“Do you have children?”
“No, we very much hope to, but it hasn’t happened yet.”
By the time my friend Mary Beth Edelson, an artist, asked me this question, my husband, Heinz, and I had been married for seven years, hoping, then longing, to be parents. We had been consulting with a fertility specialist for three years, and the painful treatments had created repeated cycles of hope and disappointment. When I told this to Mary Beth, she said, “Let’s do a ritual for you. I only did it once before, but it worked.”
I was surprised and embarrassed, but also intrigued. Mary Beth lived in downtown New York, in a large loft, creating rituals as performance art in which she invited the audience to participate. After reflecting on the offer, and discussing it with Heinz, who found it amusing, I realized I had nothing to lose. Some weeks later, feeling nervous, foolish, and excited, I arrived at Mary Beth’s loft with a few close friends, including the poet Sharon Olds. Mary Beth began by playing the sound of waves breaking on a beach, as we sat quietly, focussing on a large diorama. When the evening darkened, she lit candles and asked me to sit inside a large, hollow sculpture, shaped almost like a birth canal. Each participant, in turn, spoke about giving birth. During the final, intensely focussed moments of our gathering, a sentence formed in my mind, startling me: “You don’t have to do this; it does itself.”
Three weeks later, I discovered that I was pregnant. The following October, on the Sunday morning of the New York City Marathon, we drove to the hospital. We were ecstatic when our son Mark was born. That afternoon, when a nurse took him to do a few routine procedures, I felt ferociously protective. The next day, the hospital’s physicians, concerned about Mark’s heartbeat, ordered an echocardiogram. I sat in the back of the room while they examined the images. I couldn’t hear what they were saying but caught the tone: something was wrong.
When they finally called us into a conference room, they told us that Mark was born with a hole in one of the walls of his heart. Five years earlier, they said, a baby born with this condition invariably died. But, since then, one of their pediatric cardiologists had invented an operation to make a repair, placing into the heart a plastic patch, over which tissue could grow. Since operating on a newborn is especially risky, they advised us to delay open-heart surgery until his first birthday.
We were hugely relieved to leave the hospital, take Mark home, and resume a semblance of a normal life. Mark smiled easily and was growing. At first, he slept in a tiny carrying crib next to our bed, where I often woke to check on him, breastfeeding, holding him close. After six months, he was sleeping in his own bedroom under a mobile of stars. At the time, I was a professor of religion at Barnard, and we usually left the city when the spring semester ended. That summer, we rented a one-room log cabin in a redwood forest, in Santa Cruz. I remember Mark laughing often, especially when his father held him in his large hands. He was excited to learn to stand, first cruising around a low table, then holding on to my fingers with both hands, eager to see the horses grazing in a nearby meadow. In the afternoons, Heinz and I walked barefoot on the beach, stopping to pick up shells and disentangle seaweed from our ankles.
Below those idyllic days were currents of terror. When we returned to New York, in September, we prepared ourselves for Mark’s surgery, which was scheduled for later that fall. When the day came, we held Mark close as physicians injected him with a sedative, then strapped his small body onto a gurney and wheeled him into the operating room. After many hours, one of the surgeons emerged to say that everything had gone well; they’d made the repair. We went to see him in the intensive-care unit, where his slight body was pinned in a dense complex of intravenous needles. I had been ordered not to touch him, lest he risk infection, so I softly spoke to him. When he heard my voice, he lurched his whole upper body toward me, ripping out the needles on one arm. A nurse charged in, shouting, “Can’t you see you’re disturbing him? He’s got to rest; you can’t come in here!” I fled, weeping. I felt, in that moment, that the nurse was right—that I was guilty of causing Mark’s condition. Only much later did I realize the truth: that I’d rather feel guilty than helpless. Standing there, seeing Mark with a huge scar on his thin chest where the physicians had broken his breastbone, we were utterly helpless.
Slowly, during the days that followed, Mark began to take in nourishment, regain some strength. The days and nights, previously indistinguishable, began to take shape again. 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 pale, he beamed with delight to be back. Heinz stretched out on the living-room floor with him, and they began to build New York City out of bright cardboard bricks.
The spring after Mark’s second birthday, Mark’s cardiologist, who routinely checked the results of the surgery, ordered a cardiac catheterization. The procedure was supposed to take an hour. Nine hours later, the doctors emerged, silent. A nurse summoned us to a conference room. “We couldn’t believe it,” one of the doctors said. “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.”
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.”
We resumed life in a universe irrevocably changed. Mark regained his energy, eagerly returning to preschool, where he and his best friend invented elaborate games involving stories known only to the two of them. Mark was excited to begin karate, learning to stand, kick, fight. Mercifully, his illness was invisible. He was thin, but otherwise he looked and acted like other children. When he was three and a half, we made the rounds of interviews for kindergarten. Since Mark’s pediatrician knew the local schools, 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.”
Every morning that year looked gray when I woke up. I knew no one whose child had died, and I felt desperately alone. Even the ancients, who so often experienced the death of their children, called it “the unbearable grief.” 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 speaking with the compassionate, incisive man he recommended, I struggled with my powerlessness, which spurred an intense interest in magic. I felt I’d give anything to know how to do it—a spell, a cure, a bargain with invisible powers. How could we go on living, having no control over what mattered most?