Know the Night (4 page)

The signs, too, vanished. The disappearance was so exquisitely subtle, so already submerged in silence, that it was a long time before R and I realised what was happening. We were so delighted when he did communicate that it masked that he was turning inward, but in the journal, it became apparent that I was recording a decline. From age two to four, the words and signs, every single one, began to slip away. Clutching after them and writing them down did nothing to stop them. We were introduced to a new kind of space, and it wasn’t so much that silence was noticed and accounted for; the silence itself was beguiling and formed around us so gently that we could excuse it. Eventually, as the spaces grew larger and he did speak or sign, he could silence anyone around him. The words, when they swaggered in, became legendary.

One such instance occurred when he was three and a half, and he walked into the bathroom where R and I were getting ready for the day. He stood with his fingertips on the counter’s edge and, miming our peppery speech, said with perfect clarity,
fuck
. At age four, he sat at our kitchen table with an untouched bowl of fruit, and R asked him—not expecting an answer, just posing the question because you never know, maybe someday an answer would come—why he hadn’t eaten any of it, and he responded,
It sucks
. The
stricken silence that followed must have lasted a full two minutes. The last times that he spoke, we were unaware that we wouldn’t hear words from him again. He was exact and said,
Bye
, at age six, and a year after that,
All done
.

There are therapies but no particular sorcery for the problem of disappearing words, no way to pull them back. From the moment he was born, it seemed, there was much to be done. I was given to think that his development relied on my ability, together with that of countless therapists in various fields, to promote it, and that we had to overcome the invisible forces afflicting him with repetitions and skillful convincing. It seemed to me that I was supposed to solve the problem.

The appearances and disappearances were accompanied by difference all around: he was almost two before he took his first steps. A physical therapy guru arrived from South America to give a workshop on his method, called MEDEK (translated into English, the acronym means Dynamic Method of Kinetic Stimulation), and those of us attending learned circuslike, improbable things. In a large room with a crowd of parents, the babies and toddlers were skillfully flipped and spun. He made the parents gasp by balancing the babies upright on outstretched hands, in just the way that a child learns to vertically balance a stick. We went home and turned our kitchens into therapy rooms, and under the tutelage of therapists practised this particular magic. And it was there that it happened, Gabriel the toddler, who had been unable previously to stand alone, balanced perfectly, cleanly, with his little feet on my palms; he grew, absurdly, from my open hands. Within weeks, he took his first steps.

And yet. Words have been impervious to inducements and have
developed the slipperiness of what is most desired. It took years for us to understand that our entreaties would do nothing to bring his words back.

I was walking through a building one day recently when I saw a sign admonishing people to be quiet. In fact, there were two copies of the sign, just in case the first went unnoticed: Be Quiet Because
Sounds Carry
. And the phrasing struck me suddenly, the suggestion that the sounds aren’t passive, but themselves do the carrying, like passengers hauling suitcases toward a train or rescuers laden with limp bodies from rubble. Even as sounds fly off in a rush, they’re burdened.

I’ve come to view the seizures as thieves of Gabriel’s abilities. He was five months old when he started having them, what looked like involuntarily gestures, so apparently delicate that he had them in full view for a week without anyone understanding what they were. One after another, the seizures began in his brain and rippled out to his fingertips, so that he simply lifted his arms up to the ceiling, as many babies do to say they want to be picked up. However, in Gabriel, the gesture came with a vague look of surprise. The propulsive nature of the movement was concealed by his low muscle tone, which is characteristic of Down syndrome, and made the motion seem almost casual. He gestured this way again and again, and I tilted my head at him,
What am I seeing?
The appearance, vaguely, of a marionette. Finally, when he was lying on my chest and began to gesture, I felt something like its trajectory, a burst of electricity. He was a semaphore, signaling. The ripple that began in him surged into me, cued cold panic and a call to the pediatrician.

A few days later, R and I found ourselves holding Gabriel in a lab
where he was being prepared for an EEG. We’d kept him awake for much of the night so the testing could be done without sedation. R and I paced the beige room, rocking the baby, waiting for him to drift into a deep sleep so that electrodes could be attached to his scalp. By the time the technician finished placing them, a wire sheath snaked up and back from his head into a quietly whirring machine, one that would transmit data to a windowed room a few feet away. R and I hovered, waiting for the process to begin, the machines to hum and the pens to scratch. Someone in the other room watched the scribbles forming on the moving sheet of paper, seizures in cursive, which generated a murmur from the staff. When the test was finished, and we glimpsed the graphs, we saw the sketch of the electrical storm in his brain, a series of spikes and dips, a kind of organized frenzy.

By the time his seizures began, we had had five months to soak in all the information about Down syndrome we could find. Books and articles had piled up at the bedside and in the living room (and these were something like travel brochures and owner’s manuals combined) and I had immersed myself in them. There was a long list of possible physical traits associated with trisomy 21: epicanthal folds around the eyes, thyroid issues, neck-vertebrae instability, heart defects, and on, but not a particularly increased risk of seizure. The seizures seemed to have an etiology all their own, to have arrived from nowhere, or said another way, to have arrived from somewhere else. They were evidence of yet another planet in the system. I remember a terrible chill; I remember standing in the kitchen and my knees buckling. There were no words, it seemed, to hold on to.

The neurologist’s office was a building just yards from his house. It was easy to imagine him putting on his bowtie and jacket, and
drinking a cup of coffee while looking out the kitchen window toward his office, then heading out across the lawn, in the slant rain, or snow, or past impatiens in early spring, to where he delivered the news to anxious parents, tried to explain the mostly impenetrable human brain and just what, exactly, they’d been able to understand. We sat in the waiting room, surrounded by thirty-year-old décor: vinyl seating with paisley designs in green and blue, wood paneling, a pale orange shag rug, all of it impeccably ordered and dustless. When we were led into the neurologist’s office by the receptionist, who was also his wife, we found him tall and white-haired with thick black spectacles. He gave the impression of having seen it all, and that was what we’d wanted to find, if not the doctor ensconced in the 1970s, then at least someone white-haired and wise.

He had reviewed the results from the lab and concluded that Gabriel’s seizures were infantile spasms, and as he explained them to us, it seemed that the term “infantile” suggested an ephemerality, containment. He told us, as we sat on straight vinyl chairs with metal arms, that when the disorder went undetected and so untreated for an extended period of months, the prognosis was not as good as when the discovery was more expedient, as in Gabriel’s case. There was also an increased risk, later on, of autism. We would have to wait and see. He was cheerful and sanguine, and somehow it worked, this silk thread of optimism, and we held it carefully, respectfully, not wanting to fray, or worse, break it. It was a gift and gave us time. When we realised that the extent of damage from the seizures was actually profound and there was, in fact, an autism diagnosis, a number of years had passed. And there it was. The drift of words, a shift, an alteration.

I
nside of this is parenting’s alchemical gist: the love for the child becomes so enormous that it mitigates everything else; what would seem anathema to others becomes—to the parent, at least—more or less the status quo. I remember being tired and prickly with self-doubt but also utterly enamored. I remember the trembling, the worry as I held him, but also that life proceeded, that we learned to adapt. Some of the worries faded and so did the seizures once he was given a medication to quell them. I remember that R and I were content, that we found the workings of Gabriel’s brain and child development in general fascinating, and I became close with a group of women (wild and strong and visionary) with children with Down syndrome, who put another pulse of energy in my existence. I was consumed, mostly willingly, by the minute details of Gabriel’s progress and what the various therapists who had entered our lives were doing with him. The days were a rotation of people—ones with degrees and skills and experience—coming and going, and I was still unaware that words would come and go, too. Eventually, and at least for a period of months, the pervading sense was one of quiet power, of accomplishment. He was a magnetic baby with a toothless smile that was fleeting but so potent that everyone around him pandered
to his humour to get him to grin. He was charismatic and a traffic stopper. A friend admiring his tufted blond hair likened him to a baby duck. He smelled fantastic. He learned to sit unsupported, and eventually to crawl, and to bring a spoon to his mouth. His sleep was deep and restorative and entirely reliable; so reliable that R and I often commented on how lucky we were that he was a champion sleeper, how we could recover from each day. We even said about his sleeping,
Imagine if he didn’t. Imagine if we were up at night
.

No, stop.

This is the cart before the horse; there was something else. A sound. Another transmission coming through. We anticipated words; we had no reason not to. But after his seizures and before his words (or: after the first silence and before the second), his original quiet was answered by another chasm when he bawled for long periods. The crying didn’t seem so different from many typical babies’ except that he was older and able to sustain his tight rage for hours. The pediatrician shrugged and mused that it was probably late colic; mused because there didn’t seem to be an alternative, another way of saying bald-faced-human-fury-encapsulated-in-an-infant. No other way of saying, at the time at least, the fury that is sometimes autism, a clash of gods delivered in a small body. At this point, it was years before the term
autism
would be applied to Gabriel, because he was still a baby, because his Down syndrome presented an obscuring feint, and because in the year he was born, autism diagnoses were still rarer than Down syndrome. With so many cloaks, he was simply a baby who cried a great deal.

There was a day in the midst of this, one of weeping and pacing and coming undone. He had cried for hours, his body a tight extension
of my own, as though he were a raging violin. I had tried ways of carrying him, or I had laid him down. I bundled him or gave him space. I tried to distract either one of us with food or juice, music or toys. I sang, talked, or fell silent. Dimmed the lights or parted the curtains. Provided fresh air or warm blankets. Or nothing, nothing, just an inward attempt, a prayer, for respite. So the seizures were long gone, but in their place came this scorching sound. A siren that the family cat couldn’t, for whatever reason, flee. He was drawn, in spite of himself, toward the sound and the baby. When I placed Gabriel on the sofa, still wailing, the cat, who couldn’t successfully hunt a spider, made a lunge at his small, smooth head and left behind some scratches and the impression of a tooth.

So maybe we should have known that something else was afoot, that our trajectory had always been headed in a slightly different direction. But not long after this, the fits of crying subsided. And so: the seizures were gone, and the late colic was gone, and in their place came Gabriel’s first words. He began, unmistakably, to talk. The magic was there, the silvery presence of words, fast as fish. And it was impossible not to be beguiled.