This is part one of our epilepsy story. In case you are wondering, our daughter’s name is pronounced almost like “Erica” with a T.
* * *
If you had asked me on the morning of March 8, 2014, how to spell seizure, I would have had to think for a few seconds. Is it s-i-e-z-u-r-e? Or s-e-i-z-u-r-e? But I know how to spell seizure now. I also know seizure means “a sudden attack,” and a more fitting definition I’m not likely to find.
On that Saturday morning, I wasn’t thinking about seizures or spelling. I was thinking about breakfast as I sat at the table with the children and loaded baby cereal into Micah’s open mouth.
Around the corner of the table, Tarica sat chin-level with her bowl. “Mom,” she said, her spoon mid-air, “sometimes I can’t move my arm.” Tarica’s words barely registered with me, but the action that followed her words jolted me to attention. Her head dropped forward toward her right shoulder. Her left arm came up, bent at the elbow, held out from her body, and her clenched fist splashed into her cereal bowl and stayed there. She was looking at me from her sideways angle—no, she wasn’t. A chill grabbed my spine. She was looking through me, her eyes glassy and unfocused.
I half-rose from my chair. “Tarica! Tarica, are you okay?”
She didn’t move.
“Tarica, what’s wrong?” My words were harsh with urgency.
Her head came up, her hand came out of her bowl, dripping milk, and she began to cry. The spell was broken. She clambered into my lap; I held her, puzzled. What had just happened?
Jenica spoke from the other end of the table. “She does that sometimes, Mom. When we’re playing. She puts her arm and head funny like that. When I ask her what she’s doing, she won’t tell me.”
Odd. And the fist in the cereal. Alarming. I looked at Jenica. “Can you keep an eye on her today, and let me know if it happens again?”
“Sure, Mom,” with all the confidence of a firstborn daughter.
I helped Tarica wash her milky hand, and comforted, she gulped down her cereal and ran off to play. Throughout the day, Jenica and I watched for recurring episodes.
Late that afternoon, I said to Linford, “I’m worried about Tarica. She acted odd at the breakfast table, and Jenica said she’s done it several times since.” I described what I had seen that morning.
Linford looked at me in a way that made my stomach clench. “I saw her do the same thing last night, but I thought she was just being silly.”
“I might have thought that, too, except for the fist in the cereal,” I said. “Do you think she’s having seizures? What do seizures look like?”
“I don’t know.”
We stared at each other, as seconds flexed and stretched, taut as a bowstring. Fear thrummed its cold fingers in the space between us.
I did what any baffled mother will do. I called my mom. I called my mother-in-law. Maybe, probably, we concluded, it was seizures, but she was acting normal otherwise. No fever, no complaints. She ran around and played and was our sweet Tari just like always. Well, we would keep an eye on her and see what happened.
Sunday dawned, and with it, fresh concern. By the end of the day, we had seen ten seizures. None of them lasted more than 20 seconds, but the frequency worried us.
Monday morning, I called our pediatrician’s office and took the first appointment available: 11:30. Tarica had already had eight seizures by the time we saw Dr. Patel. We—Linford met us at the doctor’s office—explained what had brought us in.
“Yes. Umm-hmm. Yes, from what you tell me, she is having seizures,” Dr. Patel said, dispensing lollipops with a generous hand, his dark eyes earnest beneath the red bindi on his forehead. “She needs to see a pediatric neurologist, and the closest one is at the Children’s Hospital of Pittsburgh.”
Pittsburgh? Two hours away. And Children’s Hospital? Our niece had gotten a liver transplant at Children’s. Suddenly Tarica’s ten-second freeze-frames felt ominous. Gone were my hopeful illusions of a few simple tests done in a local doctor’s office.
Dr. Patel’s nurse contacted the neurology department at Children’s Hospital. The first available appointment wasn’t until the end of May. Dr. Patel said, “Take her to the ER at Children’s. They can’t turn you away and will admit her from there.” He typed some notes into his notebook computer.
I looked at Tarica and then touched the doctor’s arm. “Look,” I whispered. “Look at her.” The counter in my head clicked. Nine. My heart seized. This wasn’t going to disappear. We were going to have to live this one out.
Outside in the parking lot, Linford said, “We’ll leave for Pittsburgh first thing tomorrow. Pack up this afternoon and plan on going to revivals tonight. I’m sure we’ll miss some of the evenings, so we should go when we can.”
I drove home in a daze. Dr. Patel had said we would stay at Children’s at least one night. Tarica would receive a number of capital-letter tests—the only one I could remember was MRI. He had mentioned something about putting her on twenty-four hours of video surveillance. Facts and questions and fears jumbled inside me. The packing didn’t go well.
When Linford’s mom heard we were going to Pittsburgh, she drove out so she could accompany us. Micah needed to go with me, formula-hater that he was; an extra set of hands to care for him would be helpful.
Tarica continued to have seizures, and by the time we left for church, I had counted fifteen for the day. By bedtime, it was nineteen.
“It’s so baffling,” I said to Linford after we tucked the girls in. “Out of nowhere. Nineteen. When will it stop?”
We went to bed. In a bedroom on the other side of the house, the seizures didn’t stop, but we slept, fitful and unaware.
* * *
Read part two here.