Monthly Archives: December 2014

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?