Category Archives: epilepsy

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

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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?

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?

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.

Be Careful What You Pray For

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Did you ever pray for something and then, after receiving what you asked for, wish you hadn’t?

Here’s the story of my prayer and my regret.

The week of Christmas, Tarica had only a few seizures, and in the two weeks following, she did equally well. I rejoiced.

But I also worried.

Next month, she will be admitted to Children’s Hospital for testing to discover if she qualifies for brain surgery. We had chosen to do this because the drugs were not controlling her seizures. But what if we were moving too fast? What if she could eventually gain seizure control through medication? Was her decrease in seizures a sign of growing control, or was it simply the unexplainable ebb and flow we had seen before?

Last week, this weighed on me, and so I prayed about it. Lord, show us if we are doing the right thing for Tari. I’m not exactly asking for a sign, but give us a little direction, please.

No thunder rolled. No Voice spoke. Life went on, and I went on praying daily: Reassure us we are doing the right thing; stop us if we aren’t.

I knew with this prayer I risked an increase in seizures, for that would be the surest confirmation, but we had seen many seizures. What were a few more?

And then I worried that I was, in essence, praying for my daughter to seize. But maybe she wouldn’t. Maybe nothing would happen, and we could reevaluate our decision. But maybe she would seize more frequently, and I would tell myself, I prayed for this. I shuddered at the thought.

The circles I took last week—it was dreadful. At least—I tell myself now—I was pacing those circles around the will of God.

Tuesday, Wednesday, Thursday came and went. No seizures. Friday, Tarica complained her belly hurt.

Soon after, she trotted urgently to the bathroom. A short time later, she yelled, “Mom!”

When I opened the door, she said, “I have diarrhea.”

And she did. Numerous times that day. It was bad.

Other than frequent bathroom breaks and some tears over her achy belly, she was fine. She worked at her preschool book for some time that afternoon. At supper, she consumed a whole hamburger, methodically. I remember looking at her across the table, and she grinned at me as she chewed.

After supper, I was cleaning up the kitchen while the children romped with a big appliance box. They shrieked and giggled and hollered. All the toys they have in the playroom, and they have the most fun with a cardboard box.

The fun subsided to a dull roar, and then I heard a thump. I waited for a wail, and when none came, I froze. A thump followed by silence could mean only one thing. Seconds later, Jenica hollered, “Mom, Tari’s having a seizure!”

She was on the floor by the sofa, Linford beside her. She was seizing…and she seized and seized.

My mouth went dry. “This is too long. Shall I get the emergency drug?”

“Get it ready,” Linford said. “Maybe we won’t need it.”

I don’t want to tell you the rest. I failed my daughter. I got the bag of drug paraphernalia with shaking hands, and I opened packages—a sterile syringe, a vial, a needle, and other components that suddenly looked as comprehensible as engine parts and pieces to me. Ten months ago, I had been told how to fill the syringe and give it to her as a nasal spray, and now, under pressure, I couldn’t remember the instructions.

A clock ticked in my head. God, please help me do this! Still she seized, body convulsing, eyes staring, mouth drooling.

Five minutes passed. She should have the drug by now, but I was still trying assemble the engine. Six. I tried to give it to her. Nothing happened when I depressed the plunger. Seven. Dear God, please.

“It’s not working,” I said. Wailed. Moaned. “I can’t remember how to do it.” If she were permanently damaged from this, it would be my fault.

Linford said, “Jenica, go get a paper towel.” He put it under her cheek to mop up the drool. When he looked at the pieces that were supposed to rescue our daughter, they were not any clearer to him.

And still she seized. Eight minutes. Nine. Ten? Eleven? I wasn’t watching the clock.

I tried again. Maybe she got a little this time. I tried again and again. But I couldn’t get the syringe to fill properly, and so it wasn’t enough. I prayed incoherently.

Finally, the convulsions stopped. We wiped her face, moved her to the sofa. I knelt beside her and studied her eyes.

“I think she’s still seizing,” I said. “Her eyes aren’t focused. Her body is stiff. And she’s still drooling.” The sofa was growing wet beneath the steady flow from her working mouth. I shone a flashlight into her eyes; her pupils were huge pools of black, and she didn’t even flinch.

“Tarica, squeeze my hand,” I said. No response. Linford smoothed the hair back from her face. She moved nothing but her mouth.

I tried the rescue medication again. No change. She was at the mercy of the haywire electricity in her brain.

Not only had I prayed for this, but I had failed to administer the drug effectively. Oh God oh God oh Father God.

When you serve the Almighty, you should be careful what you pray for.

* * *

I must stop the story for a moment and speak to those who might find themselves in our shoes. Do not do this at home. If your child’s seizure won’t stop, call an ambulance. We live thirty minutes from the hospital, the roads were snowy, and we thought we had a drug that would stop it. It didn’t work out like it should have, but let this mistake be ours alone and not yours.

* * *

I hate to leave you hanging, but this post is long enough. I will be back in a day or two with the rest of the story.

How to Entertain a Hospitalized Child

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When Tarica broke her elbow in November, it felt unforgiveable. Why did God allow it to happen to her, of all people? Wasn’t she suffering enough?

My mom, a curious mix of optimism and fatalism, had another perspective. “Perhaps,” she said, “more exposure to doctors will help Tarica get over her fears.”

In this, Tarica needs all the help she can get. The hospital stay in March was a nightmare, although I attribute much of her behavior to side effects from the quarts of drugs being pumped into her seizing body.

But her behavior in the months following had not reassured me that her next hospital stay would be any better. She hated doctors, hated attention, hated, abhorred, despised needles.She drew into herself like a frightened turtle the minute we walked into a medical office, no matter how big her talk was in the van.

Could any good thing come out of a broken elbow? Not likely.

The morning of the first orthopedic visit, I dropped Micah off at my mom’s. My sister ran out to the van with a gift bag. “Here’s a birthday present for you, Tarica,” she said and handed it to her. In the bag was a Melissa & Doug chipmunk house with puffy, reusable stickers: Mama and Papa Chipmunk, three fat-cheeked offspring, and more furniture than we have in our own house.

At the doctor’s office, I helped Tarica out of the van and, at the last minute, grabbed the chipmunk house. That decision ranks in the top ten wisest impulses I’ve ever had. As soon as we settled into waiting room chairs, Tarica wanted me to open the package. She played with her chipmunks the rest of the visit and tolerated the doctor’s presence more calmly than usual, thanks to the distraction.

The doctor wanted to see Tarica again in a week. At her second visit, her cast needed to be replaced because the swelling had gone down, loosening the first cast. The nurses cut the cast off, with surprisingly little fuss from the patient, and then prepared to put on cast #2.

They slid a long sock over her arm, a thin layer of protection against her skin. Without prompting, Tarica reached over, picked up a scissors, and prepared to cut the sock off just beyond her fingers. The two nurses looked at each other, eyebrows raised. “You remember what comes next, don’t you, sweetie?”

They let her cut the sock.

When they were wrapping her arm in plaster, she again reached for the scissors to make a cut in the plaster around her thumb. Without prompting. She snipped the plaster, her eyes intent.

I stood with my mouth slightly open, brain churning. This discovery was important, and if not for her elbow, I might not have realized it before her hospital stay.

If she could somehow participate in events instead of feeling like a helpless victim, she relaxed and cooperated.

And the chipmunk house. If she was distracted, she was more likely to behave.

My mom was right. Even a broken bone had some good in it.

* * *

I need your help.

Tarica will be hospitalized for ten days next month. She is not sick. She is a healthy child (other than epilepsy) with a need for exercise and activity. Instead, she will be attached to wires and made to stay in sight of a camera at all times. And she doesn’t like doctors or nurses.

I don’t have to describe all the ways this scenario could go wrong. Your imagination will do it quite nicely.

I need suggestions for ways to keep her involved and distracted, not necessarily at the same time.

The suggestions should be

  • inexpensive
  • easy to pack and transport
  • suitable for a five-year-old

She enjoys numbers and hates coloring. Because of the drugs, her hands shake, so anything requiring fine motor skills wearies her. She loves stickers and dolls. She likes I Spy and Can You See What I See? books, but I think we’ve borrowed most of them from our library already. Do you know of any age-appropriate search-and-find books other than these?

She likes games, but many of them are too bulky to pack. Are there any travel-size games you can recommend?

The hospital has a children’s library on the same floor as the epilepsy center, so I’m not planning on taking storybooks. Unless you have a can’t-miss book to recommend?

Here are some ideas and suggestions I’m already considering:

  • A hand mirror, so she can watch the wires being attached to her head
  • A doctor set, so she can give the nurse the needle in turn
  • A balloon pump and those skinny balloons to make animals, which I don’t know how to do, but I can learn
  • Her beloved preschool books—if she doesn’t finish them all before February

I need enough variety to keep her from being bored, but not so much that we need a moving van to haul the luggage. The hospital has some resources we can use, but I’d like to be as prepared as possible. In addition, I’m hoping the collection of fun activities will give Tarica something to anticipate.

Can you help me?

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.

In Which Our Faith Is Strengthened by Unexpected Visitors

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Read In Which Our Faith Is Strengthened by a Friend first.

* * *

Throughout Saturday afternoon, I kept checking the two fifties to make sure they hadn’t disappeared. Every time, they were still there. Every time, I was amazed all over again.

Several hours after the mail came, an unfamiliar car pulled in the drive. Jenica bolted for the door, curiosity flapping in the breeze behind her, followed by Tarica. Linford went after them, more slowly.

I was putting some laundry away upstairs, and by the time I peeked out a window, the car was already empty. Probably Jehovah’s Witnesses, I thought. Whoever had come was standing on the porch out of my sight. I gave in and went downstairs.

Linford met me on my way to the door. “You need to come out here,” he said, an odd look on his face.

I stepped outside and saw the most unexpected people on our porch. Remember the doctor that took x-rays of Tarica’s elbow? I called him “almost a friend.” Well, I was wrong. It takes more than almost-friendship to show up on a Saturday afternoon with what they did.

I looked from Dr. Chris and his wife, April, to the basket on the porch. The girls were already rummaging through it, pulling out treasures and exclaiming over them. The basket held chips, granola bars, travel games, a lap desk with coloring pages, crayons, fruit snacks, and caramel popcorn.

“It’s for your trips to and from Pittsburgh.” Dr. Chris pulled an envelope out of the basket and handed it to me.

I tucked it under my arm and groped for words of thanks. I’ve said this before, and I’ll say it again: It’s humbling to receive. We don’t deserve such generosity, such thoughtfulness, and if I cry at all these days, it is tears of incredulous joy.

We thanked them. We talked, of epilepsy, of Christmas. We thanked them again. They left.

“I can’t believe they did this,” I said to Linford as we looked over the basket.

“What will you do with it?” he asked.

“Save it. For Pittsburgh,” I said. “It’s why it was given, and I want to honor that.”

Back in my kitchen, I remembered the envelope still tucked under my arm. When I pulled it out, I noticed its curious fatness. I tore it open and found a Christmas card. I opened the card and—

“Linford,” I said, “you need to see this.”

The card held $200 in cash and a $50 gift card for Sheetz, a common gas station in our area.

I swallowed hard. My chest felt constricted, as if the breath had been slammed out of me. “I can’t believe this,” I whispered around the tightness.

Above all that we ask or think. 

I groped for words of thanks, knowing it’s not enough, knowing, too, that He understands.

* * *

I tell you this story because I don’t want to forget it. Sometime in the future, when I feel like God is ignoring our distress, when the darkness is thick on every side, when it seems as if epilepsy has swallowed us whole—I want to come back and read this story of God’s extravagant provision.

If He could do it once, He can do it again.

He will do it again.

Lord, I believe; help thou mine unbelief.

In Which Our Faith Is Strengthened by a Friend

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Read In Which Our Faith Is Strengthened by a Stranger first.

* * *

When I went through the mail this past Saturday, I was pleased to see a package from a writer friend of mine. I had recently edited her latest project, an informal compilation of stories, and she had promised to send me a copy when it was completed.

As usual, she had included other interesting pieces and the latest issue of the magazine she edits; getting a package from her is as much fun as Christmas. All this stuff to read when I should have been doing the dishes—it was a temptation worth yielding to, so I did. Because the words absorbed my attention, I didn’t see the money until I was hastily scrambling the papers together before going back to my pots and pans. Two bills fluttered out of the stack onto the table.

I froze. Blinked. Sure enough, they were still there. Two fifties. One hundred dollars.

God had covered the remaining $99.24.

Wherefore didst thou doubt, Stephanie? 

The money, my friend said, was payment for the editing I did for her in the last six months or so.

The timing, I thought, was God’s alone.

* * *

I sat, ignoring the dishes, holding the money, trembling inside.

My friend had included an accounting of the projects I had edited for her and the payment for each. Twenty dollars for this one, twenty-five for that one, and so on, for a total of ninety-five dollars. She had then added five dollars, marked it “Christmas gift,” and made it one hundred dollars even.

Her generosity had turned payment for services rendered into a miracle. Had she given only what she owed me, it would have been $4.24 short of our need. Details, insignificant and inconsequential, perhaps—after all, we could afford to pay $4.24 toward a medical bill—but my God is the King of Insignificant Details, and nothing is too small for His attention.

It shook me to my core.

Generosity begats generosity, and we had already been so blessed. Perhaps I could use some of this money to buy birthday gifts (very belated or very early, depending on how you looked at it) for my sisters. Both of them had frequently helped us with their time and resources during the last year. In February, one of them was taking off work for the entire ten days Tarica would be in the hospital so she would be available, either to help my mom take care of Micah or else to come out to Pittsburgh and assist me with Tarica.

It humbled me to always be the recipient. Perhaps I could find a special gift for them, an inadequate but heartfelt expression of my gratitude. I had wanted to buy them birthday gifts earlier in the year, but money for such extras had been and would continue to be scarce. But this—I could not hoard this generosity. Surely we could spare a little. I’d see what Linford said about it.

I returned to my dishes, still astounded by God’s attention to detail.

But the King of Insignificant Details is also King of Exceeding Abundantly, and He wasn’t finished.

Come back tomorrow for the next installment of grace.

In Which Our Faith Is Strengthened by a Stranger

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“Did you pay that bloodwork bill?” Linford asked.

“No, not yet,” I said, resisting the urge to make a face. Or maybe I did make a face. Sometimes I don’t resist the urge.

Linford normally paid the bills, an arrangement that suited me. Bookkeeping bored me enough that I tended to put it off, and procrastination and bill paying do not peacefully coexist. But medical bills required at least one phone call to negotiate our self-pay discount. Linford was on the road all day with his job as an appliance repairman, in and out of cell service, in and out of customers’ homes. Since he could not easily make the calls during business hours, the responsibility became reluctantly mine.

“Just put it on a credit card,” Linford said. “I’ll figure something out by the time the bill is due.”

We had grown accustomed to bloodwork bills for two and three hundred dollars. Tarica’s anti-epilepsy drugs required periodic blood tests to ensure that the drugs were not damaging her body. But Tarica had recently been put on Depakote, which required more extensive testing. This last bill of $856.05 had dropped both our jaws.

The discount would bring it to $599.24. Not much, compared to a hospital stay, but we didn’t have an extra $600 sitting in the checking account. We aren’t poor—anyone with enough food to eat, enough clothes to wear, and a solid roof overhead has abundant wealth. What we don’t have is a lot of extra cash. However, each month we paid our credit card balances in full, and somehow, surprisingly, we always had enough to cover the additional medical bills.

Once more, we would charge it in faith.

* * *

Linford looked at his paperwork before jumping out of his truck. This job was an LG dishwasher that wasn’t draining. He grabbed his tool bag and clipboard and followed the sidewalk curving up to the rancher’s recessed front door. A fluffy white dog rushed at him across the lawn, yapping hysterically.

A grey-haired man in his 60s or 70s came to the door. He stooped to hush the dog, saying as he straightened, “I don’t want my wife to wake up.”

Wife? Linford looked around and saw a woman sleeping in a hospital bed in the middle of the living room.

“She has Alzheimer’s,” the homeowner, whose name was Gregory, said as he led the way to the kitchen. “Diagnosed sixteen years ago, and she’s been dying one cell at a time the last six.” His voice was matter-of-fact in the manner of one who has long ago stopped looking for pity.

“I’m sorry to hear that,” Linford said. “May God bless you as you care for her.”

The dishwasher was complicated. Linford had to uninstall it to reach the drain pump, and as he worked, the two men talked. A younger woman and her daughter stopped by briefly. After they left, Gregory said, “That was my daughter-in-law. Between her and my other daughter-in-law, there is a crisis every day, a flat tire, a headache, and I tell them to calm down, it’s not Alzheimer’s, it’s not cancer.” He paused before explaining. “Two years ago, I had cancer, the scariest kind, and I should be dead. But the Lord healed me, and here I am.”

“I needed to hear this right now,” Linford said as he did something unexplainable in the guts of the dishwasher. “Our five-year-old daughter has epilepsy. Her seizures aren’t controlled by medication, and she might be going for brain surgery in the future.” He looked up at Gregory standing by the kitchen counter. “It’s good to know that someone else is facing difficulties with courage.”

The job took nearly three-quarters of an hour. The two of them continued talking, exchanging pieces of their lives as strangers do when thrown together in close quarters. When the dishwasher was finally reinstalled, it hummed and drained as a well-behaved dishwasher should. Linford filled out the paperwork and handed the bill to Gregory.

When Gregory returned to the kitchen, he held a check and a bank envelope in his hand. He held out both to Linford. “Jesus of Nazareth is a healer. I feel like I’m supposed to give this to you.”

Linford looked at the envelope, at the money inside it, and said, “This is not why I told you my story.”

“I know it isn’t. Take it and use it and God bless you.”

Back in his truck, Linford pulled out the money and counted the bills unsteadily. Twenty-five twenties. Five hundred dollars.

Through the hands of a stranger, the Lord had provided.

* * *

This gift left $99.24 for us to cover. We could do it.

Except the windows of heaven were still flung open. God wasn’t yet finished pouring out His grace.

I’ll tell you more tomorrow.