{"product_id":"remedies-for-sorrow-isbn-9780385548595","title":"Remedies for Sorrow","description":"\u003cb\u003eThis \"compulsively readable memoir...brings to light an issue that has been too long ignored...An immensely important book\" (Emily Oster, \u003ci\u003eNew York Times\u003c\/i\u003e bestselling author of\u003ci\u003e Expecting Better\u003c\/i\u003e and \u003ci\u003eCribsheet).\u003c\/i\u003e\u003cbr\u003e\u003cbr\u003eA story of a mother’s fierce love for her exceptional child and her courageous journey to break the silence about a hidden risk to pregnant women: \"both a beautiful family story and an urgent call to action… [A] moving, potentially life-altering book\" (Robert Kolker, author of #1 \u003ci\u003eNew York Times\u003c\/i\u003e bestseller \u003ci\u003eHidden Valley Road\u003c\/i\u003e).\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003eAfter a seemingly uneventful pregnancy, Megan Nix’s second daughter, Anna, was born very small and profoundly deaf. Megan and her husband, Luke, learned that Anna could have lifelong delays due to an infection from a virus they had never heard of: cytomegalovirus, or CMV, which Megan had unwittingly contracted from her toddler during pregnancy.\u003cbr\u003e\u003cbr\u003eMegan was electrified by this knowledge. She had been warned, while pregnant, about the risks of saunas, sushi, and unpasteurized cheese, a lack of folic acid, and an excess of kitty litter. She knew to fear a slew of genetic syndromes she could do little to prevent. But she had not been told that CMV is contagious in the saliva of one out of three toddlers, spread through a kiss, a shared cup, a bite of unfinished toast. She had not been told that the stakes were high, that congenital CMV causes more birth defects and childhood disabilities—including blindness, deafness, cerebral palsy, epilepsy, and autism—than any infectious disease. Or that some of these disabilities are evident at birth, but others appear suddenly at age two or three and are never traced back to congenital CMV.\u003cbr\u003e\u003cbr\u003e\u003ci\u003eRemedies for Sorrow\u003c\/i\u003e\u003cb\u003e \u003c\/b\u003eunfolds across the dramatic landscape of Sitka, Alaska, where Luke makes his living as a salmon fisherman. There, Megan struggles to meet Anna’s needs and dives deeper into the mystery of why no one—not her OBGYN, not her toddler’s pediatrician—had mentioned CMV, despite the staggering cost of this silence to families and children like Anna. From this rugged and beautiful place comes a memoir about the boundless capacity of mothers, the extraordinary child that is Anna, and the lifesaving power of truth.\"How did a virus that mothers pass to their children — one that leads to significant, sometimes tragic, lifelong effects — become, as Megan Nix puts it, 'nonexistent in the narrative of pregnancy?' Written with passion, wisdom and grace, \u003ci\u003eRemedies for Sorrow\u003c\/i\u003e is both a beautiful family story and an urgent call to action. An essential, moving, potentially life-altering book.\"\u003cbr\u003e\u003cb\u003e\u003cb\u003e—Robert Kolker, author of #1 \u003ci\u003eNew York Times \u003c\/i\u003ebestseller \u003ci\u003eHidden Valley Road\u003c\/i\u003e\u003c\/b\u003e\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e\"\u003ci\u003eRemedies for Sorrow \u003c\/i\u003emight be the most powerful book you read this year. Megan Nix is a writer of grace, intellect and bravery. Buy it for every mother you know.\"\u003cb\u003e\u003cb\u003e\u003cbr\u003e\u003cb\u003e—\u003c\/b\u003eEmily Rapp Black, \u003ci\u003eNew York Times\u003c\/i\u003e bestselling author of \u003ci\u003e\u003ci\u003eThe Still Point of the Turning World\u003c\/i\u003e\u003c\/i\u003e\u003c\/b\u003e\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e\"This is so much more than a book about medicine; it is a fierce, tender, intimate, beautifully written meditation on motherhood. The harsh beauty of Alaska and the intricate grace of her faith weave through Megan's story like silver and gold threads, invitations to sink deeply into the story of a life that is alternately heart-breaking and heart-healing—and that very much needs to be told.\"\u003cb\u003e\u003ci\u003e\u003cbr\u003e\u003c\/i\u003e\u003cb\u003e—\u003c\/b\u003eCara Wall, author of \u003ci\u003eThe Dearly Beloved\u003c\/i\u003e, \u003cb\u003ea Read with Jenna pick\u003cbr\u003e\u003c\/b\u003e\u003c\/b\u003e\u003cbr\u003e\"This honest and beautifully written account of a child’s potentially preventable disability from congenital CMV is a call to action for parents and medical professionals. More than that, though, it is a love story, a testimony to the power of the bonds between parent and child, family and community, human beings and nature, a writer and language. As a doctor, a writer, and a mother and grandmother, \u003ci\u003eRemedies for Sorrow\u003c\/i\u003e informed, moved, and inspired me.\"\u003cbr\u003e\u003cb\u003e\u003cb\u003e—\u003cb\u003eDr. Suzanne Koven, author of \u003ci\u003eLetter to a Young Female Physician\u003c\/i\u003e\u003c\/b\u003e\u003c\/b\u003e\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e\"Anna is born tiny, deaf, and near motionless, a casualty of preventable congenital cytomegalovirus infection. In \u003ci\u003eRemedies for Sorrow\u003c\/i\u003e, her mother Megan Nix performs a deep biopsy of suffering and loss and rage, exposing her own existential dread, the loneliness of illness, and the cataclysmic power of love. That she triumphs over a global biomedical conspiracy of silence surrounding CMV infection adds to her and Anna’s heroism. I’ve never read such a stunning excavation of the multi-dimensional experience of serious illness and recovery.\"\u003cb\u003e\u003cb\u003e\u003cbr\u003e\u003cb\u003e\u003cb\u003e—Dr. \u003c\/b\u003eRita Charon, Founder and Director of the Program in Narrative Medicine at Columbia University\u003cbr\u003e\u003c\/b\u003e\u003c\/b\u003e\u003cbr\u003e\u003c\/b\u003e\"A medical odyssey that reads like a vivid and intimate diary entry, \u003ci\u003eRemedies for Sorrow\u003c\/i\u003e tells the story of one mother’s journey from near-despair to hope. It lays bare the shocking particulars of an avoidable but ignored disease that has brought pain to untold numbers of families. But it’s also a story that will resonate with anyone whose experience of pregnancy and parenthood was different from what they’d once dreamed—in ways both devastating and redemptive. This searing and spiritually rich memoir is a must-read for mothers and everyone else.\"\u003cbr\u003e\u003cb\u003e—Abigail Tucker, \u003ci\u003eNew York Times \u003c\/i\u003ebestselling author of \u003ci\u003eMom Genes\u003cbr\u003e\u003cbr\u003e\u003c\/i\u003e\u003c\/b\u003e\u003ci\u003e\"\u003c\/i\u003eNix is honest and forthcoming, an engaging writer with a gift for description. CMV is just beginning to get the attention it deserves from the medical world, and this timely and insightful account will help raise awareness.\"\u003cbr\u003e—\u003cb\u003e\u003ci\u003eBooklist \u003c\/i\u003e(starred review)\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e\"...Nix investigates with an unwavering focus the most common virus that pregnant mothers do not know about. In this complex family memoir of science, faith, and advocacy, Nix [calls] out the paternalism so often found in medicine. She brings us the daily hard and beautiful of families raising (and losing) children with CMV...helping us imagine halting the viral damage to cells with the lyrical \u003ci\u003ehesed\u003c\/i\u003e\u003cb\u003e—\u003c\/b\u003ea call to contribute to society\u003cb\u003e—\u003c\/b\u003ein these pages.\"\u003cbr\u003e\u003cb\u003e—Hands \u0026amp; Voices\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e\"[A] moving debut...In sharing the fears, frustrations, and challenges she has faced, the author lays bare both insidious medical paternalism and the dismal failure of public health policy. An inspiring memoir with an urgent message.\"\u003cbr\u003e\u003cb\u003e\u003cb\u003e\u003cb\u003e—\u003c\/b\u003e\u003ci\u003eKirkus Reviews\u003c\/i\u003e\u003c\/b\u003e\u003c\/b\u003eMEGAN NIX's writing has appeared in\u003ci\u003e The New York Times\u003c\/i\u003e; \u003ci\u003eThe Washington Post\u003c\/i\u003e; \u003ci\u003eBrain, Child \u003c\/i\u003emagazine; and elsewhere. A graduate of the University of Alaska Anchorage Master of Fine Arts program in nonfiction, Megan divides her time between Colorado and Alaska with her husband and young children.Chapter 1\u003cbr\u003e\u003cbr\u003e-\u003cbr\u003e\u003cbr\u003eIt’s dawn when I first hear Anna’s silence. The midwife is holding up my daughter, the cord between us not yet severed. She’s fully formed but remarkably small, dangling in the first amber light of the sun. The tower of the hospital chapel is sounding out the tones of the half-past-five bell. My baby remains soundless, suspended—but she’s alive, I can tell. She’s looking at me intensely. She is black-haired and black-eyed. I know her name already.\u003cbr\u003e\u003cbr\u003eMy husband isn’t there. The midwife motions for my mom to cut the cord. My mom takes scissors to the bluish rope, then places my child in my outstretched arms. For a few seconds, I’m allowed to hold her to my chest, where I can feel the deep, repeating throb of a mallet hitting a gong. Then a doctor is called. Someone slips Anna from my hands. She’s brought to the corner where people huddle over her. Towels jostle her form. \u003cbr\u003e\u003cbr\u003e“Is she okay?” I ask, again and again. Then, like a pierced bubble, her scream breaks free and fills the room.\u003cbr\u003e\u003cbr\u003e“She’s okay,” the doctor or the midwife says. “But she’s only five pounds.”\u003cbr\u003e\u003cbr\u003eThe space changes due to her sound. The pace quickens, the shades grind up into their rectangular sockets, and now the light is a raw, painful white. A nurse demands I eat a package of graham crackers and cheese. I’ve had no drugs for Anna’s birth, and the intensity of it is still strobe-lighting the room. I do as I’m told. Then I’m helped to a wheelchair in my nightgown, which is bright red with purple satin trim. I look a little more regal than I’d planned for an event that has destroyed me like this.\u003cbr\u003e\u003cbr\u003eThe nurse brings Anna to me, swaddled. Her hat is too big, with tiny stripes and an oversize bow. My mom appears, holding out my phone, and says, “You need to call Luke.”\u003cbr\u003e\u003cbr\u003eMy husband is asleep on the fog-embalmed island in Southeast Alaska where he fishes for salmon from May to September. It’s three a.m. there. But he answers.\u003cbr\u003e\u003cbr\u003e“I’m holding our baby,” I tell him.\u003cbr\u003e\u003cbr\u003e“You are?” he responds, the sleep still like gravel in his voice. “Is everything okay?”\u003cbr\u003e\u003cbr\u003e“Yes,” I say, “but she’s small.”\u003cbr\u003e\u003cbr\u003e“I’ll take the first flight tonight,” he replies.\u003cbr\u003e\u003cbr\u003eAnna is quiet. Her eyes, on mine, are shiny. The nurse rolls us out of the room and into an empty tiled hallway.\u003cbr\u003e\u003cbr\u003e“Hear that?” she says. “They’re playing that song for your baby, for her birthday.”\u003cbr\u003e\u003cbr\u003eThe song is Brahms’s “Lullaby.” The beauty of the violin is a blade, cleaving me to pieces. I’m so proud, I can barely breathe.\u003cbr\u003e\u003cbr\u003e-\u003cbr\u003e\u003cbr\u003eThe recovery room faces west. When the pain recedes enough, I leave the bed. I sit in a rocking chair by the window and look alternately at the bruise-colored line of the Rocky Mountains against the sky and Anna’s brand-new moon-white skin. Her head is the size of a grapefruit, still wet. Her hair is matted down in tiny dark swirls. And her eyes, in this light, are magnificently deep and huge, with tentative rays of gray reaching from her pupils into an oceanic blue. During those first newborn hours when babies can be spacey and sleepy, Anna stays awake. There’s something different, even foreign, about this child, like she might contain something that isn’t quite ours.\u003cbr\u003e\u003cbr\u003eLuke calls again. He’s on his boat now, squeezing in one last day of fishing so we can afford for him to come home. I can picture him in his orange fishing overalls, the white sky, his silver boat, the rolling black sea. Mountains in every direction, like they might be able to stop the colossal heaving of the ocean.\u003cbr\u003e\u003cbr\u003eWe’d planned it this way months earlier—for Luke to be in Alaska and me to be in Denver—knowing he would miss Anna’s birth. I’d had an unexpected C-section with Zaley, my firstborn, and the recovery had nearly undone me—the feeling of swollen ropes in my abdomen, the painfulness of laughter, the inability to walk around the block for nearly two months. For my second, I wanted a chance at a nonsurgical labor.\u003cbr\u003e\u003cbr\u003eThe OB in Sitka had said no, when I’d called from Colorado, still pregnant with Anna. I could not try for a vaginal birth, he said, even though I pointed out that it posed the same risk for me, statistically, as any woman having her first child. It seemed I understood my risk better than the doctor. And yet I would be the one held accountable for endangering my baby. He would be happy to schedule my second cesarean.\u003cbr\u003e\u003cbr\u003eFor the first and only time in my life, I preferred Luke’s absence: I couldn’t have this baby in Sitka, where he’d be fishing seven days a week, and I’d be recovering from an operation on a remote island with a nursing newborn and a toddler whose favorite phrase was I want to do something! And while it would have been illegal to force a laboring woman into surgery, I took the OB in Sitka seriously. I respect doctors, I tend to be obedient to authority, and I didn’t yet think of motherhood as an authority of its own.\u003cbr\u003e\u003cbr\u003eOver the phone, I can hear the clang of Luke’s rods going into their stands, the beep of his radio when he powers it down.\u003cbr\u003e\u003cbr\u003e“Her name is Anna,” I tell him. “Anna Ruth.”\u003cbr\u003e\u003cbr\u003eAnna means “full of grace.” And it’s June 19—my grandma Ruth’s hundredth birthday. My dad is in Chicago for her birthday party.\u003cbr\u003e\u003cbr\u003eThere’s a pause as Luke’s calm, deep voice covers the country between us, and then he says, “That’s perfect.”\u003cbr\u003e\u003cbr\u003eEverything’s perfect except for the feeling that everything isn’t.\u003cbr\u003e\u003cbr\u003e-\u003cbr\u003e\u003cbr\u003eSince the 1960s, the public health department in every U.S. state has required that newborn babies, within the first few days of birth, be tested for a battery of diseases and disorders through their blood, which a nurse extracts from the infant’s heel with a tiny stapler-type tool. Those first bulbs of blood are then stamped on an index-size card and compose the Newborn Dried Blood Spot, commonly referred to in medicine as the DBS. Once the baby’s heel has yielded enough blood for five hole-punch-size circles, the card is transported to a lab, where the presence of thirty-some childhood illnesses is assayed. Diseases like phenylketonuria, maple syrup urine disease, cystic fibrosis, and sickle cell anemia are identified by the test, their names already a part of the medical canon, no matter how few or how many children they affect.\u003cbr\u003e\u003cbr\u003eWhen Zaley was born in 2012, I was not prepared for this taking of her blood. I didn’t expect to see her bleed until she was older—a child mobile enough to fall. The DBS doesn’t require a parent’s written consent, and no one offered to explain it, either. This conversation is absent for nearly every woman holding her newborn child. When I offered Zaley’s heel to be punctured, it was the first time I wondered if my lack of knowledge implicated me in my daughter’s pain.\u003cbr\u003e\u003cbr\u003eHolding Anna now, I realize I’d forgotten to look up the test and its diseases. I ready Anna’s bone-colored foot. I love this appendage to a ridiculous extent already, the sheen of her pearly heel, her raisin-size big toe.\u003cbr\u003e\u003cbr\u003eA nurse pops it with the blade. Anna screams. Not enough blood comes out—her veins are too small. The nurse squeezes again till the foot is a furious purpled web. Then on the underside, the blood appears, pinprick small, and the nurse presses it down on the card. The nurse leaves with the newborn test, and I never see her again.\u003cbr\u003e\u003cbr\u003eI never see the blood on the card again, either. When I picture it today, it’s in a landfill or a dark hospital basement, nearly turned to dust, even though the specimen might hold a clue to the unexplained disabilities of millions of children around the world.\u003cbr\u003e\u003cbr\u003e-\u003cbr\u003e\u003cbr\u003eThe rotating doctors arrive next, and they seem weird. They always come in sets of two. They’re pediatricians from Children’s Hospital, they say, and they congratulate me, but their tone is noncongratulatory. They carry clipboards, poised. One takes Anna to the plastic-walled bassinet, which is near the window. (I am so instinctively protective of her body, I won’t place her in it at all after her birth.) One of the doctors indents Anna’s abdomen, the other one frowns. No one offers the possibility of disease.\u003cbr\u003e\u003cbr\u003eI’m sitting up, chipper—So? Everything okay?—believing that the perkier and less emotional I seem, the better care I will receive. But they just look up like they’re surprised to see me, then one smiles tightly and nods and says, “She’s a beautiful baby.”\u003cbr\u003e\u003cbr\u003eShe is, but she’s also more than that, I can sense. I just don’t know what question to ask. When they leave, they sound like shoes, and the door latch clicks with finality. They won’t have answers. They might not come back. I’m hungry.\u003cbr\u003e\u003cbr\u003eI order room service like a queen: fat, mayonnaise-filled sandwiches with fries on the side. Vanilla pudding and redundant Jell-O that jiggles happily when an aproned lady rolls the tray into my room. Anna has no rash, no seizures, no outward trouble breathing. There’s no red flag, except the one inside my sternum, which feels like a damp fabric, flapping wildly, unseen.\u003cbr\u003e\u003cbr\u003eA nurse comes in and washes Anna’s ink-black hair over the sink. When she hands my child back to me, her head smells warm, like sugar cookies and soap. But her eyes are sharp, boring into me in a language I don’t yet know.\u003cbr\u003e\u003cbr\u003e-\u003cbr\u003e\u003cbr\u003eIn the late afternoon, a young woman rolls the second requirement of the newborn screening program into the room: The hearing test cart contains a baby-holding tray and a computer with wires sticking out of it that will go inside Anna’s ears. These electric earbuds will emit loud clicks, prompting an instinctual response in Anna’s innermost ear if she can hear sound.\u003cbr\u003e\u003cbr\u003eUp until the 1990s, most children didn’t have their hearing checked in the hospital; deafness often went undetected till the age of three or four, permanently altering the way a child’s brain could form and communicate complex thoughts. But when Anna is born, in 2015, 98 percent of American infants will have their hearing tested before they’re discharged, since hearing loss is the most common irregularity in infants from birth—and frequently a sign of systemic disease. Unbeknownst to me, the unassuming metal cart in the room is evidence of something I will strive for during the rest of Anna’s early childhood: proven research leading to major policy changes in pediatric public health.\u003cbr\u003e\u003cbr\u003eThe hearing technician inserts the wires into Anna’s ears and tells me the test will be quick. I remember the test from Zaley’s first days. But this time I know Anna will fail. It’s as clear to me as the fact that labor produces a child.\u003cbr\u003e\u003cbr\u003eThe woman puts her hand on Anna’s chest to steady her as she starts the test. I hold my breath, trying to create an even deeper silence than the one that exists. I can hear the muffled clicks and see that Anna is falling asleep through them. After a few minutes, the technician pulls the cords from Anna’s ears. Then she gently swaddles Anna while I wait, almost out of air. Only when Anna touches my hands does she say, “I’m sorry, but she actually failed on both sides.”\u003cbr\u003e\u003cbr\u003eAnna is looking at me. I have nothing to give her, no explanation, no voice.\u003cbr\u003e\u003cbr\u003eThe hearing technician says she will retest the next day, and if Anna doesn’t pass that one, I need to have her tested again in a week. She gives me no hope that Anna will be able to hear—which I appreciate later—just the information the wires have given her: sound met with silence. The technician leaves, and Anna and I lie in heavy quiet, the bale of my anxiety like weighted oxygen all around us.\u003cbr\u003e\u003cbr\u003e-\u003cbr\u003e\u003cbr\u003eIn Susan Sontag’s Illness as Metaphor, she writes: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Before having Anna, I conceived of health and sickness as Sontag presents them: two territories, the second of which I would reach on my own two feet—through old age, or an unexpected diagnosis that would be mine alone to bear. But in those first hours of Anna’s life, her silence beckons me to a third place: the border between health and sickness where we will live together.\u003cbr\u003e\u003cbr\u003eThis feels like foreign soil. The American prenatal system did not prepare me, as an expecting mother, for the possibility of a disabling contagion. My OBs and midwives had implied that genetic testing and a healthy lifestyle were the best practices of pregnancy, that the twenty-week anatomy scan would reveal any complications, and that the list of disorders in their paperwork was comprehensive, would leave no large stone unturned.\u003cbr\u003e\u003cbr\u003eLuke and I were healthy, we had no history of medical conditions in our families, and it was the fall of 2014: we were—as yet—a country largely unbothered by the risk of grave infectious disease. Viruses that threatened all of humanity were a thing of the past, I’d thought, and if they leaked through our borders, it was in small, combatable numbers, as with fleeting outbreaks of measles, Ebola, TB—fairly nonthreatening flare-ups, quickly squelched by a trustworthy (but vague) public health system designed to prevent and protect.\u003cbr\u003e\u003cbr\u003eAs for epidemics in American children, those belonged more to the realm of fiction than to real, current-day life. These kinds of plagues happened only in centuries past, in the pioneer literature I had read as a child and would later read to my kids: malaria in Little House on the Prairie, scarlet fever in Little Women—both diseases so rampant as to be expected, and that presented with symptoms the parents could see.\u003cbr\u003e\u003cbr\u003eNo, an infectious disease simply does not occur to me while I’m considering Anna’s anomalies; she has only lived inside me, where things had been handled appropriately. Like any well-read woman in the twenty-first century, I’d understood the fundamentals of pregnancy: no kitty litter (it can carry toxoplasmosis), alcohol (which can cause fetal alcohol syndrome), lunch meats (which carry listeria, very rarely), or sushi (due to high levels of mercury). Aside from these standard no-no’s, I figured if I needed to worry about something contagious and dangerous to her gestation, then my doctors, the CDC, and the internet would have warned me.","brand":"Doubleday","offers":[{"title":"Default Title","offer_id":46305154040037,"sku":"NP9780385548595","price":28.0,"currency_code":"USD","in_stock":false}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/1842\/7735\/files\/9780385548595.jpg?v=1767735621","url":"https:\/\/k12savings.com\/products\/remedies-for-sorrow-isbn-9780385548595","provider":"K12savings","version":"1.0","type":"link"}