A Birthday Gift from God

We open our eyes to mercies new every morning.

We open our doors to a world of created beauty.

We open our hearts to the truths in His Word.

We open gifts from God every day, gifts He pours out upon all people, free for the taking no matter who you are.

But sometimes, we open gifts that God wrapped especially for us, an unmistakable act of mercy that the Father tailored for our specific needs.

Yesterday Tarica opened a gift like this.

It’s a shame that it is a gift in the first place; it’s something no little girl should have to rejoice over. But because she is Tarica, a gift herself and well-beloved, she accepted it and acknowledged its Giver.

She had seizures on Saturday, Sunday, Monday. She had seizures on Wednesday.

But Tuesday? None.

She had a seizure-free birthday.

It was the best gift a loving Father could give.

Now. It’s your turn. Have you ever received an unmistakable act of mercy from the Father? It can be simple, unusual, common, or strange—mercy comes in all shapes and sizes. Please tell me about it. I want to rejoice with you.

A Sudden Onset, Part 4

This is part four of our epilepsy story. Read part one, part two, and part three here.

Where we are in the story now: It’s early, early Wednesday morning at Children’s Hospital of Pittsburgh. Tarica has been irrational, hallucinating, and fighting ever since mid-afternoon on Tuesday. We still don’t know why she is seizing.

* * *

Around 2 a.m., Tarica fell asleep. Linford and I lay down. My muscles shook, and my knee throbbed. Sometime in the last twenty hours, I had bruised it badly, probably while I was wrestling with our daughter.

Tarica woke with seizures throughout what remained of the night, thrashing and fighting in her bed, although she was more easily subdued than before. I stumbled between her bed and mine, and when Micah requested his breakfast before seven, I felt as if I had not slept at all. I fed him, amazed that I could still do this. Yesterday had wrung me dry in all ways but this one.

Linford and Tarica were sleeping, but they wouldn’t stay that way long if I turned Micah loose. I crept out of the room with him and my Bible to the window-enclosed lounge at the end of the hall.

Dawn was breaking over Pittsburgh. Micah pushed his nose against the glass, hands braced on the radiator, and watched the headlights track back and forth seven stories below us. I curled up on the slippery couch in the corner and opened my Bible. The words of Micah 7:7 jumped off the page: “Therefore I will look unto the LORD; I will wait for the God of my salvation: my God will hear me.”

I stopped reading and swallowed hard. I looked from the words of the prophet Micah to my son who bore his name to the wall of windows. The headlights and brightening horizon were unfocused blurs beyond the tears. My God will hear me, and He is my salvation. I could no longer see to read, so I prayed the sun up and my fear down until little hands tugged at my skirt and a parent holding a crying child walked in.

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As I returned to Tarica’s room, I thought about that parent’s weary face. Could the nurses tell at a glance which parents were still waiting for answers? Did we wear our shock and grief on our faces?

Tarica woke and demanded food and water, which we could not give. Her MRI, according to the nurse, was scheduled for 11:00. Linford’s mom returned and resumed care of Micah, so we could focus on Tarica, who did not handle her fast well. She begged and pleaded, bucking on the bed, for her sippy cup, for “eggies,” for anything, and I wept with the strain of saying “no, not yet, just wait, sweetie, I know it’s hard, just sleep for a little,” over and over again.

Under the influence of the drugs, her vision doubled and tripled. She looked at Linford holding Micah and thought her daddy had two heads and was holding three babies. When Doctor Katie came in to see how she was doing, Tarica, lucid for the moment, squinted at her. “One…two…three…four…five… six,” she said, the words blurred. She laughed. “You have six eyes.”

In the light of a new day, it became evident that the Fosphenytoin given to Tarica had created the nightmare. Her dose at two in the afternoon did not allow her to sleep until two in the morning. We requested that Tarica not be given that drug again. We could not survive another twelve hours of insanity. She was then put on a drug called Keppra.

My parents and sister arrived. Cassondra hugged me, and for a moment, I mentally sagged. Oh, to not be brave for just a little. Tarcia summoned up smiles for them, but they were shadows of her usual ones. I saw their tears at the sight of her hooked up to machines, eyes glazed and heavy.

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Around noon, the EEG wires were removed in preparation for the MRI and spinal tap. Sometime later, the MRI team came for Tarica. Linford went with her. Everybody else took Micah down the hall to the lounge while I lay down for a nap.

I had slept for maybe twenty minutes when the door opened, as doors frequently do in a hospital, and a nurse peeked in. She disappeared without a word, but the damage was done. I rose, took a shower, gratefully climbed into clean clothes, and went to find my family.

My parents and sister accompanied me to the cafeteria where I forced myself to eat a full meal, my first in a long time. We talked as I ate. “My greatest fear,” I said, staring past my father into an exterior courtyard dripping with rain, “is that her brain will be permanently damaged. What if—” I choked back tears and poked at my green beans. “What if she’ll never be our Tarica again?”

Nobody said anything for a long time. Micah jolted in his stroller where he was sleeping but didn’t awake. The buzz of the cafeteria faded, and we sat in a cocoon of silence.

We returned to the seventh floor and waited until Linford and Tarica arrived. She was groggy from the anesthesia and desperately thirsty. When I handed her a sippy cup, she drank without stopping until it was nearly empty. We discussed food and ordered it, giving her graham crackers while we waited for the food to arrive.

A woman from the EEG department showed up to reattach two dozen wires to Tarica’s scalp. It didn’t go well. We were running out of distractions, and the food inconveniently appeared after it was over.

The day fell away. My parents left, taking Linford and his mom with them. Cassondra stayed to help me with Micah, but she also occupied her still-distraught niece when my attempts failed.

That night, thank God, we all slept as well as can be expected in a hospital. The EEG captured continual seizure activity in Tarica’s brain, but she slept undisturbed most of the night.

To be continued, in part five.

Learning to Put Trust into Practice

We interrupt this broadcast to bring you an update from the current situation on the front.

* * *

First, you should know this: I am doing surprisingly well. Mostly, I feel incredulous. It’s like a badly written story in which improbable illnesses and accidents happen in rapid succession. To the same person.

God is good. I’m not sure how that truth applies to this situation, but I believe it.

* * *

I wasn’t planning on being tested so soon.

A few weeks ago, after that thunderstruck incident in church, I had decided that the next time I was faced with an overwhelming difficulty, I was going to focus on the grace and promises of God rather than on my feelings. That difficulty, of course, would likely be Tarica’s next hospitalization, so I had time to prepare and grow stronger.

Wrong.

On Sunday evening, Tarica fell off her bed. She has a platform bed, so she fell about three feet. Onto the elbow of her left arm. She said it hurt (that is so much an understatement, it’s nearly unforgivable). But she could move her fingers, and we couldn’t feel any dislocated bones or joints; so we gave her Tylenol and hoped for the best as we tucked her into bed.

It was a rough night. There were the times she was awake crying, and then there were the times she was crying in her sleep.

I hated digging her out of bed early the next morning, but it was my turn to take a vanload of children to school. I carried her out to the van in her pajamas and strapped her in. She huddled in her seat, her arm snugged next to her body, half-asleep.

Right after we dropped the children off, she gave a strangled cry. I looked back and saw she had toppled sideways and couldn’t get up, helpless as a fish on a river bank. I pulled off the road and climbed back to help her.

“Mom,” she said through her tears as I sat her up, “is it my left arm that has the seizures?”

My shoulders tensed. “Yes, it is.”

“I just had a seizure, and it hurts.” She sniffled. “How many days is it going to hurt?”

“I don’t know, sweetie,” I said as I got back behind the wheel. So that was why she couldn’t get up. Following a seizure, she often has what is known as Todd’s paralysis on her left side, a temporary loss of muscle tone and strength.

Tarica subsided and was asleep within minutes. Micah hummed to himself, thumping his heels against his seat, and I threaded our way home through the streets of Altoona and stewed.

How many times can a little girl be hurt? Was her arm broken, fractured, cracked, sprained? It was swollen and hot to the touch. What should we do next? Another decision to make.

Discouragement flumped over me, a wet blanket of despair. Don’t we have enough to deal with, God?

And with the thought of God came the memory of my resolve to trust Him. And with the memory came the verse “I will never leave thee, nor forsake thee.”

Discouragement whimpered in protest. I felt its weight ease a little.

Another verse popped up: “The joy of the Lord is my strength.”

My shoulders relaxed. Despair is a choice, not an inevitable conclusion.

I went home and called a doctor we know who is almost a friend—you know, the way doctors should be but usually aren’t. He has the equipment to take x-rays, and he allowed me to bring Tarica in right away. The x-rays revealed what might be a slight line through the joint, but it wasn’t definitive, what with the swelling surrounding the area. The doctor, not being an orthopedic, wasn’t comfortable with saying it looked fine.

“Take her home and put ice on it,” he said. “See how she’s doing in the morning. If she still is hurting and refusing to use it, you should get it checked out.”

By late afternoon, it was clear to me that Tarica was still in considerable pain. I rigged a sling from a dishtowel; that seemed to ease a bit of her discomfort. Then I called our pediatrician’s office and told the story. They said they would contact a local orthopedic doctor to set up an appointment. (Apparently, orthopedics accept patients mostly by referral.)

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When I put Tarica in bed last night, I surrounded her with large pillows to keep her from rolling onto her arm. She slept all night, and so did we, undisturbed. This morning, her elbow is still swollen and painful. She won’t use it, but at least she is eating today and a little bit braver.

I hope to hear from the orthopedic before too much time passes. Wishful thinking, but it would be nice to resolve this today.

Poor girl.

Today is her birthday.

A Sudden Onset, Part 3

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

Summary of the story so far: Tarica is in the ER at Children’s Hospital of Pittsburgh after having a grand mal seizure on Tuesday morning. We still don’t know why she is seizing repeatedly. It is now Tuesday afternoon.

* * *

The nightmare started as restlessness. What child wouldn’t be restless, stuck in a bed all day? Her brain was the problem, not her body. And she was hungry. She was thirsty. The IV—she picked at it, and I eased her hand away. I distracted her with a toy a nurse had brought in to entertain Micah, but it didn’t last long. She tried to climb off the bed, and when I pressed her back onto her pillow, she fought me.

“Can you grab her legs?” I said to Linford. “She’s trying to kick me.” I clasped Tarica’s free hand tightly so she wouldn’t yank out her IV line. With my other hand, I held her down on the bed while Linford cuffed her ankles in his hands.

A pair of neurologists came in. The CT scan looked clear. An MRI would provide a more detailed picture of her brain. I found it difficult to concentrate on their words; Tarica twisted and arched continuously under my hands.

The afternoon wore on. One of us—and sometimes two—sat beside Tarica, trying to keep her still and on the bed. She became disoriented. “Are we at Beth’s house? Are we at Sophia’s house?” she asked over and over again. “Who changed the room?” Her words became slurred, her thoughts murky.

When they wheeled her upstairs to the seventh floor, I sat on the stretcher, holding her, holding that determined free hand, one of my legs pinning hers down.

As we entered Unit 7A, she became even more agitated. I tried to distract her. “Look, there’s a frog on the nurse’s desk.”

The stretcher moved, and the frog disappeared behind a pillar. She nearly bucked off the stretcher. “I wanna thee frog. Where ith frog?”

I lashed her down with my arms. “Just wait. The bed will move again, and then we will see it.”

The bed moved; the frog appeared. “Look, there’s the frog.” She relaxed, but I couldn’t. What awfulness had invaded our sweet little girl’s brain?

In room 721, Tarica was transferred from the stretcher to a bed, more space to fight and thrash, enough room for one of us to lie beside her and hold her down. We learned the MRI wasn’t happening until tomorrow, so she could eat now. Now? When she was nearly insane and completely unreasonable? But starting at midnight, she could have no food or drink until after her MRI and spinal tap were done on the following day. She had to eat now.

Food arrived, and like the frog, it became a distraction of debatable value. She would cram a bite into her mouth with shaking hands, but then she would writhe and scream and try to climb off the bed.

The hallucinations began. Bugs crawled on the walls. She became hysterical—oh, her eyes, her eyes—screaming that a man was trying to get her. She reached out and tried to grasp hold of objects dancing in the air before her, or tried to bat them frantically away.

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Sometime in those unholy hours, she cranked her head my way. “Who are you?” she asked.

My mouth went dry. “Don’t you know who I am?”

“No,” she said, studying my face in a detached manner.

“I am your mommy.” I tightened my hand around hers.

She stared at me blankly.

Our Tarica was gone. In her place was a savage child. I held her against me on the bed, my arms and legs restraining her flailing limbs, and prayed. “God, please let her fall asleep. Please, God, please, oh, please.”

* * *

The hours bled into each other. I looked at the clock, but the hands said nothing that mattered to me.

A nurse came in, masked and gowned. Tarica was under isolation, according to a red sign hanging outside the door of her room. Sometimes a brain infection can create seizures, and until we knew if she carried something contagious or not, every nurse and doctor donned pale yellow gowns and masks before entering.

“Can’t you,” I said to the nurse, “please sedate her? She’s been fighting for hours, and she’s exhausted. We’re all exhausted.”

No, sedation isn’t an option. Just keep her as calm as possible.

I wondered what the nurse would do if we would throw our hands into the air and collapse. What would they do if we allowed Tarica to yank out her IV line, climb off the bed, rip the wires off her head? Would they find someone else to hold her down? Would they sedate her then?

One of the nurses—I cannot remember which one; all distinctive features except for eyes were hidden behind masks—was surprised when Micah babbled from the floor by the sofa. “Oh, I didn’t know you had a baby.”

Another nurse with familiar eyes said, “He’s been such a good boy, you’d never know there was a baby in here.”

Thank You, God, for one small blessing.

The evening blurred into night. We hung on grimly to our daughter. Micah fell asleep in his Pack-n-Play, despite Tarica’s ruckus, waking only at midnight. A quick feeding settled him again.

The hospital settled into the quiet hum of the wee hours, and still she fought. Despair clawed at us. How long would this last?

Tarica laughed, surprising us. “I thee…I thee…baby Jesus,” she said, reaching out her hand, lost to a world only she could see.

Linford and I looked at each other. The hours hung haggard on his face. “I can’t take this any longer,” he said. “If this is what she has become, maybe it would be better—”

I pressed my face against the gauze cap that covered the bristling wires on Tarica’s head. I couldn’t stop the tears.

* * *

The story continues in part four.

A Sudden Onset, Part 2

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.

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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.

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.

* * *

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.

When God Answers Prayer, Sometimes It Hurts

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.

Thank You

I am awed, amazed, astonished, appreciative—and that’s just the A adjectives—at the outpouring of grace I have witnessed in the last thirty-six hours. I read and thanked God for every one of your comments and assurances of prayers, even though I didn’t reply to them all.

Thank you. (It feels inadequate, but I mean it from the bottom of my heart.)

Some of you are friends; welcome here. Some of you are old friends; I hope to renew our acquaintance. Some of you are strangers; please don’t stay that way long. We are sisters on the road to Glory. Let us walk a few miles together and talk of what it means to grow and hurt and love and follow Christ.

Over the next few weeks, I’m planning on posting pieces of the epilepsy story, although there is no tidy summary at the end. This is a story we are still living.

With your prayers, you have made yourself a part of this story.

I can’t thank you enough.

The Connection Between Trust and Emotional Strength

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.