a therapist with transitional youth. I thought as much as I could about everything I came into contact with. Mindless things as much as the more complex ones. I enjoyed disagreeing with people, having playful arguments. Changing my viewpoints. Changing my cities. Goofing around. Watching French New Wave movies. Wearing dramatic makeup or dressing up. Seeking out people and things that were "different" from what I already knew and relishing in the experience of discovering them.

My life changed forever, as cliché as it is to say, when the two lines quickly darkened on a pregnancy strip in early 2011. Negative thoughts rushed through my mind: I wasn’t ready. I didn’t know what to expect. I didn’t think I’d be a good enough mom. My relationship was too new. My job was too stressful. The world was too insane. And yet, warmly, I felt so lucky, so blissful, to feel something new inside of me; to know a new journey was beginning, and in a sense, to know my body was the captain. Honestly it was a mess, but a happy mess at that.

When they told us there were twins inside, I was stunned. So was John.

We hastened our marriage. We told everyone that would listen. We loved and we celebrated. We had to move. We had to plan. We worked and tried to save money. I tried to eat right and he cooked for me. We'd spend hours thinking about the future, imagined the boys' first words (maybe "Tix", based on one of our sweet dogs who would surely make an impact on them). We thought of names together, talked shop about how we might be as parents, what we hoped for, what we wanted. I slept for great stretches of time.

When we saw those baby boys laying against each other in my belly we swooned, and we were so happy. When we started to feel their small feet against the walls of my abdomen we freaked out and shuddered with excitement. My pets loved to sleep curled up against my gargantuan belly all night. It was as though everything we could imagine wanting together was inexplicably being given to us, and all at once. I felt the luckiest I had in my entire life.

At 26 weeks and three days, in the middle of the night I started to feel cramping. It was painful and I couldn’t sleep. I called my doctor, thinking I was overreacting but needing some sort of a solution so I could sleep. She told me I could either go to the emergency room or wait until the morning. I decided to wait.

An hour later I knew that wouldn’t be possible.  John and I drove to the hospital together, pale and scared.

Elliott at about 28 weeks' gestation, looking angry about his current situation.

I doubled over because the pain was so terrible, the hospital admitted us immediately. The doctors and nurses did what they could to try and stop what turned out to be active labor. What I had hoped would be a natural drug free birth became a labor desperately fraught with drugs of any kind that would stop what was impending by any means possible. For three days I laid in a hospital bed in excruciating pain, slowly dilating, terrified of what might be ahead of us, preferring to die in place of those tiny boys inside of me. I didn’t even know if they were viable. I didn’t know what the outcomes might look like; and I was in so much pain I couldn’t even entertain the notion of researching anything because I couldn't think straight. John, unable to have much of a voice in anything at all, tried to stay awake the entire time, tried to do what he could to remediate things, tried desperately to be as supportive as he knew how.

On the third day I was 10 cm dilated and they rushed me to delivery.

As they rolled me down the hallway I howled in fear, the animation of the hospital ceiling playing out before my nonfocusing eyes. Nurses tried to make eye contact. Doctors asked a million questions. Decisions were made. Lots of frantic, life-altering decisions. I cried. John cried. My mom cried. And then, William cried. Then Elliott too.

Each boy was two pounds and change. William approached three pounds, which they assured me was a fantastic size for their gestation, especially given that they were twins. Elliott was closer to the two pound mark and had been transverse (sideways), so they'd had to fish him out of me. They joked that he was trying to swim away from their hands. He had bruises on his legs from where they'd pulled him out (breech).

At midnight John took me to the NICU for the first time, where I saw my tiny charges sleeping in their see-through plastic boxes, wires spiderwebbing around them, machines humming loudly beside their beds. The NICU was loud and active for midnight on a Friday. I looked at their faces, seeing bits and pieces of John and I in their countenances, and still completely unsure of what lay ahead.

On Monday we were told that William's health had deteriorated vastly overnight. And things only got worse. We had to say goodbye to him on Bastille Day, July 14th, 2011, as we each cradled him in our arms. John and I reeled. Life as we had known it was gone. And in its place was a world that was as completely unpredictable as it was uncomfortable and terrifying. So we stayed by Elliott's side, we taught ourselves how to advocate for him, we stuck together, we cried frequently, and we hoped that someday the entire experience would be relegated to memory.

First family photo with Elliott (and first kangaroo care!).

88 days later, Elliott was discharged from the hospital. Healthy, fat-cheeked, and blissfully without medical equipment accompanying him. The doctors told us that even something as minor as the common cold could trigger another NICU stay for Elliott, potentially even lifelong medical issues. So we stayed in our own home, away from the rest of the world, left to ourselves to cope with this massive trauma we had just experienced. We barely survived it. It was only years later that things started to have a semblance to what life used to look like; that we could laugh at jokes or have casual conversations with friends about movies or that sort of thing. For the first two years of Elliott's life, it was as if something dire could be behind any corner, waiting to finally end us as a family, to take away what little joy it felt like we had left.

Towards the end of Elliott's NICU stay, and in my connections with other preemie moms online during our year on quarantine, one of the only valuable things I could find about our experience was the feeling that we were not alone. As isolating and lonely and terrifying as the experience was, we were amongst a community of people who by unfortunate and random events were forced to become as tough as nails for the love of their babies. I found that the people with whom I connected had very similar perspectives and values, a sense of what was really important that took precedence over being a gold medalist in the mom Olympics. I also found that many of those in this new community struggled with the very same things that John and I struggled with: marital troubles, anxiety, depression, lingering fears of what might happen to our surviving son and family, a sense of being lost and disconnected, without many tools to deduce exactly what had just happened to us. I saw that it was common for parents to become transformed by the experience, for the better or for the worse, that many people, like me, had become unrecognizable in contrast with their former selves.

Our robust, sweet rapscallion at three years old.

For almost two years, I ruminated over what had happened. I shut down my profiles on social networking sites. I used some of the tools I'd learned as a therapist to try and "work through" my understanding of our experience. I saw a counselor. John and I received counseling. I read whatever research I could get my hands on, as well as the beautiful autobiographical books of others who had gone through similar experiences. I sought out ways of healing/rebuilding that would give me the ability to make sense of this huge event, and to make it a part of my autobiography that both acknowledged the gravity of it all, but also made some meaning out of it. I realized that without that meaning, I may have literally gotten lost trying to move beyond the feeling of being paralyzed with fear.

Welcome to NICU Healing. It's my hope that this website will serve as a resource to other families going through the struggle of this experience, and that those who feel they need more help will feel solace under the care of a family therapist and coach who has a very deep understanding of what it means to have your world fall apart for some time, and can help guide you through putting it back together again.