Through the screen of epilepsy: On blessed moments

Three of us are perched on small plastic chairs with our knees butting into two semi-circle desks. Oversized, stuffed paper apples hang around the classroom; the kids have all painted their own, staples running up the sides. The sensory table is filled with unpopped popcorn, little spiders and toy pumpkins. It’s Friday, the teachers’ day without students. I’ve called in sick because I need to not rush this meeting, and I desperately need a sanity day.

“Did you ever consider a helmet for him?” his teacher asks.

I take a deep breath, look at Sally and look down. “When he was three, the very nice occupational therapist at Children’s asked me that. I had no idea it was coming, and I said no. But yes. We can consider that now.”

“Because,” says Sally, “when they go out to the big playground next year in Transitional Kindergarten, those play structures are high and he’s still having balance issues.” She wears a button-down cardigan. Lines of experience are etched into her face. I again mention he’s over-medicated, and this is why he’s wobbly.

Margaret, the teacher’s assistant, interjects, “Then he’d be protected and wouldn’t get a big bump like on the last day of school.”

“Yeah,” I say, “that bump lasted all summer.”

It was right in the middle of his forehead. They said he’d been chasing bubbles outside on the concrete, and he leaned over to catch one but then fell over into a seizure. His entire weight came down on his forehead into cement.

I think of all the playgrounds we’ve had to walk away from because he’s fallen into a seizure. The time when he found a little girl to play with and they followed each other down the slide giggling, then ran in a semi-circle back to the steps, up, down, around again. At one point when he was ready to slide again I saw his eyes pull off to the side. A second later he crumpled, eyes fully twitching, hands in fists, limbs jerking. That mom looked at me as I carried him away.

“Yes, I can get a helmet for him. I’ll talk to the neurologist.”

Sally, Margaret and I are having our first meeting of the fall. Finn’s in his second year of developmental preschool with them. I have questions about kindergarten readiness. They love him, I know, and we talk for an hour and 45 minutes.

This is what I find out: he’ll need to make good progress holding a pencil and writing uppercase letters. He never wants to do this. Crayons, pencils, markers: not interested. We all figure it’s his difficulty with fine motor skills which makes him hate drawing.

Sally and Margaret show me the student journals they do this year. They open one girl’s from last year. Big white paper held together by red spiral. The pages are all scribbles in highlighter strokes, pink, yellow, blue. Finn does the same when you say, “Let’s practice your name.” You take his hand, trace the “F” and he grabs the highlighter and scribbles long lines back and forth on the page. It looks like an anger painting.

It’s been a bewildering five years. Everything Marc and I have learned about this condition seems to have come in through the side door – the side screen door that creaks when you pull it and slams your heel as you step in. His first seizure was at seven months old, when he fell over in the living room and started convulsing. I held his jerking body, saw he was not at all with us, and very gravely said to Marc up the steps, “Call 911.”

We had dial-up Internet at the time. It was Sunday, March 20. Marc was on the computer, so he couldn’t call out. He frantically said “Where are the cell phones?” I barely used mine then, so I didn’t know. I started downstairs to go find a neighbor with a phone line.

In the driveway, I handed Marc the baby and rang a neighbor’s doorbell. They didn’t come fast enough, so I pressed on another. Marc was giving Finn mouth-to-mouth by then which we learned later was wrong. Our neighbor appeared in his doorway, startled, and I shouted, “Call 911!”

The seizure eventually stopped, and Finn fell into a limp sleep. The firemen had all arrived, and three neighbors stood clustered at the top of our living room steps. Marc and I were stiff and on alert, and the lead fireman, all crisp and clean, suggested we take him to Children’s.

Confused and wary, we floated in low-visibility ooze. When we got to the ER, we had to explain to myriad young doctor students: what did the seizure look like? How long did it last? Was he sick? Is there a history of it? We got endless explanations about seizures and epilepsy. The word postictal stood out.

They had us stay overnight, “to observe.” A neurologist was assigned to us. She came up with another young student assistant, and by that time Finn had woken up and seemed happy and bubbly again. Marc had gone home and returned. It was dark; our overnight bags sat on the side couch. The neurologist ordered a CAT scan and an EEG. There was some talk of what we might find on the CAT scan. Tumor sank in.

In his room, in darkness and the cold chill that is every hospital room, a young nurse came in and took great pains to attach four padded sides to his bed. The pads were heavy and gray. As each went up, the crib more and more resembled a cage. First she’d pull up the side of the bed and then slowly, without skill, get the pads in the right place. Rectangle, rectangle, four times. This was for, she explained, if he seizes in the night, he won’t hurt his head or fall out. Oh. Finn thought it was a game like any baby would.

The nurse finished and we were left alone in a drafty room. I tried to ignore the surroundings: sick children, ICU. I didn’t want to sleep. Marc gently snored. All I could think of was: what if he goes into another one? I stayed up sitting as close to him as I could, his little body in a cartoon-print hospital gown. Finally I realized I need to be OK tomorrow too so I allowed myself to sleep.

Did that second seizure ever come? Not that night but yes, many times over after that. We haven’t slept in the hospital again but we sure as hell had to bring him to the ER for seizures that wouldn’t stop, or the ones with fever that stop and start again. Status epilepticus. A very bad state.

So, through the side door. The doctor, the one we were assigned that first night, became our first neurologist. We didn’t find out until long after many appointments at Children’s that she wasn’t an epilepsy expert. Developmental preschool also came in sideways. Not being from Seattle, we didn’t know the elementary schools served kids younger than kindergarten. I really could’ve used this program when he was three and I quit work to be with him, when I could no longer take getting the call from daycare, “Finn’s having a seizure, 911 is on the way.”

Sally tells me, “He may need an aide after kindergarten – for his safety.” In spring, the neuropsychologist said the same thing, after four long days of testing. This time I’m not shocked when I hear it, since the shock already hit when the neuropsych said it in April.

We talk of his progress in not knocking things down. She says she wants to work with him this year “to be more purposeful” and “to finish things.” She says he does seem more alert, but his response time is still so slow. I readily blame the drugs for this.

We all know this kid is delightful, knows a ton of things and recites poems with perfect inflection from “Poems to Read to the Very Young.” He’s captured all our hearts. He has natural charisma and loves to laugh. He’ll always ask you to sing, and if you blow bubbles for him in the bath, you’re his ace, numero uno friend. He’s a not-quite-normal kid with a horrid, erratic disease playing freeze tag with his brain matter, memory and ability to reason.

“You know,” I say to them from my staticky plastic child’s chair, “Finn overcomes his condition every day.” I nod my head to these two good ladies, and my eyes fill up with tears, because I am really tired and I’m not myself anymore.

photo by Corinne Schwarz

And he does overcome it. You can see it in his little fingers putting each marble onto the round green launcher of his marbleworks, then shifting his body and wrapping his thumb around the yellow clicker. Thumb moves, and marble drops onto red ramps, one by one until it’s loud and swirly.

His impulsivity has been a huge problem, but it’s one step forward and two steps back with this kid. I go to the supermarket and see a mom with two little girls and all I can do is look on wistfully, through the screen. The littlest one sits complacently up in the cart, and the older girl walks slowly by her mom’s side, holding her hand, looking at crackers.

We go to Safeway, and Finn wants to tear ass down every aisle. He sees a button, he needs to push it. We ride lots of elevators. I accept this but errands aren’t easy. Finn seldom walks. We go to the park and he takes off down the meadow while I lock the doors. This is fine since it’s all grass. Grass good. Concrete bad.

He’s stopped being so aggressive with other kids, thank God, but I’ve had many a pick-up at daycare with the teacher solemnly telling me, “Finn scratched one of his friends today…” And then signing the incident note.

You can see him overcoming it in the way he wants to laugh over and over again when we goof with language. “I’m crackers about cheese, Gromit!” he’ll have me say, and he needs the arms moving with it too. Or, in his funny voice, lips barely moving for effect, “Uh-oh!” repeating the last lines from “Mousie Takes a Bite,” “The cat wants to taste something too!” He flashes imp eyes.

Every night before bed, he starts his CD at track five, “Puff the Magic Dragon,” lies down and positions himself to see the red number five in the dark. He then puts his forefingers together, and at each chorus when they sing, “Ohhh-ohhh, Puff…” he swings his peaked fingers side to side.

He overcomes his condition in the way he sleeps off the seizure every time, the way he always comes back to us after seizing and sleeping, after we’ve lost him to it each time. Seizures are real little deaths because as they tick away, you have lost your child and all you want is for him to come back, to please come back the way you just were.

Will he grow out of it? No one knows, and they all dance around that. The neurology nurse likes to say, “We don’t have a crystal ball…”

At night in his green room, below our sun and moon masks, I hold his beautiful head in my hands, his hair wavy, smelling of flowers. My lips at his crown. “God bless you, Finn,” I say as the last thing before sleep. “God bless you too, Mommy,” he returns, with perfect intonation, in his sweet five-year-old boy voice.

And we are blessed, in this day and mostly in this uncertain night, this night of threatened skills, and hopefulness, night of EEGs and red writing on his head, night of gray padding on metal hospital beds. I’ll take care of him for as long as I can. He is part of me. This is now part of me. It’s all baffling, but the three of us have each other. Softly, past his bedtime, my little one breathes off to sleep.

Blair Sweeney lives in Seattle with her family. She volunteers with the Epilepsy Foundation Northwest and the ARC of King County to promote epilepsy awareness. Blair grew up in Huntington, NY and raced sailboats on Long Island Sound in her youth. She has an MFA in Poetry from Brooklyn College.

7 Responses to "Through the screen of epilepsy: On blessed moments"

  • Terri says:
  • Karen Gellert-Valcourt says:
  • Chris says:
  • Karon says:
  • Mary says:
  • Erin P. says:
  • Shawa Hardy says: