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 labwhere 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, anddrinking 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