My Guilty Secret (and Great Struggle)

I have written little of seizures lately.

This is because I’ve been trying not to think of them.

Here’s what I’m trying not to think about: We’ve seen no seizures since Tarica came home from the hospital.

Before you break out the party hats, let me tell you this is the worst possible timing.

Back in November, Tarica was seizing three to seven times a day. The seizures swallowed her life and vitality with the same ravenous appetite displayed by the wolves that lived under my bed when I was six. Brain surgery is a drastic measure, but we agreed to move ahead, bolstered by the continual seizing. She could not live like this.

The seizures continued, and with each one, I felt reassured that we were doing the right thing. When the seizures slowed down around the beginning of the year, I began questioning the wisdom of brain surgery, the wisdom of our choice. Mid-January, Tarica had a severe seizure that felt like God’s answer to my questions.

Yes, brain surgery was better than this guarded half-life she lived.

In the weeks prior to her February hospital stay, the seizures quit. My struggle began again.

But she seized at the hospital as if she were on a schedule, and the tests went well, and God was right there in room EP4, and my heart did not fear. Underneath my surface questions, I had such brave, blind faith that Tarica would qualify for brain surgery. We would agree to do the surgery, it would be successful, and we would shut—no, slam!—the door on epilepsy and live seizure-free ever after. I had the story already half-written in my head.

We came home. Tarica was back on her meds, and we waited for the testing results, waited also for the seizures, for something to happen.

Nothing. She has not seized.

And God has never felt so far away.

I told you the doctor called a few weeks ago, and during that conversation I realized Tarica might not ever be healed. I didn’t tell you what she said that opened my eyes to this truth.

She said, “If Tarica isn’t seizing, I don’t recommend you do surgery. Brain surgery is not a preventive measure; it’s a curative measure when seizures cannot be otherwise controlled.”

But if her seizures are under control, shouldn’t I be rejoicing? Isn’t control what we want?

No, no, no. I want her cured. I want her healed. I want her to live without the fear of seizures hanging over her, because while the seizures are controlled right now, they could return at any moment. I want her off medication so she can be my sweet Tari again.

If her seizures can be controlled by medication, why then did God open the doors for Phase One to happen? Why did brain surgery seem like our destination if it wasn’t?

I had hoped and prayed for healing, but it’s worse, I tell you, to live with hope, because disappointment makes the heart sick. That’s not my thought; it’s God’s inspired words in Proverbs 13:12.

There are several possible reasons why she isn’t seizing:

1. She is mysteriously and miraculously healed.

2. The medication is working.

3. God is giving us a reprieve before the seizures return.

4. God is shutting the door on brain surgery.

I didn’t want to tell you about this, because it feels like I began telling a story and suddenly forgot the punchline. It feels like we began a journey and along the way forgot our destination.

Now what?

We have an appointment next month in which we will discuss at length the test results and their official recommendation on what to do. If she still isn’t seizing, I doubt they will recommend surgery. Perhaps God knows this to be a good thing, but to me it feels like a lost opportunity for healing. Perhaps God has something better for us, but it’s hard to see that through my tears.

I want her healed. I don’t know if I ever wanted something as badly as this. If I did, I can’t think of it.

We’ve been praying that God would make our decision clear. Maybe this is His answer.

It’s not the answer I wanted.

Whatever the answer is, I pray it will be the best one for our daughter.

Even if it hurts me.

10 thoughts on “My Guilty Secret (and Great Struggle)

  1. Stephanie, I am really sorry! I don’t have words for you. But I will and am praying for you and yours. Remember God’s promise. I will NEVER leave you nor forsake you!

  2. I’m sorry. I’m really hoping for number one. Praying that you would feel God’s love and feel him close to you. He’s there..I know it. And He cares about you..a lot. And He is hurting with you, that’s how much he loves you. Praying that He will show you the next step..until then, trust Him. ( and i know that’s much easier for me to say than for you to do). Hugs!

  3. Dear friend, Jesus sees and cares. He feels your pain and knows your heartbreak. I’m so sorry… Love and prayers, Kay

  4. Stephanie, I’m so very sorry for your heartache and pain. I am still praying that God would have His way. I’ll pray that you and your husband hear His voice and can clearly see and follow the path He has laid out for Tarica.

  5. I’ve been sitting here throwing out possible comments one by one…… words are just so empty! I can come up with the most beautiful words in the world to speak to your aching heart, but I have a feeling what you really need most is a ((hug)).

    Praying that God would come near………

  6. God said, “My grace is sufficient for thee: for my strength is made perfect in weakness.” Praying that God gives you an extra dose of epilepsy grace at this time (your post on that subject is what first drew me to your blog). Epilepsy is a dreaded thing – I pray for Tarica’s healing!

  7. My sincere sympathy to you. Also some encouragement. When my husband was a young boy he suddenly started getting seizures. They were not under control for a while and he missed a lot of school. He was getting grand mal seizures. Eventually they got him on the right meds and they are completely under control. In our almost 20 years of marriage he has had one, and that was at a time he was sloppy with taking his meds because a doctor had told him he might outgrow them. May God give you much grace and wisdom as you walk through this trial.

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