Hope, Emily Dickinson said, is the thing with feathers that perches in the soul.

I think she might be right. When my hope flutters into sight, it looks remarkably like the Carolina wren that sat on my wind chime yesterday and bubbled a song to me through my kitchen window. That wren looked too fat to fly and too ordinary to be beautiful, but nobody had told it this—so it flicked its tail and sang and flew, so beautiful it made my heart hurt.

Hope makes my heart hurt. My hope flies and soars, its song filling my sky, but I hurt with the song because I fear the day I will learn my hope is too fat to fly. I fear the loss of this buoyant hope.

The mother of another little girl with seizures told me it is easier to not hope. Don’t expect miracles from the latest drug. Don’t get too excited over one or two seizure-free days. Just take one day at a time, and don’t expend too much energy in an unknown future.

She has had years of seizures to learn this, and I see why she said it. Far better to live the day we are given than to yearn for a seizure-free someday at the expense of enjoying today. At the expense, too, of falling apart when hope does not materialize into reality.

But my hope will not die. As long as options still exist, as long as there is something we haven’t tried, my hope insists on singing. But as long as there is hope, there is also fear, because what if—what if?—my hopes are crushed? What if Tarica does not qualify for brain surgery? What if the seizure focus is in an inoperable part of her brain? What if the surgery is not successful?

What if I fall apart?

Against the odds, against my better knowledge, I hope my little girl has a seizure-free future. And now, more than ever, hope sings loud. The day of revelation moves inexorably closer.

We have a date for her hospital stay. For ten days in the beginning of the February, Tarica will undergo an unrelenting series of capital-letter tests, which will decide whether or not she qualifies for brain surgery.

Hope looks as foolish as a baby King sleeping in a manger. But without that King, hope is foolish and feeble and as short-lived as a wren song. There is earthly hope, the hopes for a sunny day, a medical miracle, a good marriage, a better job—the feathered, nomadic hopes we all have. And then there is divine Hope, which is the King Himself. Joel 3:16 says, “The Lord will be the hope of his people.”

I cannot help but hope for my daughter, even if it means I might be setting myself up for a shattering. My King sees each sparrow fall, so I’m going to trust that if my hope plummets songless from the sky, He will see and will tend to my wounds.

He is the only Eternal Hope in a world of fragile, feathered ones.

Disclaimer: I hesitated to post this because of the ways it could be misunderstood. I am simply telling a story about one attempt of mine to seek God’s will. I would not dare to prescribe the lessons I learned to anyone else, nor would I declare that God is limited in the ways He can speak to us. Just as a wise parent relates to each child according to the child’s needs, so God relates to each of us differently, in ways that will best help us grow.

* * *

I hate drugs.

Yes, I know. I said that before. Forgive me for repeating myself.

When we came home from the hospital in March after receiving the epilepsy diagnosis, we brought back a wildcat, not a daughter. Linford carried Tarica inside and set her down, and she immediately began staggering around in wild circles, kitchen, dining room, playroom, living room, over and over again. She wore a fixed smile that, paired with her empty eyes, gave me the shivers.

Tarica had changed, and I knew what to blame: the drugs.

I began researching alternatives, specifically the ketogenic diet. What I learned discouraged me. Tarica was the champion of picky eaters, and this diet consisted of many foods she would refuse to eat.

But still. What if? Wouldn’t it be wonderful to take her off drugs?

And then Gina emailed me about a giveaway happening over at Michelle Beachy’s blog. Michelle’s cousin Esther Yoder had just published a cookbook called Nourish. All the recipes in the cookbook were based on the low glycemic index diet, a modified and less strict version of the ketogenic diet, which Esther had used as a form of seizure control for her daughter.

I read the giveaway post. It contained the story of another four-year-old girl who had seizures, although she had absence seizures instead of complex partials like Tarica. Absence seizures are brief losses of consciousness, usually lasting only a few seconds and sometimes occurring hundreds of times a day. It’s a type of childhood epilepsy and almost always outgrown, but imagine the restrictions a child would have to endure if she might randomly lose consciousness at any time. Schooling is also difficult for children with absence seizures because they miss so much as their awareness comes and goes.

Like Tarica, this little girl’s personality had changed on the drugs. In addition, the medications were not preventing her from seizing. Their neurologist suggested that Esther put her daughter on the low glycemic index diet. Within a year, the little girl was seizure- and medication-free. Esther then compiled all the recipes she had developed into a cookbook that could be used to help parents of other children with epilepsy.

Parents like…me.

At first I thought, No way, not now. It’s too complicated, too soon. We’re still recovering from the hospital stay, still adjusting to the diagnosis.

And then I remembered the gestational diabetes I had had during most of my pregnancy with Micah. What if God had allowed me to be diabetic to prepare me for a bigger dietary challenge?

But what about Tarica’s pickiness?

But nothing is impossible with God.

But would God speak through a giveaway?

I had to know. The doctors were not recommending the diet for Tarica, and at that time the drugs were controlling her seizures. But maybe if I knew, maybe if God would give me A Sign, then I could push to put Tarica on the diet. All I needed was enough faith, and God would heed my prayers.

I entered the giveaway. When another giveaway for the same cookbook popped up online, I entered that one, too. If I won, it would be a sign that the diet was right for us. If I didn’t, then the diet wasn’t for us.

But something didn’t feel right about it, and when Gina started making cautious noises of “don’t rush it” and “give yourself time” and “surrender,” I alternated between bristling and wincing. All I wanted was to know, and yet—was this the best way to discover God’s will, to force God’s hand with a randomly generated number? But didn’t Jesus say “Ask, and it shall be given you”? What was wrong with asking?

I prayed. I considered the words of my friend. I considered the words of my Lord. I prayed some more.

A day or two before the results of the first giveaway were announced, I realized two painful truths about me.

First, I was assuming too much responsibility. What was I going to do—arrive at the doctor’s office and announce that God had told me to put Tarica on the ketogenic diet? What about my husband’s opinion and wishes? I was trying to make family decisions that weren’t mine alone to make. I hadn’t even consulted my husband in this latest scheme. God will not bless choices made outside His already revealed will, and this I knew from His Word: I am to submit to my husband.

Second, I had a problem with my patience, specifically that I had none. I wanted answers now. I wanted to know which direction to take. We could count our time with epilepsy in days, not months or years, and still I had to know now. “Be still,” God says. “Wait. Know that I am God.” Instead I wanted most, not to know God, but to know where and how and when.

I surrendered. I told God, “No matter what happens with the giveaway, help me not to run ahead of You. Reveal Your will as You see fit, not according to my plans and schemes.”

I won neither giveaway, and I felt an enormous sense of relief. It would have been nice to own a copy, yes, but I was done finding divine direction in whether or not a certain cookbook belonged to me.

That surrender was the first of many, as the seizures returned in July and we began a series of drug adjustments and changes. Through it all, I tried to remember the lessons I had learned back in March: Don’t run ahead of God. Wait. Pray. Listen to others, and pray some more.

About a month after the seizures returned, we had guests over for Sunday dinner. That afternoon, one of the guests handed me a gift bag and said, “I don’t know if you heard of this, but I thought you might be interested in it.”

I opened the bag and pulled out Nourish.

A Sign? Oh, yes. Absolutely. A Sign of God’s love. Nothing more.

But it was everything I needed.

This is the last of the updates, this one from October, with a November update tacked on the end. If you’ve read all the portions of her story, some of this information may not be new, but it reveals the order in which we learned what might come next.

October 20, 2014

I’m not sure who hates blood work more, Tarica or her mother. This time, at least, she didn’t scream and fight. She looked at me as the syringe filled red, and her eyes sheened with tears, but she stayed calm. She’s learning to accept the needles that come with the drugs. A number of AEDs (anti-epileptic drugs) require routine blood work to ensure the drugs are not destroying the body while protecting the brain.

Her Carbatrol levels were low, so we increased it, with three seizure-free days following. By this time, I no longer had much hope in it lasting, so the return of the seizures on the fourth day did not devastate me.

Over this time, Tarica began having two distinct types of seizures. One of them was close to the original kind: Her arms extend stiffly, sometimes flexed, sometimes not; her head tips forward and to the side; her breathing deepens and quickens; her eyes glaze over and blink spasmodically. The other kind of seizure scares us: It has all the characteristics of the first kind, but it’s longer and her whole body spasms and she loses her balance and crashes to the floor. Or down the steps, as she did once. If only she had enough warning or presence of mind to protect herself from injury.

At a doctor appointment on October 13, I discussed options with Dr. Thakkar. Tarica has officially failed two medications—meaning, two medications have failed to suppress the seizures. Once an epileptic has failed two medications, she has a less than 5% chance of gaining seizure control with drugs. Because of these low odds, doctors recommend seeing if control can be gained through other means. These options include the ketogenic diet, VNS implantation, and brain surgery.

However, Dr. Thakkar wasn’t quite ready to cry uncle. She had one more drug she wanted to try, a “big gun,” she called it. “If Depakote doesn’t stop the seizures, then it’s not likely any other drug will either,” she said. “Let’s try it, and in the meantime, I recommend you meet with Dr. Gedela. He works with patients like Tarica, and he’ll tell you what he thinks you should do next.”

Apparently, she wasn’t putting much faith in Depakote, no matter how big the gun, if she wanted us to explore our next step.

Our next step. I wonder where it will take us. For several reasons, Tarica will not likely be put on the Ketogenic diet. This leaves VNS implantation and brain surgery. At this point, brain surgery is our best option, although Tarica will need numerous tests to determine if she qualifies for surgery.

In the days leading up to the start of Depakote, Tarica had three to seven seizures during the day. When we added Depakote to her regimen, we saw little change in seizure frequency. Perhaps it will take a while for the drug to build up in her system. Or perhaps it won’t work at all.

We found one blessing in this drug switcheroo. With the change from Tegretol to Carbatrol back in August, she became someone nearly like our Tari again, the Tarica-not-on-drugs we miss so badly. She pays a price for this: The Carbatrol gives her daily bellyaches, sometimes lasting most of the day.

As of today, October 20, Tarica is on three drugs and has at least three seizures a day. I am working at weaning her off Keppra; we have little evidence it’s been effective. Once she is off Keppra, some of the remaining behavior problems and mood changes—known side effects of Keppra—may disappear. Sometime this week, Dr. Gedela’s office is supposed to set up an appointment for us to meet with him.

This morning while getting ready for school, Jenica said to me, “Sometimes my friends scare me when they breathe heavy. I think they’re having epilepsy.”

I laughed, even though it wasn’t funny. “I know exactly what you mean,” I said. “When I see a child put his head to one side in an odd way, I think he’s having a seizure, too.”

Linford said the other day, “I can’t figure out why I’m always tired. Maybe it’s because of the ongoing stress of Tarica’s condition.”

When one member suffers, the others suffer, too. This is what it means to be family.

* * *

Read When God Answers Prayer, Sometimes It Hurts for an account of our visit with Dr. Gedela.

* * *

And a final update for today, December 1:

Tarica is weaned off the Keppra. She is still on Carbatrol and has had the Depakote increased, but she still has seizures nearly every day, numbering from one to six. This does not include her nighttime seizures, but since she sleeps through most of them, we are rarely up to count them.

Although it doesn’t seem like much improvement, she is doing better. She has an occasional and random seizure-free day, but unfortunately, we don’t know until bedtime that it’s a day worth celebrating.

Nearly all her seizures now are like the one she had when we were with Dr. Gedela. If she is standing, she falls over, and her whole body convulses.

Children’s Hospital has not yet opened their 2015 calendar for scheduling, but once they do, we will have a date for Tarica’s hospital stay. This will be the ten-day stay with all the tests that will determine if she qualifies for brain surgery. Or not.

I have no idea how to pray, so I have come to this: Lord, Thy will be done.

Will you pray this with me?

This post covers the six months following Tarica’s epilepsy diagnosis. It was written back in September, so when I say “today,” I’m referring to the day I wrote it.

* * *

September 8, 2014

Six months have passed since that Saturday in March when Tarica put her fist into her cereal bowl. She continued to seize for several weeks after her hospital stay, but the seizures dwindled in number and eventually disappeared. We—her mother most of all—struggled to accept the child she had become on the anti-seizure medication.

In the early days following her diagnosis, the drugs made her so tired she was sleeping up to seventeen out of twenty-four hours, more than her baby brother slept. After some adjustments to the dosage, the sleepiness dropped to a more acceptable level, although she was still noticeably drowsy.

She had been an easy child, but no longer; this Tarica was more aggressive, more volatile, and more irritable, common side effects of anti-seizure medication. The day after she came home from the hospital, I saw for the first time what would become normal: She and Jenica fought like alley cats. Prior to epilepsy, Tarica had been too laid-back to stand up to her big sister.

I grieved the change in Tarica as much as I grieved the seizures. Between the seizures and the drugs, we had lost the girl she was supposed to be, and on the worst of days, the grief felt as real as a grave.

But the seizures were gone. If this was the price of living seizure-free, then so be it.

We spent May and June in relative calm.

Mid-July, the seizures returned. One, at first, followed by a second one a few days later. Eventually, they were occurring once a day, and I called the doctor. Over the next several weeks, we increased both her Keppra and Tegretol doses. The seizures kept coming until we were seeing them two and three times a day.

Dr. Thakkar prescribed Klonopin as a bridge medication for two weeks. This drug is so strong it can only be used for a short time. Dr. Thakkar hoped the Klonopin would suppress the seizures long enough to allow the Tegretol and Keppra to take hold. However, we saw no difference when she was on the Klonopin; in fact, the seizure frequency was escalating.

Near the end of August, Dr. Thakkar changed the liquid Tegretol to a slow-release capsule version of Tegretol called Carbatrol. This time, we saw an almost immediate effect on the seizures. Within days, Tarica was down to one seizure a day, and on August 31, we celebrated her first seizure-free day in over a month. Four more days followed, all with no seizures. I couldn’t believe how much lighter I felt. Gone was the watchfulness that had dogged my steps.

On September 5, the seizures returned. Three happened that Friday, followed by three on Saturday, one on Sunday, and two on Monday—today—so far. When she heard the seizures were back, Dr. Thakkar instructed me to take Tarica for bloodwork to check her drug levels, which I am planning to do tomorrow. If the levels are low enough, we will increase the Carbatrol.

Maybe that will be the answer.

The story continues in part two.

I hate drugs.

Yes, I have a daughter who is able to function because of two powerful drugs, but I still hate them.

When we drove home from Children’s Hospital of Pittsburgh that day in March with a bag of prescription drugs beside me and a daughter seizing behind me, I kept rolling options around in my head. The neurologists and my reams of paperwork both mentioned a diet known to control seizures in some children. I decided to look into it. Maybe we could put Tarica on the diet instead of the drugs.

When I researched the ketogenic diet, I learned that it was strict. Strict as in, weigh every gram of food. Strict as in, measure the carbohydrates in the toothpaste. I learned that the diet was high in fat, low in protein, and virtually nonexistent in carbohydrates. As I read, my heart sank. (I know that’s a cliche, but honestly, it best describes my feelings.)

I saw we had a problem.

When our first child was born, I intended to teach her—among many other idealistic goals—to enjoy a wide variety of foods. As soon as I started her on solid food, she slurped up pureed peas and beans and squash as if they were candy. As she grew older, she devoured lettuce salads and broccoli and many other foods frequently hated by toddlers.

Along came daughter #2. While my ideals had taken a hit with daughter #1, in food I had not wavered. What worked for the first child would work for the second, especially since this daughter was unopinionated and easy-going in ways our firstborn never was or would be.

I could not have been more wrong. Our easy-going, unopinionated second daughter stopped going easy and developed unshakable convictions when a plate was placed in front of her.

When I say she was picky, I don’t mean she turned up her nose at the usual toddler-shunned broccoli. I mean she abhorred apples, cake, grapes, potatoes, corn, peas, pumpkin, all types of beans and greens, carrots, various meats, pineapple, pizza sauce, certain kinds of cookies, rice, and innumerable other foods lost to the mists of frustration. She suddenly refused to eat meatloaf after enjoying it unreservedly, and it took us a year to learn that she started hating it after seeing me put a teaspoon of mustard into the sauce poured over it. She disliked every new food on principle, and if a hated food was put into her mouth, she gagged and retched.

Mealtimes were battles, and I was determined to win. But she was determineder. She went on hunger strikes rather than eat food she disliked or suspected she disliked. I soon learned that while I could sometimes get food into her mouth, I could not make her swallow. Punishments and consequences made no difference. Not even outright bribery worked.

We couldn’t live with the constant warfare, so I reassessed the field and found ways we both could compromise so peace could be restored. With time, she learned to like some foods she had hated, and I had many opportunities to practice patience (or not, I’m sorry to say).

And now this same daughter had been diagnosed with a disorder that could perhaps be controlled by a strict diet containing foods she hated and foods she didn’t recognize, none of which she’d eat willingly.

Could I drag her into such a diet? Could I turn our mealtimes into battles again? This time, the consequences of her refusal to eat would be, could be, staggeringly high. I would need her cooperation, but we had battled too long for me to hope she would suddenly change. She was only four, not old enough to understand the implications of refusing her ketogenic lunch, but old enough to be entrenched in her likes and dislikes. Ha. She was entrenched in her dislikes before ever I put a spoon in her mouth.

God, I said, You picked the wrong daughter. Jenica, now, she would enjoy the challenge of a unique diet. She would like most of the foods. She would cooperate. Tarica won’t. What on earth were You—?

The audacity of questioning God’s thoughts stopped me mid-scold.

God knew Tarica’s story before it began. He knew I would reach this point and ask these questions. He knew, but still He allowed her to have a palate as discriminating as the black-footed ferret’s. I had to trust He knew best, even if it made no sense to me.

Could I put Tarica on the ketogenic diet? No, I can’t, not until she is willing to cooperate at the table. Perhaps if she grows old enough to want seizure control more than her food preferences, perhaps if we run out of options, perhaps if God modifies her taste buds or her food-related stubbornness—perhaps then we may consider it. (At this point, we are hanging our hopes on brain surgery; if she qualifies and it is successful, then the diet will not be needed.)

I also learned that children on the ketogenic diet frequently are on seizure medication, too, so my idea of the diet instead of the drugs wasn’t a guarantee. In addition, only 10-15% of children on the ketogenic diet become seizure-free, so it’s not a miracle cure for everyone. I’ve read some amazing success stories, such as Autumn’s at Keto Joy. Stories like hers make me want to try it, but until my daughter and I can do it together, side by side, both fully invested in making it work, the ketogenic diet isn’t for us.

That didn’t stop me from demanding a sign from God, but that’s a story for another day.

Read part one, part two, part three, part four, and part five first.

This portion of the story opens the day after we received Tarica’s epilepsy diagnosis. She is still seizing, but now we know why. Sort of.

* * *

Friday began with purpose: to get Tarica’s seizures under control and to discharge us as soon as possible, given our self-pay status. Tarica was restless and irritable, wired as she was to a machine. She was also actively seizing.

As she ate breakfast, her head kept dropping to the side, her breathing would grow heavy, and her arm would lock into what had become her normal seizure posture. One seizure came after the other, and I looked at Linford, frightened. “Are we supposed to take her home when she’s seizing like this? I don’t know if I can do this.”

“I want to get out of here,” he said. “We need to get home. She needs to get home.”

I straightened Tarica’s pillow as she came out of a seizure and moved her tray closer. Her hand shook as she shoveled eggs onto her spoon. I moved away and spoke quietly. “I want to leave, too, but I’m the one who will be giving the medication and providing her care. It scares me. So much to learn. And what if she has another tonic-clonic seizure?” I rubbed my forehead. “I don’t know if I could handle it.”

“We have the emergency drug if a seizure doesn’t stop.” He eyed me. “Do you want to stay here until the seizures are gone?”

I shook my head violently, impatiently. “No. No, I don’t. It’s just…too much.”

* * *

Dr. Rajan prescribed Tegretol in addition to the Keppra. She and Dr. Katie went over the dosing instructions with me several times. I learned how to use the emergency drug, a nasal inhalant that would snap Tarica out of seizure if she had one that would not quit. They gave me reams of information—on epilepsy, on seizures, on medication—which I stuffed into a blue folder for a time when my head was clearer. If all went well, Dr. Katie said, we would be discharged that evening.

Sure enough, the EEG wires were removed that afternoon. For the first time, Tarica was free to climb out of bed. Her first steps were like a baby’s, and as she teetered and careered all over the room, I remembered vaguely that one of the early side effects of Keppra was unsteadiness.

After watching her rocket around and bounce off the walls, I volunteered to take her to the playroom next door while Micah (and Linford) took a nap. The first toy she claimed was a little car, so I took her on a few jaunts around the unit. We passed by many doors, most of them closed; behind each one, children had wept and slept, cried and died. I wished I knew the stories that had begun and ended here on floor seven. Perhaps those stories would take my mind off the unknowns in the story we were living.

In the playroom, Tarica raced from one toy to the next, as if they would vanish at any moment. There was a madness in her movements and in her eyes. And she never said a word. She was a silent bird trapped in a room, crashing blindly inside unfamiliar walls.

Unsettled, I looked through the game cupboard for something to occupy both of us. I pulled out a box. “Look, Tarica. Want to play Memory with me?” It was a test. She loved Memory and was able to match more pairs than I in nearly every game we played. Her ability had always astounded and confounded me.

She staggered up to the table and plopped into a chair. We flipped the cards upside down and started playing. As she began amassing a stack of pairs, the knot in my stomach loosened. Despite my best efforts, her stack grew faster than mine, and when she ended the game triumphantly, I was grinning nearly as wide as she was. Underneath the drugs and the seizures, she was still our Tarica, and her memory had survived intact.

A nurse informed us that the discharge papers were nearly ready to go, and we could start packing up. Linford began hauling suitcases and bags out to the van stashed somewhere in the bowels of the parking garage. It took multiple trips; where had all this stuff come from? He stopped at the hospital pharmacy to pick up a collection of drugs, the first of many prescriptions filled. I got Tarica dressed, but her hair, after four days of glue and wires, was a tangled, greasy mess, impossible to tackle at the time.

While she teetered around the room, I gathered odds and ends together and overloaded the stroller. Before we left Room 721 for the final time, I picked up a dry erase marker and wrote “Thank you so much. The Leinbach family” on the whiteboard. It had been a grueling four days, but we had been treated well. Even more, we had been given the knowledge and assistance we needed to live with an epilepsy diagnosis.

We stepped from the hospital into the parking garage, and as the scent of exhaust and wet concrete hit me, I realized that Tarica and I had not been outside since Monday, unless you count the brief space between house and ambulance, ambulance and hospital, on Tuesday. For four days, our world had shrunk to fit inside the brick walls of Children’s Hospital, and while others came and went, including her caregivers, we stayed and waited for a verdict and a plan. And we were just one family out of so many. I thought of all the people I had encountered in my treks to and from the cafeteria. All those parents of children, all those children suffering.

I wanted suddenly to just be home.

We pulled out of the parking garage around 7:00. As we threaded through Pittsburgh’s streets, I looked back to see Tarica had climbed out of her seat belt to stand, half-crouching, on her car seat. I muttered to Linford, “She’s acting crazy.” Turning in my seat, I sat her down and strapped her in again.

Linford asked, “Tarica, do you want to call Gram and tell her you’re going home?”

That pleased her—and distracted her from another escape attempt. Linford dialed his mom and handed the cell phone back to Tarica.

She had barely begun to speak when she broke off mid-word. I looked back to see her seizing. I rescued the phone and finished the conversation.

Within the next fifteen minutes, Tarica had seven seizures. What if…what if…? Fear leaned in and nudged me, along with disbelief. It wasn’t over. We were going to have to live with epilepsy. It didn’t fit into our world, our plans, our dreams, but we didn’t get to
choose. We could choose only to face it with courage in spite of fear and faith instead of doubt.

We would face it with God.

There was no other way.

This is a continuation of our epilepsy story. Here are the links to part one, part two, part three, and part four.

As this portion of the story opens, Tarica had been in the hospital for two days. We had not yet heard the results of the MRI and spinal tap. She was still seizing.

* * *

Thursday morning dawned, two days, two weeks, two years since we found Tarica unconscious. What is time when your child is in the hospital? It’s merely the intervals between discovering another piece of the puzzle.

Our pastor Jason and his wife Christine arrived mid-morning, accompanied by Linford and Jenica. We had decided to pull Jenica out of school for a day so the girls could see each other and so we could briefly be together again as a family. Tarica was happy to see Jenica, who brought a stack of cards from her classmates, and the gift and balloon from Jason’s. But she drew her greatest joy from the smallest visitor. Jason and Christine had brought their infant son along, and Tarica begged to hold Trent. Christine helped Tarica cradle him for a little, and she briefly glowed with her old joy. This had not changed. She still loved babies.

Not long after the visitors arrived, Dr. Rajan, one of the neurologists seeing Tarica, stopped in with the MRI results. It was odd, to sit beside my daughter waiting for the verdict, knowing that what is going to come out of the doctor’s mouth will change our lives. To think: I should be horrified and shaking, but I’m calm and resolute. Perhaps anything, even a terrible diagnosis, was better than not knowing.

With the ease of practice, Dr. Rajan laid out the facts. “The spinal tap came back clear. No sign of any infection causing the seizures. Good news.” We nodded. Yes. Good news. “The MRI, it looked good—except one tiny speck of abnormality, so small you almost have to imagine you see it, on the right side of her brain, near the division between the two halves.” The doctor touched the top of her head. “We don’t know why it’s abnormal. It could be caused by the seizures, or it could be causing the seizures. Perhaps she had it from birth. We don’t know.”

“What does this mean?” Was it Linford or I who asked the question?

“Epilepsy.”

* * *

In eight letters, we entered a new world. It wasn’t so very different from the one we left behind, but for a profusion of strange words—complex partial seizures, status epilepticus, tonic-clonic—and a boatload of new fears for our daughter. Epilepsy is, despite the medical knowledge and technology of the twenty-first century, a disorder with many unknowns.

With the diagnosis, the hospital staff began focusing on managing the seizures with the right combination of medication, as well as educating the patient’s parents. So much information—my head felt like it would split.

I drew great comfort from one fact: Dr. Rajan reassured us that the seizures had caused no brain damage. During that endless first night in the hospital, I feared a brain tumor and I feared brain damage. I thanked God over and over that neither existed.

After several hours, Jason and Christine left, taking Cassondra and Jenica with them.

The night did not go well. Tarica was restless with frequent seizures, but it was easier to face an enemy that had a name.

Epilepsy.

* * *

A quick update on the arm: Tarica has a fractured elbow.

When the doctor asked her what color cast she wanted, she eyed him narrowly. “What colors do you have?” she asked.

“Well, we have red and blue and green. Oh, and purple.”

She frowned. “But do you have pink?”

He did, and she is now wearing a neon pink cast. She could stop traffic and indigestion with it.

Which we will undoubtedly be grateful for when we get the bill.

* * *

Read more in part six.