Tag Archives: trusting God

My Guilty Secret (and Great Struggle)

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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.

Inadvertent Lessons in Prayer

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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

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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.

When Love Is Not Enough

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A year ago today, we sat by Tarica’s bed at Children’s Hospital of Pittsburgh, waiting for the MRI results. We did not know what was wrong with her, and we prayed for strength to face the verdict.

Today, another set of parents sit by the bedside of another little girl in another hospital. Shianna had a severe seizure last night and was airlifted because she was unresponsive. I don’t want to think about the terror her parents felt. And her story strikes closely home: She is my cousin’s daughter.

After I heard the news, I put my head down on the table and cried one big gulping sob. But no more. Tears would not help. I sat up, wiped my eyes, and reached for the words.

This one is for Shianna, for all the little ones who fight battles bigger than they are, battles that break our hearts.

* * *

When they were small and sad, I held them until they smiled. When they fell in those first toddling steps, I scooped them up and kissed away the hurt.

Our world was little and safe and predictable. I doctored scrapes and colds, and I made oatmeal and promises, and we all lived as happily as if Ever After was now. I loved my children so strong it felt as if nothing could touch us.

But reality pricked holes into my cocoon of safety. There was the burn on Jenica’s face, scars she still wears. There was Tarica’s colic, and there was Micah’s repeated bronchiolitus/asthma attacks during his first year. There was the challenge of helping our daughters negotiate broadening social worlds and the difficulties found outside our sheltering walls.

My children faced problems I could not fix. I was helpless to counteract their pain, and it hurt. I wanted nothing more than to preserve our safe little world.

And then came—not a pinprick, but a slash, a tear, a gash through my world. Epilepsy took away my safety net, and I fell and fell and fell.

I could not love her enough to protect her, to heal her, to make promises, and it was a slash, a tear, a gash through my heart.

I think all mothers face this sooner or later. Some lose that safe cocoon on the day they find the unmistakable stamp of Down’s syndrome on their precious newborn’s face. Some lose their safety net in weeks spent in the NICU or in the wreckage of an accident or in the irrevocable words of a medical diagnosis. Social rejection. Academic failure. Marital conflict. Brutal words.

My love is not enough to keep my children safe.

What does a mother do when love is not enough?

She cries. She worries. She fears. She hugs them until they squirm in protest.

She alone is the mother of these children. No one else has loved them as she has, and who else feels this pain so deeply?

But if she is to be comforted, she also prays, because who else but God can comfort?

Lord, be for my children what I cannot.

And love—His love—is enough to bring us safely home.

* * *

P.S. I talked with Shianna’s aunt this morning, and it sounds like she is doing better. They suspect it was a febrile seizure.

No matter the diagnosis, it will be a long time before her parents forget the terror. I pray they will know God’s peace and comfort in the coming days.

Phase One of Brain Surgery: Day Six

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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.

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After that was story time with Aunt Cass.

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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.

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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.

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

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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.

Throwing Like a Girl

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At this time tomorrow, Tarica and I will be setting up house inside the walls of Children’s Hospital of Pittsburgh.

I feel as taut as a piano wire.

Last night, I read and reread that familiar verse, trying to saturate myself in its truth: “Casting all your care upon him, for he careth for you.” (1 Peter 5:7)

Throw all your anxiety on the Lord, Stephanie.

I’m trying, I’m trying, but it keeps falling short of its goal.

Stress has always robbed me of my sleep and my appetite. But I actually slept last night—except for a brief, wakeful watch in the hour of three—and that is a minor miracle. Now I just have to get through breakfast, lunch, and supper.

Tarica is looking forward to her hospital stay, but I suspect that has something to do with the air of Christmas around here. Such a sneaking around with mysterious parcels and boxes she isn’t allowed to open and packages arriving in the mail. It’s enough to drive any little girl into spasms of curiosity.

But she doesn’t have enough spasms otherwise.

My husband is an appliance repairman. He has lost count of the times he has gone out to a customer with a clunking washer or leaking dishwasher that runs beautifully while he, the repairman, is there. And haven’t you done this, too? You finally set up that doctor appointment, but the symptoms eased or disappeared shortly before you got there.

Despite having her medication cut in half, Tarica isn’t seizing enough, and tomorrow she is to be hospitalized to study her seizures.

It’s embarrassing to admit how much this worries me. What if she doesn’t seize enough for the doctors to locate the seizure focus?

A month ago, I would have been wild with joy to be in these shoes. Now, I am just sick with worry. A lot of time and inconvenience and prayer has been invested in these ten days at Children’s. A lot of money will be, too.

And what if she doesn’t seize?

(Okay, maybe a miracle did happen, maybe the seizures are gone, her epilepsy healed—I’m not discounting this as a possibility. But the not knowing eats at me.)

I’m trying to throw my worries on the Lord, but I have a terrible arm. I crave your help.

Pray for us.

Pray that Tarica would seize enough to give the doctors the needed information. Pray that her mind and spirit would be calm even if her brain isn’t.

Pray for Linford and me, that we would be strong and that our faith would not waver. Pray that I will be able to eat and sleep.

Pray for safe travels as Linford drives back and forth between his divided family.

Pray for the doctors, that they would have wisdom and discernment.

Pray a blessing on those sacrificing to help us.

Pray as the Lord leads you.

Pray His will be done.

Pray.

Family Photo Closeup

Several postscripts:

The photo above was taken this past weekend by a talented friend, bless her heart. She did a fabulous job with limited resources and time. (Jenica is seven; Tarica is five; Micah is twenty months. Dad and Mom are not as young as they used to be.)

I don’t know if I’ll be able to post updates while at the hospital. It all depends on… everything. Sometimes it’s difficult to write of an event while in the middle of it. Also, if Tarica goes ballistic, I’ll need to concentrate on her.

And thank you for praying. It’s not from lack of prayers that I feel anxious; it is my own weakness.

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest. (Joshua 1:9)

And Keep Us Safe Till Morning’s Light

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For the first part of this story, go to Be Careful What You Pray For.

* * *

I hovered over Tarica as she continued to seize, despising my inability to help her. She was stiff and motionless, but for her grimacing mouth. Her eyes were wide and fixed and unfocused.

Any second she would stop, any second now, but seconds turned into minutes.

I don’t know how long the whole seizure lasted. At least twenty minutes. It felt like an eternity before her body relaxed and she moved her head, eyes and mouth finally closing.

When I cleaned up her face, she was as limp and unresponsive as a rag doll. To reassure myself, I took her hand and said, “Squeeze my hand, Tari.”

She squeezed. So did my heart, a giant throb of relief.

She was back.

Thank You, God.

I called my mom with the details, wanting her prayers, and while I was on the phone, Tarica began to cry. She clutched at me, and I sat down beside her and lifted her onto my lap. Which is why I felt the first heave. I stood up in time for her to throw up on the floor instead of both of us.

She sagged against me when it was over. I lowered her to the floor beside the sofa since her socks were wet. She slid sideways into a heap and fell asleep.

It was then that I finally realized why her seizure had been so awful: She was sick. Her medication had run right through her during her many trips to the bathroom.

Tarica had not been sick for ten months, other than brief colds. This was unusual for her. If anyone in our family was going to be sick, it had been her. Until last March. You can’t tell me God wasn’t involved with this change.

And if God was involved with the absence of illness, then He was involved in its return. The timing was inescapable. I had asked Him for confirmation, and this was my answer.

This is what we risked, every time she got sick. Epilepsy turns normal childhood illnesses into brain-threatening conditions, especially for a child without good seizure control.

I had yet a huge hurtle to cross, and I needed help to get over it. I let a message for the on-call neurologist at Children’s. When she called me back, I told her what had happened, faltering in the telling of my fumbling efforts with the rescue medication. When I stopped mid-sentence, she laughed and said, “Go ahead. I’ve heard it all.”

That may be, but it wasn’t me telling the story. Hurriedly, I confessed all, and then said, “I have to give her her evening dose soon. What if she throws it up?”

The doctor laid it all out. If Tarica threw up her medication within an hour of taking it, I could safely give her a second dose. If she threw the second dose up, she had to be taken to the ER, where she could be given the medication by IV.

Also, if she had another seizure that lasted longer than two minutes, she had to get to the ER as soon as possible. The longer the seizure, the less likely it would stop on its own, and if two such seizures occurred in a short time, the more likely they would cause brain damage.

When I thought about the night ahead, I felt like I had to throw up.

Tarica slept on the sofa while I collected prayers through phone calls and texts. During this time, Linford and I studied the rescue drug components that had baffled me. He managed to get a syringe full, and I, with steadier hands and clearer head, figured out how to put it together properly. Next time—would there be a next time?—I would be ready. I would know what to do. Never, never again would I take that risk.

When she awoke, I took her to the kitchen and knelt beside her. “Tarica, I need to give you your medication, but I think we should pray before you take it.”

She looked at me uncomprehendingly, eyes heavy with post-seizure exhaustion. When I bowed my head, she leaned into me.

“God, Tarica needs to take her medication, but her tummy is all mixed up. Help the medication to stay in her tummy so she doesn’t have more big seizures. Help us both to sleep tonight and keep us safe. In Jesus’ Name, Amen.”

I gave her the medication, got her ready for bed, and tucked her in.

We couldn’t leave her alone, so Linford stayed with her while I prepared for bed. When he left and I climbed in beside her, I was as fearful as a child.

She tossed and turned and finally slept, but it was a restless sleep that kept me awake. That is, it would have, if my fear hadn’t been doing a good job of that already. She kept making a strange gulping sound with her mouth that sounded like…well, you know.

But the medication stayed down. When an hour had passed, I relaxed slightly. Not that I slept. Shortly before 1:30, when her breathing quickened and her body arched, I was up in a flash, hovering over her, counting seconds as she seized.

“One and two and three and…twenty-four and twenty-five and Dear God make it stop and twenty-eight and twenty-nine….” I had reached the upper thirties and a new level of fear when the seizure weakened. And then it was over and she slept, deeper and quieter than before, and I slept, too, lightly but somewhat reassured.

And that’s the end.

Tarica was fine the next day, her illness behind her. I didn’t recover so quickly, but I was grateful for God’s care. We were at home and she was fine. Nothing else was as vital as that.

* * *

So many prayers, so many answers—but I was growing weary of trying to sort through them. Once more, a story from my own life pulled aside the trappings I try to hide behind.

In this story, I see the truth of my search for God’s will, and it is this: I try so hard to make the right choices because I struggle to trust that God will work out the details on His own.

It’s as if I believe I need to do most of the work.

Yes, I should desire to follow God’s will, but I should stop trying to nail God down and simply trust Him to make my path straight.

As if there’s anything simple about trust.

Why This Mennonite Doesn’t Have Health Insurance

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The phone rang, and “UPMC” popped up on the caller ID. Children’s Hospital. I picked up, expecting to hear a familiar voice, but the man on the line was a stranger.

“My name is Bruce. I’m a social worker with Children’s. Dr. Thakkar asked me to call because she’s worried about you. You’re considering brain surgery for your daughter, correct?”

“Yes, we are.”

“Since you don’t have health insurance, Dr. Thakkar is concerned you will bankrupt yourselves trying to provide care for Tarica.” He paused. Papers shuffled. “Your daughter qualifies for a government program that covers the medical care of uninsured children with disabilities. I’d like to send you the program information so you can look it over. I know you’re Mennonites and you have chosen to not have health insurance, but brain surgery is expensive.”

Finally, someone who was talking money. “How expensive?” I asked. “No one seems to know how much money is involved.”

“I don’t know,” Bruce said. “I can only guess. Maybe a quarter of a million?”

It’s a dreadful thing to put a price tag on your child’s future.

I asked, “How much of her medical care would this program cover?”

“All of it.”

It’s even more dreadful when your principles collide with your child’s future, and you realize you might attain one at the expense of the other.

The Amish and conservative Mennonites have traditionally refused to insure themselves or to accept government aid. Most of us would admit there is nothing morally wrong with either of them. Many of us are protected from having to make a decision on it because tradition has already done it for us. Because of this, I had spent little time thinking about insurance.

Until now.

Why do we avoid insurance? Just because it’s our tradition? Or do Biblical principles stand behind our choice? Traditions change, perhaps slowly, but they do change; Biblical principles do not. If nothing but tradition stood between our daughter and the best care possible, I was willing to buck it. Oh, the things a Mennonite mother will do for her children.

I did some studying and thinking, and I arrived at three conclusions. These conclusions apply to me, in our situation. I am not applying them to anyone else or judging anyone for making different choices.

1. When I am not insured against disaster, I depend more fully on God.

Isaiah 31:1 says, “Woe to them that go down to Egypt for help; and stay on horses, and trust in chariots, because they are many; and in horsemen, because they are very strong; but they look not unto the Holy One of Israel, neither seek the Lord!”

We choose to trust the Lord instead of the horses of Blue Shield and the chariots of State Farm. Trusting God feels scarier than making a monthly payment. It feels like we’re doing nothing, but it is actually the most we can do. God is more powerful (and more trustworthy) than the insurance companies.

Allstate, a large insurer in the United States, has had an advertising slogan since 1950: You’re In Good Hands with Allstate. That may be—I’m not here to debate the particulars of insurance companies—but I’d rather be in His Hands than Allstate’s.

2. When I am not insured, I depend on my brotherhood, the church, for help during a disaster or financial difficulty.

When a member has large medical bills, our church, both our congregation and the larger conference of 20+ congregations, collects free-will offerings to cover what the individual cannot pay. We contribute to these frequent offerings whenever we can, because this is what it means to be a brotherhood.

This practice cultivates dependence within the brotherhood and encourages us to practically show our love for each other. A large part of my trust in God involves trusting that He will provide for me through my brothers and sisters in Christ.

3. When I trust God to care for me in a particular area, I open an avenue for His grace to enter my life.

If we had insurance, do you think we would have needed God to provide for us through a stranger, a friend, and unexpected visitors? Perhaps He might have done so regardless, but we would not have needed it so badly nor been so thankful, had we been insured.

This is not to suggest that God’s people never suffer. Their houses burn down; their children die; their bodies succumb to cancer; their vehicles go out of control on black ice. We live in a sin-cursed world where bad things happen, no matter if someone is in Allstate’s hands or His. But those who trust God (with or without insurance) emerge from suffering as stronger and better people—because of His grace.

After my conversation with Bruce, Linford and I talked about what to do. Linford discussed it with our deacon. We talked it over some more. Finally, I called Bruce back and said he could send us the paperwork. We weren’t, however, promising anything. We just wanted to see the information.

“We are part of a program that is available to Mennonites in our area,” I told Bruce, “and through that program we can get steep self-pay discounts on our medical bills if we pay within thirty days. Our church can and will help us to pay our bills. We are not facing this alone.”

There was another issue involved, and I brought it up to Bruce: “The federal government recognizes the Mennonite practice of taking care of each other instead of having insurance. We have been granted exemptions from the Affordable Care Act. But how consistent is it to refuse with one hand and take with the other? That’s what we’d be doing if we apply for this disability program.”

When the documents arrived, we read over them. Linford asked me to do some research and report my findings to him. We then made our decision.

We would not apply to the government for financial assistance.

We may appear foolish, stubborn, and blind, but we have Better Hands to hold us.

The premiums are high—He requires me to love Him and my fellowmen—but His was the greater cost.

If I surrender to Him, He will never deny my claim.

How Do You Do It?

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I am asked this question a lot.

“How do you do it?”

What they mean is: How do I live with the knowledge that my daughter could have a seizure at any time? How can I let her out of my sight? How can I stand the helplessness of a seizure? How do I handle the stress of epilepsy, of possible brain surgery?

How do I answer that question?

Perhaps I should ask the mother whose newborn son is in Hershey Medical Center, recovering from one surgery and facing another one this week. He was diagnosed with CHARGE syndrome. How does she do it?

Perhaps I should ask the great-grandmother who lives with muscle and joint pain every day. Her quality of life has deteriorated, and she is ready to go Home. How does she do it?

What about the foster mother who poured her heart into two small boys for six months, only to return them to their parents the week of Christmas? How does she do it?

And then there is the mother of newborn twins and a very busy thirteen-month-old son. How will she do it? (I won’t ask her; I doubt she knows.)

What about you? How do you do it? How do you handle the pain, the frustration, the problems in your life?

I cannot imagine being any of the women I mentioned above. I cannot imagine being you. Despite facing something that people consider hard, I have no idea how other women do it.

Why?

Because I have been given grace according to my need—epilepsy grace, if you will—and that grace is not sufficient to handle other people’s problems. It is for me alone.

We all struggle, we all hurt, we all cry. No other person can carry our burdens for us or fight our battles. I alone know what it’s like to live inside my skin and bleed this pain, and you alone in yours.

We are all given grace, if we go to the Father, according to our needs. It’s why we can’t comprehend how someone can endure trauma and pain—our grace is not theirs.

It’s also why we dare not compare our pain and our situations. Because His grace is poured out in proportion to our needs, epilepsy is as manageable to me as the stomach virus is for someone else.

Yes, I just said that, and I meant it, although I should clarify: Hardships and pain are manageable only when we allow Him to manage us. And being manageable doesn’t make hardship easy. Pain still hurts, despite the grace. Grace is not a wall to protect us; it is a salve to heal us.

How do I do it?

Some days, I don’t.

The days I do, it is because His grace has bound up the brokenness and soothed the jagged edges.

My Father does it.

That’s the real answer, and the only one that counts.

I hope that’s the way you do it, too.

Why I Need to Stop Trying Harder

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I made some huge mistakes in a relationship recently. I completely blew it, I did, blew it so big and so hard that the explosion covered my head and my face in sticky regret. I will be picking it out of my hair for weeks to come.

In the aftermath, I said, “I will try harder to be the woman I should be.”

But that night I tossed and turned until long after midnight, restless with the knowledge that I had been trying—and look where it got me. Oh, maybe I wasn’t trying as hard as I should have been. I had gotten tired and discouraged and careless. I had said and done things I shouldn’t have.

Did this mean I should try harder? Is that the best way to repair the broken parts of me?

I have spent my life trying harder. Trying to have more faith, more trust, more submission. Trying to be more faithful and loving and joyful. Trying to produce more spiritual fruit. Trying harder to please God and serve others.

But I always end up covered in regret. I mess it up over and over.

What is wrong with me?

Why does the fruit of the Spirit so often dangle tantalizingly out of my reach?

I sat with my Bible and my questions for a long time, carried my questions around as I filled the washer and gave a wheezy little man a nebulizer treatment, went back to my Bible again, and after a while, my questions began to turn into answers. None of the answers are new to me; some of the verses are embarrassingly familiar. But God’s Word takes on new meaning for me in the context of a spiritual struggle.

This fruit that I want, the love, joy, peace, long-suffering, gentleness, goodness, faith, meekness, and temperance that elude me too often? It’s called the fruit of the Spirit. Not the fruit of Stephanie. It is the fruit produced in the life of the believer by the Spirit of God.

I know this. Why do I try to manufacture the fruit by my own power?

“For it is God which worketh in you both to will and to do of his good pleasure” (Philippians 2:13). This verse flies in the face of my frequent declarations: “I will do better.” I cannot do better. “There is none righteous, no, not one” (Romans 3:10). When it comes to spiritual self-improvement—well, there is no such thing as spiritual self-improvement. God is the one who makes me holy and acceptable in His sight.

I know this. Why do I try so hard to improve on my own?

But I’ve got to do something. If I can’t make myself good enough, if I cannot produce the love and joy of a Christian on my own, what should I be doing?

Part of me hates the answer, because it’s so…so humbling. It feels far more honorable to climb the tree after the fruit all by myself. I feel more productive climbing the tree—even if I never find any fruit—because I’m working so hard at it.

This is what I must do: I need to yield. Instead of chasing after fruit, I need to run to God and fall at His feet. I need to surrender, give up my need to be in control of the fruit basket. It’s not my job to produce the fruit, but it is my job to serve the One Who will cultivate a more worthy crop in my heart than any efforts of mine could ever rake together.

Romans 6:21 & 22 says it far better I can: “What fruit had ye then in those things whereof ye are now ashamed? for the end of those things is death. But now being made free from sin, and become servants of God, ye have your fruit unto holiness, and the end everlasting life.” (emphasis mine—and please don’t skim the verses, because they are more important than anything I’m saying here)

Instead of trying to love, I need to learn to know the God of love more fully—and His love will then bloom in my heart.

Instead of trying to grow more faith, I need to draw closer to my Father—and He will water my faith.

Instead of trying to exert more self-control over my unruly heart, I need to yield everything to Christ—and He will prune and shape my heart.

I’ve been trying to fertilize the garden when I should have been cultivating my relationship with the Gardener.

Don’t take me wrong. There are many things to do in the kingdom of God. I can’t sit around with a dreamy smile, waiting for God to make me more long-suffering. Spiritual fruit is produced as I live my life, and the work God gives me is often that which helps me to be more fruitful.

In John 15:4, Jesus said, “Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can ye, except ye abide in me.” (emphasis mine)

I need to stop trying so hard to be a woman of God.

I need, instead, to abide in Christ and let His Spirit produce the fruit I long to see.