It’s Different When It’s Your Mother

Volume 17

Dec 14

The following excerpt is the second chapter of Lieblich’s memoir in progress.
The first can be found here: www.arrowsmithpress.com/came-back
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When I met Henry as a six-month old on my first trip to Guatemala in 1993, I had no idea whether the listless baby with a tuft of black hair and crossed eyes would ever see his first birthday. Henry was one of thousands of Guatemalans born each year with spina bifida, an opening in the spinal canal that can result in water on the brain, paralysis, incontinence and developmental delays. His parents, Irma and Flavio, could have opted not to treat him. Instead, they insisted doctors in the public hospital operate to close his spine.

“The priest wanted us to let him die,” Irma told me for the second or third time. “But we wouldn’t let him die.”

It’s no surprise that Princeton University bioethicist and animal rights advocate, Peter Singer, used spina bifida as an example when he argued that parents should be allowed to euthanize severely disabled infants. In Practical Ethics, Singer wrote that because human beings are not born self-aware, “they are not persons. … The life of a newborn is of less value than the life of a pig, a dog or chimpanzee.”

Singer wasn’t arguing that such babies should be euthanized, just that parents have a choice. These children were bound to suffer, he reasoned, and could overwhelm parents with few resources.

I felt some sympathy for his position when I spent several hours at one of Mother Teresa’s homes for the poor in Calcutta during a trip to India and was horrified to see row after row of disabled people warehoused in cribs.

Still, when I held six-month-old Henry in my arms, I wondered how Singer or anyone else could give up on a living, breathing child who might one day know joy and a sense of purpose or even the fleeting moments of satisfaction with which most of us make do.

During my second visit to San Antonio Aguas Calientes a few months later, Irma and I decided to look for a doctor at Obras Sociales del Santo Hermano Pedro, a Catholic hospital for the indigent in Antigua run by the Franciscan Brothers. A Canadian friend who had worked there called it “the bed and breakfast” because it housed disabled patients without offering much rehabilitation. But many of its doctors and nurses, he said, were devoted to children.

Early one Monday morning, Flavio; Henry’s sister and brother, Lusvin and Kendy; Irma and I packed up lunches and headed for Hermano Pedro. It was a family adventure and everyone dressed for the outing. Irma wore her prettiest white cotton blouse with frills on the sleeves and the traditional Maya skirt. She was energized with a new sense of purpose, the rightness of a mother and godmother joining forces to find an especialista for her boy.

Kendy had on a miniature version of her mother’s clothes, with a skirt wrapped several times around her thin body with a pink woven sash. Flavio and the boys wore jeans and T-shirts. He looked gaunt and exhausted from another bender and yet determined to do right by his son.

We walked along the cobblestone streets of Antigua, stopping only to let Lusvin and Kendy squat and pee by the side of the road, to an imposing yellow and white hospital attached to a colonial church with columns. Inside, the slippery terra cotta floors were immaculate. We registered at the massive carved wood front desk and took our seat on a bench. In cases lining the hallways statues of saints looked down lovingly upon us.

My Canadian friend had told me the story of Hermano Pedro de San Jose Betancur, a 17th-century Franciscan monk, later declared a saint, who used to walk the streets of Antigua in the middle of the night ringing a bell and imploring the wealthy to pray for souls in purgatory and give alms to the poor.

Families sat beside us, like Hermano Pedro’s souls lingering in purgatory. Minutes turned into hours while children ran up and down the halls. I had become used to waiting in Guatemala, falling into a rhythm of sitting, breathing deeply and standing. Flavio paced anxiously, like a man who would have checked his watch often if he had one. Irma sat with quiet dignity, her head held high, her baby close to her chest. Waiting was the price of possibility. It might be today or tomorrow. But a doctor would finally see her son.

To break up the hours I took Kendy and Lusvin to a corner store to buy them juice in paper cartons. In 1994 this was risky as every newspaper ran front-page stories of gringos who kidnapped babies to murder them and harvest their organs for white children in the United States. It was a fact that that Guatemalan babies were being robbed from hospitals and taken from homes under fraudulent circumstances and sold internationally, sometimes by people with ties to the Guatemalan government. (This would lead to a ban on international adoptions in 2008.) . But while we know many Americans adopted Guatemalan babies, no tangible evidence emerged that Americans stole them to harvest organs.

Still, even educated Guatemalans spoke of bands of tourists descending on the country like locusts to abscond with body parts, and foreigners had been attacked by mobs. I had been warned not to so much as look children in the eye, let alone go for a stroll.

At two in the afternoon, a nurse called us into the office of one of the doctors, a small man with glasses who asked Irma to put Henry on the examining table. He sat calmly while the doctor ran his fingers across the boy’s spine while he gazed into the distance. The doctor asked Flavio what procedures the doctors had performed. But the family had no X-rays or written records. No one knew what the surgeon had done.

The doctor prescribed a regimen of physical therapy at Hermano Pedro, so for the rest of my month’s stay in Antigua, Irma and I traveled three days a week to the hospital with Kendy and Lusvin in tow.

The physical therapy room looked like a grade school all-purpose room decorated with construction paper. Adults and children on crutches and in wheelchairs roamed aimlessly waiting for the physical therapists to call their names.

I greeted the children who had gathered in the center of the room. A blind child, who looked about ten, lay on his stomach, seemingly impervious to the activity all around him. He was one of the resident patients, a nun told me, who lived in a ward for children on the premises. I sat down beside him and touched his shoulder. He threw his arms around my waist and slithered up my torso until we were in a full body hug. I could feel his heart beat as he held on tight, loosening his grip only when a nurse came and plied him from my body.

I was stunned, but Irma looked on approvingly as if to say it was good to reach out to a child who needed to be touched and for me to feel the warmth of a boy’s embrace.

A physical therapist strapped Henry’s arms and legs to a seesawing wooden plank that looked like it belonged in a dungeon. If Irma was scared, she didn’t show it. Her child was getting attention from men in white coats. He would get better. She was sure of it. And her certainty lessened my fear as her boy rocked back and forth.

I was pleased to see Henry getting plumper during each successive visit, but for Irma that meant being stuck in the house and carrying around a toddler who strained her narrow back. In the United States, spina bifida specialists recommend that patients have a team of neurosurgeons, urologists, physical and occupational therapists and social workers. Henry had Irma, Flavio when he was sober, a godmother who came twice a year and two devoted siblings who, when he was about three, took turns taking Henry to the outhouse when he nudged them on the shoulder.

He was about four when John Bell entered our lives, perhaps the real answer to Irma’s prayers to Our Lady of Guadalupe. Tall and lanky with blue eyes and blond hair framing a chiseled face and square chin, he looked like he would be more at home in a Connecticut yacht club than the streets of Antigua. He was actually a preacher’s kid from a small town in Rhode Island who had a master’s degree in special education. He had visited Guatemala to study Spanish and been awed by the volcanoes and appalled by the lack of care the disabled received. So he cashed out his bank count and maxed out his credit cards to rent a house on the outskirts of Antigua and brought several disabled boys to live with him, including gunshot victims and survivors of polio — contracted after the vaccine was available in Guatemala. John tended to wounds, arranged for surgeries in hospitals and started a wheelchair building shop in the garage. He ran a tight ship with regular meals and chores for the boys and had little time for complaints. But he would stay up all night nursing the sickest young men lamenting the loss of their former lives and telling them suicide was not an option.

Everyone seemed happy when we brought Henry around, quickly gathering around him in their wheelchairs to measure their tiniest customer. When we came back for the finished project, Henry couldn’t wait to roll around in the magical chair with wheels, circling around the room until he was bent over in laughter and exhaustion. Irma cried as she watched her son delight in his newfound freedom.

Sometimes I stayed at John’s house and slept in a plastic blow-up bed that helped prevent bed sores. In the hallways and living room, I’d see artificial arms and legs leaning against walls and marvel at the good nature of young men with nowhere else to live.

John would go on to build Transitions Foundation, a project that made wheelchairs and prosthetics, and Alex Galvez, a talented Guatemalan in a wheelchair, took the helm. But Henry got in on the early days, when John had time to be a cheerleader and advisor. He sent us to the best physical therapist in town, where Henry squealed as he draped his body over colorful plastic balls, allowing the therapist to lovingly stretch his limbs. The therapist lived in a grand colonial house surrounding a fountain. When Irma got up to use the bathroom I followed her, figuring she had never seen a toilet that flushed.

Don’t worry, she told me. I’ve cleaned these houses.

John began sending delegations of donors to visit Irma’s home to learn more about the Maya. Irma was in her element, talking about tortillas and weaving while pushing her wares. One time, another friend from the United States brought a group of human rights activists to visit, including the last surviving prosecutor at Nuremberg, Benjamin B. Ferencz, who cried when he saw Henry and Irma’s one-room house and bought one of her cloths. I wasn’t there but I was surprised to learn of the reaction of a man who had witnessed so much suffering. I guess I’d become used to life in the pueblo.

During a visit to Hermano Pedro, a doctor told us that Henry might need a shunt, a small hollow tube to help drain fluid from a child’s brain to protect it from too much pressure. I hoped to bring Henry to the United States to see a team of doctors and, if necessary, have further surgery. Was it wrong to single out one boy for care in a country full of disabled children? Was I trying to be a savior? I didn’t think about such issues in the early days, and years later I rationalized my actions by saying, “Family ties run deep.”

When I returned to Boston, I tracked down a one-woman organization that brought children to the United States for medical care. Henry might be a candidate, the nurse said, but she would never be able to get a visa for his mother. The U.S. government feared adults would come to our shores and never go home.

“What about bringing a delegation of surgeons to Guatemala?” the nurse asked me. She had worked with a neurosurgeon at a local university who regularly led mission trips to developing countries, though she received little credit from doctors for organizing delegations that saved young lives.

I found a pediatric physician, Dr. Ludwig Werner Ovalle Cabrera, at a well-known clinic for the poor in Guatemala City. Delighted at the prospect of the first neurosurgical delegation coming to Guatemala to treat the children he so warmly cared for, he convinced a group of reluctant Guatemalan neurosurgeons to allow eight North American doctors, seven men and one woman, to spend six days performing surgery at a public hospital. He struck a deal with the Guatemalan doctors: The foreign delegation would operate only on children with spina bifida and water on the brain, avoiding the more complicated surgeries that brought top dollar from patients.

News of the visiting delegation was announced in flyers posted at clinics in pueblos near and far and spread by word of mouth. Henry, new X-rays showed, did not need additional surgery, but on the days before the doctors from the United States arrived, dozens of women took busses and trekked miles carrying heavy children, many with large, misshapen heads.

Irma and I greeted the women, seating them in rows of folding chairs Dr. Ovalle’s assistants had set up outside the hospital, dispensing comfort while keeping the order.

In six days the doctors could not possibly perform surgery on all the children, some of whom had heads swollen to the size of basketballs due to hydrocephalus, but little brain function. Operating on them would be for cosmetic reasons only, to lessen the stigma they faced back home. Each morning, the doctors poured over medical records and decided which children to treat and which to turn away for the long journeys back to their villages.

The doctors worked from early morning until late in the evening, chipping away at bony defects. They treated patients with a dignity I doubted many had experienced before, touching children gently and explaining procedures in depth. But on the weekend, they turned down my invitations to take them to visit the villages the patients called home.

“Don’t you want to see how our patients live?” the head doctor asked his younger colleagues.

“We know how poor people live,” one replied.

Instead I joined the doctors at a hotel bar with leather club chairs.

“She’s beautiful,” one doctor said of a particularly attractive Guatemalan woman walking across the room. “I wonder if those tits are real.”

Another surgeon couldn’t resist commenting. “In a few years she’ll be ugly like the rest of them.”

Delegations from the same U.S. hospital returned year after year – for more than twenty years – saving the lives of scores of children. But I didn’t understand why some left their hearts on the operating room floor.

Henry continued to get stronger with physical therapy, but by the time he was eight, he still couldn’t walk and spoke just a few words. I worried the family might lose heart because of his lack of progress and failure to speak. But they described him as brilliant and said he would surprise the world when he found his voice. Each year they seemed to find him more remarkable, a boy who brought good fortune to whomever he met.

When Irma and Flavio took Henry around the village, parents who usually kept disabled children from view came outside to ask how they could get wheelchairs.

“Henry is the reason you came back to Guatemala,” Irma said.

The neurosurgeons returned because we thought Henry needed surgery. Flavio worked harder to provide for the family because of Henry, she said. Lusvin studied harder. Perhaps Irma could have been accused of projecting angelic qualities on Henry, but there seemed no limits to the power of one silent boy.

The family saw gradual changes in Henry. For me, they seemed sudden, like the time he stood on his own for twenty seconds. Then one day his once glazed eyes were wide and alert. He turned to me as if seeing my face for the very first time.

“Hola, Julia,” he said in a whisper.

“Hola, Henry.”

By the time Henry was ten, he took his cues from his older brother, Lusvin. Henry spiked his jet black hair with thick gel, sported jeans and t-shirts with the logos of U.S. sports teams and wore sneakers without laces.

When his brother watched soccer on the TV with fuzzy reception, Henry sat beside him and hooted when the announcer yelled “GOOOOOOAL.”

With me, he liked to watch cartoons and eat poporopos, a word for popcorn used only in Guatemalan, though a movie I could only stand once or twice, he could watch on a loop. He laughed easily at the antics of animated, wide-eyed children, perhaps because he was a wide-eyed kid.

When he had energy to burn, he chased me in his wheelchair for what seemed like hours. Still, I felt closest to him when we sat in silence – me at a table in front of my computer, him seated next to me. He rarely took his eyes off me, and I found his Buddha-like half-smile and stillness soothing as I wrote. I would like to think that Henry felt as peaceful as I did as the hours passed. But I don’t really know,

I was pretty sure he enjoyed the ham sandwiches on white bread I made us, almost as much as his mother’s tortillas. He was used to his mother and sister getting up early to pound the corn meal into patties. That something so delicious could come out of a bag inspired its own kind of wonder.

When John started a small school for physically and intellectually challenged children in a classroom at a public school in San Antonio, Flavio, now a few months sober, contacted parents in the village and encouraged them to enroll their children.

The thought of Henry in school excited all of us, even in a classroom of 30 children of all ages and one enthusiastic but beleaguered teacher. Perhaps he would discover skills that would prepare him for a job.

He loved school at first, Irma told me. He particularly enjoyed making art and had Irma send me cards with his creations when Guatemala still had a postal service. Then one day he refused to go. I thought Flavio might have had a row with the teacher, which would have been believable given his explosive personality when drunk. But Henry maintained that the teacher had hit him. I was in the United States at the time, but John told me he found it impossible to believe given the teacher’s sweet demeanor.

The next time I came to San Antonio, I begged Henry to go back to school. I offered to speak to the teacher. I said I would accompany him each day. But he felt a certainty I had never seen in him. The teacher had done something to upset him. A word? A glance?

I only saw him so distraught one other time. He was already a young teenager. I had left a ham sandwich on a table and when I returned I saw that someone had taken a bite out of it.

I asked Henry if he had eaten my sandwich.

He screamed, “No!” It was more like a wail. I don’t know if he felt guilty or wrongly accused. I am ashamed to say I assumed he didn’t feel as deeply as the rest of us and was devastated I had hurt someone I loved.

It was about then I decided to leave my small black American cocker spaniel, Maxine, in Guatemala. I figured Henry could use a companion, and what dog wouldn’t love to roam free rather than be cooped up in an apartment? Over the years, the two became inseparable. They ate together, chased one another and curled up with each other in bed at night. It was lovely to see. A Guatemalan guy and his gringo dog.

When I lived with the family in San Antonio for a year, I began to think Henry spoke a secret language only his immediate family had figured out. Henry understood me. But I had a hard time making out more than his hellos and goodbyes. He would make a series of staccato sounds and I would answer, “Si,” He must have thought I was dismissive or stupid, and to my dismay we began to grow apart. He still greeted me warmly each morning, but he stopped hanging out with me. Perhaps he was getting older and had less interest in adults. But I felt increasingly irrelevant, like an abuelita, a little old grandmother he found more cloying than endearing.

Then, when I was back in the United States, I called Irma to find out what Henry wanted for his birthday.

A soccer jersey? I asked. A piñata?

Henry grabbed the phone from his mother.

“Pollo Campero,” he said, a popular fast-food chicken dish so delicious Guatemalans bring bags of it on planes to the United States to share with relatives.

“You want Pollo Campero?” I shouted into the receiver.

“I want Pollo Campero,” he repeated.

And from that day on I understood Henry.

When Henry took his first steps at age 18, everyone in the village celebrated the apparent miracle. I thought it might be the years of physical therapy paying off. Irma said it was Guadalupe shining her light on her son. Even Flavio, who had no use for religion, sounded like an evangelical preacher. During an annual outdoor party in San Antonio for families with disabled children, he took a microphone and walked with his son through the crowd of guests.

“It’s a miracle,” his voice boomed. And Henry smiled broadly as he held his father’s arm.

But by this time his developmental disability was undeniable. He would never read. He would never hold a job outside the home. His work became cleaning the house and taking care of Maxine, which he did with pride, and keeping his mother company as she wove for hours on end.

Still, the family had had years to adjust to the new reality and if they were disappointed in their miracle boy they never showed it. His brother and sister became politicized and began describing Henry as disabled and talked of the importance of fighting discrimination against people who were different. Flavio advocated for more services for people with disabilities, like free physical therapy.

Flavio began treating Henry more like his other son, sitting with him in the bleachers at a soccer game or when a ragtag rodeo came to San Antonio. Sometimes they wore matching baseball caps and Henry seemed to love being a regular guy.

Irma was the last to let go of a dream deferred. But she has finally stopped describing her son as brilliant. Instead he became simply the sweetest young man in the village, perhaps the world. Like the Virgin, he would always offer comfort. Whatever hell lay in store, Henry would never leave us.

Even Peter Singer softened a little when reality bumped up against the bioethics classes he taught in an ivory tower. He admitted to The New Yorker in 1999 that he paid for his mother’s care when her Alzheimer’s progressed to the point she did not recognize him, despite his position she no longer fit his definition of a conscious person whose life should be prolonged.

I admired his inconsistency, his inability to adhere to a utilitarian view when life and love intervened. “Perhaps it is more difficult than I thought before, because it is different when it's your mother." he said. Or a godson named Henry.

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