Father's Day, every day, with my disabled son

Medical science gave us August's dire medical diagnoses. But our imaginations let us reach our happy, lively boy

Published June 16, 2019 11:00AM (EDT)


Excerpted from "A Life Beyond Reason: A Father’s Memoir" by Chris Gabbard (Beacon Press, 2019). Reprinted with permission from Beacon Press.

A sentence from a 1715 issue of Town Talk, a London periodical, summed up our sentiment: "It is a wise dictate of Nature that we love those children dearest whom she presents to our care with the most infirmities." At the beginning of each day I would pass through the laundry room and open the white door to August's sleeping quarters, a small room at the back of the Capote house. August's little elfin grot was a space about the size of a one-car garage. The door, baseboards, and two window frames were painted white, and the four walls were a baby blue shade that Benjamin Moore called Windmill Wings.

Every morning during early March, at a few minutes before seven o'clock, a horizontal ray would shoot through an east-facing window and flare diagonally through the chamber. For the time it takes a matchstick to burn, it would illuminate the room's west wall. The signature of this beam would be no larger than a quarter, and it would land just above and to the right of the headboard of August's electric hospital bed. Sherwin-Williams would label this hue Laughing Orange. This spot on the wall was the sunrise and the cue for my aubade to August. "Wakee! Wakee!" I would call out as I came through his white door. I would touch his shoulder and pull down his covers and then raise the blinds. Light of the new day—the good-morrow—would stream in. August would open his eyes, stretch, coo, grin, and kick at the bed covers with glee.

From outside would come the resolute tapping of woodpeckers and the morning calls of gray catbirds, brown thrashers, and mockingbirds, all singing their hearts out. This was our parliament of fowls. For the most part I didn't know which birdsong was which; I just knew that these were common birds in our area. I would join in with my own morning call, the "Good Morning Song." As I began to sing sweetly, August would brighten further and wait for what he knew was coming. When I came to the penultimate line, I would screech it out in an exaggerated, creaky voice like that of Margaret Hamilton's Wicked Witch of the West from "The Wizard of Oz": "Good morning to the bunny rabbit named August!" Hearing this, August would kick and squeal.

I then would get him ready for the day by changing his diaper, bathing him, brushing his teeth, and dressing him. I loved his warmth, his body heat, as I tended to him. Every day, I would silently note that he had a belly button like a jellyroll.

August had an exquisiteness about him. At birth his eyes had been green, but over time they softened to hazel. He had a winsome, well-shaped face with high cheekbones. His hair when he was born had been red, but over time it settled into light brown and became soft, thick, and fluffy.

In the mornings August's vision was at its best because he was rested. His eyes would roam about, scanning and visually taking in the room and me as I went about assembling everything to prepare him for the day—washcloths, toothbrush, fresh diaper, and clothes. August could see very little, and the condition of his sight was officially labeled cortical visual impairment, or CVI . With CVI , his optic nerves worked perfectly well, but because he had suffered brain damage, the cortex had great difficulty making sense of the data it was receiving from these nerves. Therapists told us that sight for August was like looking through many sheets of cellophane. If he had experienced a good night's sleep, he might be able to pick out colors and shapes, but little more. Whether he could make sense of them was another matter. The only major sign from August's appearance that he had suffered a significant brain injury was the way his eyes moved. His eyeballs shifted in slow motion. His saccades—or fast movements of the eye (something we all have but don't notice in one another because the movements are so rapid)—were poor, owing to the damage to his cortex. And so, with slowed saccades, August swept his visual field.

His best vision was peripheral: he could take things in with brief sideward glances. Consequently, when he appeared to be looking directly at me, I knew that he actually wasn't seeing me at all. But if his body was turned ninety degrees away from me, as when he sat sideways on my lap, and he shifted his head slightly toward my face and gave me a quick glance out of the corner of his eye, I knew that he was briefly taking me into his field of vision. On these occasions he'd shoot me an infatuating little smile.

Sometimes he would stick his finger into his eye socket, and a vision specialist we consulted speculated that he was doing this to stimulate light sensation. I wouldn't let him do this though—not because he was going to gouge an eye out, but because I didn't want him to damage the cornea. "Don't do that," I'd say each time as I removed his finger from his eye. "You're not Oedipus."

Back in 1999, when we were still in San Francisco, one of August's therapists—a friend—had written in a report that on account of August's brain injury he had increased tone in all of his limbs, but decreased tone in his neck and trunk muscles. This combination brought about "severely limited active volitional movement." Seven years later, her assessment remained accurate. He couldn't move his limbs, except for his legs, which he was able to kick, and his left arm, which he could flail. Moreover, August never improved intellectually. His developmental gap continued to widen. He was only going to make it to about a one-year-old level by the time he was an adult, if that. He was like a baby who kept growing bigger and bigger without any increase in skills and abilities.

The therapist producing this report was describing him from the vantage point of science, and what she wrote was accurate, as far as it went. "Profoundly retarded" was the label that another professional used regarding him. "Retarded" is the condition that society, in the words of English professor Janet Lyon of Penn State (and mother of Jamie Bérubé), assumes to be "the lowest rung" of humanity.

When we brought August home from Loma Prieta years earlier, we had entertained high hopes regarding recovery from the brain injury. Dr. Anderson at the family consult seven days after the birth had been encouraging, saying that August would probably meet his milestones. But Ilene and I had never encountered a child who was in this state. I myself was unaware that such children even existed. Had we parented August with only the doctors' and therapists' descriptions to go by, we might have thrown up our hands in despair. But we knew that August was more than a smoking heap of terrible conditions. Because we saw that he was a happy and lively being, we didn't let the medical terminology or bioethical stereotypes govern our thinking about him. We turned instead to the imagination, because that is what makes us human. Life without it would be life in a dungeon. If knowledge is power, imagination is destiny. A scientific, empirical description turned August into human rubble, a car wreck that had happened in the delivery suite, but imagination allowed us to move the medical diagnoses to the curb so we could reach our boy. In our minds' eye he wasn't all that different. He was August, just one member of a quirky family.

August had become a devotee of the senses. Cultivating whatever gave pleasure became the chief business of his life. He did not know of any occupation that was more important, and he was extravagantly fond of good food. August would bite his left hand when he was hungry, and that's when I knew it was time for him to eat. Fearing reflux, San Francisco therapists had directed us to only give him Pedia-Sure. The therapists at the DL C Nurse & Learn helped him transition to eating bananas, sweet potatoes, and other soft dishes. He could consume food with textures, food finely chopped but not pureed.

Each portion of food and sip of liquid had to be hand-delivered to his mouth, like feeding a baby bird. Because he could not see, we cued each bite or sip with the clearly articulated words "food!" "milk!" or "water!" whereupon his little pink mouth would pop open. We would bring the spoon or cup to his mouth, he would take in the food or drink, and then we would linger, sometimes for up to thirty seconds, allowing him to swallow before offering him more. We could not hurry; if we did, he might aspirate what was in his mouth.

August was not a fussy eater. Banana mashed with a crushed graham cracker became one of his preferred mid-afternoon snacks. For dinners, sweet potatoes with a pat of butter and a dab of maple syrup proved a preferred dish. To vary his diet, we produced thick, semi-pureed concoctions of enchiladas, lasagna, or chicken mixed with carrots, broccoli, and broth. Tasty food made him utter a soft, murmuring coo. Eventually, for dessert, we were able to feed him a cookie.

His sense of smell was sharp too. He loved the aroma of coffee, and whenever I placed a steaming cup beneath his nostrils, his smile broadened.

He loved ice cream the most. Whenever he took in the first bite, his face would scrunch up into a deep pucker, seemingly an agonized response to the coldness. Next, he would work it around his mouth with his tongue, and finally he would swallow it. We could practically see his brain freeze. You might conclude from his initial pained expression that he wouldn't want more, that eating ice cream was too excruciating. A couple of seconds would elapse, though, and then—without anyone having to say the cue word "food!"— his mouth would open for more. So entertaining a spectacle was this that it became performance art.

He delighted in parties. During Clio's annual birthday celebrations, with her young friends shouting, laughing, and playing games, he remained silent in his wheelchair, perplexed by the sounds. But then, after the party had wound down and the children had gone home, he would begin to bellow loudly, as though he had finally figured out the meaning of the voices. Now, belatedly, he had something to contribute. Or perhaps he wanted her friends to come back.

Because August was not able to walk, he had little of what is called vestibular stimulation. This is the process of sending specific electric messages to a nerve in the ear. When he was much younger and smaller, I had been able to lay him over my shoulder and hop up and down, either on pavement or in the swimming pool at the Jewish Community Association. When he became bigger and heavier, therapy balls substituted. After laying him face down on a very large one, I would roll him rapidly back and forth or bounce him up and down in place, and these motions would make him shriek with pleasure. As he grew, Ilene and I had to keep moving up to larger and larger therapy balls. When he had grown so much that no ball was large enough, we had to go big or go home by ordering the most massive such thing in the catalog, the blue peanut. The blue peanut was a two-and-a-half-foot-high oblong "ball" indented in the middle, and it was huge—it took up a lot of the playroom. We were able to plant August face-down in the peanut's middle, and he would become ecstatic whenever we gave him a workout. When I would make him go really, really fast, backward and forward, he'd screech.

When I went running, August would join me—by sitting in a blue, supersized "special needs" Baby Jogger, the largest the company made. I remember one mid-afternoon, when he was nine years old, in 2008. The humidity being relatively mild and the temperature not overly hot, I judged it would be a good time to put him in the Jogger. It was overcast when we set off, but not, I thought, so dark that a storm threatened. Very often, summer afternoons all over Florida are positively gothic, with lightning, thunder, and dense tropical rain. The state also is the lightning-strike capital of the world.

Running, I pushed August north on San Jose Boulevard, past the wide expanse of the Duck Pond, the one-story red brick schoolhouse (and the lush green meadow surrounding it), and the eastern tip of primordial Craig Creek. We crossed Hendricks Avenue at the traffic light and headed toward the eastern edge of the San Marco neighborhood, where a rail line intersects St. Augustine Road. There, on the south side of the tracks, and three quarters of a mile east of Craig Creek, is a three-acre tree-shaded graveyard, a secluded spot where the rude forefathers of our hamlet sleep. Dating back to the 1840s, the Philips–Craig Swamp Cemetery was, by 2008, forgotten and overgrown. It was tidied up in 2017, but when August and I went there, it was wild. Inside the gates, he and I made our way.

This was my favorite place in Jacksonville. Ironically, it was this graveyard where the city first came alive for me. Ragged, fully grown trident maples and moss-draped live oaks populated the grounds. A tall scruffy cypress stood by the tracks, and a low ancient palm tree squatted in the center. Toward the back, a large tree had fallen in a long-ago hurricane, and now its rotting trunk lay lengthwise along the ground like a low, cylindrical wall. No lawn surrounded the mossy tombstones, just weeds, and I maneuvered as well as I could over the uneven surface, an infielder's nightmare. The turf heaved throughout these burial grounds with tree roots and branches and moldering graves. Both Union and Confederate dead had been interred there. The Jogger careened around them as we dodged frail memorials and toppled monuments. Pushing August over the soil's jagged plane jostled and jarred him, and the rough motion made him squeal. The more rugged the terrain, the bumpier the ride, and the more it jolted him, the more he shouted for joy.

I'd been so caught up in his excitement that I hadn't noticed the storm clouds moving in. Leaving the cemetery, we smelled the rain before we felt it. August delighted in the droplets that began landing on his bare arms and legs, and he made appreciative sounds. The Jogger's awning protected his head. As we reached Hendricks Avenue and headed south, I was grateful that it was only sprinkling. We crossed Hendricks at the light and skirted the eastern tip of Craig Creek, but then, heading south on our home street, the storm exploded. Instantly I was soaked. Powerful winds began to blow, and I wondered if a tornado was forming. Lightning and thunder commenced, with forked incandescent streaks rippling the sky. The interval between the flashes of light and the thunderclaps became about a second. We still had half a mile to go. August sat silently, stunned by the sublimity. The torrent slapped my face, and the world withdrew into gray: the red schoolhouse and green meadow vanished. The broad surface of the Duck Pond, pelted with rain, shimmered. I dashed August up our long driveway to the protection of a carport. After whisking him out of the Jogger, I carried him into the house, laid him on his big changing table, removed his drenched clothes, toweled him off, and dressed him in dry clothes. All the while he beamed and cooed, invigorated by our big adventure in the wild.

Every night after I had dressed him in his pajamas, brushed his teeth, and placed him on the sheets, it was time for a lullaby, "Returning," by Ajamu Mutima. Mutima is a master of the kora, the twenty-one-string West African harp-lute. I would turn on the CD player, turn off the overhead light, snap on his little night lamp, and make certain the sound monitor was on.

Some people may suppose that, because my son's character was as airy as a dandelion gone to seed, I never got a chance to know my boy. In the darkness, as Mutima softly played the kora, I would lean over the bed railing so that my face would be very close to his head. As the moon waxed and waned, rose and fell, pulling the tides in ebbs and flows all around the planet, I would think of two lines from a John Donne poem: "For love, all love of other sights controls, / And makes one little room an everywhere."

Our communication was closest at bedtime, when we entered our separate reality most profoundly, and I would speak nonsense sounds into his ear, telling him wordlessly that I loved him, and he in his own singular way would tell me the same thing. His response would be to incline his face toward mine and grin, and sometimes he would cackle with glee, the laugh of Medusa. I would whisper, "My darling boy, my moon and stars," and he—a little chucklehead—would giggle. Into the night August and I had many a deep conversation, ones as sweet as being put under with Propofol.

By Chris Gabbard

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