The Storm Before the Calm

There are days when the chaos of our lives is my undoing, when it leaves me just wrung out and wondering how much more I can absorb or withstand. But then something happens that is urgent and concerning, and I just kick into the adrenaline overdrive that has me responding without thinking. And in its aftermath, I find myself almost chuckling about how predictable it all is. Of course things would turn out this way. This is how we live. This is just another day in our crazy, exhausting, inside out lives.

So what was the latest iteration of nutty chez nous? It all started with something that was genuinely worth celebrating. Now you might think that’s a major milestone of some sort — maybe a job promotion, a graduation, a mastery of some complex skill. Nope. It was brussel sprouts.

Our son Noah is a picky eater, as are many autistic people. Not infrequently, he talks about long ago experiences, which is how we learned that when Noah was at a special needs summer camp way back when, he not only ate watermelon (which he’d told us about often, and which we have since incorporated into his summer eating routine), but brussel sprouts. Brussel sprouts?!?!?! Son of a gun’s been holding out on us! How did I not know this?? An actual green vegetable? Not french fries? Not hot dogs? Not cookies???

So of course I fully intended to turn brussel sprouts into the new watermelon. Noah often helped me trim and wash brussel sprouts when I made them part of a meal I knew he wouldn’t eat, though I always invited him to. This time, I did the washing, trimming and serving. He sat with us at the dining table (also not typical), and I was just overjoyed. About six or so bites in, joy turned to something else. The veins on the side of Noah’s head started bulging and he was shaking violently. “He’s seizing!” I shouted at my husband. “We have to get him on the floor.” I yelled to my daughter to get pillows, and my husband and I managed to move Noah out of his chair and to the floor. For those of you wondering, a human can be tall and very slender, but heavy as stone if made of so much muscle, as Noah seems to be.

He continued to convulse, sweat beading all over his forehead, snot running from his nose, and blood pooling in and out of his mouth, staining his face, his shirt, and the pillows on which we made sure to place him, on his side, per seizure protocol. He seemed to be convulsing forever. “Call Ken,” I told my husband. “Ask him what we need to worry about if he doesn’t stop convulsing soon.”

Noah wasn’t responding to our verbal prompts, to his name, to our questions. Nothing. He was breathing heavily and still bleeding from his mouth. But breathing. I tried to take comfort in that, all the while panicking that we might need to take him to an ER, which I was loathe to do. And in my head shouting, “Damn it! Really? We might be spending the better part of the night in an ER and miss his brother’s wedding the next day?!?! WTF???” Because in our world, in the lives we’ve become entirely too accustomed to, it is perfectly normal for a crisis to bump up against something meant to be joyous, and to redirect us to that place of worry and panic which is where we seem to spend much of our time living.

Noah had bitten his tongue hard, which explained all the blood. He eventually did respond to our voices, and his sister, who’d had seizure-related training when she worked at the camp her brother attended, told us that she’d learned that using a familiar musical playlist can be helpful in bringing people out of and back from their seizures. So out came James Taylor and LOTS of Sesame Street songs.

Eventually, we cleaned Noah up and got him into bed. We gingerly gave him his anti-seizure meds, which Ken said was crucial, and which Noah took routinely in the evening. Then his dad and I took turns at his bedside until we felt he was normal enough that we could go to our own bed and try to sleep.

Off we went the next morning to his brother’s immediate-family-only waterside wedding ceremony. Noah slept through the entire thing, first on a wooden bench behind the lighthouse museum, and then on a couch in his brother (and now sister-in-law’s) apartment. It was utterly abnormal in its way, which is why it felt so familiar, and left us not even skipping a beat. Which my heart, at least, had done briefly, with anguish, the night before.