This is a continuation of our epilepsy story. Here are the links to part one, part two, part three, and part four.
As this portion of the story opens, Tarica had been in the hospital for two days. We had not yet heard the results of the MRI and spinal tap. She was still seizing.
* * *
Thursday morning dawned, two days, two weeks, two years since we found Tarica unconscious. What is time when your child is in the hospital? It’s merely the intervals between discovering another piece of the puzzle.
Our pastor Jason and his wife Christine arrived mid-morning, accompanied by Linford and Jenica. We had decided to pull Jenica out of school for a day so the girls could see each other and so we could briefly be together again as a family. Tarica was happy to see Jenica, who brought a stack of cards from her classmates, and the gift and balloon from Jason’s. But she drew her greatest joy from the smallest visitor. Jason and Christine had brought their infant son along, and Tarica begged to hold Trent. Christine helped Tarica cradle him for a little, and she briefly glowed with her old joy. This had not changed. She still loved babies.
Not long after the visitors arrived, Dr. Rajan, one of the neurologists seeing Tarica, stopped in with the MRI results. It was odd, to sit beside my daughter waiting for the verdict, knowing that what is going to come out of the doctor’s mouth will change our lives. To think: I should be horrified and shaking, but I’m calm and resolute. Perhaps anything, even a terrible diagnosis, was better than not knowing.
With the ease of practice, Dr. Rajan laid out the facts. “The spinal tap came back clear. No sign of any infection causing the seizures. Good news.” We nodded. Yes. Good news. “The MRI, it looked good—except one tiny speck of abnormality, so small you almost have to imagine you see it, on the right side of her brain, near the division between the two halves.” The doctor touched the top of her head. “We don’t know why it’s abnormal. It could be caused by the seizures, or it could be causing the seizures. Perhaps she had it from birth. We don’t know.”
“What does this mean?” Was it Linford or I who asked the question?
“Epilepsy.”
* * *
In eight letters, we entered a new world. It wasn’t so very different from the one we left behind, but for a profusion of strange words—complex partial seizures, status epilepticus, tonic-clonic—and a boatload of new fears for our daughter. Epilepsy is, despite the medical knowledge and technology of the twenty-first century, a disorder with many unknowns.
With the diagnosis, the hospital staff began focusing on managing the seizures with the right combination of medication, as well as educating the patient’s parents. So much information—my head felt like it would split.
I drew great comfort from one fact: Dr. Rajan reassured us that the seizures had caused no brain damage. During that endless first night in the hospital, I feared a brain tumor and I feared brain damage. I thanked God over and over that neither existed.
After several hours, Jason and Christine left, taking Cassondra and Jenica with them.
The night did not go well. Tarica was restless with frequent seizures, but it was easier to face an enemy that had a name.
Epilepsy.
* * *
A quick update on the arm: Tarica has a fractured elbow.
When the doctor asked her what color cast she wanted, she eyed him narrowly. “What colors do you have?” she asked.
“Well, we have red and blue and green. Oh, and purple.”
She frowned. “But do you have pink?”
He did, and she is now wearing a neon pink cast. She could stop traffic and indigestion with it.
Which we will undoubtedly be grateful for when we get the bill.
* * *
Read more in part six.
Oh the poor dear! No wonder her arm hurt. So glad she could get the color cast she wanted 🙂 Sounds like a girl who knows what she wants 🙂
When it comes to pink, she definitely knows what she wants. 🙂 The apple doesn’t fall far from the tree. When I was nine, I had a cast the same vivid shade.
I recently discovered your blog and have been following your posts. I didn’t realize who you were until you mentioned Jason and Christine. I don’t know them really well, but know who they are are. My husband ( Derwin Seibel ) would be a cousin of Cindy Martin’s husband. ( Mennonite game. ) We used to go to Susquehanna Valley, but have now been attending Millmont for about a year and a half.
– sorry for the long introduction…. but definitely know I’ll be thinking of and praying for you, that you’ll have the strength to take each day as it comes and the wisdom to make each decision.
Thanks for introducing yourself, Christy, and welcome here. Although we’ve never met, I know quite a few people who know you. If you want to play a little more of the Mennonite game, I’ll add that Derwin is actually distantly related to both my husband and me through different branches of his father’s family. In fact, the connection between my husband and yours would be through the Newswangers, the family tree that appears to carry the genetic tendency toward epilepsy. Not that I’m trying to scare you. It’s just that, but for the grace of God, the story I’m sharing here had just as much chance of belonging to you.
Thank you for praying.
That’s interesting. My husband is from that family too… first cousin to Derwin. =) Is there history of epilepsy in the family anywhere?
I too, have been following your story and waiting for each new post to get us caught up to where you are today. Your courage in the face of trauma and upheaval are encouraging to me.
Keep on writing – you have an amazing gift. I love that you’re sharing it with us.
Yes, there is an unusual amount of epilepsy in the Newswanger family tree. Since I don’t have permission to name names online, I’ll simply say this: Your husband has two cousins and an aunt with epilepsy. My husband has an aunt and had a grandfather and a great-uncle with epilepsy. Another great-uncle (also your husband’s great-uncle) has a grandson or a great-grandson with epilepsy (I’m a little vague on that detail). Another relative of my husband had one seizure, went on medication for a year, and never had another one. (It takes two or more seizures to officially make it epilepsy.) Most of us are related to no one with epilepsy. My husband is related to seven that I know of–no, eight, counting his daughter. I call it too many cases to consider a coincidence.
The medical world acknowledges that genetics plays a role in epilepsy. They also acknowledge they have only begun to learn what that role is.
I’m not trying to scare you. 🙂
I can’t imagine what you must all be going through. And yes, I feel very humbled that it isn’t us. May He give you strength.
Come to think of it, I do know one cousin that has it. But I didn’t know about the rest. I might have to do a bit of research. =) Then again, maybe not. And we’ll deal with it if it ever shows it’s face here. Unless there are things to do to prevent it…
One of your husband’s cousins had brain surgery about four years ago and has been living seizure-free ever since. His story has some parallels with Tarica’s. I hope our outcome is the same.
For epilepsy with a genetic connection, there is nothing to do but pray it won’t happen to you. It’s not specifically a genetic disease; it’s more like a genetic weakness.
I”m so glad to read that the doctor had “pink” for Tarica! My youngest, the young man who just turned 15, jumped out of a swing when he was 8 and broke his arm near his wrist. Neon orange was his color of choice for his cast!
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