My Guilty Secret (and Great Struggle)

I have written little of seizures lately.

This is because I’ve been trying not to think of them.

Here’s what I’m trying not to think about: We’ve seen no seizures since Tarica came home from the hospital.

Before you break out the party hats, let me tell you this is the worst possible timing.

Back in November, Tarica was seizing three to seven times a day. The seizures swallowed her life and vitality with the same ravenous appetite displayed by the wolves that lived under my bed when I was six. Brain surgery is a drastic measure, but we agreed to move ahead, bolstered by the continual seizing. She could not live like this.

The seizures continued, and with each one, I felt reassured that we were doing the right thing. When the seizures slowed down around the beginning of the year, I began questioning the wisdom of brain surgery, the wisdom of our choice. Mid-January, Tarica had a severe seizure that felt like God’s answer to my questions.

Yes, brain surgery was better than this guarded half-life she lived.

In the weeks prior to her February hospital stay, the seizures quit. My struggle began again.

But she seized at the hospital as if she were on a schedule, and the tests went well, and God was right there in room EP4, and my heart did not fear. Underneath my surface questions, I had such brave, blind faith that Tarica would qualify for brain surgery. We would agree to do the surgery, it would be successful, and we would shut—no, slam!—the door on epilepsy and live seizure-free ever after. I had the story already half-written in my head.

We came home. Tarica was back on her meds, and we waited for the testing results, waited also for the seizures, for something to happen.

Nothing. She has not seized.

And God has never felt so far away.

I told you the doctor called a few weeks ago, and during that conversation I realized Tarica might not ever be healed. I didn’t tell you what she said that opened my eyes to this truth.

She said, “If Tarica isn’t seizing, I don’t recommend you do surgery. Brain surgery is not a preventive measure; it’s a curative measure when seizures cannot be otherwise controlled.”

But if her seizures are under control, shouldn’t I be rejoicing? Isn’t control what we want?

No, no, no. I want her cured. I want her healed. I want her to live without the fear of seizures hanging over her, because while the seizures are controlled right now, they could return at any moment. I want her off medication so she can be my sweet Tari again.

If her seizures can be controlled by medication, why then did God open the doors for Phase One to happen? Why did brain surgery seem like our destination if it wasn’t?

I had hoped and prayed for healing, but it’s worse, I tell you, to live with hope, because disappointment makes the heart sick. That’s not my thought; it’s God’s inspired words in Proverbs 13:12.

There are several possible reasons why she isn’t seizing:

1. She is mysteriously and miraculously healed.

2. The medication is working.

3. God is giving us a reprieve before the seizures return.

4. God is shutting the door on brain surgery.

I didn’t want to tell you about this, because it feels like I began telling a story and suddenly forgot the punchline. It feels like we began a journey and along the way forgot our destination.

Now what?

We have an appointment next month in which we will discuss at length the test results and their official recommendation on what to do. If she still isn’t seizing, I doubt they will recommend surgery. Perhaps God knows this to be a good thing, but to me it feels like a lost opportunity for healing. Perhaps God has something better for us, but it’s hard to see that through my tears.

I want her healed. I don’t know if I ever wanted something as badly as this. If I did, I can’t think of it.

We’ve been praying that God would make our decision clear. Maybe this is His answer.

It’s not the answer I wanted.

Whatever the answer is, I pray it will be the best one for our daughter.

Even if it hurts me.

What It Means to Choose Heaven

In my last post, I wrote “I choose heaven over healing.”

Later, I thought maybe that statement could be misunderstand. I want to be sure I am clear.

In the phone call, the doctor didn’t give me any new information. She spoke frankly of the risks and likely odds we are facing and gave her opinion on a few things. She took the facts we know now and explained what it means from her perspective. It opened my eyes to reality.

But we have not yet made the decision on brain surgery. That will most likely happen sometime in May, after we receive more specific details on the testing.

It won’t be an easy choice to make, and my last post was an outpouring of my floundering heart. All this time, I’ve been convinced that surely God will heal Tarica. He still might. We may go ahead with surgery, and she may become seizure-free.

But we might feel God’s leading to decline surgery, or surgery may not heal her—and I finally realized this. Yes, it will hurt deeply (hence the shattered-heart line—forgive my drama), but it’s not as tragic as I think it is. God can redeem our pain and turn it into good.

Ultimately, heaven is more important than a seizure-free life. Eternity is more important than time. Our destiny is more important than our children having perfect lives.

This is an unavoidable truth, but it hurts me, because I want the best for my children.

But so does God.

And heaven is the ultimate best.

Heaven is guaranteed healing, but healing doesn’t guarantee heaven.

I’m still praying for healing, but I’m also praying that if healing is not for Tarica, God will help us accept it and even grow from it. I’m praying that no matter the medical outcome, all of our family would find and follow God, although it may mean facing pain now to gain bliss later.

That’s why I choose heaven over healing.

P.S. But if God does heal her, you will have to search the world over to find a more thankful family.

In Search of the Happiest Ending

I was writing a post titled “Why I Am Not a Food Blogger” when the phone rang.

It was Tarica’s doctor, and we talked about brain surgery.

I hung up, all my laughter gone.

Call me blind, call me naive, call me a towering monument of faith, but for the first time, I realized that our epilepsy story might not have a happy ending.

I’ve shared maybes and what ifs and questions and fears, but always, rock-solid in the back of my mind, I believed everything would come out right in the end. I’ve prayed “Thy will be done,” convinced that His will meant a seizure-free daughter.

But what if she will always have seizures?

I’m sure you thought of this possibility, from a detached distance, with the advantage of having the facts without the emotions. I’ve even said it is a possibility, said she might not ever be seizure-free, but I didn’t feel it as I did this morning, as a blow to my mother-heart.

She may never be healed this side of Glory.

I do not know if I can bear the thought.

* * *

I heard a story recently of a boy whose parents asked God to take their son Home while he was young if he would grow up to defy God when he was older. The boy died in a freak accident sometime after that. All his peers grew up and rejected God. The father professed that he never regretted his prayer.

That story hit me hard. We have three children in heaven by miscarriage, and it’s my greatest prayer that the rest of our family would someday join them. I have prayed, in a more innocent past, wincing slightly, “whatever it takes, God.”

What if it takes seizures?

What if seizures will make the difference between heaven and hell for our daughter? For our other children? For…for me?

After hearing the story of that boy, I had begun to pray, “God, if seizures help my daughter get to heaven, then help us to accept them with grace.”

But I was still convinced that God would heal her. And not just no-seizures-while-on-medication healed. I meant healed healed, as in no more seizures ever and no more medication. Ever. I hate what drugs do to her.

This is not too much to expect from a God who can do anything.

But what if He doesn’t do this?

* * *

Again and again, God has worked good in my life through hardship. Without pain, I am crusty and independent and proud. Pain turns me to God, and God turns pain to good.

What if living with this particular pain will keep us soft toward God and compassionate toward others?

It could. It might. It has.

To those of you who yearn every day for the child(ren) beyond your reach, this might sound unthinkable, but it was easier for me to grieve a miscarriage that it is to imagine my daughter living with epilepsy till death do them part. Miscarriage was only my pain, softened by the knowledge that my child is safe in Jesus’ arms. It hurts more to watch my children suffer than it does to miss them because they are with Jesus.

(And if my words hurt you, I am sorry. I’m not belittling your pain. If you’ve read the book I wrote on miscarriage, you know I know how great and terrible that grief is. Those of you who have emailed me to share your stories are daily in my prayers. I wish I could take away your pain, but I trust that God can also turn it into good.)

I hate the thought that my children need to suffer, but what’s been good for me will surely be good for them. God can do this for my children—turn their pain into good. I know this, but it feels a little like those times when the children pile into the wagon and fly down the lane.

I don’t want to watch. I don’t want to see them get hurt.

What if God knows we will be better off with seizures than without them?

Achieving seizure freedom has always been the happy ending I envisioned for us. But if that freedom would come at the expense of the happiest ending ever, then no, I do not want it.

I choose heaven over healing.

And it shatters my mother-heart.

Inadvertent Lessons in Prayer

On Tuesday, Micah got sick.

On Thursday, I got sick.

So when Jenica started yelling at 2:30 on Saturday morning, I had a pretty good idea what awaited me in the girls’ bedroom.

Jenica, who has been startled awake far too many times to major and minor medical events, has developed a hair-curling method of getting help. It consists of bellowing many words, sounding something like what I was hearing right then: “MOM! MOM! Tarica’s THROWING UP! MOOOOMMMM! TARICA needs YOU! MOM! COME QUICK! TARICA’S throwing UUUPPP! MOOOMMM!”

When Tarica wants help at night, she appears like a shadow beside my bed, barely visible, barely audible in the dark. Not Jenica. She stays on the scene and shrieks.

I leaped out of bed and raced for the girls’ room.

But I shall mercifully spare you the description of what I found. If you are a mother, you need no help picturing the scene. If you are not a mother, you don’t need any reason to dread becoming one.

I’ll stick with this simple summary: What little was spared in the first round of vomiting was nailed in the second, and it took me two buckets, two sets of pajamas, a set of clean sheets, and an hour to clean up her and the room.

Finally back in bed, I didn’t fall asleep until well after 4:00, and at 4:28, Jenica started hollering again.

This time, Tarica used the bucket I had belatedly provided.

At 6:30, Tarica shuffled to my bedside and whispered for help to go to the bathroom.

At 8:00—we were unashamedly sleeping in after such a night—Jenica yelled for help again.

After a shaky Tarica was tucked back in, I returned to my bed and collapsed, but not to sleep. I was too worried to relax. Would this be a repeat of that scare in January?

I thumbed out a text and sent it to family and a few friends: Please pray. Tarica just threw up 4 the 4th time since 2:30. In an hour, I should b giving her her meds & it will take a miracle 4 her 2 keep them down. If she cant keep the meds down, we’ll have 2 take her 2 the hospital 2 get the meds thru IV.

You know those red banners that run along the bottom of a TV screen when a news channel is on? It’s a running list of updates and breaking news and…whatever. I think of those banners when a particular need weighs on me.

I got up, got dressed, got breakfast on, and despite these ordinary events, a scarlet thread of prayer ran through my mind, an unending cry for help. When the replies to my text started coming in, I steadied, felt the prayers holding us up. It happens every time, and every time, it’s as amazing as the first time.

When 9:00 came, I decided to push off the medication just a little, to give time for her stomach to settle. But at 10:00, I knew I had to do it.

I took her morning dose up to her room and climbed on the bed beside her. “Tarica, I need to give you your medicine so you don’t have seizures. But since your tummy is all mixed up, I think we should ask God to help you to not throw it up. Do you want to pray?”

“You pray,” she said and closed her eyes, and so I did.

I felt a little silly praying. Although I had big worries about the hours ahead, it was such a small thing to say aloud, hands clasped beside my daughter.

She took the medication, and my ticker tape of prayer kicked up a notch as the minutes passed. If she could just keep it down for about half an hour, we wouldn’t need to redose. If she did throw it up after that, we ran the risk of seizures. Even with the medication, she still was more likely to seize than usual, since illness can trigger seizures.

She kept the drugs down. Thirty minutes turned into an hour. I moved her to the living room sofa. When the rest of the family sat down for lunch, I gave her some ginger ale to sip.

Over lunch, out of Tarica’s hearing, Jenica said quietly to me, “God answered our prayers, didn’t He? Tarica didn’t throw up again.”

But that afternoon, Tarica ran a fever, and I ran a few worrisome scenarios through my mind. We weren’t out of the woods yet.

And then Tarica said to me, her cheeks flushed and eyes heavy, “God answered our prayers, didn’t He? I didn’t throw up again.”

It was then, finally, that I realized I was looking at this all wrong. I was like the Israelites at the Red Sea, screaming at Moses for taking them into the wilderness to die, when before them lay a not-to-be-missed opportunity for God to reveal His power.

This is what faith means: Instead of an illness, a Red Sea, I should see an opportunity. This was a chance for God to show His care for us.

This was also an opportunity for our children to see God’s power at work in ways they understood and appreciated. Sure, God rescued the children of Israel at the Red Sea, but when God answers the prayer of a twenty-first century child, that makes God more real than a dozen Sunday school lessons ever can.

And not only could God become more real to our children, but they were also learning from our response. God wasn’t the only one with opportunities in this. Every time we faced a problem out of our control, we had the chance to teach our children by our example. Did they see us respond in faith or in fear? Those simple prayers I prayed with them might be the most important prayers in their young lives.

If this illness was actually all these opportunities rolled into one event, then I should be thanking God for it.

Put this way, in black letters on a white page, it sounds a bit too much like an insipid Sunday school lesson, where everything is always tidy and spiritualized. And they prayed to God and He answered and everything was all better and they knew they would trust God the next time.

Life isn’t tidy. Life is messy and hard and full of mistakes. In my life, the main character usually forgets to trust God the next time. Forgive me if I appear to be suggesting otherwise.

But the moment of realizing that God can make good out of the bad situation I’m in right now—that moment is startling and bright, standing crystal clear in contrast to my mistake-laden life. Our epilepsy story has been crammed full of moments like these. You’d think I wouldn’t forget them, but I do.

God can be found in everything that happens to me, good or bad. God is the scarlet thread woven into my life, the blood of redemption that washes the bitterness out of the bad.

As for Tarica, she is fine. Her fever disappeared on its own. She didn’t throw up again and she didn’t seize.

God answered our prayers, didn’t He?

The Results of Phase One

The hospital finally called, five weeks and one day after Tarica was discharged.

The waiting didn’t bother me, not in the first week or the second week or the third week.

But the fourth and fifth weeks got a little long.

What with all that waiting, the phone call itself felt almost anticlimactic. After I hung up the phone, I looked at the display. In fourteen minutes and fifteen seconds, I had found out what our next step was. It wasn’t quite as satisfying as I had imagined it to be.

For one thing, the news wasn’t as positive as we had hoped.

Brynna, the physician’s assistant, made the call. This was a relief; she has always been patient with my questions and thorough in her explanations.

After she identified herself, Brynna said, “So. Tarica is a likely surgical candidate.” She said it as if there were more to the story, so I waited for her to continue. “Her case is—”

I wish I could remember the exact words Brynna used. It was something like “complicated”  or “not typical” or “not straightforward.” Words we were hoping to not hear.

So. Brynna explained what that meant.

Tarica qualifies for surgery, meaning that the approximate origin of her seizures has been located and it is in an operable area, an area not vital to speech, vision, or motor control.

But her seizures appear to be coming from fairly deep in her brain, which makes it hard to get enough information from the electrodes placed on her scalp. Her seizures also travel extremely fast. For these reasons, the doctors are not sure if the seizures are coming from her frontal lobe or her parietal lobe. They are fairly sure the seizures are coming from the right side of her brain, but are not certain. staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762. staff. “Blausen gallery 2014”. Wikiversity Journal of Medicine.

We had been hoping Tarica has temporal lobe epilepsy, because the odds of being seizure-free can be up to 90% after surgery is done in the temporal lobe. Not so with frontal or parietal lobe epilepsy. Although we do not yet have the exact figures for Tarica’s case, I did some research and came up with discouraging numbers. We may be looking at a 50-60% chance of being seizure-free following surgery. If surgery happens.

Tarica needs one more test, a neuropsychological evaluation. The neuropsych test will measure how well Tarica remembers, reasons, concentrates, and solves problems. It’s rather like an extensive intelligence test, taking about three to four hours.

If she scores high in the evaluation, it will be one more point in favor of surgery. Ongoing seizures eat away at the brain’s ability to function and concentrate, will even damage a brain irreversibly. For a child who is intellectually limited and may never be able to live an independent life, this damage is not as life-changing as it is for a child with nothing but seizures standing between her and a “normal” life. The risk of surgery is lower than the risk of losing her intellect to out-of-control seizures.

(For those of you who love an intellectually limited child, please know that I know such children are no less precious, no less a miracle for their differences. My daughter may be intelligent, but her brain is not “normal,” not as we wish it would be. But then—what is “normal” but a crude label we slap on those we think fit into a standard-sized mold?)

We are not concerned about this test. Barring extreme fatigue or her refusal to cooperate, she will score well.

The neuropsych test will be done in the beginning of May. While we are at Children’s, we will also meet with the head of the department and the neurosurgeon. At those meetings, we will learn more details on the testing results, the specific odds we are facing, and what they recommend we do.

After that, we will have to make a choice.

Yes or no.

If we choose yes, the hospital is holding open a slot in their schedule for Tarica. Sometime in August or September, she would be admitted for Phase Two of brain surgery. Her head would be opened so that a mat of electrodes could be lain directly on her brain over the area the seizures are coming from. If the seizures are coming from deep in her brain, some electrodes may be slid down inside on probes. She would then be temporarily closed up, and we would wait for her to seize. When enough seizures are captured, which would reveal most definitely where the seizure focus is located, she would return to the OR and that section of her brain would be removed.

If this were a book I’d be writing, Tarica would wake up after the operation and smile her beautiful smile and we would go home and she would never, ever, ever seize again and we would never regret our yes.

But this is our life. No, it’s her life, and our decision.

I pray God we make the right one, for our daughter’s sake.

Why Brain Surgery?

“You know what Phase One could lead to, don’t you?” the doctor asked on our last day at the hospital. He was looking at me.

“Phase Two,” I said. “Brain surgery. We wouldn’t have come this far if we wouldn’t be willing to consider it.”

But why are we willing? Brain surgery is…well, brain surgery. Risky, isn’t it? Complicated. Is it the right thing to do? It’s not exactly a well-traveled path.


We don’t know yet if she qualifies for brain surgery; we are still waiting to hear. In the waiting, it’s easy for me to second-guess our choice to come this far. I beat back my doubt with the facts.

  1. Research reveals that the sooner brain surgery happens after seizure onset (when the patient first starts seizing), the more likely that patient will be seizure-free following the surgery.
  2. Tarica is not yet in school and won’t be for a year and a half. She will have time to heal without pressure to return to her lessons.
  3. Children’s brains recover from trauma more speedily than teenagers and adults. Why wait until she is older, when her brain is less resilient?
  4. The longer seizures are uncontrolled, the harder they will be to eradicate (which is probably why #1 is true). It’s as if the seizures create paths in the brain that become hard-packed with use and difficult to break up.
  5. Her seizures have shown an alarming tendency to worsen in a short period of time. Better to stop them now, if we can.
  6. A simple illness, such as that one back in January, has the potential to become, if not life-threatening, at the very least brain-threatening.
  7. Medications are just bandages, not a cure, and they are hard on her body. She might always need medication, but we hope brain surgery would allow her to be on a minimal dose.
  8. God has not shut any doors. Yet. He may still shut them. The doctors may not find the seizure focus. The seizures could be originating in an inoperable place. But right now, the door stands open, and we are preparing, if necessary, to walk through…

…by His grace.

What Makes a Story Significant?

I was at Children’s Hospital less than ten hours when our story was put into perspective.

Before Linford left for home that first evening, I ran down to the cafeteria while he stayed with Tarica. As I stepped out of the elevator on the third floor and turned toward the cafeteria, someone spoke behind me.

“I love your dress. Fall colors are my favorite.”

I turned to find an older woman following me. “Thank you,” I said.

“You made it yourself, of course,” she said. It was not a question, and she went on. “I used to sew, too, a long time ago.”

We walked together through the double doors and turned right into a wider corridor, me falling into my customary awkwardness with a stranger. Think, Stephanie. Think of something to say.

But there was no need. She was chatty enough to cover my lost equilibrium.

She told me about her granddaughter here at Children’s. She had a rare type of blood cancer, so rare she was rather a specimen around here, her grandmother said with an odd mix of sadness and pride.

I said I was very sorry to hear that. It must be so hard.

But, she said brightly, the doctors say if she must have cancer, this is the one of the best to have, if that can be said about cancer. Her chance of full recovery is quite high. We are hoping she can go home the end of March.

By this time, we had stopped just outside the cafeteria while the stream flowed around our island of conversation.

“How long has your granddaughter been here?”

“Since August,” she said.

August. It was now February. That was…that was…too many months to count while she was talking.

“Why are you here at Children’s?” she asked.

Not for much, I wanted to say. Nothing very much at all. “My daughter has epilepsy. She is here for ten days of testing to see if she qualifies for brain surgery.”

Ten days. What are these among so many? (And little did I know our ten would shrink to six.)

We parted with promises to pray for each other and for the children we love—and I have prayed. I pray still. I will not soon forget that woman’s granddaughter.

I distractedly purchased food and returned to the elevators. The woman sharing the elevator with me was also going to the sixth floor. We briefly spoke, she of her daughter who was born ten weeks early in October and has been hospitalized ever since.

First August and now October.

I crawled back to the EMU and crept into Room EP4, where a bright-eyed little lady in a gauze turban smiled at me.

She wasn’t sick. She wasn’t hurting. She wasn’t dying. She was healthy—save for a little matter of haywire electricity in her brain.

I was so ridiculously blessed it was embarrassing. Why did I think I had a story? How could I dare to tell it? So many stories are more significant, more traumatic than ours.

And what if—it was a new thought, or perhaps an old thought with a new slant—what if someone feels her own story is minimized by the telling of my story, as I felt when I compared ten days to six months? True, many families are worse off than we are, but still more families have never needed a children’s hospital. Would my story make someone feel like her story was insignificant?

We shrink from insignificance. We can bear pain and fear and suffering, but if we are made to feel we do not matter, we crumble inside even as we defiantly shore up our walls.

(At least I do. Maybe I’m alone in this.)

On one hand, I found people whose stories surpassed ours in length and breadth and height. On the other, I found those with stories containing less drama and fewer doctors.

Was our story significant enough to be told?

Down in the cafeteria again a few days later, I looked around the crowded space and wondered what these people would say if I asked them for their stories. Hospital staff with badges, parents wearing pink labels, cafeteria workers in uniform—every one of them had a story.

And…and…(I finally realized)…every story mattered, even mine.

Everyone is made in the image of God. Everyone laughs and cries and makes mistakes. Everyone feels fear and anger and disillusionment and wonder and grief.

Every one of these stories is written in the books of God.

They matter. I matter. You matter.

The story I tell is only one out of billions, and significance is never measured in human words.

Why then do I tell it?

I tell our story because I am a writer and I can’t seem to help myself.

But more than that, I tell this story because perhaps it can stand in proxy for all those untold stories. Because there are many mothers who stand by hospital beds living stories that would break your heart. Maybe I can be a tiny voice for them, or a small reminder of those you know with stories a little like mine. Or maybe your story is similar, and the words you find here spark a connection.

Beyond that, there is this: Our stories are unique and special, never the same, but the emotions behind the stories are common to us all. My fear is an echo of your fear, my joy of your joy. You do not have to live a story anything like mine to know what it’s like to hurt and worry and laugh and praise God. You have all that in your story already, and our common emotions create a connection beyond the story itself.

More than anything, however, I tell our story because God is in it, undeserving though we are, and I will not, cannot be silent.

God makes every story significant. Even if it ends in the womb. Even if happens in a quiet, unnoticed corner of the world. Even if you can find no words for your pain. Even if it seems God cannot possibly be in this chapter. Even if nothing more exciting than a flat tire happens in it.

Your story matters because you matter, and most of all to God.

Never, never doubt that.

Phase One of Brain Surgery: Day Six

What happened on Monday changed our Tuesday. Read Monday first.

* * *

Monday evening-Tuesday evening, February 9 & 10

Linford hates hospitals and hates sitting idly around even more. While I don’t love hospitals, I find the world they represent fascinating. As for sitting around, I’m a reader and a writer; I have no trouble sitting as long as I have words to distract me.

From the beginning, I told Linford that I didn’t expect him to stay and hold my hand. He could go home and work and be with Jenica and Micah while I held Tarica’s hand. But the doctor had told us to count on a ten-day stay, nine if all went well—and Linford wanted to give me a break midway through the week.

He made arrangements to bring Cassondra out on Tuesday, and she would stay with Tari while he took me away from the hospital for a little. I anticipated the date, but I dreaded leaving Tarica. She would want to leave the hospital as much or more than I would, but she had to stay to the bitter end. Why should I get a break when she doesn’t?

Monday evening, I called Linford and told him what had happened that afternoon in the scan room. “We won’t know until morning if both the PET and the MRI can be done tomorrow.”

“What about our plans?” he asked. “I think I’ll bring Cass out anyway.”

“She’s planning on it, so might as well. But if Tari will be discharged tomorrow evening, there’s no point in taking me away. I’ll be thrilled to take my break at home. Besides, there will be packing to do.” I looked at the cluttered room around me. “You’re going to complain about how much stuff you have to haul out of here.”

“I’m a little disappointed that we won’t get our date,” he said, “but I’m not sorry she’s coming home so soon.”

When Tarica awoke on Tuesday morning, I had news. “Do you know what’s happening today?” I asked her.

She yawned. “Daddy and Cass are coming.” She clutched at her head. “I want to scratch it, Mommy.” Her scalp had been growing increasingly itchy during the last two days, but she was forbidden to scratch.

“You will be able to scratch your head all you want tonight.”

She looked at me blankly.

“The nurse just told me that you’ll be taking two more tests this afternoon, and after the tests are done, we can go home.” I sat on the bed beside her. “Can you imagine? Just today yet, and then home. Tonight you can sleep in your own bed without any wires on your head.”

Her joy dried up the instant she realized she had to take her medication with Jello again. Yummy sugar-free orange this time. The PET scan uses glucose to help measure brain activity. She could have no extra sugar in her body, other than what the injection contained.

No. I won’t take it. And she turned her head and sealed her mouth.

The nurse was in a bit of a flap. Tarica’s stomach needed to be empty before she was sedated, and if this miniscule amount of food wasn’t swallowed soon enough, it could reschedule the tests. This she made me know with great urgency and much looming.

With Tarica, we have learned that urging and looming lock her up tighter than the county jail. I was relieved when the nurse was called away. While she was gone, I set to work, feeling the pressure despite myself, knowing I had no other recourse.

I cajoled. I begged. I threatened. I bribed. I joked. I retreated. I prayed. I coaxed. I pleaded.

I thanked God the nurse did not witness the scene.

At last, she yielded. Tarica, that is. When the nurse popped in, the medication was gone and I was a limp puddle of relief on the bed.

Now that Tarica had put something in her mouth, she couldn’t stop thinking about food. “I’m hungry, Mom,” she whined. “I want to eat.”

I had said it all already, yesterday, but I trotted out the same lines again. I know you are, sweetie. After the tests you can eat. You’re being so brave.

She was also being less than reasonable about it, unlike yesterday, and when I mentioned this to the nurse, she said that yesterday Tarica had received some sugar in her IV fluids. Today, she was getting none, because of the PET.

Tarica has never handled low blood sugar well. Linford and Cassondra were a welcome sight. At last, a distraction. We both needed one.

“The PET is scheduled for two o’clock,” I told them, “and she goes for the MRI right after that.”

Linford looked at the clock. “Good. Maybe we can be out of here by six.”

The eternal optimist. Perhaps this is why he and hospitals cannot get along.

I worked at packing and cleaning up. I returned books to the library. Cassondra and I went to the cafeteria for a quick lunch. When we returned, the two visual whizzes were mid-game on the floor.


After that was story time with Aunt Cass.


We had less than an hour to wait when the nurse bustled in. “Just got word that the PET scan won’t be happening at two. Don’t have a time yet, but it will be a little later. Sorry. That’s the way it goes. But hey, they might call back and say they want her at two after all.”

She left. We barely had time to adjust our sails to this change when she came back in.

“They called again. What did I tell you? They want her down there as soon as possible. I’m going to have to stick her for her blood sugar before she goes. Transport will be here shortly, so you need to get her changed into a hospital gown. No metal for the MRI.”

She seized Tarica’s hand. After a moment of shock, Tarica protested. This nurse was no Jaime. I decided I needed to use the bathroom before we left.

The finger stick was over when I came out, but Tarica, traumatized, was still crying. When I tried to take off her dress, she threw a fit royal. I am not likely to soon forget that scene, with transport waiting in the hall, the nurse hovering unhelpfully, Tarica fighting so hard it took Linford and me at full strength to jam her into a hospital gown.

Cassondra stayed behind while Linford accompanied Tarica and me down to the second floor. I pointed out familiar corners to him as we went, and when the stretcher was backed into a bay, I said, “This is the same bay we were in on Friday when she had that seizure cluster.”

Before too long, we were taken back to a little room where Tarica received the PET injection. She was supposed to rest quietly for about forty minutes before the scan. While we were waiting, Tarica’s doctor arrived for one last consultation.

We had few questions, most of them being answered, save for the biggest one. The doctor did most of the talking.

“We’ll let you know the results as soon as we have them. The tests will need to be reviewed by the different departments. I looked over the EEGs, but I’ll need to go over them several times. Every Monday, the epilepsy surgery team holds a conference to discuss the current cases, and we’ll go over everything as a group and come to a decision. It will probably take two to three weeks before someone contacts you.”

“Will we be told over the phone, or do we need to come in for an appointment?” I asked.

“The one who contacts you will likely give you a summary of the results, but you’ll need to come in to discuss it more thoroughly.”

The techs came to take Tarica in for her PET scan. I left with her. She was hungry and tired and sick of strangers, but she was transferred to the machine and hooked up anyway. And then we were being ushered out of the room and shown to the waiting room.

“She’ll be taken from the PET to the MRI,” the tech said. “It will probably take an hour and a half, maybe more.”

Rather than sitting for ninety minutes, we returned to Room EP4. I finished packing while Linford and Cassondra hauled the loot out to the van.

When the time was almost up, we returned to the waiting room. Apparently no one knew exactly where we were because someone finally called my cell phone to tell us she was finished and in recovery.

She may have been in recovery, but she wasn’t into recovering. After she had responded enough to be returned to her room, she curled up on her bed and refused to open her eyes, although she was conscious enough to snarl and punch me when I tried to work some of the tangles out of her hair. The EEG wires had been taken off for the MRI, and her head was finally free of its turban.

We tried to coax her awake. “Tarica, do you want to eat? Your tummy is very hungry. As soon as you get up and get dressed, we can go home. Don’t you want to go home?”

Snarl. Growl. Snap. She hid her face behind her arms and refused to come out.


They wouldn’t let us leave until she was fully conscious, and she wouldn’t cooperate enough to get dressed. I had been patient for so long, willing to stay with her no matter how long, but now that the end was within reach, I was nearly climbing the walls with my eagerness to go home.

Finally, she said she wanted a slushie. In our hurry, we had forgotten to get one down on floor two, where they are available for all patients in recovery. No slushie, but what about ice cream? There’s ice cream in the pantry.

Slushie. And she did not fully wake up until Linford went down to the cafeteria and got one.

Was she spoiled, or was she traumatized? I remembered my own experiences with sedation and voted for the latter. If she were spoiled, now was not the time to address it anyway. Plenty of time unspoil her later.

We got her dressed, finally. She had her slushie while we gathered the last few things together.


Linford carried Tarica while Cassondra and I shouldered the remaining bags.


And we left. With none of the fanfare I felt in my heart.

Four days early.

I remembered what the nurse said when I had asked her if they often do the PET and MRI back-to-back.

“Never,” she said. “At least, not that I heard of.”

The reason why it never happens is because the PET is done on the first day (that is, when the parents are informed and don’t give their child breakfast), and the MRI is done on the last day, when the electrodes can be taken off and kept off for discharge.

Hospitals are not known for their flexibility. Yet, a “never” procedure had just been done for us. It could be argued that if the PET had happened on the first day, it would have been better planned. But I felt that God had again taken what looked like a mistake and used it to remind us that He is in charge of the details and nothing—not even hospital procedure—is too hard for Him.

It could have happened to anyone. But when it happened to us, I looked for God in it.

And I found Him.

* * *

We are still waiting for the results. Tomorrow it will be two weeks since Tarica was discharged. Sometime in the next week (or two, allowing for the slowness of the medical world), we will learn whether or not she qualifies for brain surgery.

We are praying, praying, praying that the results will be clear—a definite yes or a definite no—and that our decision will be the only obvious choice to make. But if it is not, God will still be in it.

You may need to remind me I said that.

Phase One of Brain Surgery: Day 5

Nothing much happened on Sunday, which is probably why we enjoyed it, comparatively. You can read about it here.

* * *

Monday, February 9

If I were to title this chapter something besides the boring one above, I would call it “All Because a Little Bug Went Ka-choo.” The Dr. Suess book with this title describes all the awful and improbable things that happened because a bug sneezed.

This chapter contains not a sneeze but a cough—and what happened because of it.

The nurse came in before six that morning to hook Tarica up to IV fluids. Because she would be fasting today, she needed to stay hydrated. Tarica slept through the process, but I did not.

That was the end of my night.

Around eight, it occurred to me that I could slip down to the cafeteria for a quick breakfast—if the nurse was willing to keep an eye on the still-sleeping Tarica. When I asked Erin, she shooed me down the hall. “Go, go, go. She’ll be fine.”

I went. Quickly. When I returned, coffee in hand, twenty minutes later, Erin gave me the OK sign. “Still sleeping.”

“Did you hear yet when the SPECT scan is going to happen?” I asked.

Erin made a face. “She’s scheduled for 3:30.”

“Oh, great. That’s a long time for a little girl to wait for her breakfast.”

When Tarica woke up, she had to take her morning dose of medication. We were back to using her normal sprinkle capsules. Since she had yet to learn to swallow pills, I had always opened them up and poured the sprinkles onto a spoonful of yogurt. But yogurt was forbidden this morning.

“Will she take them with Jello?” Erin asked.

“I think so,” I said. “Is Jello allowed?”

“Not red. Red food coloring is a no-no. What about lemon?”

We tried lemon.

It was just as awful as you might imagine lemon Jello covered with hard white spinkles might be. Tarica nearly rebelled and settled for gagging. Not even a drink of water was permitted to wash the residue from her mouth.

I missed the distraction of food. It’s quite delightful how many hours can be wasted in a hospital ordering food, waiting for food, and finally eating the food. It was a good thing we had visitors coming that day.

Sunny didn’t stay long, but she had time to sit down for a visit with Tarica.


Carmen and Karisa stayed longer.

The last time I remember seeing Carmen, I had been little more than a child. She had been employed by my father, and I admired her. Although she was all grown up back then, she treated an annoying six-year-old kindly.

The years had narrowed the gap between us, and we met with more in common than when we had parted.

While Carmen and I caught up on our lives, Tarica and Karisa broke the ice over books and games.


Tarica wanted to give Karisa a few jellybeans. When she asked for some for herself, I reminded her that she couldn’t eat or drink until after her test. I expected tears, but she swallowed them.


“Shall I put some jellybeans in my pocket, so you can eat them when the test is over?” I asked. I counted out six jellybeans. “Five jellybeans for every year, and one to grow on.”

Tarica grinned and didn’t protest when Karisa ate her seven jellybeans beside her.

I expected Karisa to ask questions about Tarica’s white-wrapped head and many wires, but once the initial awkwardness was over, the two girls were playing and talking as if they had known each other much longer. Perhaps Carmen heard the questions later, but I was grateful for how well Karisa handled unfamiliar circumstances and people.

After they were gone, we had over an hour to while away. Tarica asked me to help her back into bed. “Are you tired?” I asked as I transferred her and her wires.

She nodded and snuggled down with her blanket. Her eyes—it hurt to see the medicated weariness back in them. If we had had to wait much longer, she would have fallen asleep.


Transport arrived to take us down to floor two. I grabbed a small present and a book; one should always be prepared for a long wait in a hospital.

“Do you have the jellybeans?” Tarica asked as we rolled down the hall.

I rattled them in my pocket. “Sure do. You can eat them as soon as you wake up.”

Jaime met us in radiology, her smile warm. We were again deposited in a holding cell to wait. Tarica watched Jaime walk away. “I like her face, Mom,” she said. “And she had Hello Kitty on her shirt.”

“I like her, too.” I wondered what quality made Jaime stand out from the rest of the nurses. It had more to do with who she was than her skills or competency, although she was certainly both skilled and competent. She lacked the gloss and hardness of some nurses. On Friday, when she was taking me to the recovery waiting room, she had gotten mixed up and started off in the wrong direction. She had laughed at herself, not in a disgusted way, but in a genuine—that was it.

Jaime was genuine.

I wished I could sit with her over coffee and ask her about nursing and why she chose it and what it had taught her. (I get compulsions like this quite often, which lead to some dreadfully nosy questions at times.)

When Tarica grew restless, I pulled out the wrapped gift, which she opened with her usual care. It was a Spot It game. I read the instructions and we began playing.

There’s something wrong with me, I think. Despite being five, medicated, and mildly traumatized by recent events, my daughter could beat me in a visual matching game with little effort. I was almost relieved when Jaime returned to take us back to Nuclear Med.

In the scan room, Jaime asked Tarica who should transfer her from the stretcher to the machine. I wanted to congratulate Jaime. She had learned the importance of giving children the power of choice when they are trapped in a situation out of their control. Tarica, who might have pitched a fit about being moved, picked me, and the transfer happened with no fuss.

But she still had some fight in her. None of her IV experiences had convinced her that the nurses meant no harm. Jaime distracted her by asking if she wanted the heart monitor attached to her finger or her toe. Tarica chose her toe.

After some protests from the patient, the team got a syringe attached to the IV and the sedation medication was given. Tarica wept. Jaime mouthed to me over her head, “It burns.” But the pain was short-lived. Within seconds, Tarica was slumping against Jaime, but every time Jaime tried to lower her to the bed, Tarica fought and wailed.

“She’s a tough one, isn’t she?” a nurse said.

“Give her a little more,” Jaime said, her arms around my daughter. “It won’t take much.” (She was actually more specific than that, but I don’t remember what amount she said to give.)

Tarica was soon stretched out unknowing on the bed. They moved her up so that her head fit snugly between two padded supports. An oxygen mask was put over her mouth and nose, and towels tucked around her face ensured she wouldn’t move. The scan technician pulled a warmed blanket over her, followed by her precious Pooh blanket. Over this, he drew thick black straps to hold her down.

He punched buttons on a touch screen. The bed slid forward, and two large square plates moved into place on either side of Tarica’s head.

“Vitals look good,” Jaime said, and with another punch, the scan began. The machine hummed and purred, and every minute or two, the two plates moved a few inches farther in a methodical rotation around her head.

I should have been horrified at the sight, but I confess I was fascinated by this opportunity to observe an unfamiliar world. Besides, horror would have only gotten me ushered from the room. Perhaps the techs were accustomed to some kind of reaction. They had pulled a chair over for me beside the machine, and when I stood up, the scan tech eyed me.

“You okay?” he asked, in a manner that indicated he feared I wasn’t.

“I’m fine,” I said. “Just need to stand for a little. I’ve been doing a lot of sitting these days.”

“Can I get you anything? Something to eat or drink?”

“I’m fine,” I said.

“It isn’t any trouble,” he insisted.

I relented. “Water would be nice. I haven’t been eating or drinking much today because she couldn’t.”

He brought me water and pretzels and crackers. Since they were available, I ate the pretzels. But it felt wrong. My daughter strapped unconscious to a machine that looks like it’s about to consume her and I’m there eating. Sort of like the Romans feasting in the Colosseum while the Christians burned.

The scan took about thirty minutes. A few minutes before the end, the doctor overseeing the scan said, “The last two minutes are a modified CT scan. We need to move away during this part of it.”

Jaime, the doctor, the scan tech, and I moved behind the glass wall enclosing a corner of the room. We watched as the bed slid further into the machine, which whirred and clicked. The bed jerked as it moved again and then again.

“One minute to go,” the tech said, and then—

Tarica coughed. Her hand came up to her face. The tech froze.

The team spoke rapidly, quietly to each other. I caught the doctor’s words. “You mean we’ll have to do the whole scan again?”

The tech punched more buttons and the machine quieted. “She has to be in the same position for the SPECT and the CT. She moved when she coughed. We have to start over.”

The room became busy. More nurses came in and stood in consulting knots. Two doctors in navy jackets with “Sedation” embroidered on them appeared and started a deep discussion with the original team. From what I overheard, they were trying to figure out what and how much to give Tarica. Her original dose was no longer effective; she coughed again and moved during the hubbub, although she didn’t wake up.

The team talked in numbers and names I didn’t understand, even arguing a bit about what would work. Jaime worked out some math on a paper, and they discussed it some more. Finally, everyone was nodding. The medication was procured and given. Jaime adjusted the oxygen mask so it was no longer pinching Tarica’s face. The mask had left red marks on her cheeks. I wondered if that was why Tarica had stirred.

I thumbed out a few texts with a request for prayer. Not that I didn’t trust the medical doctors to handle the situation, but the Greatest Physician is our family doctor, and I prefer when He attends my daughter’s bedside. The more people petitioning Him on Tarica’s behalf, the better.

The scan began again. One of the sedation doctors, a crinkly-haired woman who reminded me of a lively, strong-minded terrier, which is meant as a sincere compliment, said to me, “How can you be so calm? If this were my daughter, I’d be flipping out.”

That wasn’t all she said. I heard her talking to the rest of the team about Tarica’s case. She said, “I’m going to see if we can do the MRI right after the PET tomorrow. No point in making her starve for two more days. The PET dyes won’t interfere with the MRI, so there’s no reason why not.”

I thought maybe I wasn’t hearing correctly above the noise of the machine.

And then I wanted to hug her, bless her, get down on my knees and beg her. Oh, to go home tomorrow. I almost forgot about the scan in my elation.

As the scan progressed, the tension built in the room. I caught the team exchanging glances, studying Tarica. When we moved behind the glass for the last two minutes, I could almost see the intensity pouring off them.

Jaime said, “If she moves, I’m going to cry.”

The sedation doctor said, “If she moves, I’m going to throw up.”

The scan tech, above the hysterics of women, stood rigid, his gaze jumping from the screen to Tarica and back.

I concentrated on praying while the bed jerked and moved in its final throes.

The bed retreated from the mouth of the machine, the machine throttled down, and the tech drew a deep breath.

“It’s done?” the doctor asked.

The tech nodded gently, but there was no mistaking the relief in his face.

The rest of us were not so inscrutable with our joy.

As we filed out of the corner, Tarica moved on the bed.

“That was too close,” someone said.

Tarica’s return to consciousness, once premature, was now slow. She was transferred back to a stretcher, and Jaime took us to a small recovery room. The sedation doctor stopped in briefly to check on us and again mentioned something about trying to schedule the PET and MRI for tomorrow.

As soon as Tarica was fully awake, she ate jellybeans and slushie, blue this time.

Back in Tarica’s room, we ordered supper. I ordered my hopes to calm down, but knowing we might go home tomorrow, I could think of nothing else.

Just think, I said to myself as we silently plowed through our food. If she hadn’t coughed, this possibility might never have come up.

But I said nothing of it to Tarica. I didn’t want to disappoint her if it didn’t work out.

Phase One of Brain Surgery: Day 4

The story of our Saturday can be found here.

* * *

Sunday, February 8

There are no Sundays in a hospital, other than a lack of scheduled testing and a non-denominational chapel service for all those interested and I wasn’t. Tarica and I created our own service. With half the congregation being five years old, plus missing a minister to read the text, we settled for Sunday school.

I had saved a specific gift for this day. Someone had given us a pair of dry-erase activity tablets, one on David and Goliath and one on Noah’s Ark, and a pack of markers. (Thank you, Ann!) Tarica picked Noah’s Ark, and we had ourselves Sunday school in a hospital bed.

When class was dismissed, Tarica opened the dolly package marked “Day #4.” Pleased to find socks, a pair of tights and a bottle, she promptly gave her baby a long feeding. “She was very hungry.” With serious eyes. “It’s good I have a bottle now.”


Shortly after noon, Linford, Jenica, and Micah arrived at our door, bearing a packed lunch from my mom. Home-cooked food! and Mom’s chicken corn noodle soup at that. My stomach thought it was standing at the gates of Paradise.

While I was in the family pantry heating up the soup, a woman walked in. I recognized her as the mother of the other child in Phase One. (Children’s Hospital usually has two patients simultaneously going through Phase One.) I asked her how it was going.

No seizures for her son. Nada. None. Zilch.

We talked until the soup had cooled in the microwave and she needed to hurry back to her son. As I re-reheated the soup, I considered her words.

She had so much to say about thinking positive, being strong, not letting herself get discouraged, making the best of it, and so on. It hurt to hear her, and I wished I had been able to speak more clearly of trusting God. But our daughter had seized and her son had not. The victor must be careful how she speaks of courage to one still in the battle.

I had told her I would pray for her and her son. That would have to be enough.

I carried the steaming soup back to room EP4 where we ate in the expected chaos of not enough chairs or table. But chaos was a small price to pay for family togetherness.

Tarica’s new treasures kept everyone occupied and quiet, other than sporadic outbursts from a small man who wanted to try out all the buttons in the room.






I told Linford the latest news from the doctors. “It looks like we might be able to go home early. We still need to do the inter ictal SPECT, the PET, and the MRI. They can do only one test per day since the dyes used in the scans would interact with each other. Brynna said if all goes well, we’ll be done on Wednesday.” I rescued the event button from Micah. “They’re starting her back on her medication tonight and will build her up slowly, so she’ll be on her regular dose by Wednesday.”

Wednesday. Yet one more potential miracle, all because Friday had gone so well.

“Did they see enough seizures?” Linford asked.

“The doctor said he wouldn’t mind seeing a few more,” I said, “but they’ll start her back on medication tonight regardless. If the boy in the next room has had no seizures, and Tarica had six plus the cluster down on two, then I guess it could be much worse.”

While Tarica was preoccupied with her siblings, I said to Linford, “I am worried about the next three days. All three tests require sedation, so she’ll need to go without food or drink.” I rubbed my hand over my eyes. “She’s been a real trooper, but going hungry for three days straight would test the hardiest soldier. It also means I won’t be eating either.”

“Carmen’s coming tomorrow, isn’t she?” Linford asked.

“I think so. She said she’d call me tomorrow morning with specifics. I hope we can make their visit work with the scheduling of the scan. It will help to distract Tarica from her empty stomach. I don’t know when the scans will happen until the morning of, although Brynna told me that MRI is always done on the last day at the end of the day.”

Perhaps Micah wanted to punish me for abandoning him at Grandma’s. He rejected much of my affection, preferring instead his father’s. When it was time to go, he marched out of the room and down the hall ahead of Linford and Jenica, with scarcely a backward glance.

I ordered a late supper for Tarica—no food or drink after midnight—and what was left of our day disappeared. Because of her recent late nights, I hoped Tarica would fall asleep in good time. But the night nurse came in shortly before nine with an IV pole and announced she was hooking Tarica up for her first dose of medication, this one to be given by IV.

Tarica wasn’t having any of it. No one was getting close to her IV port, no one. I hated this, hated the flat-out bribery I resorted to. It defied all my parenting principles. “We’ll open a gift after you’re hooked up,” I said. “Which one do you want?”

None of them.

Doing this in front of a witness made me self-conscious, awkward. When the nurse was called away briefly, Tarica and I talked unhindered, including one grumpy complaint from her: “Why is she so loud, Mom?” This nurse was a little brusque; without her presence, Tarica’s resolve thawed. When the nurse returned, Tarica submitted to the flushing out and hooking up with only minor protests.

“How long will this take?” I asked.

“About an hour,” the nurse said. “It’s a slow drip.”

After she left, we opened a gift and tried to pass the time. Tarica’s IV was hurting her, made worse by her tiredness. I soothed and distracted; I may have even resorted to a second gift.

The nurse returned just before ten to unhook her. She frowned and examined and reexamined Tarica’s IV port.

“Is there a problem?” I asked.

“It’s leaking. Doesn’t look good. I’m going to get an IV tech up here to replace it.”


The nurse left to place the call. When she came back, she said, “It’s going to be awhile till the tech gets here. They have a number of patients on the list.”

But the day had been long enough, and Tarica succumbed to sleep sometime around 10:40. I tried to stay up with a book, but when I could barely keep my eyes open, I gave in and went to bed myself.

But I couldn’t fall asleep, tired as I was. I kept visualizing the battle to come, the struggle to find a vein, the tears we both would shed.

The door opened at quarter past midnight, the tech full of apologizes for making us wait. She was worth the wait. Tarica, half-sleep, wept only a little, and the needle found a good vein on the first try. Perhaps the tech succeeded because Tarica was not fighting.

My imagination had run away with me this time. But being wrong once didn’t suppress my concerns for the morrow. I prayed the scan would happen sometime in the morning.

“Not at the end of the day, Lord,” I pleaded and wished that nurse wouldn’t talk so loud outside our door.