When my son Arie was three days old, I held him very close and felt a sudden, all-consuming hatred for the first girl who would ever break his heart. Utter fury and loathing for a girl who possibly hadn’t yet been born.
This irrational and pointless fury revisits me often in the face of things I can’t control: the moron who nearly hit us in traffic, perilously close to his car seat; stupid little bullies on the playground; imagined perverts skulking in the park.
It never occurred to me that the monster neither he nor I could control was lurking inside his brain: specifically, his basal ganglia.
Arie’s birth was not easy; even before labor began in earnest there was meconium in the water, a sign of pre-birth trauma. (Any child who had me to look forward to as a mother, I joked to my friends, was bound to be traumatized.) As labor went on—and on, and on, and on—his heart rate rebounded more and more slowly until finally we decided to have a C-section. His APGARs, whatever the hell those are, were tens, people in scrubs told us, so no worries. Everything came out fine.
And everything was fine, although as he got older he sure did seem to dedicate a lot of his life to irritating his parents. “That’s annoying,” I told him more often than I can count. “I will not read any more if you keep snorting.” Fake coughing, I told myself, was something he did for attention.
When he started squeezing his eyes shut over and over again, I thought he was learning how to make sunbursts, and he was just really, really into it. When he had to do things in a certain order every single night and completely lost it in the face of any change of routine, I thought he was just trying to gain control of his world in the only way a kid could. I didn’t even notice the shoulder shrugging, head cocking, wrist twisting and eyebrow twitching.
Then he started making this face.
This eye-rolling, tongue-sticking-out, lip-twisting face.
I made it back at him.
“Why did you make that face?” he asked, astonished.
“You silly,” I said. “You just made that face.”
“I did not,” he said, genuinely surprised. “I did not make a face.”
And then he made the face again. And again. And again and again and again and again. In the middle of talking. Of singing. Of chewing. One morning, he made it so many times he couldn’t stop enough to eat his breakfast.
I am not sure I will ever forget the moment that Jan and I stared at each other across the table, watching our son grimace and grimace and grimace. The Something Is Wrong stare. It felt horrifying, but also tedious and unreal: like I was watching the Concerned Parents on a Hallmark special.
We looked up “childhood tics.” Dr. Spock was most reassuring: “Childhood tics crop up from too much family pressure. So, this is your fault. Don’t worry about it though, because if you worry about it even subconsciously, you’ll make it even worse. So relax! And stop being such a shitty parent.” Or words to that effect.
Brazelton was positively chilling in his casual disregard: “Oh, kids freak out a lot,” he said. “Ignore it and go have a drink, you friggin’ clenchbutt.” Except more like how Mr. Rogers would have said it.
Instead, I went online and looked up “Tourette’s.”
And I read a perfect description of my child. The snorting. The blinking. The shrugging, the grimacing, the waxing and waning of symptoms, the age of onset. On and on. My son.
His doctor saw immediately that something was wrong and suggested I take him to a pediatric neurologist. Specialists are too busy and important to see your child in any sort of timely manner, so now we get to wait for a month. While Arie’s symptoms multiply. While we explain to friends, family and teachers what we think is going on, and while we tell them to stop hoping for a negative diagnosis—something is wrong with our child; the question is what name to put to it. All we can do is pray that it is not something dangerous.
Something is wrong with our child, and it is utterly beyond our control. But I can’t find it in me to be angry this time—all I have room for is fear, and love, and hope.
Haddayr Copley-Woods, a writer and graphic designer, works and lives in Minneapolis’ Powderhorn Park neighborhood.
