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.

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.

Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762.

Blausen.com 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.

Bad News, Backing Up, and More Waiting

The hard drive in our almost-new laptop crashed on Sunday night, totaling the hard drive.

Yeah, you guessed it. I had been a little too careless with backing up our files. Who would have thunk a new machine would so utterly demolish itself?

The laptop has been hospitalized for tests and observation. We hope to hear the results on Monday or Tuesday.

Speaking of waiting for results: I spoke with a nurse from Children’s Hospital on Wednesday afternoon. She said that the results of Tarica’s tests will likely not be in for another two weeks.

Back to computers, since the other subject is too gloomy to dwell on.

I spent some time this week researching (on our hideously slow old computer) various methods of backing up photos and files. I had a system originally set up after we got the new laptop, but it didn’t suit me, so I changed some settings (or something—not exactly sure what happened). I thought it was backing up after that, but it wasn’t.

Researching backup methods online is a little like looking for a particular button in a barrel of buttons when you’re not exactly sure what the button looks like.

Here’s what I think the button should look like:

1. Automatic (or nearly so)

I have a brain with holes in it, through which important stuff like church services and clean work clothes fall all the time. Don’t trust me to remember to back up the computer.

2. Non-whizzy

I’m not a computer whiz. I don’t want a complicated sixteen-step process.

3. Local

The other setup saved stuff to the cloud, but then it wasn’t on the laptop (or didn’t appear to be). Although I like a cloud-based, multi-accessible backup, I also want my files saved to the computer itself, so I’m not dependent on online access to open my files. (Perhaps I require further cloud education. If so, I’m all ears.)

4. Free or very cheap

Call me a tightwad, but I would prefer not investing a lot of money into this. Besides, what money we might have spent on a backup system will now be buying a certain computer tech a week’s groceries.

Does this button even exist?

What do you use to back up your computer?

These are not rhetorical questions. I’m hoping for real-world advice.

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.

landscape-263411_1280

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.

DSCN1575

After that was story time with Aunt Cass.

DSCN1576

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.

DSCN1578

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.

DSCN1580

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

DSCN1582

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.

DSCN1557

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.

DSCN1566

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.

DSCN1561

“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.

DSCN1568

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.”

DSCN1543

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.

DSCN1544

DSCN1548

DSCN1552

 

DSCN1556

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.”

No.

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.

Phase One of Brain Surgery: Day 3

Read the previous evening’s adventures here.

* * *

Saturday, February 7

I woke too early, feeling like I hadn’t slept.

While I had uninterrupted quiet to think and pray, I read my Bible and did some writing. No one disturbed us that morning, so Tarica didn’t stir until 9:00. When she awoke, we ordered breakfast, and then I got her up and dressed.

I’m not sure when I first noticed her fidgetiness. She was decidedly not the girl of the previous evening. She wiggled and squirmed, a body in constant motion, and her attention span was—well, she had little to none. Her orneriness had returned, too.

But why, if she wasn’t on medication?—and then I remembered the Ativan. Two doses within two hours. I remembered also her behavior in the hospital eleven months ago. We had blamed Dilantin—and certainly Dilantin had caused the hallucinating and fighting—but it looked like Ativan might have contributed to her agitation and inability to relax.

Tarica made a nice-sized dent in her breakfast and was still nibbling at it when our visitors arrived.

My sister Cassondra and three of her friends drove out to spend a few hours with us. Never was I so happy to see a crowd. (Yes, for introverts like me, four is a crowd.) They helped to entertain Tarica and gave me adults without badges to talk to.

I can see the photo in my mind: four smiling young women gathered around a small girl. It’s the photo I didn’t think to take and wish I could share with you now.

And if you will allow me to insert a mini-sermon here: Never hesitate to give what you can. The Lord can multiply it in the heart of the receiver until it fills every crevice with gratitude.

I deluged our visitors’ ears with more information than they likely wanted or needed; they listened politely and even asked a few questions. It felt delightful to unload all that was rabbiting around in my brain from the last two days.

Like this: In the last month, Tarica had complained about her eyes. Her vision would blur, and she couldn’t see for a while. When I had mentioned this to the PA, she said it was likely seizure activity, a simple partial seizure that didn’t spread to affect more of her brain. Her seizures have always affected her vision. In fact, Tarica told us once it’s how she knows she’s going to have a seizure: She stops seeing.

As I was speaking, Tarica said, “My eyes are blurry now, Mom.”

I looked at the event button. Should I push it? But what if it wasn’t a seizure?

Feeling self-conscious, I stepped outside the room in search of a nurse. None was in sight. Sheepishly, I pressed the call button.

When the nurse came in, I explained what had happened. She said to push the event button for any future episodes. As if I expected any other answer. Why had I bothered asking?

While our guests were with us, we received two more visitors that made Tarica’s eyes shine. Her anticipated canine friends were no sooner in the room than they were crowding Cassondra, who drew her skirt about her, rejecting their attention.

“I don’t know why it is,” she said, “that I can be in a group of dog-lovers, and the dogs always find me.”

The Labrador Retrievers, one yellow, one black, cheerfully unsuppressed, soon moved on, and once Tarica recovered from her initial shyness, she petted them.

DSCN1534 DSCN1535

After our visitors—human and canine—left, the hours dragged. Nothing was planned for Saturday or Sunday, beyond waiting for a few hoped-for seizures. We opened another gift, played a few games, read a few books.

DSCN1538

In his daily round, the doctor said, “Her seizures travel so fast within her brain, it will be difficult to determine the starting point. Ideally, it would be nice to see three to five more seizures, but we may have to settle for what we have. General anesthesia tends to suppress seizure activity, which is why we use it only if absolutely necessary. We are fortunate to have gotten the seizures we did.”

“What about the seizure cluster down on floor two?” I asked. “Will you be able to use that?”

“Maybe, maybe not. The battery-powered EEG is often not as clear as it should be.”

After he left, I thought about his words, piecing them with other information I had been collecting.

If general anesthesia generally suppresses seizures, then her four seizures last night were unusual.

I had decided, going into this hospital stay, that if anything out of the ordinary happened, I was going to attribute it to God. Why not see God in the unusual? Dare I call the unusual not a coincidence but a miracle? Of course I could, no matter what others might call it. God makes even the commonplace a miracle. Look at the unfolding of a crocus, the first squall of a newborn, the sinner’s prayer of repentance. Ordinary events, all of them, and extraordinary miracles, all in one.

If I couldn’t lay claim to miracles in Room EP4 at Children’s Hospital of Pittsburgh, then I had no business praying to the God Who provided them.

And if I was looking for miracles, I didn’t have to search long. Seizing in Phase One is in itself worth celebrating. Several nurses told me that many patients who seize daily at home won’t have a single seizure during a two-week hospital stay. “The parents can’t believe it.”

I would claim that miracle, too, the miracle of seizures.

And not only seizures, but perfectly timed ones, as well.

Did you know it usually takes until the sixth or seventh day of Phase One to capture a seizure while hooked up to that machine for the SPECT scan? The patient has to seize on a weekday between the hours of seven and three, and seizures are not that easy to schedule.

Sometime over the weekend, the doctor told me, “We have the hardest test behind us. You’re on the downhill stretch now.”

I did not know, when Tarica had that seizure just before one o’clock on Friday afternoon, the second day of her stay, that a miracle was happening, but I knew it now—and my heart nearly burst with thanksgiving. I wished I could personally thank everyone who was praying for us. If only they could stand here and see the miracles happen.

I didn’t want to be anywhere else in the world at the moment. I had a front-row seat, and I was afraid to blink, for fear of missing something.

Tarica had no seizures that day, and it took her until after ten to fall asleep. With her constant fidgeting, I felt as if I had been on a trampoline all day, but though my senses were battered, my heart was quiet.

God was at work. I could rest in Him.

Phase One of Brain Surgery: Day 2, Part 2

Read about the first part of our day here.

* * *

Friday 3 PM until early Saturday morning

Someone entered our curtained alcove holding a syringe. They had decided to give her Versed, which is both an anticonvulsant and a sedation medication. Tarica was injected with the drug, and when she didn’t stop seizing, injected with more.

Finally the seizing stopped.

When everyone was reassured that Tarica had stabilized, the crowd drifted away while the doctors consulted among themselves. Finally, the original sedation doctor spoke to me.

This cluster of seizures had changed their plans. With sedation, patients breathe on their own. But during a seizure, Tarica could not protect her airways, and if she would seize while she was sedated, it could be dangerous. They believed the safest choice for Tarica was general anesthesia, which includes a breathing tube.

The doctor in scrubs who had been by the stretcher during the seizing explained what was involved with GA (general anesthesia) and produced papers for me to sign. Soon after, we were taken to Nuclear Med, where the SPECT scanner waited. Tarica was transferred from the stretcher to a narrow bed which fed into the machine’s mouth. She seemed disoriented, likely from the seizures and the medication, and did not protest too much.

At this point, I was led away. Although I could have stayed with her for sedation, I was not permitted in the scan room for GA. Perhaps it’s for the best. Do any parents want to see a breathing tube worked down their child’s throat?

Jaime, a radiology nurse wearing a pink shirt and a warm smile, had been the first to greet us when we arrived on floor two. She had been with us during the drama. Now she took me to a nearby waiting room. When I mentioned that I hadn’t eaten yet that day—and it was after three—she showed me how to get to the cafeteria and back.

In the cafeteria, I looked around blankly. Too many choices. If only someone would give me my food without my having to decide what to eat. Even choosing my drink required three minutes of concentrated effort.

I took my food to a table by the courtyard windows, just down from the table where I had sat with my parents and sister eleven months ago, waiting for Tarica to return from her MRI. Even though I could do nothing for her now, it felt wrong to be so far from her, eating and drinking, when she was hungry and helpless. And alone. What if something went wrong, and they couldn’t find me in the waiting room?

I ate quickly and returned to floor two.

In the waiting room, a woman asked me if I’m Amish, and I said no, I’m a Mennonite. She then wanted to know the difference between Amish and Mennonites, and before I knew it, Jaime came back.

“She just came out of the scan room,” Jaime said, “and she’s in recovery. I’m taking you to the recovery waiting room. They’ll come get you when she wakes up.”

She escorted me to the proper room, gave my name to a receptionist, and wished me the best.

I didn’t have to wait long. When I was taken to the recovery room, Tarica was awake and, thankfully, calm. The breathing tube had given her a barking cough and sore throat. I fed her red slushie and talked with the attending nurse while we waited for transport to escort us back to floor six.

“Where’s the doctor in the pink shirt?” Tarica croaked.

I spooned slushie into her mouth. “Her name is Jaime. She’s a nurse, and she had to get back to her work. She doesn’t work in this room.”

Back again in the safety of Room EP4, I presented Tarica with pancakes drenched in syrup. She barked a cough and asked for more slushie. Don’t want pancakes. She tried her grape juice. Hurts my throat. She pushed it away.

“Eat a bite of pancake.” I offered a loaded fork.

She turned away. “I want more slushie.”

Her slushie was nearly gone, and she needed to eat more than colored sugar water. But she turned up her nose at everything on her tray.

She and I were still debating over her food when Jayne came in. I said, “Tarica’s not interested in her food, even though she hasn’t eaten all day.”

Jayne nodded knowingly. “General anesthesia can do that, and her throat hurts from the breathing tube.” She turned to Tarica. “How about some ice cream?”

Tarica leaned back her pillow, a queen surveying her subjects—or was she just a mixed-up little girl? My mother-heart chose the latter. “Do you have banilla?” she asked.

“We sure do have banilla,” Jayne said.

Tarica had slushie, ice cream, and a few bites of pancake for supper. Nutritious.

The rest of the evening passed by pleasantly. No, beyond pleasant—it was an oasis of joy.

Tarica, with the seizures behind her for the moment and without medication in her veins, was the little girl I remembered from a year ago. Gone was the edge, the bite, the defiance, the glazed eyes. She was the most lovable creature on earth that night, and my heart ached because this sweetness was short-lived.

I have written of her fighting needles. I have written of her seizing. I did not cry with the writing. But now, remembering our Friday evening, I cannot hold back my tears. She was my Tarica again, so briefly, and it was bitter and sweet swirled together in the cup. I drank of it deeply.

I cannot remember what we did that evening, neither did I take any pictures, unfortunately. I can recall only the joy. And one conversation.

“Are we doing tests tomorrow?” Tarica asked me.

“Nope, no tests. Some visitors are coming to see you. And we can eat breakfast, lunch, and supper. Won’t that be fun to eat whenever we want to?”

“I want to eat tomorrow,” she said and grinned her impish Tari-grin. “All day.”

DSCN1570

This photo was taken another night, the first time she wore her Strawberry Shortcake hospital gown, a gift from a little friend who also has seizures.

It was an evening I didn’t want to end.

My sweet Tarica must have felt the same way. She beamed her way past nine o’clock, bounced through ten o’clock, and kicked her blankets over eleven o’clock. It was nearly 11:30 when I stepped out of the room to find the nurse. (I hate using the call button, especially at night.)

Tarica’s night nurse, Kalani, looked up from her desk. “Do you need something?”

“Yes, I need something to calm this girl down. What is wrong with her? She won’t go to sleep.”

Kalani smiled. “That’s a common reaction to general anesthesia. And you’re never going to believe the cure.” She paused a beat. “Caffeine. Would she prefer Mountain Dew or Pepsi?” Seeing my raised eyebrows, she said, “We do it all the time, and it works.”

“I’ll take your word for it,” I said. “She likes Pepsi.”

For the record, Kalani was right. Tarica was sleeping in about forty minutes.

I climbed onto my hard sofa bed and tried to go to sleep. Just about the time I was wondering if the leftover Pepsi would cure my insomnia, Tarica seized. I leaped up and punched the event button. Kalani came in. Since Tarica slept through the seizure, there was nothing to do but go back to bed when it was over.

Ten or fifteen minutes later, she seized again. Again the button, again Kalani. She pulled the blanket off Tarica, whispering as she did, “So the camera can record her movements in a seizure.”

But two seizures this close together was too much. Kalani returned with a syringe. “I’m giving her a dose of Ativan. The doctor doesn’t want her seizing more than twice in one hour.”

Seizing in Phase One is a delicate process. The doctors want to see seizures, but not too many, lest they do damage. Medication is taken away and given accordingly. Every patient has a customized emergency plan with several drugs on hand to stop a seizure that goes longer than a few minutes, or to prevent too many seizures in a short time. When Tarica had her seizure cluster down on floor two, that plan and those drugs were not quickly available, which is why her seizures were not stopped sooner.

Quiet resumed. I finally fell asleep. I thought I could never sleep through a seizure, but I missed the two that happened around 2:30, waking only when Kalani came in with a second dose of Ativan.

That ended her seizures and our day.

But not the story. I’ll be back soon with more.