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  More grateful than ever to the MacArthur Foundation, I was able to spend that time with him; for soon, when he was three and a half, we made the rounds of “interviews” for kindergarten, during which school administrators at various New York schools seemed intent on assessing each three-year-old’s chances of getting into a college like Harvard. That’s not what matters to us, I thought. We’ve been there, done that. Besides, this child may never go to college. Where can he best thrive now? Since his pediatrician knew the local schools, and was on call for several of them, he agreed with our decision not to tell them of Mark’s condition, lest they treat him like a china doll (I avoided saying, even to myself, “like a dying child,” since I fiercely refused to accept that diagnosis). Much later, though, I realized how that secret isolated us from other parents, even from the parents of his friends at school. Mercifully, his illness was invisible. Except for being thin, he looked and acted like other children, and since no treatment could help, he was spared medical ordeals.

  One sunny afternoon, as he was riding his red tricycle through Central Park, he declared that the Town School, which we’d visited, was “my school”—a place filled with sunlight, with views of the East River, where Mr. Brockman, a large, huggable, bearlike kindergarten teacher, had set up a woodworking shop in the back of his classroom. We didn’t tell Mark that he hadn’t been admitted and was only on the waiting list; but when it cleared, the classroom at the Town School with Joshua Brockman, whom he adored, became his school.

  Meanwhile, physicians at Babies Hospital who knew me because of Mark’s diagnosis asked me to join the bioethics committee for the neonatal intensive care unit—not the ordinary one, but a separate one reserved for babies and children born with serious, usually terminal, illnesses. At each meeting, physicians would present cases that involved disputed decisions about appropriate care: the baby who had been kept alive for weeks on a heart-lung machine, ordinarily used only for a few hours at a time during open-heart surgery; the Siamese twins from Colombia, only one of whom, the physicians explained, could survive the surgery necessary to separate them; the infants born to addicts, already addicted to crack cocaine themselves; the two-year-old whose parents refused surgery for religious reasons. As a medical outsider, and especially as Mark’s mother, hearing these intense discussions gradually helped me face the wholly unacceptable fact that there are many situations that medicine can’t cure. Most often, in the cases we heard, the physicians, nurses, and staff, hardworking and conscientious as I knew them to be, could do nothing. I noted, too, the staff pediatrician who, when her seven-year-old daughter was diagnosed with inoperable cancer, took her child home to die, rather than subject her to medical torture to prolong her life.

  After each of these meetings, I felt exhausted walking back through the intensive care unit. Intensive care is a godsend when it can keep someone alive through a crisis; here, though, it served mainly to stretch out each child’s dying for weeks, even for months and years. Physicians dealing with children seemed to feel that they had to try everything to keep a child alive as long as possible, even under the most extreme conditions. So when my term on the committee ended, the medical staff, knowing of Mark’s condition, were surprised by what I said when thanking them for the opportunity to work with them. “I have great admiration for what you do, and what you deal with every day,” I said. “But what you call ‘heroic measures’ are often superheroic measures. For the sake of the children, please consider stopping earlier than you usually do.” And every time I left the hospital after one of those painful meetings, I would breathe with gratitude that Mark was in school, climbing, building, practicing letters, in sunlit classrooms at the Town School.

  At the same time, contending with his dreadful diagnosis, I asked Mark’s godfather, an analytic psychiatrist, to refer me to a colleague with whom I could talk freely, to avoid inflicting emotional storms on Mark or Heinz. While talking with the compassionate, incisive man he recommended, I struggled hard with my own powerlessness, which spurred an intense interest in magic. I felt I’d give anything to know how to do it, whatever it took—a spell, a cure, a bargain with invisible powers. How could we go on living, having no control over what mattered more than our own lives?

  Every morning that year looked gray when I woke up; sometimes lighter gray during the morning hours, darker in the afternoon. The psychiatrist called it “situational depression,” since I’d never suffered from depression before; now grief mixed with guilt and isolation. I knew no one whose child had died, and I learned only much later that it happens far more often than I’d ever imagined; even the ancients, who so often experienced the death of their children, called it “the unbearable grief.” When one day my empathetic psychiatrist suggested “Why not regard your students as your children?” I was stunned into silence, then stammered, “I’m not that crazy.” How neurotic would that be, for them and for me? Had I never had children, I might have been able to hear what he suggested, but now, as Mark’s mother, I knew that only caring for children could possibly matter, confronting such a loss.

  Ever since Mark’s cardiologist presided at the diagnosis, she’d urged me to talk with one of the nurses at Babies Hospital. For over a year I adamantly refused, since I knew that she was the nurse to whom they referred parents of dying children—and privately, I’d sworn that our son is not going to die. But after fighting huge resistance for a year and a half, I finally called the nurses’ office to make an appointment. When I arrived at Babies Hospital, after slowly finding my way to her office, her secretary said she’d been expecting me. After closing the door behind me, she asked me to sit down, and said simply, “There’s a name for what you are going through: it’s called ‘mourning.’ That doesn’t start when someone dies; it starts with the diagnosis.” Much as I hated hearing it, as my body sank into desolation, I registered what she said. It was years before I could acknowledge that her words also brought some relief, perhaps some slight measure of acceptance of something I’d sought so long to deny.

  When we returned to California for the summer, I was torn apart. Believing what the doctors told us, I felt, would amount to betraying Mark, might hint that we were giving up on him, but denying what they said had solved nothing. At the same time, denying the diagnosis was not a choice; it was simply what we did. Since we were fighting for Mark’s life along with him, we decided to consult other doctors as well. First we made appointments at Massachusetts General, and spent two days meeting with several teams of specialists there. Later, we flew with Mark to San Francisco, to consult a pediatric pulmonologist famous for his work with this disease; but he, too, slowly, kindly told us that he agreed with the others: no treatment, no cure.

  Back in California for the summer, I no longer had the slight anesthetic of wine to ease an agony deeper than anything I’d ever imagined. Having sometimes smoked cigarettes in graduate school, I began to smoke again, almost purposefully. Heinz disliked smoking, having quit years earlier, and I disliked it as well, but I defended myself inwardly, thinking, Don’t I have a perfectly good reason to do anything at all that might ease the stress? At the same time, I kept asking, Why am I doing this? At first I thought that I was trying to take on Mark’s illness and transfer the lung disease from him to me. Magical thinking; but for a moment it made me feel justified, or perhaps suitably punished, for not being able to protect him. But early July brought a sudden shock of recognition. Could it be that I was trying to kill myself? Suicide was not an option I’d ever considered, but since I could not imagine seeing him die, was I somehow choosing to bring a lung disease on myself, so that I wouldn’t have to live through his illness, possibly even through his death? Horrified, I thought, What if I succeeded? How would that affect Mark and Heinz? How could they deal with what Mark needed, if they had to deal with my death as well? That question struck like lightning; and the moment it did, I immediately quit smoking, never to touch it again. That happened on July fourth—a new kind of Independence Day—once I’d faced down
a fraction of the fear.

  When we returned to New York, I imagined that Mark would regret leaving the California woods, forests, and ocean, as I did; but instead, he gleefully shouted, “Back home!” Now I resolved to treasure every day, making sure to buy our favorite groceries for dinner, often stopping to buy a helium balloon to bring home for him. After I brought him new crayons with a large sketchpad, he proudly presented me with his “first book.” On page one, he drew a heart—not a Valentine’s heart, but a child’s version of an anatomical drawing—and told me what to write below it: “This is a heart, beating.” I was amazed; how clearly he knew what mattered. He eagerly explained that he was planning a television show that he would call “Worlds of Wonder,” about bees, water, dinosaurs, dragonflies, stars, and the sun. And every night, Heinz regaled him with stories he made up about various tribes of dragons—the striped dragons, the polka-dot dragons, and other dragon species, in ongoing sagas the two of them shared. One morning in New York, as Mark and I sat together on a low, leafy branch of “our tree” in Central Park, he confided, “I’m the king of the dragons. And the queen of the dragons is named Sarah.” “Who do you know named Sarah?” I asked, expecting that it would be someone in his class at school. “No one,” he said.

  Heinz and I fervently hoped for more children, but after a miscarriage, we began to talk with Hugh Hildesley, a priest at the Church of the Heavenly Rest in New York, about adopting a child. He told us of the Gladney Center for Adoption, an agency in Texas that people in the Presbyterian church had founded over a hundred years ago, to locate good homes for children whose birth parents were unable to care for them. Instead of accepting applications, which would have required more staff than the agency had, the staff would consider applications only from couples recommended by people they knew. Furthermore, the agency’s staff worked hard to make the difficult situation of unexpected pregnancy as positive as possible for the birth mothers, most of them girls in high school. They could live there in dormitory rooms that looked like a college campus, where they could find support, understanding, and counseling, and take some classes. Since Hugh and other friends offered to recommend us, the agency agreed to consider us, and we flew down to Fort Worth. There we sat in a meeting with about forty other couples, where each of six birth mothers spoke to us, in turn, of her experience there, and why she had chosen to consider adoption at Gladney. My husband, who, like other scientists we knew, usually regarded church people as naive do-gooders, was impressed, and said, “This is what all those Christians ought to be doing!” So we began the arduous process of filling out dozens of forms, writing essays, making appointments for interviews, and assembling a large dossier of letters of recommendation, grateful that the agency finally put us on the list.

  At the end of May we got the call that we’d been waiting for: Patti, the social worker we’d come to know well by now, invited us to come to meet the baby girl, just born, who their counselors felt could match our family. Excited, we immediately flew down to Fort Worth. When we first saw her, the pediatrician explained that she had been born over two months prematurely, and he would not allow us to bring her home until after her due date. I wept inconsolably when we left the agency for the Dallas airport: now we’d have to wait.

  Back to the cabin in California, to the horses, the meadows, the ocean. One night, after dinner, Mark told me he’d dreamed that we were going to leave him in the cemetery that we drove past every day on our way to the ocean. Clearly he knew that he was vulnerable; a red scar ran down his chest where the surgeons had broken his sternum to operate during open-heart surgery. Heinz and I had agreed that we’d answer whatever questions he might ask as directly as possible, but not to initiate talk about dying. So when he told me about his dream, I froze, but struggled hard to listen. As he told me about it, we made a drawing of it together; he drew the grass, gravestones, and crosses, one with a stone angel on top.

  Talking with him about his dream, I felt especially apprehensive about having initiated the adoption. Even though we wanted two children, was that an act of disloyalty to the son we adored? Could it suggest that we’d given up on Mark’s life and were preparing for life without him? The three of us held each other especially close that summer, spending hours in the tree house in the redwoods, and, in the afternoons, wandering by the ocean, marveling at the sea anemone, the tiny crabs and sea snails in the tide pools. Mark was thinner than ever, but I tried not to notice, and mostly succeeded. Days before we were leaving California, his gray parrot, who every summer for three years had gloried in sitting in the apple tree each morning, flew away. Mark was devastated. Although we looked and called for him all afternoon until long after dark, we did not find him.

  Just when we arrived back in New York, the call came: now we could bring our daughter home! When the three of us arrived in Fort Worth, carrying a bag packed with baby clothes and blankets, Patti ushered us into a room decorated with baby chicks and bunnies, and invited Mark to go with her, and be the first to see his new sister. After what felt like hours, Mark returned, smiling and proud as a big brother, helping Patti carry his new baby sister in a tiny carrier. As we marveled at meeting her, Patti asked, “What are you going to name her?” We’d already decided on a name, but seeing her, and realizing that she was nearly two and a half months old, we suddenly thought of what huge changes this tiny child would experience. Since she was leaving everything familiar to her, we felt it would be wrong to add any more changes that we could avoid. So I said, “You must already have a name for her; what do you call her?” Surprised, Patti replied, “We call her Sarah.” Heinz and I looked at each other and nodded; we liked the name. “She must be used to her name: Sarah.” In the excitement of that moment, I’d completely forgotten what Mark had said over a year before. Several years later, I found a journal in which I’d written it down. So one night when Sarah, then five years old, confessed to me her worry that, being adopted, she didn’t really belong, I was able to tell her the story that reassures her that she belongs in our family; that even before she was born, her older brother, seeing her as “queen of the dragons,” knew she was coming.

  In September, Mark was eager to go back to school, where, with Mr. Brockman and his classmates, he was building a six-foot wooden airplane in the woodworking shop in back of the kindergarten class. In October, we had to postpone his birthday party, since he wasn’t feeling well; but he recovered well enough to go out with us on weekend family adventures—most often to the Museum of Natural History, to see the dinosaurs, the giant squid, the jewels, and the planetarium’s dazzling skies. On other days, we visited Mark’s favorite place, the Air and Space Museum on the USS Intrepid, Heinz and Mark often walking ahead, holding hands, while I carried Sarah in a baby pack.

  Two days before Christmas, Mark said he was hungry, and asked me to make a hamburger for him; but when I did, he felt too sick to eat, so we called the pediatrician for an appointment. This time Heinz took him. When they returned, Heinz’s face was ashen. He signaled that we urgently needed to talk; and since Jean Da Silva was there to care for the children, we left together and drove downtown. He told me what our pediatrician had said: “You should be prepared for a sudden demise. But don’t tell your wife.” Seeing the center of Park Avenue brilliant with thousands of crystal Christmas lights, blurred with floods of tears, I felt every one of their points stabbing like needles.

  Still, we breathed more easily in the New Year. Mark loved school; Sarah was growing, laughing, babbling in her own language, scooting across the expanse of oriental carpet, grabbing Mark’s toys, which sometimes he tolerated, and sometimes didn’t, the two of them playing and squabbling like inseparable siblings. But one night Mark told us that he wanted to call his beloved Rebekah, who lived in California. When we reached her, he pleaded with her to come to New York to visit us, soon. When she, living as a graduate student in San Francisco, explained that she couldn’t afford the trip, he said, “You can have my money,” offering her his savings account. Heari
ng this, we immediately sent her airline tickets, and she came; by then she, too, belonged to our extended family.

  Late on a Wednesday afternoon in April, when I called the owner of the cabin in California to arrange for our summer’s stay, he explained that it wasn’t available, since his daughter was planning to be married there in June. We couldn’t bear to tell that to Mark, so we decided to do so only after we’d found another place nearby. That evening, after Heinz told Mark his bedtime stories about the dragons, I went in to sing to him until he fell asleep. Instead, this time he clung to me, arms around my neck, and said, “I’ll love you all my life, and all my death.” Stunned, I stayed with him until he went to sleep, then walked into the living room. When finally I could speak, I told Heinz. Shocked as I was, he exclaimed, “He couldn’t have said that.” “I couldn’t have made it up.” We sat close, holding each other, shaking with sobs, silently, so they couldn’t be heard.

  The next day, Mark did not feel like eating, but was eager to go to school. That afternoon, after bringing him home, I called his cardiologist to set up an appointment for the next morning. When we arrived at her hospital office, her secretary told us that she’d ordered routine tests to be done first. When the nurse came in to draw blood, I was holding Mark on my lap; after she inserted the needle and left the room, he stiffened, and his eyes rolled up. I ran down the hospital hall holding him in my arms, calling for help. Within two or three agonizingly long minutes, six or seven physicians converged in a treatment room, placed Mark on a table, and worked to revive him while I stood over him, holding him close, and speaking to him in a steady, reassuring voice. But at a certain moment I sensed that his life left his body, and the intimate connection we’d been sharing suddenly seemed to break. Moments later, when his cardiologist arrived, I turned toward her and fell down, losing consciousness. Then I seemed to be in a brilliant place, vividly green, with golden light.