A Sudden Onset, Part 6

Read part one, part two, part three, part four, and part five first.

This portion of the story opens the day after we received Tarica’s epilepsy diagnosis. She is still seizing, but now we know why. Sort of.

* * *

Friday began with purpose: to get Tarica’s seizures under control and to discharge us as soon as possible, given our self-pay status. Tarica was restless and irritable, wired as she was to a machine. She was also actively seizing.

As she ate breakfast, her head kept dropping to the side, her breathing would grow heavy, and her arm would lock into what had become her normal seizure posture. One seizure came after the other, and I looked at Linford, frightened. “Are we supposed to take her home when she’s seizing like this? I don’t know if I can do this.”

“I want to get out of here,” he said. “We need to get home. She needs to get home.”

I straightened Tarica’s pillow as she came out of a seizure and moved her tray closer. Her hand shook as she shoveled eggs onto her spoon. I moved away and spoke quietly. “I want to leave, too, but I’m the one who will be giving the medication and providing her care. It scares me. So much to learn. And what if she has another tonic-clonic seizure?” I rubbed my forehead. “I don’t know if I could handle it.”

“We have the emergency drug if a seizure doesn’t stop.” He eyed me. “Do you want to stay here until the seizures are gone?”

I shook my head violently, impatiently. “No. No, I don’t. It’s just…too much.”

* * *

Dr. Rajan prescribed Tegretol in addition to the Keppra. She and Dr. Katie went over the dosing instructions with me several times. I learned how to use the emergency drug, a nasal inhalant that would snap Tarica out of seizure if she had one that would not quit. They gave me reams of information—on epilepsy, on seizures, on medication—which I stuffed into a blue folder for a time when my head was clearer. If all went well, Dr. Katie said, we would be discharged that evening.

Sure enough, the EEG wires were removed that afternoon. For the first time, Tarica was free to climb out of bed. Her first steps were like a baby’s, and as she teetered and careered all over the room, I remembered vaguely that one of the early side effects of Keppra was unsteadiness.

After watching her rocket around and bounce off the walls, I volunteered to take her to the playroom next door while Micah (and Linford) took a nap. The first toy she claimed was a little car, so I took her on a few jaunts around the unit. We passed by many doors, most of them closed; behind each one, children had wept and slept, cried and died. I wished I knew the stories that had begun and ended here on floor seven. Perhaps those stories would take my mind off the unknowns in the story we were living.

In the playroom, Tarica raced from one toy to the next, as if they would vanish at any moment. There was a madness in her movements and in her eyes. And she never said a word. She was a silent bird trapped in a room, crashing blindly inside unfamiliar walls.

Unsettled, I looked through the game cupboard for something to occupy both of us. I pulled out a box. “Look, Tarica. Want to play Memory with me?” It was a test. She loved Memory and was able to match more pairs than I in nearly every game we played. Her ability had always astounded and confounded me.

She staggered up to the table and plopped into a chair. We flipped the cards upside down and started playing. As she began amassing a stack of pairs, the knot in my stomach loosened. Despite my best efforts, her stack grew faster than mine, and when she ended the game triumphantly, I was grinning nearly as wide as she was. Underneath the drugs and the seizures, she was still our Tarica, and her memory had survived intact.

A nurse informed us that the discharge papers were nearly ready to go, and we could start packing up. Linford began hauling suitcases and bags out to the van stashed somewhere in the bowels of the parking garage. It took multiple trips; where had all this stuff come from? He stopped at the hospital pharmacy to pick up a collection of drugs, the first of many prescriptions filled. I got Tarica dressed, but her hair, after four days of glue and wires, was a tangled, greasy mess, impossible to tackle at the time.

While she teetered around the room, I gathered odds and ends together and overloaded the stroller. Before we left Room 721 for the final time, I picked up a dry erase marker and wrote “Thank you so much. The Leinbach family” on the whiteboard. It had been a grueling four days, but we had been treated well. Even more, we had been given the knowledge and assistance we needed to live with an epilepsy diagnosis.

2014 202

We stepped from the hospital into the parking garage, and as the scent of exhaust and wet concrete hit me, I realized that Tarica and I had not been outside since Monday, unless you count the brief space between house and ambulance, ambulance and hospital, on Tuesday. For four days, our world had shrunk to fit inside the brick walls of Children’s Hospital, and while others came and went, including her caregivers, we stayed and waited for a verdict and a plan. And we were just one family out of so many. I thought of all the people I had encountered in my treks to and from the cafeteria. All those parents of children, all those children suffering.

I wanted suddenly to just be home.

We pulled out of the parking garage around 7:00. As we threaded through Pittsburgh’s streets, I looked back to see Tarica had climbed out of her seat belt to stand, half-crouching, on her car seat. I muttered to Linford, “She’s acting crazy.” Turning in my seat, I sat her down and strapped her in again.

Linford asked, “Tarica, do you want to call Gram and tell her you’re going home?”

That pleased her—and distracted her from another escape attempt. Linford dialed his mom and handed the cell phone back to Tarica.

She had barely begun to speak when she broke off mid-word. I looked back to see her seizing. I rescued the phone and finished the conversation.

Within the next fifteen minutes, Tarica had seven seizures. What if…what if…? Fear leaned in and nudged me, along with disbelief. It wasn’t over. We were going to have to live with epilepsy. It didn’t fit into our world, our plans, our dreams, but we didn’t get to
choose. We could choose only to face it with courage in spite of fear and faith instead of doubt.

We would face it with God.

There was no other way.

9 thoughts on “A Sudden Onset, Part 6

  1. What a testimony! Thank you so much for sharing your journey. There really is no other way to live through all of the trials and tribulations that life throws at us than by faith in our Lord and Savior.
    Also, I said it early on Stephanie, you are an excellent writer/story teller. Have you ever thought of freelancing or possibly writing a children’s book?? Of course, in between being a wife, mom and homemaker!
    May God continue to bless you and your family each and every day. Have a wonderful Thanksgiving!

    • I wish faith meant that the trials would be easy, but it doesn’t seem to work that way.

      I do some writing for a few Amish/Mennonite publications, and I also edit for several writer friends (including a few projects in my inbox right now that I must get to). One way or another, I will likely be working with words the rest of my life and will love every minute of it. A children’s book isn’t likely, though; it takes a level of skill and interest I don’t have in order to succeed in that arena. I do have some writing dreams, but I’ve yet to sort out what God wants me to do with them, especially in light of the reality we have been given.

      A blessed Thanksgiving to you, too, Ann.

  2. I always enjoyed your guest blogs on Home Joys, Stephanie. And just started getting your own blog now, which I am enjoying greatly! My heart was touched as I read your journey with your little daughter and epilepsy. May God continue to supply all your needs……courage, wisdom, strength, peace and joy.
    On a side note, I am so blessed to see the young woman you have turned out to be! I remember you as a little girl from Shirksville, many years ago!! Keep serving faithfully where God has planted you……

    • Charlotte, my strongest memories of you are when you were the mother of several young children. It seems like if we were to meet now, you and I would be the same age, but the truth is, it’s been a few decades, and both of us are quite a bit older. Wiser, too, I hope. 🙂 Thanks for your encouraging words, and may God bless you and your family.

  3. Thank you so much for sharing your story, Stephanie and please know that lots of prayers are being offered in your support.

    In light of your story, the timing of this story in my local newspaper was very interesting:

    http://tbrnews.com/news/manhattan_beach/fighting-on-manhattan-beach-teen-beats-epilepsy-with-more-than/article_8d7bc932-6b5e-11e4-8fe9-8f949cabd9d9.html

    Also when you mentioned that you were “self-pay” I thought I’d mention Medi-share (https://mychristiancare.org/medi-share/)? I heard it advertised on a Christian radio station that I like to listen to (KWVE.com). It is an insurance program of fellow Christians.

    “It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed.” -Deuteronomy 31:8

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    • I’m not sure how I feel about surgery success stories. I love reading them, but then I worry that our story won’t be the same. I know, I know, I shouldn’t worry–God is in control. Thank you for sharing it, Monica, no matter how I feel. What I found interesting was that the girl’s seizures were complex partials, which is what the doctors say Tarica has. Of course, seizures are different in each patient, but it made me feel connected to the story and made me hope for the same outcome.

      We are self-pay, but we are part of a church that helps each other out when a family encounters medical bills too large to cover by themselves. We are grateful for and humbled by their assistance, and when the tables are turned and we are able to give to others, we will do it, knowing that we owe a debt we will never be able to pay, not just in money but in love and prayers.

  4. continued prayers for healing….as an adult with siezures starting at 40 I can’t imagine dealing with any of my children or grandchildren having the devastating kind Tarica experiences, hopefully in time they will subside and the medication will bring that result faster. Mine are petit mals and with keeping a diary I was able to see what triggers them for me, and we are all different, and at 71 it is only every few years but now unfortunately it is followed by vertigo besides the confusion. But I am blessed in the beginning it was every 45 minutes. I pray Tarica will have the same or even better results. Nice that you see God working and can smile here and there. Tarica winning the memory game made me smile too.

  5. We have a daughter who takes Carbamazepine and Topiramate every day. She has ‘silent’ seizures from a MVA in ’99. You are in my thoughts and prayers; this isn’t an easy road but we have God and that’s the best thing!

  6. I finally just took time to read your seizure story. After being introduced to your blog, I had just read your more recent updates. Our oldest daughter I found in bed the first time, just staring at the ceiling & she wouldn’t respond to me. That was a helpless feeling! She was never diagnosed with epilepsy since she never had another seizure, but then our second daughter started with seizures & has been diagnosed with epilepsy. Although the last 3 1/2 yr. we haven’t seen any seizures, EEGs still show seizure activity, so time will tell if she outgrows them. She just turned 10 yr. I found it interesting to see these pictures. Sure enough, your husband is the Linford Leinbach I worked with at Good’s store 17-18 yrs. ago. (I was Karen High in shoe dept.). We will continue to pray for you as you go through these tests & hopefully receive more answers. God bless!

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