by Geeta Anand
Barbara wondered what was next for her John. She had never known someone as driven, intense, and emotional. Fellow freshmen at Georgetown University nicknamed him “Admiral,” a reference both to his leadership potential and the Navy ROTC uniform he wore even to class. At Harvard, his study group mates teasingly called him “Senator Crowley,” because of his oratory skills, confidence, and popularity. At Georgetown and Notre Dame, he had studied hard but socialized little and made few friends. But at Harvard Business School, he seemed to have found a new equilibrium. He stayed out late drinking with his classmates on Thursday nights and many weekends, thrived on the business strategy debates, and parlayed his wit into the role of his section’s MC. Every Friday, he presided over an awards ceremony he had initiated at his section pizza party. He gave out what he called the Top Ten “Master of the Obvious” awards for classmates who said, well, the most obvious things as they vied for good grades in classroom participation. He had a way of poking fun at people without humiliating them. The highlight was his presentation of the Kiss-Ass of the Week award, which he even gave to himself once.3
For his part, John hadn’t quite figured out what to do next, except that he knew he needed to begin to pay off $140,000 in education debt he had amassed in one undergraduate and two graduate schools. He had decided to start postgraduate life in the highest paying job he could get—as a management consultant—and begin paying off the massive loans. He hoped he and Aileen would have more children. They had arrived at business school in 1995 with only year-old John Jr., but John came home from a study group one night a year later to find the kitchen light on and a pregnancy test with two pink bars highlighted on the counter. Aileen emerged from the bedroom, a shy smile on her face.
When the baby was born—a beautiful, healthy girl—John had been delighted to see that she looked so much like him and his Italian relatives. “My Italian princess,” John cooed at the puffy, red-faced baby with a mop of dark hair. John Jr., blue eyed and blond, resembled his late father’s Irish-American side.
Onstage, John’s speech had turned passionate. Gone were the one-liners as he urged his classmates to use the power of their business degrees in the service of others. “By virtue of our Harvard MBAs and our own talents and ambition, many of us will achieve greatness,” he said. “Use it to combat disease, to fight racism, to promote the entrepreneurial spirit in your own countries, and use it especially in our position as global business leaders, to ensure the prosperity and survival not just of capitalism around the world but of ‘democratic capitalism.’ ”
Evoking the words of a former president, John said, “As John Kennedy said, ‘When one man is enslaved, all cannot truly be free.’ ”
Barbara thought proudly that the hours her son had spent practicing his grammar school presentations in front of the mirror in his bedroom were helping him now. He’d filled the bookshelves in their split-level ranch with the speeches of Martin Luther King Jr., Robert Kennedy, President John F. Kennedy, and other great orators. He had memorized passages from Kennedy’s inaugural speech, Abraham Lincoln’s second inaugural address, and Dr. King’s “I Have A Dream” speech.
Today, John looked on top of the world. With his straight nose, high cheekbones, and dazzling smile, he looked to Barbara like a movie star. He carried his muscular frame like a soldier, commanding the attention of those around him despite his short stature. “He has the wife, the kids, the education, the motivation, the personality, the looks—he has it all,” she thought to herself. She smiled as the audience broke into enthusiastic applause and John returned to his seat onstage, smiling.
It was a Harvard tradition for graduates to bring their children onto the stage when they accepted their diplomas at the graduation ceremony the following day. John carried Megan, in a white dress and bonnet, in his left arm, and John Jr., in his double-breasted navy sport coat, in his right arm. John’s name was among the first to be called, and his classmates cheered as he climbed the steps and shook the hand of Dean Kim Clark. Then he went over to Nancy Koehn, the faculty representative for his section, who was standing beside a box of teddy bears in Harvard T-shirts. She handed Megan and John Jr. each a bear, and their dad turned and smiled into the camera.
As he slowly began to climb down the steps from the stage, Megan suddenly collapsed backward, arms flailing. The crowd gasped as John lunged to his left, then let out a collective sigh of relief as he managed to grab her while still hanging on to his son and his diploma. Safely on the ground beside the stage, he handed her to Aileen, who straightened her white bonnet and bounced her until she was smiling and gurgling again.
Nobody knew it then, but it was the first sign that something was wrong with his little girl.
2
Trouble
Winter 1997–Spring 1998
Walnut Creek, California
In early November, John and Aileen buckled the children into their car seats and pulled out of their driveway in Walnut Creek, California, heading to the pediatrician’s office. They’d moved here the summer after John’s graduation from Harvard so he could take a job at a financial consulting firm, Marakon Associates, in San Francisco. About twenty miles east of San Francisco, Walnut Creek was picturesque and lively, with tree-lined streets downtown and a fancy outdoor mall with a Nordstrom and Baby Gap.
For John, work was grueling. At Harvard, he’d avoided spreadsheets, nudging case studies heavy on analytics on others in his study group. He’d known Marakon would require financial analysis, but he’d taken the job anyway, convinced he could figure out anything if he had to. The job offered the largest signing bonus of any of the companies recruiting at Harvard Business School that year—$60,000, plus the $90,000 base salary. He and Aileen had charged much of their living expenses during business school on their credit cards. They now owed $40,000 to credit card companies, in addition to John’s $140,000 in student loans. John planned to stay at Marakon for a year or two and pay off a big chunk of his debts. Ever an optimist, John was even more so now that he had a Harvard Business School degree. The financial security that neither he nor anyone in his family had ever known now seemed within reach.
The couple had rented a tan, four-bedroom ranch with a large backyard fenced in by rose-covered trellises. The yard looked up at the tree-lined Mount Diablo only a few miles away. At night, they could hear coyotes howling in the distance on the mountain.
Aileen had discovered she was pregnant with their third child a week after John’s graduation, and she was growing heavier and more tired. She adored children, and she and John had dreamed of having five—just not quite so quickly. But Aileen was as casual about taking her birth control pills as she was about picking up and moving across the country, and both Megan and this latest pregnancy were not planned. The new baby was due in four months, in early March.
Little John Jr. and Megan were challenging in different ways. John Jr. never stopped moving. Megan was calmer, but it seemed she had inherited her father’s stubbornness. If she wanted a toy just out of reach, she screamed until someone (usually Aileen) got up and brought it to her. At the time, the family joked that Megan had inherited John’s Type A personality. The big yard and warm weather helped keep the kids busy. When John Jr. came home from the Pied Piper preschool, Aileen put both children in the backyard, Megan in her walker and little John in his mini toy car. He would eventually tire of the car, and then Aileen would use the overgrown vegetable garden for entertainment. She’d pile rotten tomatoes into the back of the toy car, and she and her son took turns pitching them over the backyard fence.
Almost every day, Aileen took the children to the shopping mall. Shopping was entertainment for Aileen, and it showed in her children’s neat, fresh appearances. She grazed, buying only a well-chosen thing or two at a time, comparison shopping with a vengeance to stay within budget. Her children were almost always the best dressed. She had waited until the embroidered Mermaid denim jackets at the Gap were on sale before pouncing. Now Megan wore the jacket every
day over her floral dresses. Like his dad, little John dressed in a uniform of khakis and blue sweaters. With every hair combed into place, the son looked almost comically like his father, save for the difference in coloring. After the mall, they’d often head over to the neighborhood park, where the sandbox kept the little boy entertained for hours, and Aileen could push Megan on the swings. Every once in a while, Aileen would sink into the grass and sit still for a minute or two, thinking that as much as this life was tiring, it brimmed with beauty and possibility.
Walnut Creek even had its own fall festival, for which John had made a special effort to be home for the weekend. He’d danced in the parade, holding Megan, wearing an ivory sweater with bright, embroidered flowers over her first pair of blue jeans, waving and shouting with laughter. They put their son on any ride he was not scared to try, some beyond his years.
In their first couple of weeks in Walnut Creek, Aileen and John had taken the children for the obligatory trip to a young pediatrician in town named Dr. Montgomery Kong. The children had been healthy. Megan had had her share of colds and bronchitis in her first few months of life, but the California weather seemed to suit her. She hadn’t been sick since they’d moved in August. The couple had told Kong that they were a little worried that John Jr., two and a half, wasn’t yet talking, and Megan, eight months old, didn’t crawl or pull up. The doctor had seen no reason for concern, but he told them to come back if the children didn’t make progress in a few months.
Now it was November, and Megan still wasn’t crawling and John Jr. still wasn’t talking. Suppressing her worry, Aileen made another appointment.
Perched side by side in only their diapers, John Jr. and Megan sat on the padded exam table in Dr. Kong’s bright, cheerful office. John stood in front of the table so that Aileen, now five months pregnant, could rest in a corner chair.1
John looked at his watch. They’d been waiting fifteen minutes in the exam room, and Aileen looked pale and drained. He looked in mock disapproval at his children, his hands locked firmly on his hips. “If there were two things I thought my children would be good at it would be public speaking,” he said, shaking his head at his son, “and upper body strength,” tapping his daughter on the head. “You two are very disappointing.” He winked broadly at Aileen. At thirty, John kept his muscular bearing by doing push-ups and pull-ups every morning before work. Hearing the grunting, Aileen, who rarely exercised for two consecutive days, would roll over in bed, shake her head, and mumble, “Why?” before slipping back to sleep. Now she giggled, and the children grinned up at him.
Kong walked in just then, catching the end of the family joke and joining in the laughter. He was a tall man with a genial manner. He listened as John and Aileen took turns explaining their concerns. “I can’t understand one thing he’s saying,” John said, “and he’s going to be three next month.”
Kong looked in the boy’s ears and throat for any signs of infection. He took his temperature, and found it to be normal. “Does your son understand what you’re saying?”
“He understands everything,” Aileen replied. “And he says a lot of things. We just have no idea—well, no idea what they mean.”
“He’s probably just a delayed speaker,” Kong reassured them, “but I’ll write you a referral for speech therapy. Let’s try that first and see if it works.”
Then the doctor turned to Megan. “And she’s still not crawling yet?”
“She’s reaching for everything she can, but she’s not even trying to crawl,” John said.
Kong laid Megan on her back, and pulled and pushed on her arms and legs as he did the basic pediatric exam. He didn’t seem to find anything wrong. “Just to be sure, I’m going to give you a referral to a neurologist,” he said. “He gave them a name and number, and told them to call and make an appointment.”
Satisfied that their concerns were being addressed, John and Aileen thanked him, dressed the children, and drove home.
Aileen, not given to worry, focused on the tasks at hand—taking John Jr. to preschool and to his weekly therapist appointments, Megan in tow. John presumed that Megan was just a late walker, much as John Jr. had been, but despite his optimistic nature, he found his mind continually returning to the question of what was wrong with his little boy. What if he had a serious speech problem? As a two-year-old, John himself had been an able speaker, his mother told him. He used to sit gaily by her side as she drove their old Chevrolet Impala, asking about so many things that her exasperation once got the better of her, and she’d stopped the car to demand, “Why do you ask so many questions?” Coached by his police officer dad, he could recite by memory the Miranda warnings at age two. “You have the right to remain silent,” he would tell his mother. For a child of his to have serious trouble speaking would be crushing.
The next month, John took a few days off around the holidays, and for the first time since he and Aileen had met as teenagers in high school, they prepared for Christmas without any in-laws. John paid particular attention to his son, taking him out to collect firewood and reading to him nightly. Then one evening, after reading the boy a Dr. Seuss story in bed, John turned to him with a warm smile and said, “You’re my buddy.”
Little John Jr. turned to his father, pulled out his pacifier, and said, “Buddy.” John read several more words before realizing he had just heard his son say his first word.
“Aileen, Aileen,” he shouted. She rushed in from the other room, carrying Megan. At his father’s prodding, the little boy looked at his mom, spread his lips into a four-toothed grin, and repeated “buddy” proudly.
The speech therapy had helped. The boy was finally beginning to talk. It was two days before Christmas, a wonderful present for the family.
Everything was fixable, as John had always thought. If his son could repeat one word, the little boy would eventually be able to talk normally. Megan, too, would probably start crawling any time now. A new baby was on its way. Everything would be fine.
John took a dollar bill out of his wallet, wrote the word “buddy” on it, and taped it up on the wall in his son’s room. On important occasions, John’s maternal grandparents had always given him money with written words on the bills commemorating the event. John still had the $10 bill his grandfather had given them for their wedding, inscribed with the words “Congratulations on John and Aileen’s wedding.” Aileen never understood the tradition. “It must be some Italian thing,” she laughed, shaking her head in bemusement.
That holiday season also brought Megan’s appointment with the pediatric neurologist at Oakland Children’s Hospital and Research Center, a half-hour away. In the exam room, Dr. Daniel Birnbaum, a slight, balding man with a quiet manner, listened as they described Megan’s inability to crawl or stand. He looked down at the chart they had filled out in the waiting room. “She’s eleven months old?” he asked. They nodded.2
Birnbaum put the little girl on her back. He began to poke and prod at Megan, testing her reflexes and contorting her limbs. He bent her legs and let go of them. They immediately fell to either side of her pelvis, lying flush with the table. He frowned and made a note in his records.
“See the way her legs rest in frog position,” he said. “That could indicate a myopathy.”
John and Aileen looked at each other, unsure what he meant, but certain that such an authoritative and medical sounding word was not good. “That just means there could be something wrong,” he said. His tone was reassuring, but still Aileen shivered slightly. “It could be something minor. We’ll need to do a blood test.” As Aileen held Megan on her lap, a nurse stuck her arm several times with a needle, searching for a vein, drawing wails along with the blood.
A few days later, the nurse left a message on their answering machine. Her voice was studiedly neutral, conveying nothing except the need for them to return the call. With Aileen standing beside him, John dialed the hospital. The nurse said Megan’s blood test had shown a high level of a certain enzyme, which suggested a pote
ntial problem. The doctor wanted to schedule a muscle biopsy, which, to their horror, the Crowleys learned was an operation performed under anesthesia in which a surgeon would make an incision in Megan’s leg and cut out a small piece of muscle.
“What was wrong with her blood test?” John asked.
“Megan had an elevated level of CPK,” the nurse said. It was yet another medical term John didn’t understand. He knew there was a reason he had hated all those science classes at the Naval Academy.
“What’s that?” he asked. There was an awful sinking feeling in his stomach as the unfamiliar medical words began to come out of the cream-colored earpiece.
“CPK is short for creatinine phosphokinase,” the nurse said. “It’s an enzyme normally found inside muscle cells. The large amount of it in her blood tells us her muscles are weak and something is wrong. Something is causing the fibers in her muscle to break down. We need to find out what it is.”
“What could that be?” John asked.
“There are several possibilities,” the nurse said crisply, her voice insistently professional, “but we won’t know for sure until we do the biopsy. Would February 12 work for you?”
“But what are the possibilities?” John persisted, pressing for answers like the trial lawyer he had been before business school.
“You really don’t need to think about the possibilities yet,” the nurse said. “There’s no way of knowing.”