Author Archives: Stephanie

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.

Seek Ye First…a Sign?

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Disclaimer: I hesitated to post this because of the ways it could be misunderstood. I am simply telling a story about one attempt of mine to seek God’s will. I would not dare to prescribe the lessons I learned to anyone else, nor would I declare that God is limited in the ways He can speak to us. Just as a wise parent relates to each child according to the child’s needs, so God relates to each of us differently, in ways that will best help us grow.

* * *

I hate drugs.

Yes, I know. I said that before. Forgive me for repeating myself.

When we came home from the hospital in March after receiving the epilepsy diagnosis, we brought back a wildcat, not a daughter. Linford carried Tarica inside and set her down, and she immediately began staggering around in wild circles, kitchen, dining room, playroom, living room, over and over again. She wore a fixed smile that, paired with her empty eyes, gave me the shivers.

Tarica had changed, and I knew what to blame: the drugs.

I began researching alternatives, specifically the ketogenic diet. What I learned discouraged me. Tarica was the champion of picky eaters, and this diet consisted of many foods she would refuse to eat.

But still. What if? Wouldn’t it be wonderful to take her off drugs?

And then Gina emailed me about a giveaway happening over at Michelle Beachy’s blog. Michelle’s cousin Esther Yoder had just published a cookbook called Nourish. All the recipes in the cookbook were based on the low glycemic index diet, a modified and less strict version of the ketogenic diet, which Esther had used as a form of seizure control for her daughter.

I read the giveaway post. It contained the story of another four-year-old girl who had seizures, although she had absence seizures instead of complex partials like Tarica. Absence seizures are brief losses of consciousness, usually lasting only a few seconds and sometimes occurring hundreds of times a day. It’s a type of childhood epilepsy and almost always outgrown, but imagine the restrictions a child would have to endure if she might randomly lose consciousness at any time. Schooling is also difficult for children with absence seizures because they miss so much as their awareness comes and goes.

Like Tarica, this little girl’s personality had changed on the drugs. In addition, the medications were not preventing her from seizing. Their neurologist suggested that Esther put her daughter on the low glycemic index diet. Within a year, the little girl was seizure- and medication-free. Esther then compiled all the recipes she had developed into a cookbook that could be used to help parents of other children with epilepsy.

Parents like…me.

At first I thought, No way, not now. It’s too complicated, too soon. We’re still recovering from the hospital stay, still adjusting to the diagnosis.

And then I remembered the gestational diabetes I had had during most of my pregnancy with Micah. What if God had allowed me to be diabetic to prepare me for a bigger dietary challenge?

But what about Tarica’s pickiness?

But nothing is impossible with God.

But would God speak through a giveaway?

I had to know. The doctors were not recommending the diet for Tarica, and at that time the drugs were controlling her seizures. But maybe if I knew, maybe if God would give me A Sign, then I could push to put Tarica on the diet. All I needed was enough faith, and God would heed my prayers.

I entered the giveaway. When another giveaway for the same cookbook popped up online, I entered that one, too. If I won, it would be a sign that the diet was right for us. If I didn’t, then the diet wasn’t for us.

But something didn’t feel right about it, and when Gina started making cautious noises of “don’t rush it” and “give yourself time” and “surrender,” I alternated between bristling and wincing. All I wanted was to know, and yet—was this the best way to discover God’s will, to force God’s hand with a randomly generated number? But didn’t Jesus say “Ask, and it shall be given you”? What was wrong with asking?

I prayed. I considered the words of my friend. I considered the words of my Lord. I prayed some more.

A day or two before the results of the first giveaway were announced, I realized two painful truths about me.

First, I was assuming too much responsibility. What was I going to do—arrive at the doctor’s office and announce that God had told me to put Tarica on the ketogenic diet? What about my husband’s opinion and wishes? I was trying to make family decisions that weren’t mine alone to make. I hadn’t even consulted my husband in this latest scheme. God will not bless choices made outside His already revealed will, and this I knew from His Word: I am to submit to my husband.

Second, I had a problem with my patience, specifically that I had none. I wanted answers now. I wanted to know which direction to take. We could count our time with epilepsy in days, not months or years, and still I had to know now. “Be still,” God says. “Wait. Know that I am God.” Instead I wanted most, not to know God, but to know where and how and when.

I surrendered. I told God, “No matter what happens with the giveaway, help me not to run ahead of You. Reveal Your will as You see fit, not according to my plans and schemes.”

I won neither giveaway, and I felt an enormous sense of relief. It would have been nice to own a copy, yes, but I was done finding divine direction in whether or not a certain cookbook belonged to me.

That surrender was the first of many, as the seizures returned in July and we began a series of drug adjustments and changes. Through it all, I tried to remember the lessons I had learned back in March: Don’t run ahead of God. Wait. Pray. Listen to others, and pray some more.

About a month after the seizures returned, we had guests over for Sunday dinner. That afternoon, one of the guests handed me a gift bag and said, “I don’t know if you heard of this, but I thought you might be interested in it.”

I opened the bag and pulled out Nourish.

A Sign? Oh, yes. Absolutely. A Sign of God’s love. Nothing more.

But it was everything I needed.

Canning with Stevia–and a Mis-snake

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The snake pushed me over the edge.

Before the snake appeared, I was already teetering on the edge—the edge of what? I wasn’t sure, but recent events had conspired against me. I felt overwhelmed and emotionally fragile, which is probably why that snake made me laugh—a shrill, hysterical laugh—as I clutched my weapon.

It all began two days earlier—no, the week before, actually, when Micah, my three-month-old son, came down with bronchiolitus. In August. That was the same week Jenica started first grade at Lighthouse Christian School, a thirty-minute drive from our house. Maybe other mothers can adjust tidily to the school schedule, and maybe other first graders can fit into their new world seamlessly, but not us. It was exciting, and it was terrible.

But I had peaches to pick up at Valley View Fruit Farm, ordered in a pre-school, pre-bronchiolitus fervor, and as I heaved the fragrant baskets into our garage, I considered my ways and found them unwise. What was I thinking, to order so many? Now I had to can them—I picked up a peach and tested its firmness—soon.

So, two days before the snake, I assembled canning supplies and peaches in my small kitchen. I consulted Home Joys on how much stevia to use in the syrup. “2 tsp. per gallon,” I wrote on a scrap of paper as Tarica, my preschooler, leaned on me, coughing. She was underfoot every day without her big sister to entertain her.

I started peeling peaches. Micah cried, hungry, wheezy. Tarica complained, bored, wheezy. The day stretched, endless, napless for this mother.

I hustled the children off to bed after lunch and tackled the peaches with desperate vigor. But before long, Tarica’s spasmodic coughing turned into violent retching, followed by a howl. I leaped for the stairs. Tarica sat in her bed, vomit covering her, the bed, the pillow. I abandoned the peaches for laundry duty and childcare.

Perhaps it was sometime in there, between the demands of a sick daughter and a nursing baby, that I made my mistake. Not that I noticed my miscalculation—oh, no, not at all. I forged relentlessly on with my canning. Late that evening, I pulled the last of fifty quarts out of the canner and collapsed into bed, ignoring the horrific mess of my kitchen. I would deal with it tomorrow.

In the morning light, my kitchen still looked like an unslayable dragon, but my heart was light. I had done it, all by myself, despite illness and a baby, despite weariness, and only two jars had not sealed. This lightness remained with me until that evening, when I pulled one of the unsealed jars out of the fridge for our supper. As I placed it on the table and sat down, Jenica asked, “Are those the peaches you put in my lunch today? Because they were way, way too sweet.”

We joined hands as a family and bowed our heads for prayer—but I forgot to pray. I was transfixed by Jenica’s words, and suddenly, I knew. I knew the irrevocable truth about my hard-earned peaches.

Prayer finished, I clasped my head in my freed hands and moaned. My family looked at me, alarmed. “I made a terrible mistake,” I said. “I put too much sweetener in the peaches yesterday.”

“How much is too much?” my husband asked.

“I was supposed to use two teaspoons of stevia per gallon. I just realized I used two teaspoons per quart. Four times too much. I can’t believe this.”

* * *

I still couldn’t believe it the following morning. The peaches were nearly inedible, with a strong stevia aftertaste. What was I going to do—can unsweetened peaches and serve them with the sweet ones? More canning? It was unthinkable, but throwing fifty quarts of peaches away was equally unthinkable.

I felt sick and distracted over my mistake, which is probably why I didn’t notice the snake until I was halfway across the living room, about the same time it noticed me. We froze, the snake and I, heads up, unblinking, eyeing each other across the five feet of space between us.

A harmless black snake, I thought, oh, so carefully rational under my surging adrenalin. A dangerous human, the snake thought and turned to flee. I followed it, unsure of what to do but determined to track it. The only thing worse than seeing a snake is knowing there’s one around here somewhere. To my horror, the snake sought refuge in the sacred ground of my kitchen.

As I watched the snake disappear beneath my refrigerator, I fought the urge to laugh hysterically. I raced for my broom and nearly hyperventilated when my foot rolled over a long black snake on the laundry floor. It flopped and I yelled, only to sag against the wall. Just the iron cord, Stephanie. Breathe. Breathe.

Heart racing, I established guard a safe distance from the fridge, broom held at the ready. I couldn’t just walk away and let the snake wander all over the house. Once, the snake slipped its head out of its cave, but seeing me, it retreated. The laughter bubbled up from the wild place inside me. It was all so strangely funny, the snake and I caught in this ridiculous standoff.

I waited. And waited. No snake. Micah cried. “Okay, snake, you win,” I said and yielded my culinary territory to the reptile. “I’m not coming back until you’re good and gone.”

But I was forced to give way to necessity: We have to eat. I never saw the snake again, although I think it of now and again, especially when Micah crawls over and pats my ankle while I’m washing dishes.

As for the peaches, well, I have about 40-odd jars of super-sweet ones out in the garage. They might still be around when Micah is old enough to go snake hunting.

Divided Attention: What It Means to Be the Sibling

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“Tarica gets all the stuff,” she said, eyes intent behind her glasses. “All the medicines and attention.”

I put my hands on Jenica’s shoulders, and she slid her arms around my waist, head tipping back to hold my gaze, brown locked on brown. “Are you jealous?” I asked.

“Yes, and I’m humble enough to admit that I am.”

Perhaps I shouldn’t have laughed. Such words from a seven-year-old. She laughed too, sheepishly, and I hugged her tight. “I’m sorry, sweetie. I don’t know what to do about it.”

She went upstairs to bed, and I stood rooted in the kitchen, thinking of her words. Her jealousy didn’t surprise me. It was born of a child’s need for security: Mom, do you care about me? Am I important to you?

I shouldn’t have to say it, but let me state for the record that we love all our children equally. We have no favorites.

But life is asking us to love our children differently and in unequal portions of time. We have Jenica, the self-confessed jealous one. We have five-year-old Tarica, the daughter whose epilepsy flares up in uncontrolled seizures. We have nineteen-month-old Micah, who daily increaseth more and more unto naughtiness.

Right now, Tarica is seizing multiple times a day. She is the one we most worry about and talk about and pray about. Her siblings—they get the leftovers.

Jenica senses it. Perhaps Micah does, too.

“I love you,” I tell all our children, but Tarica is the one I mention at church as a prayer request. Tarica is the one whom people ask about, the one whose story is told. Tarica is the one with appointments and medications and hospital stays and . . . and . . . attention.

For children, attention equals love. This is why Jenica thinks I love Tarica more than I love her.

We aren’t given extra hours in our days just because we have a child who needs more care. We have the same 24/7 everyone else does. What is a mother supposed to do?

Should I try to compensate for our focus on Tarica? Maybe I should take Jenica to the library—just the two of us—where we can revel in our shared love of reading. Perhaps I should take her on a walk up the mountain behind our house so we can talk uninterrupted. Maybe I should read more stories to Micah and rock him more often and get down on the floor with him and his red barn. They deserve to know I love them enough to spend special time with them.

On the other hand, I want my children to understand that life isn’t fair. It’s not fair that Tarica has to live with seizures; it’s not fair that Jenica and Micah lose some of the attention that might otherwise be theirs. This is life, and sometimes it hurts. Better to learn it now than later—or never. If I try too hard to compensate, they lose opportunities to practice compassion and to sacrifice for the sake of another, opportunities they will also face as grown-up followers of Jesus. Why not teach some of these lessons now?

Or is that too much to expect of our children?

I wish I had time enough for my children to get equal portions. I will try. I will take Jenica on that walk. I will read another story to Micah. I will look into their brown, brown eyes and tell them over and over that I love them all the way up to the moon and all the way back.

I try. But when Tarica crashes to the floor, I put Micah down to kneel by her, stroking her cheek as she seizes, blocking Micah with the other arm so he doesn’t pounce on her. When the seizure is over, I carry Tarica to the recliner. She slumps in my lap, weak and exhausted, and Micah weeps on my knee, abandoned, and Jenica says, “Come out and see what I did in the garage,” and I say, “I can’t right now—I’m holding Tarica.”

But in my heart, I’m holding them all.

Stranger on the Doorstep

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This experience happened last winter, about a month before Tarica started seizing. Now that snow is flying again, I remember this and wonder if I did the right thing.

* * *

The doorbell rang while I was in the middle of changing Micah. When a second peal quickly followed the first, I scooped up my diaper-clad baby, wrapped a blanket around him, and raced down the steps. As I reached the bottom of the stairs, I glanced at the sofa, grateful to see the doorbell hadn’t awakened Tarica. She had been stricken with the stomach virus less than two hours ago.

At the door, a stranger waited, wind-blown and worried-looking. Snow swirled around the young man, catching in his red beard and on his narrow shoulders. Before I could say a word, he said, “Sorry for bothering you, but could you give me a ride to Kettle Road?”

I snugged the blanket around a small bare shoulder, mentally scrambling for something kinder than a flat refusal. “I’m sorry, but I can’t. My daughter is sick, and I need to take care of him.” I gestured toward my wriggling bundle.

“No one else is around that could give me a ride?”

Was that a leap of fear I felt? “No, I’m sorry. Not right now.”

He bounced on his toes. “Do you think anyone’s home over there?” He pointed to a neighbor’s house through the trees.

“I have no idea,” I said, realizing I could fit what I knew about those neighbors in the bowl of a spoon. They had kept to themselves ever since moving in last summer. I pointed in the opposite direction. “You could try the people on the other side of us. Someone is often home during the day.”

“The next house down?” He began a retreat down the drive.

“Yes.” Something pinched inside me. “Did your car break down?” I asked.

He turned back. “Yeah, it did.” He shook himself and thrust his hands deep into his pockets. “It’s cold out here.”

That was an understatement: It was a brutally frigid day, with a wind that cut to the bone. “I hope you can get a ride.” My words sounded lame in the face of his plight. “Sorry I can’t help you.” I closed the door as he walked away.

From a window, I watched his hunched form swing down the driveway. Doubt squeezed my heart. Had I done the right thing? I couldn’t bundle my sick daughter into the van right after she got sick. My baby needed to eat as soon as I got him dressed. But I had just said something very close to “depart in peace, be ye warmed and filled.”

The young man turned onto the road and soon was out of my sight. I frowned at the spot where he had disappeared. Had I turned away an extraordinary opportunity? What if that young man with his red beard and thin coat was an angel? Far-fetched, maybe, but it was possible. That verse in Hebrews 13 says we are to entertain strangers because they might be “angels unawares.” I should have at least given him a cup of coffee. It isn’t every day I can serve an angel.

But maybe he wasn’t an angel. Maybe he was a violent young man with evil intentions. Maybe my veiled head stayed his hand. But he seemed sincere. How is a woman to know in this wicked age when to show generous compassion and when to be reserved and play it safe? On one hand, strangers can be dangerous; on the other, strangers can be angels in disguise. What should I have done?

Well, it didn’t matter. Tarica was sick. And he was gone. But if I did the right thing, why did I feel guilty? I stared out at the snow flying in the wind and wondered if an angel would mind the cold.

* * *

What do you think? Are we women too careful? Do we lose opportunities to show compassion because of our caution around strangers? If we trust God, can we help a stranger without fear? 

My daughter was sick; I had little choice. But what if she hadn’t been sick? I still don’t know what I would’ve done.

Why the “J” Is Important

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If it is a small world—and we often say it is—then the Mennonite world is even smaller.

A theory called six degrees of separation proposes that a person could be connected to anyone in the world through no more than five people. If this theory is correct, then I know everybody in the world through the friend of a friend of a friend of a friend of a friend of a friend.

Mennonites, on the other hand, have about two degrees of separation. Most of us can find a relative or an old Bible school friend among the acquaintances of any Mennonite stranger we meet. In fact, there’s a good chance we’ll discover that we ourselves are related, if we talk long enough. Even I, with a shot of non-Mennonite Scotch-Irish simmering in my veins, can make connections.

But I never met a lot of Mennonites named Stephanie, and when I married a Leinbach—not one of the common Mennonite surnames, like Zimmerman, Weaver, or Martin—I considered my chances of being the only Mennonite Stephanie Leinbach were fairly high.

I held onto that illusion for three weeks of newly wedded bliss, and then I met Stephanie Leinbach. She was from Colorado and married to my husband’s third cousin. So much for being one-of-a-kind. But all those Esther Martins had survived meeting themselves twenty times over, and I managed to recover from my disappointment.

The Other Stephanie Leinbach and I lost track of each other for nearly six years, until I wrote my miscarriage book. I hadn’t forgotten her; on the book, I had included my middle initial with my name because of her. Our name is uncommon enough that most people wouldn’t consider there were two of us running around. A middle initial wasn’t much, but it might help.

Shortly after the book was published, I received an email from the Other Stephanie Leinbach, and we began corresponding. I learned she had five little girls, two of them twins. They now lived in Indiana, closer to family. You know, the usual facts people swap when getting acquainted.

And then she asked me for my daughters’ birth dates. Her twins, Julie and Genevie, had turned four on March 29. Her Erika would be two in July. How close were they in age to my girls? And did we pronounce Tarica like Erika?

I about fell off my chair. Jenica had turned four on March 29!

What were the chances of two Stephanie Leinbachs having three girls on the same day, with names that sounded like we planned it? And we had an Erika and Tarica (pronounced nearly the same) a few months apart.

It was coincidence, nothing but coincidence, but it still gave me goosebumps. Before you ask, no, we are not twins separated at birth. Of that I’m certain. We are far too different for that.

The Other Stephanie Leinbach is why I use my middle initial. It looks pretentious, but in our small Mennonite world, with only two degrees of separation, we are too easily confused. Since she has more friends than I do and is more widely known, she gets most of the credit for the stuff I’ve had published, despite the J. And now that she’s recently stuck her toe into the publishing waters, I expect even more confusion to come. Two Stephanie Leinbachs who write? How will they ever tell us apart?

It’s not that hard, especially in person. If you meet a Stephanie Leinbach and she is outgoing and telling many stories and inviting you over for supper, it’s not me.

The Least Kind of Comfort

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I’m done with “at least.” This time, for good. I’ve grown weary of the phrase, with all its false sympathy, but I forgot this in a recent encounter with Joanna.* I hope I never forget again.

Our conversation happened a little over a week after Tarica had been diagnosed with epilepsy. Joanna and her family had attended our Sunday morning church service. She asked me about Tarica’s seizures and our experience in the hospital.

I said, “Her seizures started two weeks ago. Or is it three? No, it’s only two weeks. Time is….” I trailed off, waving a hand inadequately. “It feels like….”

“It feels like you lived a lifetime in a week,” Joanna said, and the certainty in her voice caught my attention.

“It sounds like you know from experience,” I said.

Joanna smiled, a bit ruefully. “We spent part of a week at Hershey Medical Center with our oldest child when she was three. They told us she had leukemia, but then they discovered she has a rare genetic disease called Immerschlund-Grasbeck Syndrome. It’s a vitamin B-12 deficiency, and without treatment, it’s fatal.”

I looked at her daughter, now a healthy eleven year old. “How is it treated?”

“A B-12 pill dissolved under the tongue every day,” Joanna said.

And then I said it. “At least—” Wait. What am I saying? Her child has a disease that could be fatal, and I say “at least”? I started over. “I won’t say ‘at least.’ It’s meant to be consoling, but it’s actually insensitive. You would prefer that she has no genetic disease at all. The treatment may be simple, but I’m sure it hasn’t been easy to accept.”

I was shocked at how easily “at least” had fallen from my tongue. With our daughter’s diagnosis, I had been freshly reminded of the sting behind the phrase. “At least it’s not a brain tumor.” “At least it’s just epilepsy.” “At least she can live a relatively normal life.”

I understood why people said “at least.” My mind had conjured many horrific possibilities when Tarica’s seizures appeared out of nowhere and escalated crazily in a matter of days. Of all those possibilities, epilepsy was the least horrible. But did that mean epilepsy was a good diagnosis because it could have been worse?

No. Never. What mother would wish epilepsy—or any other disorder—on her child? Better to be healthy, no matter what other possibilities existed.

What makes me think “at least” is comforting? At least you weren’t very far along. At least the grinder didn’t take his whole hand. At least it was her arm and not her leg—or his leg and not his back. At least it was the barn that burned and not the house. At least it’s benign or operable or manageable or not life-threatening. At least he’s in heaven now.

Is it comforting to say it could be worse? It is consoling to imply someone should be grateful the situation is only bad and not terrible? Just think, I say sympathetically, of all the awful things that didn’t happen. To someone hurting, that is no comfort.

The consolation of “at least” rings hollow. And still I fell into the trap of it.

When people experience a loss, a medical diagnosis, or a death, we acknowledge their need of comfort. But too often, we approach their grief with a clinical detachment. We have weighed their grief in our balance and discovered the good and the bad within the pain. This human tendency to categorize joy and pain is why Romans 12:15 was written: “Rejoice with them that do rejoice, and weep with them that weep.” Instead of pointing out facts, we need to experience the emotions of joy and sorrow with our friends. There is no room for “at least” in this kind of comfort.

I don’t want to be a miserable comforter, like Job’s friends. I want to be a friend who bears another’s burden, who shares in the joy and the pain of another life’s as if it were my joy and my pain.

It’s the least I can do.

* * *

This is not written to any of you. Your prayers and your words have uplifted and strengthened me; I am grateful beyond description.

This is written to Stephanie, because Stephanie too often says things she lies awake over and regrets. Perhaps by writing out this lesson, she will not forget it.

*name changed to protect privacy

A Slow Unraveling, Part 2

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This is the last of the updates, this one from October, with a November update tacked on the end. If you’ve read all the portions of her story, some of this information may not be new, but it reveals the order in which we learned what might come next.

October 20, 2014

I’m not sure who hates blood work more, Tarica or her mother. This time, at least, she didn’t scream and fight. She looked at me as the syringe filled red, and her eyes sheened with tears, but she stayed calm. She’s learning to accept the needles that come with the drugs. A number of AEDs (anti-epileptic drugs) require routine blood work to ensure the drugs are not destroying the body while protecting the brain.

Her Carbatrol levels were low, so we increased it, with three seizure-free days following. By this time, I no longer had much hope in it lasting, so the return of the seizures on the fourth day did not devastate me.

Over this time, Tarica began having two distinct types of seizures. One of them was close to the original kind: Her arms extend stiffly, sometimes flexed, sometimes not; her head tips forward and to the side; her breathing deepens and quickens; her eyes glaze over and blink spasmodically. The other kind of seizure scares us: It has all the characteristics of the first kind, but it’s longer and her whole body spasms and she loses her balance and crashes to the floor. Or down the steps, as she did once. If only she had enough warning or presence of mind to protect herself from injury.

At a doctor appointment on October 13, I discussed options with Dr. Thakkar. Tarica has officially failed two medications—meaning, two medications have failed to suppress the seizures. Once an epileptic has failed two medications, she has a less than 5% chance of gaining seizure control with drugs. Because of these low odds, doctors recommend seeing if control can be gained through other means. These options include the ketogenic diet, VNS implantation, and brain surgery.

However, Dr. Thakkar wasn’t quite ready to cry uncle. She had one more drug she wanted to try, a “big gun,” she called it. “If Depakote doesn’t stop the seizures, then it’s not likely any other drug will either,” she said. “Let’s try it, and in the meantime, I recommend you meet with Dr. Gedela. He works with patients like Tarica, and he’ll tell you what he thinks you should do next.”

Apparently, she wasn’t putting much faith in Depakote, no matter how big the gun, if she wanted us to explore our next step.

Our next step. I wonder where it will take us. For several reasons, Tarica will not likely be put on the Ketogenic diet. This leaves VNS implantation and brain surgery. At this point, brain surgery is our best option, although Tarica will need numerous tests to determine if she qualifies for surgery.

In the days leading up to the start of Depakote, Tarica had three to seven seizures during the day. When we added Depakote to her regimen, we saw little change in seizure frequency. Perhaps it will take a while for the drug to build up in her system. Or perhaps it won’t work at all.

We found one blessing in this drug switcheroo. With the change from Tegretol to Carbatrol back in August, she became someone nearly like our Tari again, the Tarica-not-on-drugs we miss so badly. She pays a price for this: The Carbatrol gives her daily bellyaches, sometimes lasting most of the day.

As of today, October 20, Tarica is on three drugs and has at least three seizures a day. I am working at weaning her off Keppra; we have little evidence it’s been effective. Once she is off Keppra, some of the remaining behavior problems and mood changes—known side effects of Keppra—may disappear. Sometime this week, Dr. Gedela’s office is supposed to set up an appointment for us to meet with him.

This morning while getting ready for school, Jenica said to me, “Sometimes my friends scare me when they breathe heavy. I think they’re having epilepsy.”

I laughed, even though it wasn’t funny. “I know exactly what you mean,” I said. “When I see a child put his head to one side in an odd way, I think he’s having a seizure, too.”

Linford said the other day, “I can’t figure out why I’m always tired. Maybe it’s because of the ongoing stress of Tarica’s condition.”

When one member suffers, the others suffer, too. This is what it means to be family.

* * *

Read When God Answers Prayer, Sometimes It Hurts for an account of our visit with Dr. Gedela.

* * *

And a final update for today, December 1:

Tarica is weaned off the Keppra. She is still on Carbatrol and has had the Depakote increased, but she still has seizures nearly every day, numbering from one to six. This does not include her nighttime seizures, but since she sleeps through most of them, we are rarely up to count them.

Although it doesn’t seem like much improvement, she is doing better. She has an occasional and random seizure-free day, but unfortunately, we don’t know until bedtime that it’s a day worth celebrating.

Nearly all her seizures now are like the one she had when we were with Dr. Gedela. If she is standing, she falls over, and her whole body convulses.

Children’s Hospital has not yet opened their 2015 calendar for scheduling, but once they do, we will have a date for Tarica’s hospital stay. This will be the ten-day stay with all the tests that will determine if she qualifies for brain surgery. Or not.

I have no idea how to pray, so I have come to this: Lord, Thy will be done.

Will you pray this with me?

A Slow Unraveling, Part 1

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This post covers the six months following Tarica’s epilepsy diagnosis. It was written back in September, so when I say “today,” I’m referring to the day I wrote it.

* * *

September 8, 2014

Six months have passed since that Saturday in March when Tarica put her fist into her cereal bowl. She continued to seize for several weeks after her hospital stay, but the seizures dwindled in number and eventually disappeared. We—her mother most of all—struggled to accept the child she had become on the anti-seizure medication.

In the early days following her diagnosis, the drugs made her so tired she was sleeping up to seventeen out of twenty-four hours, more than her baby brother slept. After some adjustments to the dosage, the sleepiness dropped to a more acceptable level, although she was still noticeably drowsy.

She had been an easy child, but no longer; this Tarica was more aggressive, more volatile, and more irritable, common side effects of anti-seizure medication. The day after she came home from the hospital, I saw for the first time what would become normal: She and Jenica fought like alley cats. Prior to epilepsy, Tarica had been too laid-back to stand up to her big sister.

I grieved the change in Tarica as much as I grieved the seizures. Between the seizures and the drugs, we had lost the girl she was supposed to be, and on the worst of days, the grief felt as real as a grave.

But the seizures were gone. If this was the price of living seizure-free, then so be it.

We spent May and June in relative calm.

Mid-July, the seizures returned. One, at first, followed by a second one a few days later. Eventually, they were occurring once a day, and I called the doctor. Over the next several weeks, we increased both her Keppra and Tegretol doses. The seizures kept coming until we were seeing them two and three times a day.

Dr. Thakkar prescribed Klonopin as a bridge medication for two weeks. This drug is so strong it can only be used for a short time. Dr. Thakkar hoped the Klonopin would suppress the seizures long enough to allow the Tegretol and Keppra to take hold. However, we saw no difference when she was on the Klonopin; in fact, the seizure frequency was escalating.

Near the end of August, Dr. Thakkar changed the liquid Tegretol to a slow-release capsule version of Tegretol called Carbatrol. This time, we saw an almost immediate effect on the seizures. Within days, Tarica was down to one seizure a day, and on August 31, we celebrated her first seizure-free day in over a month. Four more days followed, all with no seizures. I couldn’t believe how much lighter I felt. Gone was the watchfulness that had dogged my steps.

On September 5, the seizures returned. Three happened that Friday, followed by three on Saturday, one on Sunday, and two on Monday—today—so far. When she heard the seizures were back, Dr. Thakkar instructed me to take Tarica for bloodwork to check her drug levels, which I am planning to do tomorrow. If the levels are low enough, we will increase the Carbatrol.

Maybe that will be the answer.

The story continues in part two.

How Can I Be Thankful When I’m Hurting?

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I wrote this a few years ago. In reading it now, I find that what applied to miscarriage also applies to epilepsy. Except…I’m still going through the motions of thanking God from the rubble. Far easier to write of it than to do it.

* * *

It took years—and the loss of three babies—for me to realize this simple truth: I deserve nothing. Not the children I desire, the salvation I need, the house I want, the husband I love. I don’t deserve it, have no right to expect it.

I love King David’s words in 1 Chronicles 29:14: “But who am I, and what is my people…? for all things come of thee, and of thine own have we given thee.” All that I am and own and claim is God’s, granted to me because He loves me.

This truth changed my life. I now hold what is dear to me with open hands, knowing it is all a gift. Gone are the fists clenched tightly around what is mine, the fists I dared to raise to God in my grief. I hold my gifts lightly, savoring each moment, for I know they can swiftly disappear.

Strange as it may sound, I can thank God for miscarriage. Thanksgiving doesn’t mean I’m glad my babies died. Thanksgiving means I am grateful to God for the lessons miscarriage taught me and for His faithful care of me. God never failed me. My own shattered expectations caused my pain. As I went through the motions of thanking God from the rubble of my dreams, I found that, over time, I became thankful. I found that God was bigger than my pain.

Once, I believed motherhood was mine to claim, but God showed me it was His to bestow. I do not know what the future holds, but as I sift through the pieces of the past, I find the faithfulness of God over and over again. Even when my tears fall into my open, emptied hands, I have a Father Who cares for me and for all mothers who weep for their children.