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  Hours later, around four in the morning, I was startled by something else that may have been a dream, although I didn’t seem to be asleep. In that dream, or whatever it was, a menacing being, male but inhuman, approached me, smelling like danger, wordlessly threatening death—Mark’s death. Terrified, I fought an impulse to turn and run, feeling that if I did, everything would be lost. Then I recalled something our dance teacher often had said: “Put weight in your feet, and stand.” When I did, the dark figure retreated. But then he came toward us a second time, even more frightening. Again I longed to run, but resisted, and managed to stand against him. Once again he retreated, only to return a third time, more terrifying than ever. Feeling that I could not possibly stand a moment longer, I spoke a name: “Jesus Christ!” At that, the dangerous being fled, and my fear dissolved. Now I felt certain that the surgery would go well.

  Later, shaken by that experience, I realized that, in extremity, terrified of losing our child in open-heart surgery, I’d called out a name I’d heard that afternoon during the singing: one stanza of Bach’s cantata speaks of how “our ancient foe,” the devil, “seeks to work us woe . . . on earth is not his equal.” Then Bach’s music builds chords suggesting triumph over harm and death: “one little word shall fell him.” In the dream I’d spoken names of Jesus, which Christians have invoked for millennia as words with power to exorcise danger and death. While not imagining that I’d actually seen the devil, I’d instinctively reached for these words when fearing for our son’s life.

  Early that morning, Heinz arrived, and we held Mark close as physicians injected him with a sedative, then strapped his small body onto a gurney and wheeled him away from us into the operating room. As we sat huddled together, holding hands, I told Heinz what I’d envisioned that night; the morning felt strangely peaceful. During those interminable hours of waiting, I sat down at a small table and wrote a note to Nelle Morton, telling her that I’d felt that she and other women somehow had been present with me the night before, in Mark’s hospital room.

  Finally one of the surgeons emerged to say that the surgery had gone well. They’d made the repair; now Mark was recovering in intensive care. We were allowed to go in and see him, caged in what looked like a glass incubator, but not to come close. Many hours later, when the staff finally allowed me in, his slight, thin body was pinned to a board in a dense complex of intravenous needles and monitoring cables. Ordered not to touch him, lest he risk infection, I softly spoke to him, so that he’d know I was there. Hearing my voice, he suddenly lurched his whole upper body toward me, ripping out the needles on one arm. At that, a nurse charged in, shouting, “Can’t you see you’re disturbing him? He’s got to rest; you can’t come in here!” Immediately I fled, shocked and weeping, blaming myself for having possibly harmed my child. I ran down the halls and dashed out into the street, heedless of traffic, feeling that I didn’t care if I were struck by a car, maybe even deserved to be.

  In retrospect, I began to sort out what had happened. In that terrible moment, I felt as if the nurse was right: I was guilty of causing Mark’s fragile, nearly desperate, condition. Only much later did I realize the truth: I’d rather feel guilty than helpless. For guilt, however painful, often masks a deeper agony, even more unbearable. Standing there, seeing Mark in intensive care, a huge scar on his thin chest where the physicians had cut it open, broken his breastbone, and stopped his heart to repair it, we were utterly helpless—helpless to do anything at all about what mattered more than our own lives.

  Slowly, during the days that followed, although the hospital staff would not yet let us touch or hold him, Mark began to take in nourishment, regain some strength. Finally the days and nights, previously indistinguishable, began to take shape again. By the fourth day, realizing that he was getting better, I finally allowed myself to sleep at home for several hours at a time. Heinz and I took turns staying at the hospital, sometimes asking Jean Da Silva to stay with him while we took a break. Stopping by the apartment to change clothes, I found a note from Nelle Morton, sent while my note was still on its way to her. She wrote to tell me that on the night before Mark’s surgery, she and the women in her “sister circle” had met, sitting on the floor of her living room in California, to pray for us.

  On the fifth day, while Mark was still in the hospital, a well-meaning older friend, noting my exhaustion, said, “Dear, you look like a professor; you’ve got to take care of yourself! If you didn’t have to work, would you still teach?” Since she’d never had a profession, her question surprised me, and I said, “Of course not, not now!” That afternoon, when I went back to the apartment to take a shower and change clothes, Jean, who arrived carrying brown paper bags full of groceries, said, “You had a phone call; it sounded important.” He’d called twice, “a Mr. MacArthur from some foundation. He said please call him back right away.” Before leaving for the hospital, I returned the call. Answering, he said, “Congratulations”—for what? He identified himself as Rod MacArthur, calling in person to tell me that I’d received a fellowship from his foundation. “How can that be, since I haven’t applied for any?” He explained that no one can apply for what outsiders call the “genius grant”; instead, recipients are nominated without their knowledge, on the basis of their creative work. Now I recalled that I’d heard something about these; that, as he explained, the foundation offered five years of complete support—no applications, no requirements, no reports, no questions asked. Stunned, I called Heinz, who asked, “Is this a joke? Is this true?” I dived into a taxi and went back to the hospital to be with Mark. The following morning, Heinz called to tell me that a press release had announced the award in the New York Times.

  On the tenth day after surgery, the physicians allowed us to sign Mark out of the hospital and carry him home, wrapped in his favorite blanket. Although thin and pale, his skin almost translucent, he beamed with delight to be back. Heinz stretched out on the living room floor with him as they began to build New York City out of bright cardboard bricks, and to put down wooden tracks for a set of trains. One day, shortly after he came home, while I was holding him in the rocking chair and singing, as I often did, his usual curious and happy equilibrium shattered. He loved our songs, but when I began to sing “Ezekiel saw the wheel / Way up in the middle of the air,” he suddenly looked at the ceiling, terrified. Immediately I felt I knew what it was—the bright circles of light on the ceiling of the operating room—and guessed that during those long hours of surgery, there may have been moments when, to some extent, the anesthesia had worn off, when he may have seen lights like that. I never sang that song to him again, and the episode passed.

  Our lives began to resume their normal rhythm, far easier now that the surgery was behind us; and the MacArthur Fellowship, like a miracle, offered what now I longed for most: time. As a beginning assistant professor at Barnard, besides teaching full time, I’d had to take on administrative work, writing budgets and reports as acting chair for our tiny department. The dean and the president of Barnard, astonished that one of their untenured, virtually unknown faculty members had received such an honor, called me into the dean’s office to congratulate me. “What do you want from us,” they asked, “since they’re offering to pay your full salary for five years?” “Time to be home with our son,” I replied, “and to think and write, in an office without a phone!”

  After the controversy that followed the publication of The Gnostic Gospels, the grant came not only as a gift of time and energy, but also as an enormous vote of confidence. Hugely grateful, I was able to be with Mark as he grew strong again; the doctors were pleased that the heart repair had succeeded. Whenever I could find a spare hour while Jean was with us, I went to a tiny maid’s room in the concrete basement of a friends’ apartment building that served as my study to read and write. But just as my book on the Gnostic gospel was receiving recognition that surprised us both, Heinz was dealing with an unexpected setback. Before he’d arrived in New York, he’d received two offers of facult
y positions: one at Columbia, the other at Rockefeller University. He chose Rockefeller, especially since the senior physicist who chaired the department enthusiastically promised to support his promotion to tenure. When the time came, though, other colleagues told Heinz that the chairman had broken his promise. Hearing what happened, I was distressed to see him so upset, and concerned that the disparity between our careers at that moment might divide us. When we talked about it at length, I anxiously tried to suggest what I thought might help, until he said simply, “You can’t solve this, and you don’t have to try: I just need you to listen.” Publicly, he dealt with professional disappointment with equanimity that earned his colleagues’ respect; privately, I was moved by his grace under pressure.

  That spring, though, we had a marital head-on collision. When we took Mark to his pediatric cardiologist for a checkup, she asked, “What are your plans for the summer?” Excited, we told her that we were going to Colorado, where physicists met from all over the world at the Center for Physics, a series of simple wooden offices, shaded with aspens and pines, within sight of the high mountains. We were eager to return to what felt like a normal life in Colorado, where we’d often hiked on Saturdays, walking up dirt trails through forests of aspen and pine, up to boulder fields and high mountain lakes, sometimes camping out, sleeping bags unrolled by a campfire, watching the brilliant stars until we fell asleep. During the week, when the physicists weren’t writing equations on a blackboard or standing around the coffee maker talking about particles and galaxies, they were often bicycling up mountain roads or planning the next hike up some mountain pass, walking through snow patches among the wildflowers.

  Hearing this, Mark’s doctor said nothing. Then she told us to come back the following week, and ordered her colleagues to meet with us. As we sat in one of the identical green consulting rooms at the hospital, the doctors’ message was clear: “We strongly advise you not to take this child to high altitude. Right now he’s doing fine. But you need to know that there is a slight chance that in his condition, he might develop pulmonary hypertension—a lung disease, invariably fatal—if exposed to the stress of breathing at high altitude.” “What are you calling a ‘slight chance’?” Heinz asked. “About one in ten thousand.”

  When we walked outside, shocked, and drove downtown, at first we were silent. Then Heinz said, “One chance in ten thousand? That’s ridiculous—more likely we’d be run over by a truck.” As we talked it over later, we could not agree. “If there’s any chance that something we do could cause him harm, we can’t take that chance,” I said, “or, at least, I can’t.” At first I assumed that he was simply being stubborn about what he wanted to do, despite the risk; he insisted I was overcautious. As we struggled through these conversations, I began to see that he could not bear to imagine that our son really could be at risk again, so deeply did he long to believe that Mark was well. After three weeks of painful conflict, we resolved it: Mark and I would fly to California and meet friends there, while Heinz would go to Colorado for two weeks, then join us in the cabin in the redwoods for the rest of the summer.

  Returning to the Santa Cruz mountains in California, Mark and I breathed in the smell of the woods, and the horses ran to greet us. This time we’d brought along Mark’s African gray parrot, and discovered that he loved to sit outside in the apple tree in front of the cabin, conversing with the local birds; then he’d hop onto our shoulders as we carried him back inside. When Heinz arrived, we drove to the ocean every afternoon. Even when the weather was cold and windy, father and son would dig in the sand, building sandcastles with moats and walls, until we’d shake off the sand and drive back to the cabin to make dinner. There we’d set a fire in the fireplace to talk and tell stories until it got dark, then climb up to the sleeping loft and fall asleep, listening to the counterpoint percussion of the frogs and crickets. On sunnier days, we’d walk to the boardwalk for popcorn or cotton candy, to ride on the merry-go-round, the bumper cars, and the Ferris wheel. For a couple of hours each morning, Rebekah Edwards, a quiet, generous young writer whom Mark loved, would come to spend time with him while Heinz sat at the table in the cabin doing physics. Behind the cabin, in the tack house, the walls hung with saddles and bridles, I would read and write during those morning hours, at a table I’d set up looking at the creek outside the window.

  One evening, when a friend came to dinner at the cabin, he turned the conversation to ask when children start to talk. I turned to Mark, then one and a half, and asked, “Mark, why don’t you talk yet?” As we expected, he said nothing. But later that evening, while I was giving him a bath, and he was maneuvering plastic boats and small floating dinosaurs, he suddenly stopped, looked at me, and said, “I don’t want to talk yet.” Astonished, since I’d never heard him speak a complete sentence, I burst out laughing, then sang him a song from the Mikado, about a bird that didn’t want to talk; then said, “Well then, Mark, just talk when you’re ready.” When I told Heinz about it, he said that he himself had hardly spoken at all until he was three, since he’d been so fascinated with what was going on in his mind that he felt that putting it into words would mean cramming far too much into inadequate vessels. Mark’s mind, like his, was far less verbal than visual and spatial.

  Back in New York, Mark loved our excursions to Central Park, where we met other children in the playground, digging in the sand, running to the swings, and climbing the slides, watching the squirrels and dogs. Mark and I claimed as “our tree” a stout oak tree in Central Park with branches that we could climb together. Sitting among the leaves and talking, or arranging the rocks below to make paths, we spent countless hours in our secret garden, our outdoor “house.” But that spring, when he was two and a half, he surprised me by asking, “Where’s my school?” Your school—you’re only two! I thought. Startled, I wondered how he had realized, while I hadn’t, that next fall the park would be empty of children his age, since they’d all be in nursery school. So after scrambling to find out about such schools, we finally found one upstairs in the Park Avenue Methodist Church. There, in the fall, he met Bram, who became his best friend—his best child friend, he told me, since Rebekah, in California, was his best grown-up friend. Every morning he eagerly anticipated going to his “school,” which initiated a round of children’s birthday parties, Halloween, Thanksgiving, and Christmas at his grandmother’s house, which brought a new red tricycle. Although Mark was always thin, his chest marked by the surgical scar, he was active and curious, and loved riding his tricycle on the paths through the park, or riding on Heinz’s shoulders during our weekend adventures in New York.

  That spring, his cardiologist, who routinely checked the results of the surgery, ordered a cardiac catheterization, about a one-hour procedure. After we checked into Babies Hospital, they injected a sedative and wheeled him away, while we sat in the waiting room. After one hour passed, then two, then four, someone emerged to tell us that they’d had to repeat the procedure, since they’d gotten a false result. That day felt endless, wearing us down with worry and exhaustion. In the evening, nine hours after they started, several doctors emerged, without speaking, and a nurse summoned us to sit down with them in a conference room. “We couldn’t believe it,” they said. “We thought the result must be wrong. We kept doing it over and over, hoping for a different result. The surgical repair was fine; we thought he was well; but we keep getting the same result. Your son has a very rare disease: pulmonary hypertension, invariably fatal.”

  We sat silent, in shock. Finally we asked, “What does that mean? What do you recommend?”

  “We’re sorry. There’s no treatment, no cure. Short of a heart-lung transplant, that is—now only in experimental stages, medically inadvisable, especially for a child.”

  Invariably fatal. I remember nothing else that was said, until finally I asked, “How long?”

  “We don’t know; a few months, maybe a few years.”

  The following day, a team of doctors urged us to authorize a lung biopsy.
They explained that they’d take a slice of the lung, which would require another incision: “Here are the papers; just sign these to give your permission.”

  “How could that help?” I asked.

  “It can’t help with the prognosis,” they said, “but the procedure will show us how far the disease has progressed.”

  Mark was already starkly pale, exhausted from the previous day’s ordeal. Holding him, I felt certain that if more masked strangers poked needles and knives into him in an operating room, he might lose heart—literally—and die. Were the physicians now seeing him as an experimental subject to be opened up so that they might gather statistics for research papers they would publish in the New England Journal of Medicine? “No,” I said; “we’re going home.” We refused to sign, gathered Peter Rabbit and Mark’s blanket, and carried him home.

  We resumed what looked like normal life, in a universe irrevocably changed. Mark regained his energy, eagerly returning to school, where he and his best friend, Bram, invented elaborate games involving ongoing stories known only to the two of them, building tunnels and cities with blocks, climbing in the playground on the roof. In another year punctuated with children’s birthday parties, Mark was excited to begin karate, learning to stand, kick, and fight. These lessons engaged him with his favorite program on television—an animated cartoon series featuring the young Prince Adam, who, in crisis, turned into the mighty fighter He-Man, Master of the Universe. Like his older cousin Superman, He-Man managed astonishing feats to rescue people from Skeletor, the evil villain who sought to dominate and destroy the whole world. Watching with him, I wondered, Did these television writers raid Gnostic mythology to create these characters, or did they spontaneously reinvent them? Mark reveled in these stories, seeing himself living in them, as I’d lived in Oz, and as evangelical Christians I’d known saw themselves contending with the power of God and Satan. Once, standing on a redwood stump in California, Mark struck a karate pose, and told me, “I came here to fight”—understanding, I felt, that he was, indeed, fighting against death for the vivid flame of his young life.