Mary Alice Cisneros pulled her Jeep Cherokee into a parking lot in downtown San Antonio and scanned the crowd of teenagers emerging from a school bus with unseasonably studious looks on their faces. Although it was a hot July day, the kids had just come from class: an eight-week college-level course meant to prepare them for distant careers in math, engineering, and science.
After a few moments, Mary Alice's son, John Paul, crossed the lot and greeted her with good news. "I made 105 on the egg project," he said. John Paul was supposed to build a box in which an egg could withstand being dropped four stories. And, amazingly, the box worked.
"But how could you get 105, not just 100?" Mary Alice asked.
"I don't know, Mom," he replied. "I suppose it's rare for the egg to survive the drop. What can I say?"
Like the egg, John Paul is miraculously intact, and he's busily planning his life with that knowledge. At fourteen, he is at that wonderful phase between childhood and adolescence, before boys begin to resist their mother's fawning. He is of medium height and build and has dark eyes, an angular head with close-cropped hair, and fine features. But the thing you notice most about him is the matter-of-fact way he talks about his brushes with death.
"I can't remember not knowing that I was born with a heart defect," he tells me. "I've never really worried about it too much. Everybody dies at some point. I just knew that I might die early. But I didn't die. And now my heart is well enough. I'm fixed."
That said, the hole in the center of his body remains the primary window through which he and his family view the world. The night before, John Paul and his father, former San Antonio mayor Henry Cisneros, spent an hour sitting at the kitchen table of their home on the West Side, talking about Aldous Huxley's Brave New World. To Henry, the message of the novel was that the notion of utopia—a place where crime, poverty, and disease are wiped out—is a nightmare. "In such a world, individuals outside the norm—in other words, people born with heart defects—are diminished," he told John Paul. "In that kind of world, individuals don't count."
Not so, John Paul countered: "In such a world, my defect would have been corrected by scientists before I was even born. But the novel is about how stability crushes creativity."
Yet as his parents have learned the hard way in the past fourteen years, stability is an illusion, and the world requires more bravery than they ever imagined.
A few hours after John Paul was born, on June 10, 1987, doctors informed his father that the five-pound, fourteen-ounce infant had four major birth defects. At that moment, he became a major character in the ever-evolving Cisneros drama.
Henry's rise and fall has been likened to everything from Shakespearean drama to Greek tragedy. The more apt frame of reference, however, is Mexican American. In the map of his imagination, Henry is pulled in two directions: north to America, where intelligence and hard work are rewarded and there are no limits to success; and south to Mexico, a land of perpetual defeats and unfulfilled fantasies.
Part of the story unfolded in the public arena, as Henry struggled to deal with the fallout from a six-year, $15 million federal investigation into his now-infamous affair with his chief fundraiser, Linda Medlar, and whether he'd told the FBI the truth about it. (Although Henry paid a fine of $10,000 and pleaded guilty to one misdemeanor count of lying, and although Bill Clinton pardoned him, the special prosecutor has yet to close the case.) Offstage, however, is where the decisive elements of the plot played out: in hospital corridors in San Antonio, Washington, D.C., and Philadelphia, where he and Mary Alice were forced to rely on each other, and medical science, to save their son. "Everyone thought the great crisis in my life was the loss of my political standing," Henry says. "The real crisis was always John Paul. He has been the centering force in my life and in Mary Alice's life. Frankly, it took something as big as his problems to remind me of what's really important."
"It had been a very difficult pregnancy," recalls Mary Alice, who was 37 at the time. The amniocentesis indicated she was carrying a healthy boy. But in the thirtieth week, she began to bleed, and her doctor sent her to bed. Six and a half weeks later, she started bleeding heavily and having contractions. She was taken by ambulance to Methodist Hospital, where her son was delivered by cesarean section one month early, on the day before his father turned 40. Henry and their daughters, Teresa and Mercedes, were in the delivery room. A few hours later, he addressed reporters and announced the boy's name just in time for the ten o'clock news: John Paul Anthony Cisneros ("John Paul" for the pope, who was coming to San Antonio in a few months, and "Anthony" for the city's namesake saint).
After talking to the press, Henry met with a group of doctors in a conference room. They told him that there was something seriously wrong with John Paul's heart, that he did not have a spleen, that his stomach was inverted, and that other organs were out of place. "All I remember is that their language was so oblique," Henry says. Finally he came to understand that at some age, John Paul's heart would be unable to meet the demands of his body. It was long after midnight when he left the hospital. The night was as dark as any in his memory.
The next morning Henry returned to the hospital and told Mary Alice about John Paul's heart defect. She turned her face to her pillow and began to cry. "Let me rest," she said. Later that day they went to the neonatal