Before moving there, I had hardly ever thought about Florida. In California you don’t dream about moving there in the way you might if you live in the Northeast. Once we arrived, I started getting the lay of the land. From the Florida Keys up as far as Orlando, they say you have to drive north to get to the South. Jacksonville was the informal capital of lower Georgia. It had been the hometown of one of America’s great writers, James Weldon Johnson, and a pocket of Yankee urban hipness was tucked away in its Riverside neighborhood. The massive St. Johns River cut through the middle of the city. It narrowed considerably as it progressed northward through the urban center, made a hard right at the base of the downtown, and eventually emptied into the Atlantic about fifteen miles to the east. The city itself was midsized, attractive, affordable, and easy to navigate. Life was easier there than in the old country.
We bought a home on the east side of the St. Johns River in the San Marco neighborhood. Upscale shops lined San Marco Square, where a large fountain with three big bronze lions stood in front of a Starbucks. More than half a mile south was Craig Creek, a little stretch resembling a mini Louisiana bayou. Fingering in from the river, this primordial swamp was fronted in places by cedars, the roots of which projected upward like stalagmites. This swamp is said to be home to alligators, but only once have I seen one there.
Two-thirds of a mile south of Craig Creek was the home we’d purchased. It was one of the cheapest and smallest houses in an affluent neighborhood of older residences. A dense tree canopy draped with Spanish moss shaded the streets. After decades in a city, I was going to live in a place where the buildings weren’t on top of each other and the yards were bigger than postage stamps. The neighborhood was well-heeled, with scrupulously tended yards of harmonious landscaping and sumptuous lawns. The river was very close, and bordering it were the posh mansions of Alhambra Drive, a few of them resembling mini Versailles with high walls and gated entrances and Land Rovers and Jeeps and Jaguars parked in the long driveways leading up to them. Our house, a block inland, and far more humble, had been built in 1938 by Truman Capote’s uncle, and young Truman had spent several summers there. Around the corner from us would live the grandniece of Harper Lee. During the sale the mortgage broker, an elderly gentleman, referred to Ilene as the “trailing spouse.” As we were leaving his office I said to her, “Toto, I’ve a feeling we’re not in San Francisco anymore.”
Later in the summer, Ilene hired a doula named Janet. Ilene had learned the hard way that delivering a baby was too fraught, too momentous an occasion to be left entirely to doctors. At first I balked at the expense, but she persuaded me to go along. She said that we could no longer trust that physicians would “look out for us.”
Ilene had another good reason for hiring Janet. She wanted a doula to assist her in avoiding a repetition of what went wrong the first time by having a natural childbirth. Wishing to remain clear-headed and vigilant, she planned to go through the ordeal without an epidural. It wasn’t that she was being ideological; that is, she wasn’t trying to be an earth mother by having a pure childbirth experience. Rather, she just desperately desired to give birth to a baby with all of her brain cells intact. A healthy birth the second time would go a long way toward undoing the psychological damage she had incurred from August’s birth.
As we were preparing for the birth, 9/11 happened. That morning Ilene was checking out a school for August to attend, and all of the television sets there were tuned in as she walked through the classrooms. I was at home feeding August breakfast when she called, exclaiming, “Our country is being attacked!” In the days and weeks following, to protect her maternal ecosystem for the baby’s benefit, she stopped watching the news.
On the morning of November 1, Ilene and I headed for St. Luke’s. My aunt Agnes Gabbard from Arkansas and Kathryn (“Kat”) Grifo, a college student and August’s chief caregiver, stayed home with our son. For the second time in our lives Ilene and I stood at the threshold of a hospital, having stopped to hug and kiss. This would be our second dragon adventure. And again we approached the hospital’s dark mirror doors, seeing only our own reflections.
The OB-GYN, Suzanne Swietnicki, welcomed the doula and cheerfully worked alongside her. Throughout the labor Janet assisted Ilene with breathing exercises and other techniques. And Ilene managed to go through the process entirely drug-free. The baby arrived after nine hours of labor at 7:11 p.m.
We had no idea that the process could go so smoothly. We immediately grasped another difference. When a mother giving birth receives pain medication, the drugs infiltrate the infant’s system, and this makes the newborn dopey. This infant, though, didn’t have any drugs circulating in her blood, so her little coffee-bean eyes popped open immediately, and within minutes she was an alert, beady-eyed baby. In fact, she was staring at us.
That evening we gave her the name Clio. We pulled out the birth plan from two and a half years earlier. Among the “Other Requests” listed in it had been the desire for “immediate bonding with the baby after birth.” We had hoped for “the baby to be placed on mom immediately after birth to allow for skin-to-skin contact.” This time the request could be granted. A full moon began rising at a little after midnight.
August’s blithe pterodactyl shrieks mingled with the sounds I heard when dropping him off at the Mt. Herman Exceptional Student Center. Each morning, I would drive six miles northwest on I-95, crossing the Fuller-Warren Bridge spanning the St. Johns River and skirting the western edge of downtown. Just off Eighth Street, it sat on the opposite side of I-95 from UF Health Shands Hospital. Once parked, I would wheel him in the front door and sign him in with Miss Beverly, the front-desk secretary. It was a short walk from there to his classroom.
The first day, I was overwhelmed to see so many medically fragile children assembled in one place. The student population was about 160, and a number of them had tracheotomies, feeding tubes, and oxygen tanks, and lived with severe cognitive impairment, cerebral palsy, blindness, and other conditions. Three full-time nurses had to be on the grounds to attend to their medical needs, and they were never idle. Every year, one or two students died—sometimes more—from natural causes, always at home, never at the school. That first day I found not just the sight but also the soundscape distressing, with its cacophony of idiosyncratic noises, the screeching and squawking. That our son would be included in this population was devastating. My heart sank.
This feeling didn’t last, though. I soon settled in and, before I knew it, was seeing the world anew. The squawking and screeching, I quickly learned, were cheerful sounds. Despite their problems, these were kids just being kids, doing silly kid things. Mt. Herman turned out to be a wonderful school for August. Its teachers and administrators showed good morale and strove to do excellent work. The teachers who couldn’t handle the situation quickly transferred out, while the ones who stayed became deeply committed to serving the students.
Many of Mt. Herman’s teachers remained even though they were penalized for choosing to work in this school. No way existed for them to earn the bonus that Florida rewarded its teachers whose students showed sufficient progress according to certain metrics. They remained because they were dedicated to the school’s mission. Mark Cashen, the school’s inspirational principal, and the Mt. Herman teachers treated August with dignity and never gave up on him.
Again Ilene and I weaned August off the antiseizure medications, and this time we had far better results. Afterward he experienced only minor and infrequent seizures, ones lasting for up to twenty seconds at most and occurring months and sometimes years apart. Such short and infrequent ones did not threaten his health.
In February 2002 a three-track CD of Winnie the Pooh songs appeared in our house. It had accompanied a diaper promotion. One day I popped it into the CD player. August was on the playroom floor secured onto his Tumble Forms wedge, a larger one now because he had grown a little bigger. When the music began playing, he threw his head back in a roar of delight. The CD’s openin
g song was “Winnie the Pooh,” with a lush chorus of voices, and after it finished August settled down. I played the opening track again, wondering what was up, and when the first strains burst forth, he once again threw his head back and chortled so hard he could barely breathe. August loved music! Over the years he developed other favorites. He particularly enjoyed Dan Zane’s “All Around the Kitchen,” Raffi’s “Bananaphone,” the Muppets’ “Life’s a Happy Song,” and Oscar the Grouch’s “I Love Trash.”
August also loved Cocoa, a pony. Riding this small, cream-beige-and-gray horse provided extraordinarily happy moments beginning in March 2002 and continuing for at least four years. Every Monday in the late afternoon (except in winter), I drove him to a large, fenced-in, grassy field now owned by Jacksonville University in the Arlington neighborhood. There, for thirty minutes a week, he underwent hippotherapy with physical therapist Lisa Federico and her volunteers. By this point we had tried myofascial release, acupressure, cranial sacral work, and sensory stimulation (we avoided hyperbaric chambers, which turned out to be of questionable value). At least with hippotherapy, we found something August liked immensely.
“How’s Augie going to ride a horse?” asked his wise pediatrician, Stephen Cohen, when I asked him to sign a form allowing him to participate. August riding a horse would require three people to assist, I told him. One would place a thick four-inch strap with two large handles around August’s middle (a handle would be on each side). Next they would hoist him onto Cocoa’s back. Lisa would take the bridle while two volunteers, one on each side, would walk along and hold onto the handles so that August wouldn’t fall off. The horse’s motion made him giggle, beam, and crow. For thirty minutes, the four humans and the horse would saunter around the field’s fenced perimeter like Chaucerian pilgrims journeying toward a distant shrine.
In late July 2001 August started going to the DLC Nurse & Learn in the Murray Hill neighborhood under the auspices of its early intervention program, of which there were remarkably few in northeast Florida. In March 2002, when he turned three, he “aged out” of early intervention, as is typical for such programs. Just at that time our finances required Ilene to start working again as a physical therapist. It was easy to find a good child-care arrangement for Clio, but having a kid such as August was like having an elderly parent with Alzheimer’s disease and needing 24-7 care. We had to find coverage for the after-school hours, the days school was not in session, and holiday breaks. Day-care facilities wouldn’t accept him. If you go to IKEA and wheel your severely impaired little boy to its Småland play area, no staff member there is going to let him in. Ilene began looking for a day-care facility, but August was completely shut out. And there was no equivalent to Cynthia Godsoe of the Child Care Law Center to help us. Fortunately for us, the DLC Nurse & Learn was willing to accept children with severe impairments into its regular day-care program.
In the years to come, the DLC was where August would go every day after school and all day during the summers. Whenever August was there, Ilene and I could relax, knowing that he was in caring hands. Amy Buggle, the founder and chief administrator, and her staff treated him with respect and loving attention, recognizing his dignity as a human being. If it had not been for the DLC, Ilene or I would have had to stop working and stay home, and this was something we could not afford to do. The DLC proved to be a great boon because it allowed parents and guardians of children with severe and multiple impairments to continue working.
When August was born and for several years afterward, his condition did little to challenge my belief in reason and progress. I never doubted that, were I to dig down deeply enough and be granted access to all the facts, the question of what had happened to him at his birth could be answered. At first this rationalistic stance served me well, for I remained confident that the world was ultimately explainable. On some level everything still made sense. Of course, I still had to wrestle with the reality of August’s physical and mental state. On account of his catastrophic birth he was a spastic quadriplegic (cerebral palsy paralyzed almost all of his body), lived with cortical blindness (the cortex could not process the images coming from the optic nerve), was profoundly cognitively impaired, and was nonverbal. He also was incontinent; he would forever wear a diaper. He could take food and drink by mouth, but he could not use his arms, so Ilene and I had to deliver every spoonful of food and sip of liquid to his lips. We could have had a feeding tube implanted (a G-tube) and saved ourselves the trouble, but he so loved to eat that we did not want to deny him this pleasure.
When we were feeding him, he could not just sit in a chair the way that a typically developing child would. He needed upper trunk support, so he had to be secured in his wheelchair with straps holding his shoulders and chest in place. Propped upright, his head lolled, falling forward and backward: the muscles in his neck never developed properly. He also drooled, and this occurred because the spasticity affecting his mouth prevented him from being able to swallow his saliva efficiently. When he was lying on the floor, he was unable to crawl, scoot around, hold himself up, roll over, or even touch his toes. If someone were to put him in one spot and leave him, he would be found in the same location an hour later, give or take a few inches.
Overall, I continued to believe that the unexamined life is not worth living. But blebs of doubt had begun forming in the glass of my worldview, and eventually secure assumptions started to give way to questions for which no answers seemed possible. Why had everything gone wrong at August’s birth? Why was my beautiful boy so impaired? Why was he so deprived of the basics of life? Why had this calamity happened to him? And beyond these questions concerning the past were others about the future: Who would take care of him after Ilene and I died? Most importantly, how would I ever find peace, knowing that terrible things had befallen my boy?
Like a strong wind at my back, the force of these questions began to propel me forward in a new, unexpected direction. I found myself increasingly grasping for something. Were I to miraculously receive all the answers about August’s birth, find the empirical truth, the scientific basis, would this really make a difference? That my boy remained nonverbal, non-ambulatory, visually impaired, and diaper-reliant was a reality I had to face. But science and reason couldn’t help me do that. Because they provided cold comfort, a bigger problem was at hand. I began to suspect that modernity—heir of the Enlightenment—this brave new world, was hollow at the center. There was no there there. It offered nothing but incessant change and vague promises of a better tomorrow.
And so I, the least likely of pilgrims, suddenly found myself embarking on a spiritual journey, that category of narrative that I as a young man had dismissed. My Enlightenment clockwork universe lay shattered on the ground, and I had to ask myself, How did I get here?
My father’s ancestors were Scotch-Irish and had been living in America since the early 1760s. As a young man, my father, Arvil, migrated penniless from Arkansas to California, where he met and married my mother. Later he spent time in jail, two years in Soledad Prison, for passing bad checks, or so I’ve been told. This event took place when I was too young to understand or remember, and I didn’t learn about it until I was twenty-eight. After being released, he worked for many years as a hardware store clerk before opening a business that sold parts for irrigation systems. Raised a Protestant, he was a nonbeliever, but he went to church anyway to please my mother, Fran.
Fran’s people on her father’s side came from the Azores and had lived in California since the 1850s, and her mother had emigrated from County Mayo in Ireland. Later in life, my grandmother would send a check every month to the Irish Republican Army. Born and raised in Palo Alto, my mother grew up in comfortable circumstances because her father had done well in local real estate. She was a stay-at-home mom and a devout Roman Catholic, as were all of our relatives on her side of the family. A few of them were priests, and Fran and her Irish kin hoped that I would become one too. I attended St. Albert the Great Elementary School and serv
ed as an altar boy at St. Thomas Aquinas Church. I thought seriously about going into the seminary—this was when I was eleven and twelve. So invested in Catholicism was I that I regularly read Fred McCarthy’s cartoon Brother Juniper. I presumed that sainthood was in my future.
Instead of the seminary, I went to high school at the closest one to Palo Alto that was Catholic, Saint Francis High in Mountain View. I had to ride the Southern Pacific train every morning to get there. My mother insisted that I attend Saint Francis even though nationally acclaimed Palo Alto High School was one block from our house at the corner of Coleridge Avenue and Alma Street.
The Brothers of the Holy Cross ran Saint Francis, named for the twelfth-century pacifist of Assisi, Italy, and it was then an all-boys school. Now it is co-ed and prestigious, a premier institution in Silicon Valley, with Google headquartered a little over three miles away and Apple less than six. When I attended, the so-called seat of human progress (Silicon Valley) had not yet developed. The town of Mountain View was sleepy even though a number of major companies, such as Hewlett-Packard and Lockheed, were located in the region. In the not too distant past, the area had been devoted to growing prunes. Many of my classmates sprang from newly flush second- and third-generation Italian American families that had sold their prune orchards to developers, who replaced them with subdivisions and office parks. The student body consisted of about eight hundred, only one of whom was African American, a fellow the other students called Animal.
A Life Beyond Reason Page 7
