Chapter One

FROM THE FEAST OF AGAPE TO THE NICENE CREED

On a bright Sunday morning in February, shivering in a T-shirt and running shorts, I stepped into the vaulted stone vestibule of the Church of the Heavenly Rest in New York to catch my breath and warm up. Since I had not been in church for a long time, I was startled by my response to the worship in progress——the soaring harmonies of the choir singing with the congregation; and the priest, a woman in bright gold and white vestments, proclaiming the prayers in a clear, resonant voice. As I stood watching, a thought came to me: Here is a family that knows how to face death.

That morning I had gone for an early morning run while my husband and two-and-a-half-year-old son were still sleeping. The previous night I had been sleepless with fear and worry. Two days before, a team of doctors at Babies Hospital, Columbia Presbyterian Medical Center, had performed a routine checkup on our son, Mark, a year and six months after his successful open-heart surgery. The physicians were shocked to find evidence of a rare lung disease. Disbelieving the results, they tested further for six hours before they finally called us in to say that Mark had pulmonary hypertension, an invariably fatal disease, they told us. How much time? I asked. “We don’t know; a few months, a few years.”

The following day, a team of doctors urged us to authorize a lung biopsy, a painful and invasive procedure. How could this help? It couldn’t, they explained; but the procedure would let them see how far the disease had progressed. Mark was already exhausted by the previous day’s ordeal. Holding him, I felt that if more