Once More We Saw Stars

by Jayson Greene

  “Mom, do you want one of these sandwiches?” Stacy asks, giggling and gasping a little. “They really are really good.”

  We eat and then sit with the cartons strewn around, forgotten next to torn-open mustard packets and balled-up napkins. The silence settles back in, and as the grey haze of hours stretches on with no updates, the dread consumes us again.

  We know Greta is going to die, all of us, although we haven’t allowed the thought into our conscious minds yet. None of us is ready for it to maraud through our subconscious, killing and burning everything it sees. But we hear the banging at the gates. We glance around us, realizing this is the last we’ll ever see of the world as we’ve known it. Whatever comes next will raze everything to the ground.

  * * *

  Dr. Lee, the pediatric ICU doctor on call, comes out after three hours to retrieve us. She hits a button, the doors swish open, and we enter the PICU. This place will become our Bardo, our place of death and transition, for the next forty-eight hours. Our daughter is in a room on the left wing, but Dr. Lee guides us down the right wing instead, to a small room with a fake houseplant in the corner, and some granola bars on a coffee table surrounded by three chairs.

  She sits and beholds us. Her eyes are grave, attentive, compassionate. “The unthinkable has happened to Greta,” she says by way of introduction. “Her condition is stable, but the brain injury is such that she will never wake up.” She waits a beat, then, more quietly, “I believe her prognosis is fatal.

  “I want you to be aware,” she adds more gently as we sob, “that there is a lot of swelling. You should know that before going in to see her.” She sits and listens silently to the sound of our hearts splitting open in that room. Then she stands up: “Let me know when you are ready to go in.”

  We walk into Greta’s room; we are, we now understand, greeting our dead child. Her face is yellow and glistening with IV fluid, her skull swollen and blue, with obscene steel staples running down the center. We flank the bed, each holding on to a hand.

  “Hi, monkey,” my wife says. “We didn’t get very much time together. It wasn’t enough, was it?”

  The staff, gathered at the edge of the bed, watches us quietly. One of them brushes a fingertip on Stacy’s wrist as she steps forward to adjust something: “You two are amazing,” she murmurs, then steps back. I can feel their tenderness toward us creeping into the room as our family shifts into focus: Greta is no longer a body they have spent fruitless hours trying to stabilize. She is ours, and we are hers.

  We sing her lullabies as nurses tend to tubes. I almost snap a photo of her—I am a father, after all, and there is a certain logic to it. We had documented every new phase of her life, every outfit, every new playground or walk around the block, to preserve it, and in the haze of my grief, this feels no different. A nurse gently discourages me.

  My parents are boarding a plane. After five attempts, my mother had finally picked up the phone in line at the Natchez riverboat; she had simply said, “No,” quietly and firmly, and began crying in the resigned way that you do when you sense a battle has already been lost.

  I check my phone at Greta’s bedside and see this: “Any updates? We’re about to board.”

  I stare at the message, unable to let them board the plane without news or to tell them my daughter is dead over text message. I simply respond, “The news is not good.”

  My mother texts back, “We are profoundly sad,” and then they are in the air, cut off from communication and presumably as alone in their thoughts as we now are with ours.

  We sit and watch the rise and fall of Greta’s lungs as the machine pumps and deflates them. In her first months of life, we had a nervous habit of checking to make sure she was still breathing. Sometimes, Stacy would pull her out of her bassinet at night to lay her on her chest, where their breathing would fall in sync.

  The first time we took her outside, wrapped snug against Stacy in her baby carrier, we paused at a stoplight so Stacy could lift the flap and count breaths. A neighbor, a mother of a three- and a five-year-old, walked past: Stacy made a nervous joke, and the woman smiled in acknowledgment. “They’re always breathing,” she assured us.

  Over the next months, we began to adjust to that reality. She’s always breathing, we told ourselves. Slowly, the part of us that we weren’t even aware we were holding taut slackened, one muscle fiber at a time.

  I imagine it’s the same for all new parents: you slowly learn to believe in your child’s ongoing existence. Their future begins to take shape in your mind, and you fret over particulars. Will she make friends easily at preschool? Does she run around enough? Life remains precarious, full of illnesses that swoop in and level the whole family like a field of salted crops. There are beds to tumble from, chairs to run into, small chokable toys to mind. But you no longer see death at every corner, merely challenges, an obstacle course you and your child are running, sometimes together and often at odds with each other.

  By the age of two, your child is a person—she has opinions and fixed beliefs, preferences and tendencies, a group of friends and favorite foods. The three of you have inside jokes and shared understandings, and you speak in family shorthand. The part of you that used to keep calculating the odds of your child’s continued existence has mostly fallen dormant. It is no longer useful to you; it was never useful to the child; and there is so much in front of you to do.

  What happens to this sense when your child is swiftly killed by a runaway piece of your everyday environment, at the exact moment you had given up thinking that something could take all of this away at any moment? What lesson do your nerve endings learn? Sitting at the foot of my daughter’s hospital bed, I am too numb to absorb any of this. But I will, soon.

  * * *

  Some riverlike coursing of hours slips past, in the time that is no time. Eventually, Dr. Lee calls us back into the other room to discuss next steps. “The way I see it,” she says, “we could take her off of life support now. Or,” and she pauses, “we could talk about organ donation.” She lets those words bloom and settle. Despite the severity of her head trauma, she continues, Greta’s organs have been miraculously preserved. Heart, liver, kidneys—all of them untouched, in perfect condition.

  “If you decide to go that route, we will first have to go through responsiveness testing to confirm that she is brain dead,” Dr. Lee says. “It is a formality,” she adds, cutting off our unspoken question: Is she? “We have seen no signs of responsiveness from Greta, but to begin our search for recipients, we must run a series of tests to certify brain death.”

  Dr. Lee keeps talking for a moment, as I sit back and allow the idea to wash over me. She stands up. “I will leave you two to discuss it.”

  Stacy and I sit alone. In retrospect, I don’t think either of us had a moment’s doubt. I am the writer, the overexplainer who strains to shut up so that others can avail themselves of oxygen. But it is Stacy who finds and speaks the words we need: “I need it to mean something,” she tells me. “Maybe this way, it won’t be for nothing.”

  I nod. I do not know from what clear water source she is drawing, but I know that she has found her way directly to our truth for both of us.

  We send immediately for Dr. Lee and tell her: we want to pursue organ donation. It is the only simple decision we make.

  * * *

  Our first representative from LiveOnNY, the organization in charge of the organ donation, arrives promptly afterward. His name is James, and he hands me a folder as he introduces himself, assuring me that our selflessness is saving and changing lives. I open the folder and spot that sentence printed verbatim on the first sheet. My eyes land on a list of bullet points for dealing with grief as he talks. “Cry as often as you need,” one notes. “Talk about your loved one as much or as little as you like,” advises another. “There is no ‘should’ in grief, and everyone will have different needs.” Another promot
es the importance of vigorous exercise, found to aid in fighting depression. I stare at them until they’re seared into my brain. They are my first set of instructions on how to breathe on this new planet.

  A second representative, Maura, arrives soon after. She leads us back into the room where Dr. Lee gave us Greta’s prognosis to brief us on the process. It seems crucial to everyone, during this time, that we be transported into a room, any room, to be given any sort of news—they shuffle us around the same three spaces as if it might diffuse or mitigate the pain.

  When the door closes, I see with dismay that Maura’s eyes are full. She places a beefy red hand on her chest. “First of all, I want you to know I’m a mother, too. My heart is breaking for you. Come here, come here,” she says, motioning us to hug her.

  I freeze, cornered, then lean stiffly into an unwelcome embrace. She is short and stout, and I keep my eyes fixed on the crosshatching of the little window panel over her shoulder and count backward from five until she releases me.

  She administers the same hug to Stacy, then sits down across from us. Tears streak down one ruddy cheek. She seems overwhelmed, unable to find the starting point for her speech about recipients, timelines, the necessary paperwork. Stacy and I sense each other’s slight disbelief: Surely she didn’t treat everyone with dying children like this?

  The organ donation process, we are learning, is a strange mix of the unspeakable and the bland. On the one hand, there is the actual subject: my daughter’s internal organs, encased safely in her little body, faltering but still warm. On the other, there is the delicate and tangled path the state treads to extricate them, lawfully and one by one, so it can redistribute them into the bodies of other citizens. Even here there are still boxes to be checked somehow, a routine series of questions to be asked and answered.

  We are ushered into another room—a corner conference space with a long table—to be asked these questions. Maura shuffles papers in front of her apologetically, then picks up her pen and sits with it poised, slightly hesitant, over the top form. Do we want coffee? No, we do not.

  “We have to ask you these before authorizing the search for recipients,” she begins, still looking down. “I just wanna say, I’m sorry in advance for the questions here that don’t apply. We—we still have to ask them all.” She keeps her eyes fixed squarely on the desk, flicking pained eyes up at us only occasionally, when the questions get particularly upsetting: “Did the patient ever use drugs?” “Was she sexually active?” “Was she pregnant?” No, she did not. No, she was not. No, she was not.

  “I can’t believe you don’t have a separate form for children,” Stacy moans at one point, sinking back into her chair and rubbing her eyes. “She was two.”

  My parents arrive that evening and take their places with us. Together, we fan out like figures in a religious painting. My mother sits behind me on a windowsill. I am on the floor, my head resting on her knees in an echo of my childhood.

  Susan is at the foot of Greta’s bed, weeping softly. “Why couldn’t it have been me,” she asks of no one in particular.

  I glance up at her, and her heartbreak is so acute it is like the sun—I can’t look at it. No one answers, but I think at her: It shouldn’t have been you. It shouldn’t have been Greta. It should have been no one.

  Instead of keeping track of hours, we watch the big red numbers on the tall stand as they fluctuate. They track my two-year-old’s heart rate, kept steady by life support, and nurses watch the screen for worrisome spikes or dips. Tubes rain from a creaky-looking stand above her bed, feeding into her body at various points I don’t care to follow. Every few minutes, one of the tubes becomes twisted or kinked, triggering a dull repetitive beeping from the machine; a nurse will appear, do an irritable dance of tugging, adjusting, and jiggling, until the kink loosens and the machine falls silent.

  Stacy and I take turns sleeping at the foot of her bed. There are no dreams in trauma sleep: exhaustion and shock are reliable copilots, seizing the controls when you most need them. Occasionally I repeat, out loud and with no apparent awareness of anyone listening, “I should just die. Why can’t I just die?” I can feel my heart gazing up at me quizzically, asking me in between beats, Are you sure you want me to keep doing this? I lie down on the windowsill, telling my mother I do not know how to live.

  “You had better not do anything stupid,” she responds gently.

  I wander around the wing in my socks for the better part of the night, making twenty or thirty trips to the bathroom, sometimes only to pointlessly wash my hands and return to my daughter’s bedside. I hear my own howls of grief in the bathroom, the grey tiling covering the floor and the walls like a hyperbaric chamber, and think they must belong to someone else. I avoid my gaze in the mirror; I have no interest in learning what it feels like to meet my eyes.

  No matter where I walk, I see empty hallways—no one in the waiting rooms, no other planned surgeries, no one in sight. This first night is the beginning of my reeducation: Earth is now an alien planet, and I am a visitor treading its surface. I learn tiny new skills in this time, social graces I already intuit I will need. I graciously, passively accept the hug and words of a night nurse, her eyes welling with kindness, who urges me not to “give up” on our baby. The Lord Jesus, after all, works miracles.

  The setting is eerily reminiscent of Greta’s birth, my wife and I huddled around her in the middle of Manhattan, gazing out windows at the city around us in an uncommon quiet. The only other humans in this alternate dimension, both times, were a handful of helpers, who seemed to have been sent specifically to usher us through the transition. On her birthday, it was Rita the midwife, Narchi the doula; on this day, it is the neurosurgeon, Dr. Lee, the PICU nurses, and the team working at LiveOnNY.

  In the morning I shower in the bathroom, changing into a pair of track pants and a T-shirt my mother has bought me from a nearby Gap. My brother arrives, haggard from a red-eye flight from Colorado. Liz, Stacy’s childhood best friend and sister in all but name, arrives from London. Stacy, delirious from exhaustion and trauma, murmurs instinctively, “How was your flight?”

  Liz looks at her and begins laughing, her voice reassuringly vinegary through tears. “It was awesome, Stace,” she says wryly. “Just great.”

  We catch everyone up as best we can. The doctors will arrive in a few hours to declare Greta brain dead. They will disconnect her briefly from the ventilator, monitoring closely for any signs of independent respiratory movement. They will test her brain stem reflexes, the kind that register life at its most primitive. We emphasize, dully, that they do not expect to find anything.

  Because Stacy was still breastfeeding at the time of the accident, someone apparently needs to draw her blood. Why do they need her blood? We aren’t entirely sure, but it seems logical enough on some deeper plane of my brain—blood, mother’s milk, eye of newt, hair of child. We are in the realm of the unholy, the bodily sacrament, and nothing surprises me. If someone had approached me and soberly explained they needed to cut out my tongue to send to the lab for samples, I probably would have opened my mouth without complaint or question.

  For some reason, the blood has to be sent to Philadelphia—about three hours by van. “We’ll get it there as fast as we possibly can,” we are assured. Then, and only then, will the phone calls to possible recipients begin. During all of this, Greta will be kept functioning. Stacy climbs into bed with her, laying her head next to Greta’s on the pillow. I place my head lightly on her chest and feel it rise and fall. There is something horrible and precious about our time together now—its limits are so clear and plain. At some point in the next twenty-four hours, we won’t even have her like this.

  We have been told that a nurse will be in for Stacy’s blood around eight a.m., but when the hour comes and goes with no nurse and no updates, I begin to feel something unwelcome: old-fashioned irritability, a hot tingling feeling piercing
the cool cavernous numbness of trauma, trickling in at the edges. My forehead tightens.

  “Where are they?” Stacy moans.

  “I’m sure they’re coming soon,” my mother says, sounding unconvinced but knowing her lines for the tense moment. The situation feels grimly familiar: a typical New York City situation where everyone sits around waiting for some pointless confusion to clear.

  A nurse finally arrives with syringes and empty vials, and I sigh gratefully. As the vials fill, I pull out my phone. I am confronted by a text from a work friend: “I just heard. Please let me know if there’s anything I can do for you guys, and my thoughts are with you.”

  “Thanks. How did you know?” I write back.

  “A NY Post article.”

  I shift on the windowsill and look around the room. The first reporter’s phone call had come the previous evening, a voice mail on Stacy’s phone. We were vaguely aware of news vans on the scene of Greta’s accident, but it hasn’t occurred to me yet that our story might continue to be—that we might continue being—newsworthy.

  Susan pulls up the Post story, although I can’t look at it. “They said I was eighty years old!” she cries, indignant. She turned sixty last week.

  Forty-five minutes later, the New York Daily News publishes its story. This time, I look: there is a photo of my daughter, her forehead strapped to a stretcher, its wheels perched on the lip of the ambulance. The stretcher is for an adult body, and she looks tiny, toylike, in the center of it. The picture has no effect on me; sitting in front of her, I simply register it as the precursor to the nightmare we are living now. There is a photo of Susan, a police officer holding her at each elbow, the camera catching uncomprehending eyes. There is a quote from one of her neighbors, anonymous: “This is a tragedy beyond belief. This is her only grandchild.”