Near a stand of quaking aspens on the Kenai peninsula, my sister Shannon and I run through fields that, our father tells us, are home to over two thousand varieties of wildflowers that have yet to be named. We pause to catch our breath in thickets of dazzling purples and shameless yellows that reach our six- and seven-year-old shoulders while Daddy crouches nearby and snaps photo after photo of Mama and us.
“But everything has a name,” Shannon insists.
“Not until someone says it. Shannon,” Daddy answers, between the whirs and snaps of the shutter on his second-hand Nikon.
We drive back to our duplex where the windows are covered in foil to block the perpetual daylight of Alaskan summer. Shannon and I fall into bed, exhausted from hiding and seeking in the fields, and from chasing butterflies as wildly colored as the flowers they lit upon. Despite the crackling of the speakers on the record player, the needle popping and skipping on a Ray Charles album Mama borrowed from the library, sleep overtakes us as it always does—suddenly and with no regard for our intentions. We surrender, mid-sentence, wearing on our lips the half-articulated attempts to name all those flowers about whose anonymity we are still incredulous: Purple Babies of the Valley, Don’t You Dare Delilahs, Am-I-Bluer-Than-Thunders, and Glory Hallelujah Sunshines. Our nomenclature is not based in Latin, but in the language we’ve adopted from the Blues, country music, stories we love, and from the Sunday School lessons for which we’ve found no better use.
The next morning, Shannon and I wake to find a plain white envelope, the kind our parents mail the rent check in every month, beside a pie tin full of melted candle wax on the coffee table. The envelope is addressed to “Genevieve,” the name Daddy never calls her. She is always “baby” or “honey” or “darlin” whenever he addresses her directly. Only outside her presence and in speaking about her to third parties does he call her by her given name. Her name in Daddy’s blocky script renders the contents of the envelope irresistible. Mama has a proper name, like any wildflower deserves, and here is proof: Genevieve.
“You open it, Mary,” Shannon says.
“No, you,” I say.
We tacitly grant each other permission to breach our parents’ privacy, an offense made easier because the envelope is unsealed. Shannon pulls from the envelope a single sheet of nearly transparent airmail stationery, fragile as dragonfly wings.
We read the note together, silently at first, embarrassed by its simple, first line in blue Bic ink: “Dear Genevieve, I’ll love you til the day I die.” The note is signed, simply, “Liam.” At the bottom of the page is a second, shorter sentence: “p.s. You are beautiful.” We puzzle over what “p.s.” might mean: “pretty sure”? or “please see”? or “probably sometimes”? We tuck the note into the envelope and leave it as we found it—flap open, leaning against the wax-filled tin.
Daddy’s post-script is the truth—Mama is beautiful. Her shiny black hair falls to the small of her back. Her impossibly green eyes can set you on your way, or pull you in and draw from you a confession for crimes you have not yet even contemplated. Her features make of us a lesson in the contrasts in any family, human proof of the genetic recipes Mendel found in his flowers. Mama is dark, and the sun never offends her with so much as a freckle after she has worked or played all day in its light. My siblings and I sunburn easily and our hair is various shades of blonde.
We grow up hearing Daddy invoke the post-script of his airmail love note. He tells us often and emphatically that Mama is the “most beautiful woman (he has) ever seen.”
Baby-darlin honey-love sweetheart-sugar.
Well into our adulthoods, Genevieve is a name we hardly ever hear, though she deserves the taxonomy owed any rare flower: Genevieve-ceae, Genevieve-oidea Genevieve, Genevieve speciosa.
You Are Dying
“How did I get here?” Mom asks.
Her faltering mental state compels me to wonder whether this is an existential question or if she has forgotten, literally, how she came to be at my house. She spent Thanksgiving weekend talking with family and playing with my toddlers. Now she is so tired, she rarely leaves the sofa except to go back to bed.
“You drove down, Mama. With Daddy, remember?”
“No, Mary, I mean, how did this happen?” she asks.
She wants facts, it seems. So, I give her a clinical answer. I talk about bilirubin counts and clotting factors and liver function. I explain her diagnosis, as I understand it, and the underlying causes as they’ve been explained to me. I rely heavily upon my own research and phone calls with her doctors to encourage and inform my family. A lot of times, I’m full of shit. I either rage against the inequities of the organ sharing network and transplant criteria, or I dispense sunshine and hope, depending on what my family needs to hear from the battlefront.
“But, I mean, what is going to happen?” she asks. She has cause for worry. She was diagnosed two years ago and has begun the sudden and rapid decline her doctors warned her about. I give her the best possible clinical scenario. I restrict my answers to the medical facts as I understand them, and avoid conversation about the future.
“You have to be so sick you’re dying, Mama, but you must be healthy enough that you could withstand what the surgery will do to you.” And it sounds like doubletalk.
“But, honey, what’s next?” she presses.
I offer her another anecdote from a medical journal. I report numbers and survival rates. She looks away from me, out the window at my toddlers playing in the sandbox that is a kind of redundancy here in the New Mexican desert. They wave at her. She waves back. This exchange registers on her face as worry. Mom’s impatience with me seems to grow with every kiss the kids blow to her from their muddy hands.
“Just. Tell. Me,” she says.
And then I realize she wants the narrative. She is, after all, the woman who taught us to love stories, the woman who wove plot as she spoke, told tales that scared the crackers out of us or left us awake late into the night, aching to know what happened next. The storyteller isn’t asking for clinical data. The closet novelist could care less about percentages and statistics. And the Halloween fortuneteller doesn’t seek a prognosis. She wants a narrative, a story—even if it is scary.
The story recorded only in my notebook, the story I’ll never tell her, goes like this:
“The insidious thing about liver disease, Mama, is that it leaves your beautiful face and body intact for months, maybe even years, while it ravages your insides and drains you so gradually of your will and energy that, at first, you hardly notice the loss. Then, the transformation from someone who is ‘sick, but looks so well’ to someone who is ‘dying, I hear’ is almost overnight. Primary Sclerosing Cholangitis (PSC), a string of words and their tidy acronym you never heard before, slowly take over your life before finally taking your life.
One morning, you walk out of your bedroom a little wobbly, and you might feel like you have the flu. Your real friends will observe to you how jaundiced your eyes and skin have become, and offer to drive you to the ER. Eventually, foundation and lipstick only make you look like a scary clown. Your cheek bones, one of the features about which you were always so proud, jut from your face. The whites of your eyes are no longer that—they are a mad yellow and, combined with your impossibly green irises, give your gaunt face a startled, alien look.
Suddenly, your pants won’t stay up, and a belt only makes it impossible for you to take yourself seriously. Your skirts and blouses hang on you like you’ve raided your own mother’s closet to play dress-up. Even your feet seem to have been diminished by your liver’s failure. They swim in the high heels you will soon have to exchange for the flats and sneakers you’ve always called ‘tacky.’
When the downhill slide becomes a full-on plummet and the only thing longer than the list of things you didn’t get to do is the list of people ahead of you on the transplant registry, then your mind goes. This is a state called encephalopathy, a kind of intoxication—what you might compare to being drunk, if only you’d ever experienced it. Your daddy was an alcoholic and so were all his brothers, so you never drank. Not a drop, you cautioned us. But your liver is as quit as it can be, and oh well, here you are, drunk as a skunk, confused and a little combative, like most of the people you spent a childhood avoiding.
You had plans, remember? You imagined learning Italian or Spanish. Instead, mi amor, you will learn the language of evasion from your physicians and surgeons. Your doctors speak in passive voice about your condition, and they tell you that although your disease has developed slowly, your deterioration is now rapid and advanced.
You dreamed of travel with Daddy, somewhere ‘far away but affordable,’ now that your children are mostly grown. But you won’t need a passport where you’re going—which is only from your home in northern Arizona to any transplant center that will take you, if you’re lucky, where you will wait for a donor organ to become available and where, if you’re even luckier, you will receive the surgery that will damn near kill you in a gods-defying effort to save your life.
I’m so sorry, Mama. This is how you came to be here. And this is what will happen. It’s happening now, only sometimes you forget.”
Careful What You Wish For
The long-awaited phone call comes after Mom’s physicians at Baylor have told us to take her home in the morning. Make her comfortable. Say our goodbyes. Instead, after a call that they’ve found a matching donor organ, we prepare Mom for surgery and reassure her against the shock of this news. Shannon’s calm, quiet nature is steadying, and sometimes the antidote for toxic levels of smartass from our younger sister Liz and me. Shannon keeps us from straying into sleep-deprived nonsense or the wilderness of doubt.
Three hours after they’ve taken Mom for surgery, Dad walks into her hospital room. His smile is almost polite, a little shy. He wears his work clothes—Wranglers and work boots, a heavy cotton button-down, and a windbreaker that is not enough against the Dallas winter. His six-foot frame is leaner than usual. His eyes are more tired than blue, and he wears a couple days’ growth of his sandy beard that is beginning to gray. We jump up from our chairs to hug him. He smells of motor oil and Old Spice aftershave.
The brim of his baseball cap is pulled low over his face until Liz reaches up and removes it. Baby sister is allowed these moments of instruction. “We can’t see you, Daddy,” she says.
“How is she?” he asks. He looks around the room, questions all over his face.
“The surgery will take about eight hours, but they’ll let us know how she’s doing,” I say.
“What do you mean, surgery? Where the hell is she?” he asks.
Liz takes his arm, says, “She’s in surgery, Daddy.”
“What? What do you mean?” Dad seems confused.
“Transplant surgery. Right now, Daddy. They found a donor for her this morning. Everything is going to be fine,” I tell him.
He turns to me, his face hard. His stance is tense, his arms at his sides. His hands are in tights fists, fairly shaking. “Why’d you let ‘em take her,” he says through clenched teeth. “Why didn’t you wait?!”
Somewhere between our relieved greetings and Dad’s accusing questions, I have regressed to my ten-year-old old self, defensive about chores done wrong or a colicky horse we didn’t know what to do with or young trees we lost to the wind. Or about the mother who took care of us during his long weeks away, and who now needs our care in his absence.
“Hey,” I say, “how bout, thanks for taking care of your Mother. Thanks for looking after my wife. How bout that, huh?”
“You should’ve waited! This isn’t right. It isn’t right, got-damnit.”
“Really, Daddy? Not right? But it’s right for us to make decisions when you’re not around, but now you want to criticize?”
“Don’t talk to me like that,” he says.
“Two years of waiting, and bake sales and car washes and selling every damn thing we could to get her here. But we shoulda waited? And oh, by the way, Daddy, I left my own kids to be here, so—”
Dad turns to Shannon. “What’s going on? Where is your Mom?”
“She’s dying, Daddy—you know this,” I say. “There’s finally an organ available, but we shoulda said, ‘Hey, y’all Baylor surgeons, let’s hold off a little while?’”
“I said don’t talk to me like that,” he yells.
“That’s easy. How bout I don’t talk at all,” I yell right back.
Liz takes Daddy to a chair by the window. Shannon throws an arm around my shoulders.
“Okay, let’s calm down,” Shannon says. “Mary, come with me.”
We walk past the nurses station and down the hall to the little alcove of vending machines where Shannon speaks her mind. “Try to put yourself in Daddy’s shoes.”
“Are you kidding me? We’ve been in his shoes for months—years. I’m tired of it.”
“You don’t mean that,” Shannon says. “Come on.”
Shannon’s face is lit by the soft glow from the soda machine. The Coca Cola- sponsored illumination of her face reveals dark circles under those fire-and-ice blue eyes.
“I didn’t mean it,” I say. “I’m sorry. But what the hell’s he mad about? Makes no sense.”
“He’s scared is all,” Shannon says. “He crossed a picket line, and he’s been sleeping in his truck just to keep that job in Phoenix. You gotta give him a break.”
Shannon and I walk the halls of the transplant floor where we’ve stayed with Mom during the four days since her last collapse. By the time we return to her room, I am chastened by the stories I’ve gleaned from other rooms and by the burdens borne by spouses and lovers. After walking a turn or two around the fourteenth floor, I realize I should take a few steps in Dad’s worn out work boots.
Back in Mom’s room, I try to take in the scene as Dad might’ve when he arrived. The room is empty, except for the bedside table and a few chairs against the wall. Next to the table, some socks, pajamas, makeup, and a notebook spill from Mom’s small overnight bag, as though she left in a hurry. Her shoes, the sensible flats she hates, are crossed over each other as though she kicked them off only moments ago. The most conspicuous feature of the room is its emptiness where her hospital bed should be. Every piece of furniture and equipment is oriented toward that blank space. Walking in on that scene would strike panic and fear, and subsequently even anger, in the heart of a man who had tried mightily to get here before his wife was taken away for a procedure that could be the end of everything or the beginning of a precious second chance.
All the deep and heavy conversations have been had, it seems, or successfully avoided. We pass the next few hours with small talk, until we discover the book cart in the room down the hall where no families ever lounge.
I look up from a Mary Karr memoir to see a surgeon approach the nurses station. And I hear him speak our name—“Dailey.” His surgeon’s cap is pushed back on his head a bit, and his surgical gown gently flutters at his sides like delicate wings when he strides quickly toward us. He turns to enter Mom’s room, and I’m not sure whether we should sit down or remain standing.
He introduces himself. “I’m Doctor Klintmalm. Am I addressing the family of Genevieve Dailey?”
“You are,” I say.
All of us “kids” stand and cluster around the doctor. Dad stands, too, but he remains in his spot near the window, with his head slightly bowed and his hands in his pockets.
“May I know to whom I am speaking?” Doctor Klintmalm asks. His singsong, Swedish-accented English is pleasant, and his voice is reassuring.
We all quickly say our names. Dad is quiet.
“Genevieve is responding well. Wait a minute. Can I get you all to step back a moment?” the doctor asks. He parts us with his extended arms, creating a wide space before himself.
We step away from him. I’m worried now about what he has to say.
“Come, Papa,” the doctor says, and motions for Dad to come forward.
Dad touches his own chest, raises his eyebrows.
“Yes, Papa, come.”
Dad crosses the room and accepts Doctor Klintmalm’s extended hand.
“I’m Liam Dailey, sir,” Dad says.
“Liam, your wife is doing very well, as I was telling—your children, yes? The surgery is going to take a little longer than we had anticipated. We have encountered a complication, and it’s serious.”
Dad shoves his hands deep into his pockets and bows his head. “Is this…common?”
“Well, it’s not uncommon, but it is an unexpected difficulty. So, the surgery will take much longer than we’d anticipated. But I wanted you to know. Do you have any questions?”
Dad’s silence is unnerving. Finally, he says, “No, not now. Thank you for telling us, Doctor.” They shake hands again, and the doctor strides out of the room. Dad watches his departure. We hear the doctor’s surgical gown swishing at his sides until he steps into the elevator.
The news we heard is hard, but Dad seems calmer and somehow more resolute. He took to Doctor Klintmalm. Dad returns to his post at the window, and stares out at the Dallas night.
We pace and read and talk. And pace and read and talk. The last five hours have been the most difficult. We’re in that twilight space now, between expectations, not yet transitioned from one hope to another.
Around 10pm, Doctor Klintmalm returns to tell us that the surgery is complete and Mom has been moved to recovery for observation. After a short time there, she will be moved to the transplant ICU, where she will stay for at least 24 hours. We will be permitted short visits, two at a time, when she is awake.
“Now, a word of caution. This is a critical time, the next day or so,” Doctor Klintmalm says. “Papa, Genevieve did great. She’s strong. But she will need quiet, calm interactions and reassurance when you speak with her. Her body has been through a lot, and she has quite a lot of recovery ahead.”
The doctor looks like he, too, has been through a lot tonight. He has lost some of the energy he had earlier. His eyes are tired, and he seems fairly slumped inside the gown that hangs off his shoulders now. But his smile is sincere, and his tone is bright. “Take good care of your mother,” he says to my siblings and me. “And your father.”
“Thank you, sir. Thank you so much,” Dad says. They shake hands again and smile big at each other.
“You’re quite welcome, Papa. Quite welcome.”
Around eleven o’clock, Mom’s nurse Rachel steps into the room to tell us we can visit Mom in the transplant-dedicated ICU. She warns us that Mom is sedated but conscious. We all take a silent ride on the elevator.
As if on cue, my brother Seamus walks around the corner to find us all gathered in the hallway outside the ICU. His Stetson is cocked on his head, and he looks tired, but his half smile is comforting beyond belief. He is the one among us who can comfort Mom on one of those dark days when motherhood seems like some sort of test she has failed. They’re of a kind, Seamus and Mom.
Seamus removes his hat, looks around at all of us and, after we embrace him, he says, “Well, where is she?”
“Let’s go,” Dad says. “They’ll buzz us through two at a time, but we have to be real quiet.”
Dad is first through the doors, and Seamus follows closely behind. The rest of us stand in the hallway, making small talk, lighter in mood now, but only a little. I’m anxious to see Mom, but mostly I am anticipating Dad’s face—I’ll know more about how I should feel and what to hope for when he walks back through those doors.
We’re seated on the floor, leaning against the wall, when Dad returns about twenty minutes later. His eyes are lit up. He smiles at all of us, and says, “Your mother is doing great.”
Seamus pushes through the ICU doors behind Dad. Seamus sets his hat back on his head, pulls the brim down low over his face, and strides straight down the hall to the elevator. I haven’t seen him cry since he was a little boy—and I can’t pretend to recall the occasion that, even then, was so uncommon as to be unsettling.
Shannon and Liz visit Mom together. When they return, their relief is a thing to behold. Liz is temporarily and uncharacteristically speechless. A few minutes at Mom’s bedside and Liz has gone from twenty-two to twelve. Pain and worry never make her cry, but happiness gets her every time.
Shannon says, “She made it. She made it. She made it.” And then she sighs long and hard.
It’s my turn now, but I don’t want to go in alone. “C’mon, Daddy,” I say. And he eagerly accepts my invitation.
Dad leads me through chirping and hissing pumps and monitors that make an obstacle course of this specialized ICU. We take seats at Mom’s bedside. She appears to be sleeping.
He speaks to her. “Honey, can you hear me? Mary is here.”
Mom’s face is swollen and a little bruised. She can’t speak, because her larynx was roughed up during the surgery. Her wrists are tethered to the bed rails.
I lean over her, so she can see me. “Hey, Mama. You’re doing great. Everything’s okay.”
She moans something unintelligible at us. She grows a little agitated, trying to speak. Dad asks one of the ICU nurses for a pen and paper. The nurse brings him a stubby pencil and some scrap paper. Dad places the pencil in Mom’s right hand, and holds the paper for her.
“OK?” she writes.
“I’m okay, honey, I’m okay. We are all fine. Don’t worry, baby.”
Then she writes, “Love.” The short messages in her unsteady hand look like a first grader’s attempt at passing notes. Dad takes the note back to write a response, though it’s clear she can hear him. The pencil and torn graph paper are the voice Dad needs right now, and where he must meet Mom for this conversation. I shouldn’t be here for this exchange, but I’m trapped between Dad’s chair and the wall in this cramped space between monitors and IV poles.
Dad’s right fist is closed over the pencil stub pressed against the paper on his knee. He holds the note before her. The only word he has written this time is, “Genevieve.”
Mom reads her name, looks over at Daddy. She stares hard at the paper, as though that last word is inscrutable or might disappear altogether. She half-coughs. Her eyes want to cry but her body won’t let her.
“You okay, hon?” a nurse asks Mom, and scowls at us.
I want to reassure the nurse that we haven’t said anything scary or brought bad news into the ICU. But how could I explain the importance of that note? Who would believe more information is contained in this single word than can be read in all these monitors reporting even the slightest of changes in Mom’s every vital sign?
Mom manages a nod. This gesture, its own language in specialized intensive care, satisfies the nurse. She walks away.
Dad again presses the note against his knee. “I love you. Always,” he writes.
Mom nods. He stands up, leans over to kiss her forehead. “Genevieve,” he whispers. When he sits back in his chair again, I’m relieved and embarrassed.
Mom tries to point up at us, or at something behind us, but the tether on her wrist restricts her motion. Then I see the clock, high on the wall above Dad’s head.
“Hey, yeah, Daddy, look—it’s almost midnight,” I say. “Happy New Year, Mama.”
After two days in ICU, Mom returns to her hospital room on the transplant floor. She is in pain, and we watch her closely. Rachel returns to take Mom’s vitals; when she leaves the room, I notice a new chart hanging on the wall, just inside the door. My eyes are drawn to a cryptic line on the new chart: “Donor organ: 14yo Caucasian female,” whose other organs were also harvested, the chart seems to suggest.
All of our veiled and passive language about this gift, the way we’ve avoided the truth that was always in our peripheral view—the fact that Mom’s survival depends upon someone’s death—is glaringly inadequate and seems a little dishonest now. “When a donor organ becomes available;” “when an organ is located;” “when there is a match for you.”
We gather at a nearby hotel room, and I tell Dad what I read about the donor organ. This information seems to weigh heavily on him. He wears it in his shoulders, slouched over a book he’s not reading, and it’s on his face as he stands at the window, again, staring into the darkness. He calls us together, and doesn’t make eye contact as he tells us to kneel for prayer. We are awkward and quiet, assuming the postures of childhood and a faith most of us have abandoned. But we do it for him. And for Mom. He mentions the donor’s family in his prayer, calls them, “those generous people” and asks God to bless and keep their “little girl.” We don’t speak of it again, but I hear Dad crying long after we turn off the lights.
Scott McCartney’s Defying the Gods was an important reference for my family during my mother’s wait on the transplant list. McCartney’s research is a mix of the clinical and anecdotal, the physiological and the spiritual. He addresses the cost of transplant surgery and the inequities in organ distribution. His accounts of unprecedented access to the organ allocation system, transplant surgical teams, and patient recovery at Baylor University Medical Center are riveting and harrowing.
In all the years since Mom’s transplant, my tattered copy of Defying the Gods has occupied a spot on my bookshelf, less for its clinical and programmatic data than for McCartney’s reflection on a post-operative condition that has persisted since Mom’s recovery: our family’s seeming and inexplicable ingratitude. Our response is not uncommon, and has basis in the psychology of the process and in the sheer magnitude of the donor’s gift. McCartney observes:
“If there is a curious footnote, it is that none of the (organ recipients chronicled in the book) has been able to sit down and write a letter of thanks to the families of their donors. The words do not come easily; the emotions overwhelm the pen. Transplantation has allowed this unique charity to become standard operating procedure in our society, and yet those touched by it struggle to find ways to show gratitude. How do you thank someone for your life? How do you tell a family still grieving over the tragic loss of a daughter or son, a husband or wife, that you are thrilled to be alive…? How can you possibly explain why you got a second chance and they didn’t? How can we deal with such irony, such tragedy? Why do some win, and some lose?” (McCartney, Defying the Gods: Inside the New Frontier of Organ Transplants. Copper Canyon Press p.278).
McCartney’s interviews reveal that the gift of life is so truly awesome as to be almost incomprehensible. And that’s how we all felt: grateful beyond our capacity to express it. We were as unsophisticated and uneducated as any patient’s family could be about the system from which we directly benefited. And Mom herself can still hardly speak of it. But I can’t help wondering if the real defiance against the gods, the one “sin” I might be persuaded to believe in, is unexpressed gratitude.
As I witness now the aging of my parents and watch my own children enter adulthood, I feel a greater sense of urgency about expressing our gratitude—and condolences—to the family of “K,” a fourteen-year-old girl we never knew, but will never forget. Mom has drafted many letters to K’s family, and the organ donor organization between our two families has agreed to pass them along. But Mom has never sent any of those letters. And in the years since her transplant, social media could only make finding and connecting with K’s family so much easier. But Mom cannot be persuaded. She has a drawer full of drafts, notebooks with starts and re-starts. “It doesn’t seem near enough,” she says. “How could it ever be enough?”
Another Mother’s Day approaches, the holiday when my gratitude to K and her family is most acute, and I begin, again, a letter of my own; the delinquency is more shameful every year. I start with condolences and an attempt to account for the “good” my mother has done with her life. I tell K’s mother we’ve all tried to earn this gift—though our family is dysfunctional and scattered, and perfect only at being imperfect. But even in this, even in expressing sorrow for her loss, in offering explanations and making introductions, I am so remiss.
I start over. Again.
Because the first words to say, maybe the only words, are Thank you.