A Sudden Onset, Part 1

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.

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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.

13 thoughts on “A Sudden Onset, Part 1

  1. I can only imagine the fear that gripped you. Just reading this gives me foreboding feelings. Thank you for sharing; most of what we knew of your journey was info from others and there’s nothing like hearing it first hand. Your testimony of trust and acceptance in other posts is very encouraging to me. Makes me think of the song “Bigger than all my problems, bigger than all my fears, God is bigger than any mountain [seizure] that I can or cannot see.” He WILL be with you, no matter what! Prayers, Sylvia

    • That is a great song. Do you know what song has been going through my head this week? “Lead, Kindly Light”–especially the last part of the first verse: “Keep Thou my feet; I do not ask to see/The distant scene; one step enough for me.”

      My faith is feeble enough that I’d still like to see the next six months.

  2. A mother’s nightmare… I pray that surgery (as scary as that sounds) will cure her siezures. I am a mother of four children (ages 11,9,5, 1) and can only imagine your pain. May God be very near you!

  3. I remember your worried email to me that Saturday. Only the beginning of so many prayers and tears.

    And we’ll keep praying with you that this story will have a happy ending.
    Gina

  4. Stephanie- I am a mom of 3 young men, ages 25, 20, and 14 and live on a farm in east Georgia. I was lead to your blog via Home Joy. Even though we have never met, I have been praying daily for You, your daughter and family and will continue to do so. God is good and has a plan that he will see y’all all the way through. Just know you and yours are thought of and prayed for daily.

    • Welcome here, Ann. Thanks for introducing yourself. It moves me deeply that strangers are willing to pray for us–but I hope you stick around and become a friend. The prayers of friends mean even more.

  5. I know what it’s like to watch for seizures and I know how it wrings your mother heart to see your daughter suffer.
    I just found your blog this evening and couldn’t stop reading. So many things you wrote, I can relate to so well. The grief and disappointment of watching a healthy child’s health fail and then the sweet peace of surrender.
    The verse Jeremiah 17: 7 & 8 has become a favorite of mine. God be near you dear Mother! I’ll be praying for you.

      • In contrast to your young daughter with life ahead of her, my daughter was 21 when the first seizures hit. She was diagnosed with Neurological Lyme and eventually Dystonia as a result of the Lyme. Five years later we still struggle with seizures and health, but God has been so good to us, even though He chose not to give us the complete healing we begged for, He has always given enough little miracles along the way to show us He is perfectly aware of our needs.
        I believe our family has been blessed in unexpected ways because of sickness.
        Wishing you the best! Donna

        You can read her story here:
        http://lymewithpurpose.wordpress.com/

        • I was over at Andrea’s blog yesterday, marveling at her story. Lyme catches my attention, because our little guy got a bullseye rash after a tick bite this spring. We treated him promptly with three weeks of antibiotics, but a mother still worries, you know. God bless you and your family with grace according to your need.

  6. Pingback: A Sudden Onset, Part 4 | Stephanie J. Leinbach

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