This is part two of our epilepsy story. You can read part one here.

Part one, in summary: Tarica had started having seizures over the weekend. We took her to the pediatrician on Monday; he told us to take her to Children’s Hospital of Pittsburgh. We were going to leave first thing Tuesday, but things don’t always go according to plan.

* * *

Tuesday morning began early for me; my alarm rang at 5:40. All the packing I couldn’t do the previous afternoon had to be finished by 8:00. I made lists, filled suitcases, and by 6:45, I was nearly ready to wake the girls. I was in the kitchen making coffee when Jenica hollered from the girls’ room. “Mom! Mom! Something’s wrong with Tari!”

I raced up the steps and into their bedroom. Tari was strung out across the bed, arms and legs splayed. Eyes rolled up out of sight. Making odd little hiccupping noises. Grey. Convulsing.

“Tari! Tari, can you hear me?” I climbed onto the bed beside her and laid my hand on her chest, felt her galloping heart. “Tarica, baby.” Her breathing—was she breathing? “Oh, dear God, no. Jenica, get Dad.”

She bolted off the bed. Seconds later, Linford flew into the room. What happened next? I cannot say. Terror blurred my senses. Her breathing stopped, and our world with it. I ran for the phone, praying incoherently, and dialed 9-1-1.

While we waited for the ambulance, Tarica regained consciousness but was unable to speak. Linford held her as if he would never let go.

“Who’s going with her?” I asked.

“You are,” Linford said. “You want to.”

“I can go, but I should feed Micah before I leave.” He had awakened amid the hubbub.
Someone—Mom—had gotten him out of his crib, and he was crawling around peering up into our faces. I perched on the sofa, coat on, and nursed him. As he finished, the ambulance came. With a final kiss and squeeze, I gave my baby to Mom. Tarica was loaded up, I jumped in next to her, and we left.

Tarica had five short seizures on the way to the hospital. She was able to talk between seizures but seemed confused. However, when the driver tapped his siren, she had recovered enough to smile.

At Altoona Hospital, the EMTs wheeled Tarica into an ER cubicle. I gave information to various people coming and going. Tarica would need to be transferred, they said. To Children’s Hospital of Pittsburgh. By helicopter.

I relayed this information to Linford by phone. “She is still having seizures, the short ones like she’s been having,” I said, “but she has stabilized.”

“She’s not flying to Pittsburgh. That’s not necessary,” Linford said. “Do you have any idea how much that would cost?”

The doctor stepped into the room. “The flight crew has been alerted,” he said. “You’ll be leaving shortly.”

Into my other ear, Linford said, “Don’t let them fly her.”

To Linford, I said, “Why don’t you talk to the doctor.” I held out the phone. “Here, my husband wants to talk to you.”

The conversation was short. With a tight face, the doctor shoved the phone back at me. “I’ll cancel the flight. She’s having multiple seizures, which can be a serious medical emergency.” Guilt trip delivered, he spun on his heel and stalked out of the room.

We waited. An ambulance crew was notified and would be coming for us soon. At home, Linford finished the packing and stopped in at the ER to see us before he left for Pittsburgh. My mom swung by the hospital with Jenica on the way to school. Our brave six-year-old, who had to sit in school as if her world hadn’t been shaken up. The sisters hugged each other good-bye.

The ambulance crew came and transferred Tarica to a stretcher—reassuring me as they did that a helicopter wasn’t necessary—and within minutes, we were on the road. As we passed a McDonalds, I realized I had not eaten that morning. Neither had Tarica. It was—I looked at the clock—nearly ten. We would be starving by the time we reached Pittsburgh.

As we drove, the seizures continued. Tarica fought sleep brought on by the anti-seizure medication she had been given. We were 20 minutes from Children’s before she drifted off.

At Children’s, Tarica was taken to a room in the ER, and we were promptly set upon by a series of nameless faces who asked for details and disappeared as suddenly as they arrived. Linford and his mom found us, bringing Micah and a bag of MacDonald’s food with them. I was too keyed up to feel hungry, but I ate anyway—if I didn’t eat, a little boy’s food supply would be threatened. I hid the food from Tarica, who needed to go for an MRI with an empty stomach.

Tarica begged for food and water. I slipped her a few ice chips guiltily. A doctor appeared and informed us that the neurology department had been told of Tarica’s arrival and a neurologist would be down after a bit.

More medical personnel arrived to wheel her off for a CT scan, for which our cooperative little girl did not cooperate. They wrapped her up like a burrito and wedged her head between two cushions, but when they slid her into the machine, she wriggled like a caterpillar and screamed. “I want my Pooh blanket,” she wailed, and I left briefly to pass the request along to Linford, who said he’d need to retrieve it from the van. When I returned blanketless, the technicians looked politely harried.

“Daddy is going to get your Pooh blanket,” I told Tarica, but she had decided that she was thirsty now. She screamed and bucked and broke my heart, but at last she quieted—out of exhaustion, no doubt—long enough for the scan to happen. Back in the ER cubicle, her daddy handed her the precious blanket, warm and fuzzy consolation.

After a long wait, EEG technicians arrived and began gluing wires all over Tarica’s head. A camera was brought in to record her actions in connection with her seizures. After a seizure had been captured by the EEG, Tarica was given a dose of Fosphenytoin (Dilantin), a longer lasting anti-seizure medication.

* * *

We thought it hard enough to watch our daughter seize, but the nightmare was just beginning.

Read part three here.

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.

Brain surgery is not something one goes into carelessly, particularly when it’s your child at the end of the knife. We have been praying and praying, God, show us what to do. Help us make the best decision for Tarica.

Yesterday, God showed us the way, and it is both a relief and an ache.

Tarica had a seizure in the van right before we left for our appointment in Pittsburgh. I was not there, but Linford told me it was longer and more violent than usual.

At Children’s Hospital of Pittsburgh, we met with the doctor and talked about options. “Your daughter has a less than 5% chance of living seizure-free on medication,” the doctor said. “Once a patient has failed two medications, there is little gained by trying a third, fourth, or fifth.”

Brain surgery, he said, is Tarica’s best hope of living a seizure-free life. Not that it comes with a guarantee. She has somewhere between a 50-90% chance of being seizure-free after surgery. No, not a guarantee, but better than her chances on medication.

He laid out what we could expect if surgery happens, a tsunami of information. I had about reached saturation point when Linford made an odd noise. I turned to see Tarica seizing on his lap, her limbs stiffening and convulsing in turn, her eyes unfocused and fluttering. Linford laid her on the exam table, and the three of us hovered as the seizure went on and on and on.

The doctor mentioned getting Diastat (an emergency drug used to stop a seizure that won’t quit), but just then, her body went limp and she began to cry. Linford gathered her up and soothed her.

“Her seizures are getting longer and harder,” I said to the doctor. “Will they continue to grow worse?”

“Yes, they will,” he said. “Her seizure focus (the place in her brain where the seizures start) will grow, and she may develop a second focus.”

Tarica wanted me to hold her. She curled up on my lap and fell asleep, exhausted by the seizure. I felt nearly as tired as she. I have grown accustomed to seizures since March, but this one—this one scared me. This one was the worst I’ve seen yet, other than her tonic-clonic (grand mal) seizure.

If I questioned the wisdom of surgery, that seizure removed all doubt. Unless something changes, the seizures will eventually swallow up her life, and our bright, sweet daughter will be lost to haywire electrical surges and exhaustion.

We are moving ahead into Phase One of surgery. This phase will determine if she is eligible for surgery. It means a ten-day hospital stay, during which she will undergo a series of tests—EEGs, MRIs, PET scans, SPECT scans, and maybe some others I can’t remember. If these tests reveal the seizure focus, she will be eligible for surgery.

Two-thirds of those who enter Phase One do not qualify for surgery. Nothing is certain yet, and nothing is scheduled either. It will likely be a few months before anything happens. In the meantime, I watch Tarica more closely and reacquaint myself with the emergency drug, just in case.

She has not had one of those violent seizures today. I do not presume to know the mind of God, but perhaps He allowed those seizures to occur yesterday so that we could move ahead without doubt.

If only I could erase the memory of my daughter in the grip of something terrible.

Last Sunday, I was thunderstruck while sitting in church.

And here let me pause to say that thunderstruck is such an interesting word, especially because, in the literal sense, it cannot be true: Thunder cannot strike anyone. Figuratively, it means to be astonished or astounded.

It’s not unusual for me to be thunderstruck in church. Usually, it means that some great spiritual truth has confronted some great spiritual need in my life, and I see a problem in a new light—that is, the True Light.

Back to last Sunday. We were reading from Jeremiah 17. Verse 7 says, “Blessed is the man that trusteth in the LORD, and whose hope the LORD is.” In verse eight, it says that this man who trusts and hopes in the Lord is like a tree on a riverbank that does not fear the heat because its roots are well-watered. Even in a drought, this tree stays green and does not “cease from yielding fruit.”

I stopped. I reread that last phrase. Hmm. According to this verse, a person who trusts in the Lord will keep producing fruit in a time of hardship. I frowned as thunder rumbled in the distance.

Seven months ago, our four-year-old daughter had been diagnosed with epilepsy. Initially, we believed we could control the seizures with medication, but she was seizure-free for only two months. She was now on three medications and seizing multiple times a day.

The diagnosis had devastated me in ways I had not known possible. The grief, the pain, all the unknowns piled up on me, becoming a weight I staggered under. I was exhausted and overwhelmed all the time. I lost my joy and my interest in life, and my family suffered because of it.

In the drought, I ceased yielding fruit.

Which means—oh, I could not bear the thought—but I had to face the truth: If I had been truly trusting in the Lord, I would have produced fruit regardless of the season. The fruit I should have had was of the Spirit: love, joy, peace, long-suffering, gentleness, goodness, faith, meekness, and temperance. Had this fruit been in my life in the last seven months? Maybe a few shriveled apples clung to the lowest branches, but for the most part, the drought had stripped the boughs of their harvest.

But what about grief? Was it wrong to hurt when my daughter had seizures in public and I saw her shame? Did I sin when I was overwhelmed and joyless? Those feelings were real. What was I supposed to do with my pain? Ignore it? Pretend everything’s fine? I wasn’t choosing to feel exhausted; it was a byproduct of stress and grief.

But God’s Word said I should still bear fruit, regardless of hardship. How could this be possible? What could I have done differently to avoid the spiritual barrenness of the last seven months?

Still frowning, I read the next verse—and that’s when the thunder struck: “The heart is deceitful above all things, and desperately wicked: who can know it?”

God has not assembled His Words randomly. In a flash, I saw a connection between these verses.

The man who trusts in the Lord does not listen to his deceitful heart.

The heart—the place from which our emotions spring. My heart—that said, This is too much to bear. Instead of drawing from the river of Living Water, I had stood thirsty in a sandstorm of emotions.

God doesn’t ask His children to do the impossible—or if He does, He gives grace enough to accomplish it. What had I done wrong these last seven months?

I had not read my Bible enough. I had prayed. And prayed. And prayed. An ocean of words, a river of pain, I unleashed it all at God. But I had not stopped to let Him talk to me. This, I believe, is part of what God means when He said, “Be still, and know that I am God.” I needed to let Him speak to my heart through His Word.

I had not trusted God enough. I wanted to understand why, to see how, and to know where we were going, but my questions went unanswered. This caused my faith to waver—no, to crumble. My doubt said to God, “Explain why, and then I’ll trust you.” God is Almighty; He doesn’t have to explain.

I had expected too much of myself. The seizures had returned mid-July and escalated over the next few months, the worst of it occurring over our usual late-summer craziness, when food preservation and school preparation and before-it-gets-cold activities cram every waking minute. I don’t regret my full freezer and shelves of canned food, but it’s unrealistic of me to expect I can do all that without facing some consequences. Already wearied by the stress of epilepsy, I had little reserve and stamina. In a culture where food preservation is right up there with godliness, it’s hard to lower my expectations, but I should have.

Was I sinning? I don’t think so. However, if I stayed in that slump of joyless pain, refusing to partake of God’s goodness, then yes, I would be. Because we are frail children of dust, susceptible to grief and suffering, God does not judge us for hurting long and healing slowly. He may not be so merciful if we turn away from the strength He offers time and time again.

Even with this thunderbolt pinning me to the church bench, I still have much to learn. I don’t have all the answers yet and perhaps never will. This frightens me. Another test is coming up.

On Monday, we have an appointment with an epileptologist to talk about brain surgery.

* * *

For the beginning of our epilepsy story, go to A Sudden Onset, Part 1.

To read about our experience with Phase One of brain surgery, start with this post.