Author Archives: Stephanie

A Brief Update

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We are entering day six of our hospital stay. Tarica is sleeping as I write this, and I hope she stays asleep for a long time. She has a PET scan at 3:30 this afternoon and won’t be able to eat or drink until sometime after that. The more hours she sleeps through her fast, the easier it will be.

Behind us are five days of weariness and wonder. Although we hit a few bumps in the road, God has been clearly directing our course. Our prayers, your prayers have been heard and answered. It gives me goosebumps just thinking about it.  I can’t wait to tell you all about it.

But it’s a long story, still to be fully lived and written—and of course, I want to tell it properly, without spoiling all the surprises now. Here at the hospital, I barely have five uninterrupted minutes to think, much less write. Although Tarica is doing very well, she is still only five and needs almost constant attention and supervision. This quiet time in the morning is my only break, if I can wake up enough to enjoy it.

God has been so good to us. Thank you for your prayers.

I’ll be back with the beginning of the story sometime soon.

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)

Preparing for Phase One of Brain Surgery

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What is involved in Phase One of brain surgery?

I don’t know all the details, not like I will in a few days. But I have been doing some reading and research on Phase One so I can look intelligent when doctors start slinging around words and acronyms like isotope and PET and magnetoencephalography. With all this information backing up in my brain, I need to sort through it by writing out what I currently know.

If I keep the technical simple, perhaps you will not mind if I share it with you.

First, a word of explanation: Our daughter will be entering Phase One of brain surgery this week, but this doesn’t mean she is going for surgery. Only one-third of all patients who enter Phase One qualify for Phase Two, which is the surgery itself.

The hospital sent us a packet of information on the tests Tarica will likely face during her stay. This shed more light on what to expect, although the information was general, not specific to her case.

Here is what we know:

Video EEG

During her stay, Tarica will be continuously monitored on Video EEG, except when she is undergoing other testing or needing a bathroom break. This means she will have 26 button-shaped electrodes glued to her scalp, which are attached to a box which is in turn hooked up to a machine. She will be confined to her room, specifically the bed and chair.

A parent is required to be with the patient at all times. Whenever Tarica has a seizure, I am to push a button to alert the monitoring staff and to create a marker on the test recording for review purposes.

MRI

She will have at least one MRI, a test which takes picture-like images of the brain at different angles. Because the patient is required to lie still for a long time, Tarica will likely be sedated for this test, which of course means all kinds of lovely food and water restrictions.

PET

The PET scan observes the metabolism of brain cells. A radioactive substance (“completely safe and will not harm your child”) containing glucose is injected through an IV. Tarica will need to rest quietly for 30-90 minutes, until the substance reaches her brain. Once in her brain, the glucose in the substance binds with the brain cells. The PET scanner, a large doughnut-like machine, can now read brain cell activity because it is lit up with this clingy radioactive stuff.

Seizures create areas of intense activity, so no doubt it would be helpful if Tarica would have a seizure during this test. Is that too much, too strange to pray for?

SPECT

SPECT imaging detects changes in blood flow within the brain. During a seizure, blood flow is highest at the point where the seizure originates.

This test is taken twice, once when there has been no seizure activity for some time. The second test is taken after a seizure occurred. A radioactive substance (“safe and will not harm your child”) is injected during a seizure, and when the test is taken a few hours later, it reveals the blood flow in the brain at the time of injection.

I don’t understand how the test can be taken several hours later and be accurate, but I’m sure they know what they are doing.

MEG

I don’t know if a MEG study will be done this time. We were given information on it, so it’s possible, but the MEG imaging machine is located at a different hospital.

A MEG test uses sensors to form an image of magnetic fields within the brain. For once, no radioactive substances are involved. It reads the brain in ways similar to EEG. Electrodes are attached to the scalp, and then the patient is strapped down and slid into a machine. Unlike other tests, no one can be in the room during this scan, which takes about an hour.

I’m not seeing this test as doable for Tarica unless they sedate her. Between her claustrophobia and her fear of being alone with (and inside) a big machine—there’s little chance she’ll accept it quietly.

Other tests

There are other tests, not all of them happening on this stay. A language evaluation will be done while Tarica is on video EEG. This test takes several hours and may require more than one session. A psychiatry evaluation will be completed during this stay, which is largely to determine the emotional stability and coping abilities of the patient, and to discuss fears and concerns (both hers and ours) about what may lie ahead.

A neuro-psychology evaluation will assess Tarica’s developmental, memory, cognitive, language, and attention abilities. This test is not done during this stay, according to the information I have.

Last week, I received a call from a nurse at Children’s, the first of several, she said. The specifics begin. Starting today, I am cutting Tarica’s medication doses approximately in half. This is ensure that she is seizing frequently by the time she is admitted.

It’s a recognized fact that patients who are seizing regularly will sometimes stop seizing upon admission to a hospital. I could spend a lot of time worrying about this possibility, but I’m trying to trust God with those details.

I’m trying to trust God with a lot of details, but there are some details—like the packing and preparing—that belong to me. The next few days will be busy.

Not that I haven’t had help. I have been astounded by generosity over and over again recently, but that’s another story.

Thank you for allowing me to write this. I think I shall be able to remember now what a PET scan does and that there are two SPECT tests.

Sometimes the biggest preparations are the mental ones.

Thoughts on a Deadline–or Two

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There is so much to do.

Time is running away from me. The deadline is imminent. Soon, it will not matter that I’ve not completed my to-do list. We will go, regardless of whether we feel ready or not.

I’m trying to prepare my children. We talk of it every day, and I assure them that, although we don’t know exactly what lies ahead, this does not have to be scary. We are trusting God to care for us. He will never forsake us.

I think of it all the time. I filter my plans and actions: Does this help me get ready, or is it a distraction? Unfortunately, this does not prevent me from accidentally distracting myself anyway. I must be more focused in the days to come.

When I look at all that remains to be done, I panic. The last few weeks went by too fast. What did I do in January? It’s gone already, and I’ve barely started.

On Saturday, I was reading over the papers that outlined what to expect. It was too much, too overwhelming. I have no idea how we will manage it. I speak to my children of trust, but my own heart trembles.

This will change us, as all experiences do. I’m not sure this pleases me. I like who I am now, who we are now, and I fear being different.

And what if the answer, the result, breaks our hearts? Oh, God, let it not be so.

I’m talking about preparing for our daughter’s hospital stay.

But I could be, should be, talking about preparing for eternity.

I pray I will be prepared for both when they come.

On Loving Birds and God

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A bird feeder hangs outside our dining room window.

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Nearby trees provide shelter, and a small stream with shallow pools for drinking and bathing is only a sunflower seed’s toss away. With the feeder added to this natural haven, our little corner of the neighborhood attracts crowds of songbirds.

We spend many meals discussing the visitors to our feeder. “Look,” shouts Tarica around a mouthful of chicken. “There’s a titmouse.”

The girls recognize most of the birds dining on the other side of the window: cardinals, woodpeckers, nuthatches, chickadees, sparrows, wrens, and finches. A new bird at the feeder sends one of us running for the bird book, and we pore over its pages, making guesses and debating characteristics until the bird is identified. “That’s an Eastern Towhee,” my husband says. “Look at its red eyes.” And the children fog the windows looking, standing on tiptoes peering, talking in loud whispers.

Downy Woodpecker

 

Last spring, an Eastern Phoebe pair built a nest on top of our outdoor floodlight, a few feet away from the feeder. Each morning at breakfast, the girls watched Mr. and Mrs. Phoebe fly back and forth, their beaks clamped around insects, food for their hungry babies. “Mom,” said Jenica, “I thought you said those birds are flycatchers. Why do you call them phoebes?”

“They are phoebes, but they are also known as flycatchers.”

She frowned. “How can they have two names?”

“They have two names just like you do. They are phoebes belonging to the flycatcher family, and you are a Jenica belonging to the Leinbach family.”

Her laughter warmed my heart.

At lunchtime on a summer day, Jenica announced, “I hear a cardinal.”

We stopped eating and cocked our heads. A bright “birdie, birdie, birdie, cheer, cheer, cheer” floated in through the screened door.

“I see it, girls,” I said. “Up on the telephone wire.”

They abandoned the table to crowd the window space and watch the scarlet singer serenade us.

Our children love birds as much as we do.

* * *

Sometimes, as a mother, I worry. I worry we will fail to teach our children to love God as they should.

I was worrying about it again today, wondering what we can do, wondering if there are any secrets to teaching children to love God. I was worrying about it—until I realized:

We will teach them to love God the same way we taught them to love birds.

Defining Epilepsy Terms and Our Situation

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It is my goal to share our adventures with epilepsy by telling it as a story.

I believe in the power of story to change lives and touch hearts. Story is more compelling than bare facts. However, story limits me at times. I can tell you only what actually happened; I cannot invent stuff in order to make a point. Also, a good story will rarely stop halfway through and give a lecture on various facts to educate readers or to remind them of what happened a few weeks ago.

I dislike stories in which the characters talk to each other in order to talk to the reader—you know, when they say things that they both already know and wouldn’t say to each other in real life. If people did this in real life, one of them would say, “Duh. I was there. You don’t have to tell me all about it.”

The writer is doing this to tell or remind the reader of past events. It’s an easy trap for a writer to fall into.

In a book, a reader’s questions are more easily answered. If you can’t remember what exactly happened at the beginning, you can flip back and reread it. Here, on this site, it’s a little harder. And some of you have not been here since the beginning.

For these reasons, I’m going to give you some answers to the questions I’ve been receiving, online and off. Here are the facts. Not much story today.

What is a seizure?

The simple answer: haywire electricity in the brain. The complex answer? Uh…I’m sticking with the simple answer.

Everyone has electrical activity in his brain. A seizure is when those electrical signals go crazy.

If someone has a seizure, does that mean it is epilepsy?

Not necessarily. Fever, illness, or head trauma could provoke a seizure. Epilepsy is not diagnosed until someone has had two or more unprovoked seizures.

What kind of seizures does Tarica have?

A quick rundown on seizures: There are two main types of seizures, generalized and partial.

Generalized seizures mean both sides of the brain are involved from the start of the seizure.

Partial seizures begin in a specific area of the brain and remain there.

Complex partial seizure bridge the gap between the two types. They begin in a specific area and spread to involve more of the brain, sometimes becoming secondarily generalized.

The doctors believe Tarica has intractable complex partial seizures. The upcoming tests will reveal additional information.

I can’t define seizures more than this without getting confusing and wordy. Because each brain is unique, it is difficult to group seizures neatly into categories. There is overlap between the types.

What are intractable seizures?

Seizures which cannot be controlled by medication are known as intractable. They are also called “refractory” or “drug resistant.”

What do her seizures look like?

With no warning, she falls over backward. Her muscles are drawn tight, and her face is contorted. For the first part of the seizure, her arms and head twitch convulsively. Then her back arches and the convulsions spread to involve her whole body. Her head will tilt back until it seems it might break off her neck. Her eyes are wide and staring. While she does not wholly lose consciousness, she is not able to communicate or respond during a seizure.

The seizure lasts somewhere between 30-60 seconds. She is exhausted after it is over.

Why did her seizures change?

Back in March of last year, Tarica’s seizures lasted 10 seconds, maybe 20, at the most. Only her left arm and head seemed involved in the seizure. She did not lose her balance, and she did not convulse.

The tail-end of a seizure March 9, 2014

The tail-end of a seizure – March 9, 2014

 

By the end of the year, her seizures had escalated to what we are seeing now. Why? I have no idea. In my research, I’ve stumbled across repeated assertions that seizures do not usually grow worse over time. Why have hers? This is a question I want to ask the epileptologist.

What is an epileptologist?

It is a neurologist who specializes in the treatment of epilepsy, especially involving methods other than medication, such as diet and surgery.

How is Tarica doing now?

She is doing very well. In the two weeks since her big seizure, all of her seizure activity has been confined to nighttime. We are praising the Lord for this break.

The doctors will likely lower her medication dosage to induce more seizures while she is hospitalized.

Didn’t the doctors already find her seizure focus?

First, a definition: A seizure focus is the place in the brain where a seizure begins.

Do you remember the doctor told us back in March that there is a tiny speck of abnormality in her brain which they considered to be the seizure focus? At our appointment in November, the epileptologist told us that he cannot be confident this is the actual origin. They consider her seizure focus to be unknown at this time.

Is she going for brain surgery?

No. She is going for testing to see if she qualifies for brain surgery. She will qualify if the seizure focus can be found, and if that focus is in an operable area. For example, if her seizures originate in an area of her brain essential to her memory, the doctors would not be willing to risk surgery, lest she be altered tragically and irrevocably.

Do you want her to have brain surgery?

Yes. No. Yes. I don’t know. She may qualify, she may not, but either result will be difficult to accept and to process.

More than anything else, I want her to not have seizures. If it takes brain surgery to accomplish that, then so be it. Of course, I’ll take a miracle cure, too. (God, are You listening?)

If she qualifies for brain surgery, we still have to choose to go ahead with it. I don’t look forward to making that choice. If something goes wrong, we could regret it all our lives.

Other than seizures, is Tarica “normal”?

Let me tell you one story.

While traveling on a December night, Tarica said, “Dad, guess how many Christmas lights I counted? It’s in the thirties.”

Linford said, “Thirty-three?”

“No,” she said, “it’s four more than that.”

“Thirty-seven?”

“Yup.”

Is she normal? I’ll let you be the judge.

* * *

Do you have any questions? What have you been wondering? Your questions will help me tell this story more clearly.

It’s snowing like crazy, and I’m going nowhere today. Go ahead and ask away.

How to Make an I Spy Bag–the Easy Way

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In two weeks, Tarica will be in the hospital. My to-do list is as long as my leg.

One of the things on that list was an I Spy bag for Tarica. I could buy one, but I didn’t feel like spending $20.00 for something I could make myself. When I looked online, I found dozens of patterns and ideas. However, most of them involved sewing.

Don’t get me wrong: I like sewing. I’m a Mennonite; unless I want to pay someone to make my dresses, I need to sew and might as well like it. But right now I’m booked solid at my sewing machine. Tarica has been in dire need of dresses, and I want to take enough clothes along to the hospital so I’m not worrying about laundry every few days. Plus, I need a few new dresses as well.

With all that sewing to do, I didn’t feel like stitching together a craft project. So when I found instructions for a no-sew I Spy bag, I was thrilled. All I had to buy was a pencil pouch at Walmart for 97 cents. I had everything else I needed.

Two things, before I begin:

1. This idea is not original with me. I refuse to take credit for it. Google this project, and you will find many who have gone before me, and more creatively, too.

2. I am not a photographer. These pictures I am about to show you would embarrass anyone endeavoring to be one. I’m sure editing would improve the photos, but I edit words, not pictures.

Enough with the excuses. Let the game begin.

We started with this:

  • a pencil pouch with a large window
  • 2 cups of Perler beads
  • little odds and ends from craft boxes and around the house, i.e. junk
  • a paper to list all the…uh…junk before it went into the pouch

DSCN1440

The girls had spent the previous evening ransacking the house for little things. They waved more items than these under my nose, but those I rejected because they were too large, too sharp, or too indescribable. A few indescribable items did make the grade, because I didn’t have the heart to say no every time.

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We filled the pouch with beads, and then I listed each I Spy item, the girls tucking them into the pouch as I wrote.

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I also collected my own pile of treasures, but I didn’t show them to Tarica. I want some of the things in the pouch to be a surprise. Buttons and beads are featured prominently.

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Jenica put my collection into the pouch while Tarica hovered at the other end of the room.

And then, we zipped it shut. Done. I’d do more crafts if they were all this easy.

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Everyone approved. There’s something addictive about the slide of the beads, the challenge of the hunt, the thrill of the find. Even I am not immune to it.

I want to type up the list and slide it inside the pouch for safe keeping. There are more clever ways to do this, involving laminating and hole punching, but I’m sticking with easy. I could also print out the photos I took of the junk, but as good as Tarica is at this kind of thing, she needs the challenge of not knowing exactly what each item looks like.

In looking over the photos, I just realized that we put two orange heart beads in the pouch. I’m going to have to change that. How would you ever know if you found the second one, or if you’re seeing the same one over and over again? Duplicates do not work in a pouch of moving parts.

This is one toy I’ll be keeping out of Micah’s reach. The site where I found this idea recommended putting a blob of hot glue on the zipper so it doesn’t “accidentally” come open. I didn’t do that because Jenica contributed the Perler beads—last year’s birthday gift—and she wants them back. I told her perhaps I’ll get her more beads, but until then, we won’t seal the zipper. I hope I don’t regret it. Did you ever pick up a thousand Perler beads?

Oh, and I guess what I found at a thrift shop the other day?

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I like how this book has pictures of each item to be found, with a number beside it. Not only will Tarica have the fun of looking for bugs, but she will get practice counting—and she can work independently. I’ll need to babysit her with the I Spy bag, since she doesn’t know what to look for next.

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A big thank you to all those who told me about the Usborne books. I doubt it would have stood out to me at the thrift store otherwise.

That is not all: The first grade teacher at Jenica’s school offered to lend us her 1001 Things to Spot on the Farm. From Tarica’s response to the bug book, I know she will enjoy the farm book as well.

Last week, I went through a period of wondering if I was overreacting. Did Tarica really need all this stuff I was thinking about taking?

Then we received a packet in the mail from the hospital, a stack of papers detailing what to expect during her stay and describing all the tests that would be inflicted upon her. The more I read, the worse I felt. Nothing short of divine intervention is going to get Tarica through this. Many of the tests involve sticking her head into a huge machine, and she is semi-claustrophobic. Besides, she is fully uncooperative when it comes to doctors.

We were at the orthopedic on Wednesday for one last elbow checkup. Tarica refused to move her arm for the doctor. He was a safe distance away, and she knows him by now, but she automatically locks up when anyone in a white coat gives her a command.

I got her to move her arm by telling her to give me a high five, and once she moved it, she relaxed and cooperated a little. But it’s getting her out of lockdown mode that will be tricky.

By the way, the elbow looks wonderful. Praise the Lord for healing!

Seizures aren’t any harder than an elbow for the Lord, right?

Of Woozles and Wipers

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This one is just for sheer, rollicking fun. No drama this time, no hard questions.

Three years ago this month, Linford made a quick trip to Honduras, part of his responsibilities as a member of our church’s mission board. This is an account of one experience we had without him, back when life was a little simpler.

No, there’s nothing particularly earth-shattering here. I just like to write stories.

* * *

Oh, no. I need a man. I turned the windshield wiper blade over in my hand. Was it broken? I squinted in the inadequate light from the porch.

“Mom?” A head poked out the garage door. “You said you were coming right back.”

“Sorry, Jenica, I’m trying to fix the windshield wiper.”

“What happened?” She walked to the edge of the porch, followed by her sister. “What’s wrong, Mommy?”

“Shut the door behind you, sweetie,” I said automatically. Are these just scratches in the metal, or is the bracket broken?

The door slammed. Snow crunched beneath boots. “What happened?” My daughter’s worried face peered up at me.

I tried for a reassuring smile. “When I turned on the windshield wipers to clear off the snow, the wiper blade popped off.”

“Why?” Typical question from her.

“It must have been frozen to the windshield,” I said as I walked around the van to examine the other wiper. Is there a clasp, or does the blade slide onto the bracket? It was too dark to tell. I returned to the wiper arm standing at bladeless attention and attempted to slide the blade on.

“Can we still go to Grandma’s?” Jenica asked.

The wiper wouldn’t slide on. Does the bracket come off the wiper arm? I could reach it better if it did. “Not if I can’t get this blade back on. It’s snowing too hard to drive without windshield wipers.” A swift glance at her revealed her puckered concern. “I think I can get it, but I have to figure out how to fasten it on.”

I wiggled the bracket; it didn’t come off. I looked for a clasp; it didn’t have one. Biting back words of frustration, I settled back on my heels and swiped away the snow that had melted on my upturned face. Truth was, I needed a man, especially one informed in the mysteries of wiper blades, but my mechanically minded man was in hot and sunny Honduras. A fine time to snow, this was.

Blade in hand, I walked to the porch. “I’m going in to call Grandma and tell her we’ll be a little late.” I also needed to examine the blade under better light.

In the house, I studied the blade for clues on how to repair it. I learned nothing useful. Lord, I’m on my own here, except for You. I could use a little help.  

When I walked back outside a few minutes later, Jenica was running laps in the snow. Her sister had ventured a few tentative steps from the porch, studying terrain made unfamiliar by an inch of white fluff.

At the van, I tried another angle, another approach to refastening the blade. My hands ached against the cold metal. From the other side of the van, Jenica announced, “Mommy, I found wizzle tracks!”

“Wizzle tracks?” I paused, frowning. “Do you mean woozle tracks, like Pooh and Piglet found?”

Pink with pleasure and cold, she ran to my side. “Like Pooh and Piglet. Wizzle, I mean, woozle tracks. Going around the van.”

“How many woozles do you think there are?” I gave up on sliding the blade onto the bracket and tried to snap them together.

“Just one, I think. Let me check.” Jenica disappeared behind the van again. I grinned. Would she remember what happened next?

In the quiet that followed, Tarica inched to my side. “Mommy, bye-bye?”

“Yes, sweetie, we’ll go bye-bye once the windshield wiper is fixed.”

She poked at the snow collecting on the front bumper. “Cold, Mommy.”

“Sure is,” I said and blew on my hands.

“Mom!” A cry of triumph from the other side of the van. “There are two woozles! I see their tracks.”

“Are they big tracks?” I asked.

Jenica emerged into the light, studying the snow. “No, they’re pretty little.”

“What will you do if you catch the woozles?”

She jerked to a stop. With a quick glance at the shadowy trees, she moved closer to me. “Mom,” she stated with lofty condescension, “I’m just pretending.”

“Oh, I see. Well then, you can just pretend to catch them.” I wrestled with the blade as I spoke.

“That’s what I’m doing.” Again that condescension as if I were the four-year-old. She looked down at the snow around my feet. “Hey, Mom, here’s big woozle tracks.”

I barely heard her. The blade was almost, almost—squeeze harder!—there! I stepped back and rubbed my hands together, cold and satisfied. “Let’s go, girls. I got it fixed. Grandma and Grandpa are waiting.”

They clambered in, woozles abandoned to the snowy darkness.

At the end of the drive, I paused, foot on the brake, to study the unplowed roads. Am I crazy to venture out on such a night? On the other hand, I will go crazy if I stay home by myself with two bored girls another evening.

“Girls,” I said into their chatter, “we need to pray.” They subsided and bowed their heads.

“Lord, thank You for helping me refasten the wiper blade. Take care of Daddy and bring him home again to us. Keep us safe on the roads tonight. May Your will be done. In Jesus’ Name, Amen.”

As I eased out on the trackless white, I said aloud, “I miss Daddy.” Two little echoes piped up behind me.

I flicked on the high beams, but they blasted the falling snow into a swirl of blindness. I switched the lights back down, turned the wipers on—thank You, God!—and drove into the night while my precious cargo argued over who missed Daddy the most.

If the road had not required all my attention, I could have told them who did.

The Trouble with Having a Story

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A little girl, out of nowhere, begins seizing, and the seizures escalate crazily, despite medication, until the doctors recommend looking into brain surgery. Will she qualify? Will she ever be seizure-free? What will it cost her and her family?

Books have been written with less plot than this, but this is not a book. It is our life, and it is our story.

But there is a huge problem with living a story, a problem I grapple with every time I’m in public. I thought of it more frequently over Christmas, when we attended various family reunions and met people we don’t often see.

The trouble with having a story is that one is tempted to tell it and retell it, ad nauseam.

Have you ever met someone who was always telling her story? Perhaps the chapters varied in length and drama, but every conversation with her seemed to focus on her life. It didn’t matter what you discussed with her; somehow she brought it back around to herself.

I don’t want to be someone like that, but I fear I am. People like this don’t even know they are doing it—at least, I don’t think so. It can happen by default, since the only story I can really tell is my own. It’s easy to get caught up in the details of my life.

It’s also easy to think that people are hanging on every word I say, but let’s be honest here: Most of us can talk about our lives past the point of interestingness.

I believe I am safe here, in this space. If you don’t want to hear my story, you can click on that little red X up in the right-hand corner and obliterate me. But if I am talking face-to-face with you, you cannot so easily make me vanish. I worry that people will start looking for the nearest escape route every time I come into view.

Perhaps I am over-concerned about this, but I would rather be that than boring. To prevent a complete descent into boringness, I have composed a mental checklist (which I often fail to consult, but I’m working on it). When I’m talking with someone, this is what I try to remember.

1. Ask about her life.

This is the hardest one for me. I am not good at small talk. It doesn’t readily occur to me to ask someone the breezy questions that keep a conversation flowing. How was your week? Did you get your garden planted? Have you adjusted to the school schedule? Too often, I wait for her to ask me the questions, and then, of course, the conversation is focused on me. I need to do better at taking conversational initiative.

There is a trap even in asking. I have found myself asking someone the questions I wish they would ask me, hoping they would turn it around to me. I need to ask out of genuine interest and love, not out of a selfish desire to eventually talk about myself.

2. Have a conversation without mentioning my story.

Can someone ask me about my week without me bringing up my story? My world consists of more than epilepsy. I still cook, clean, entertain, teach, love, launder, discipline, and learn. I should talk about those things, too.

It’s not healthy to be consumed by one subject alone. I know it looks here like I think of nothing but epilepsy, but once our story slows down, I have a whole list of posts to tackle, twenty-five, at least, with more ideas occurring all the time. We’ll get there, eventually, and I look forward to it.

3. Change the subject deliberately.

Because our story is unfolding and of general interest, it’s common for someone to quickly ask about it soon after meeting or greeting me. Can I answer her questions without going on and on and on—and then quietly redirect the conversation? Without feeling like I’m robbing myself of air time?

4. Meet a stranger without bringing up my story.

When I meet someone who doesn’t know I have A Story, I try to keep it to myself, particularly if our meeting is brief or likely a one-time event. This has become a litmus test for me. If I see every stranger as a set of fresh ears for my story, then I am thinking about myself way too much.

There is an odd sort of pleasure in denying myself the privilege of telling my story to a stranger. I realize this could be overdone. Other people, even strangers, are interested in my life, just as I should be in theirs. But there is a difference between a conversation naturally turning in a certain direction and a conversation being forcibly directed toward myself by me. I need to know that I can keep my story to myself, if necessary. It’s good for me.

Do I always succeed in having balanced conversations? Absolutely not, I’m sorry to say. This is something I’m endeavoring to grow in.

So if you meet me and I bore you, I apologize. Go ahead and change the subject for me if I seem unable to.

Thank you for allowing me to tell my story here. But even an interesting story can outstay its welcome. I hope to be able to tell our story and then move on. Gracefully.

Have you ever struggled with over-telling your story? What has helped you find balance? How do you encourage others to tell their stories?

The Best Way to Combat Discouragement

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It’s been a tough week.

(I wonder how many blog posts start this way. Such an original opening line.)

Micah was at the doctor on Tuesday for one thing, and on Thursday, he was sick with another. He wanted to be held every waking minute. So I rocked him and tried not to think about the messy house and the company coming for the weekend and the food I needed to make and the packing and sewing I need to get done before February and when the next seizure would happen…and…and…and….

I felt like I was drowning.

A child’s illness, even a brief one, eats at my composure and my well-being. It is, I told a friend recently, the worst part of parenting. And it’s not just that I hate cleaning up puke; it’s that I’m not allowed to bow out of the cleanup simply because I hate it. It’s not just that worry weighs me down; it’s the fact that all my worry isn’t going to do a lick of good.

It’s the helplessness I hate the most. I am this child’s mother, the one who can fix everything—but I can’t fix this.

Perhaps I could manage better if life would stop while I tended the suffering, but no, people still get hungry, clothes still get dirty, and the house still disintegrates around me. Life stops for no one but death. When we are caught in the gray wilderness between life and death, we feel the tug and weight of both worlds—the tug of life’s responsibilities and the weight of death’s suffering. We pay homage to both, and we pay the price of divided loyalties.

Or rather, I do. Perhaps others can traverse this wilderness better than I.

Yesterday, I slogged through the Dismal swamp, crawled through the crags of Discouragement, and got lost somewhere on the south-east slopes of Self-pity. By the time I went to bed, I was completely unreasonable and totally overwhelmed.

To be honest, I don’t feel much better this morning.

But I am now fully aware that this discouragement is the result of the deceiver’s lies: You can’t do this. It is too much. God doesn’t really love you. You are going under—where is your Jesus now?

Lies, lies, lies, every one of them, and yet I listened while I rocked and rocked and rocked.

I have no tidy rebuttal to those lies. I am powerless to confront the wicked one alone.

But I still have a voice, and I lift it: Lord, save me, lest I perish.

I will not close with a neat summary of the lessons I’m learning in this, because I’m still stumbling over the lines. I will let His Words speak, to me, to you, to all those wandering among the crags of Discouragement. We may have miles to go in this wilderness, but we have Someone Who will never abandon us.

I pledge, today, to think on these words:

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)

The Lord is my light and my salvation; whom shall I fear? (Psalm 27:1a)

Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need. (Hebrew 4:16)

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. (John 14:27)

Please do not offer me pity; I’ve offered far too much to myself already. What I would love—and need—to hear is your favorite Bible verse to combat discouragement. Even if it’s already been shared, I still want to hear it.

Let’s speak encouragement to each other. There’s little enough of it in this broken world.