Blessings and Burdens: Living a Life Entwined with Death

      The negotiations and renegotiations had begun. Ultimately, I landed on a single ask, "as long as they are healthy…" Though what I really meant, but could not say was, "as long as they are alive… as long as we are alive.” In reality, I wanted more than that, I wanted a birth that preserved as much of me as possible, of my body, my mind, my dignity. Instead, there I was at 0200 strapped to an operating room table, praying to any god that would listen while my twin babies were extracted from me and handed over to strangers. It's funny now, even years later, how some details are so crisp, the rustle of the blue drapes, the blinding light above me, the collective beeping of our three heart rate monitors, the sterile metallic smell of the operating room combined with the sharp bitter smell of cauterized skin. I remember feeling a little like Braveheart being disemboweled—fully exposed while someone pawed through my insides. I remember the sharp relief of hearing Oliver's first cry bringing tears to my eyes and the relative quiet following as he was whisked away to the neonatal intensive care unit. 

      I held on to that first cry long after he was in another unit in his own hospital bed. I replayed it over and over, analyzing it, searching for reassurance, for relief. It was strong, so that must be good—he'll be "okay." Relief wasn't the emotion I expected to feel meeting them for the first time, my second son and my first daughter. It's almost as though the entire pregnancy and birth, I was afraid to love them—afraid to let two more people have that kind of control over my own happiness. 

      More than a decade at the bedside of pediatric patients in the intensive care unit did not prepare me to have my own babies under those harsh lights, within arm’s reach yet so far away, a wall of medical monitors, tubing, and wires between us. The days I spent at their bedside blurred with fear, anxiety, and exhaustion. In my rational mind, I could acknowledge that they would likely be “okay”—something the parents at the bedsides of the infants I care for must be much less certain of. But still I was holding my breath, waiting. Even with all I knew, I felt certain of nothing. While I trusted our team, it was challenging to trust the system, one over the years I’ve witnessed breakdown, one that occasionally has failed me personally. When my eldest was born I remember thinking that if anything happened to him, I would not be “okay.” Not ever. It's like that old relay game when you carry an egg on a spoon—that level of fragility, that tenuous the balance. The realization that it can crumble in an instant, is the blessing and the burden of raising children while living a life so entwined with death.

      Over the years in the pediatric ICU, I have learned immeasurable lessons from my patients and their families. I often think back to a meeting with a family in which I disclosed to them that their daughter would need a heart transplant to survive. I was a new nurse practitioner, not yet a mom, unaware of the stakes that come with the mantel of parenthood. Her dad took my hand and looking deep into my eyes, he asked if he could donate his own heart. I remember thinking I must not have explained things clearly, perhaps I had run up against a language barrier somehow. Looking back now, I know, I was the one who didn’t understand, the language barrier was mine. I see now he was earnestly asking me if he could lay down his life for hers. 

      Not long after that meeting, we admitted a newborn with ectopia cordis to the unit. Ectopia cordis is a congenital condition in which the sternum does not enclose the heart. The heart literally forms outside the body, covered by skin so thin you can see the coronary arteries coursing across the surface of the cardiac muscle. It occurred to me that this is motherhood, your heart on the outside—visible to all, vulnerable to trauma.

      Becoming a parent comes with the realization that you would literally give your heart, your life, your everything for that little being to thrive. Those are the stakes. That's why you feel so differently afterwards because you are forever altered, eroded by that level of vulnerability, etched by that depth of love.

      Study after study have concluded that connection with a provider not only optimizes patient experience, but also improves patient care, patient conditions, and patient outcomes. Connection comes from commonality, acknowledging sameness. Even at the most basic molecular level, a bond requires an exchange; electrons swapping orbits to connect atoms. Connecting with our patients requires we give of ourselves, but what’s the right amount of yourself to give? Can we connect in a way that’s meaningful to them, yet maintain the distance we need to spare ourselves? “Put yourself in the patient’s shoes, show empathy," we say to each other, to ourselves, to our students. But how much of yourself can reasonably be given over before you lose yourself entirely? Is it possible to create the connection essential for exceptional care while maintaining the boundaries needed to function in your own life? This balance is not only delicate, but also evolving. Ebbing and flowing with your patient’s lives and your own.

      COVID taught many Americans what nurses already know—that when you take your job home with you, when the boundary of work and life and death becomes blurred, it drains you in a new way. We are not just on the frontline now; we have always been. Every day we meet people living the worst day of their lives. We bear witness to their suffering as we shepherd them through the system, through the pain. Our work is to promote hope and life and healing, but there are limits, and somedays the best you can give is a peaceful death—being there to share their last breath. That thread of connection doesn’t snap when we leave the unit, driving away from the hospital back to our own lives. It is always there, linking us. It is imperative to create mechanisms to allow for distinction between work and home, life and death, in order to continue on. But how do you “turn off” a workday that involved taking a child to the morgue? How do you drown out the deep animalistic cry of a mother losing her baby? You can’t, you don’t. You carry them with you, they live in your mind, in your heart. As they should.

      Sometimes, I wake up in the middle of the night and pad softly to my children’s rooms. I look at my children sleeping, and I can see them attached to tubes. Breath being moved in and out for them, blood being flowed around for them. Their active gummy hands quiet and still, glowing with oxygen probes instead of clapping and waving. In the dark of the night, I hold my breath and pray, “Please God let them get to four, let me see them walking to school with their little backpacks. Let me watch them walk across the stage at graduation, let me drop them off at college, may I dance at their wedding, hold their babies…” But I am mortal, so I want more, more, more, and what I really mean, but is hard to say to the orchestrater of the great beyond, is “take me first.” Take me first. May I be spared the crushing sadness of burying them. It’s not normal to pray that your healthy children get to keep living, it adds a darkness to the edges of your life, but that shadow also offers dimension, making the bright brighter. It’s both the tariff and the dividend of this work, to know it’s all fleeting and fragile and unpromised. To be grateful for this moment, for this day, looking humbly and hopefully towards the next.