Here is another post from Stephanie. She writes beautifully and is in need of prayer. So, if you feel inclined, please read and pray...
070: A Mountain as High as Heaven
On the last Sunday of 2019, I sat in a church not my own and listened to a preacher I had not heard before. But God found me there, a stranger in a strange land, and gave me the nearest thing to a vision I’ve ever had. He knew I would need it.
The preacher said—in my own words—that prayer is an essential work of the church even the least of us can do. He moved on to another point, but I didn’t go with him. Instead, I saw—as clearly as if I were standing beside it—an enormous mountain made of Bible-sized
stones. Beside the mountain was a pile of dirt, maybe the size of a garden shed owned by a disinterested gardener. People carrying more stones kept walking up to the mountain and adding their stones to it. With each new stone, the mountain grew a little taller.
I knew instantly that pile of dirt was epilepsy and the mountain was prayer. Each time someone prayed, be it me or Linford or anyone else, the mountain grew higher and the dirt pile grew comparatively smaller.
Not that the dirt ever disappeared. Not that it ever turned into gold. There was no analogy here about dirt becoming a rich bed where flowers bloomed. Nothing would make the dirt pile beautiful.
But prayer can be taller and wider and deeper than epilepsy.
I shared this scene with a friend’s mother, who is herself becoming a friend and watching her husband drift toward eternity. No one can turn this tide for them.
When I was finished describing the scene, she said, “You know what I saw when you were talking? I saw those stones becoming a stair that went up to touch the heart of God.” A stair of prayer, built by His people, on behalf of the suffering.
Prayer feels like such a small thing, a mere pebble sloshing about in an ocean of tears. But together, the people of God can construct a mountain or build a stair that reaches to heaven. Prayer is a united effort, you on your knees and me on mine, or words
whispered in the night watches and wept into the dishwater. We do Kingdom work when we pray, even though often it feels we toil alone.
I knew the importance of prayer, but this scene showed me how much others have worked on our behalf. Even as life dumped epilepsy on us, God’s people had built a beautiful mountain of prayer that dwarfed the pile.
I have returned to that scene over and over again this past week.
As 2019 turned into 2020, a switch flipped in Tarica’s brain. On January 2, she had 15 small seizures in 30 minutes at school. We started seeing a new seizure type, longer and harder than usual. On Saturday, we counted 15 seizures, and on Sunday, 12 seizures
in 12 hours.
On Monday, she was admitted to Children’s Hospital of Pittsburgh to be put on a massive dose of drugs by IV. If the once-an-hour seizure pattern could be broken, it was hoped her regular drugs could grab hold and gain some control. When IV meds didn’t work,
she was transferred to the ICU for a drug infusion that needed to be done while she was closely monitored. The initial dose made her nearly comatose, which is dangerous without a breathing tube, so they halved it. She regained consciousness and promptly restarted
seizing. They put her on a three-quarter dose, and she became comatose again. There was no sweet spot in the middle for her.
On Thursday morning, the doctors came in and said they could do nothing more for her. Short of inserting a breathing tube and sedating her, a procedure with many risks, we had no more options. She had created a new baseline, a new normal—one seizure an hour.
And her brain wasn’t budging.
Linford and I have been praying for God’s guidance as we consider the next step for Tarica. We believed it would be reasonable to seek a second opinion at Children’s Hospital of Philadelphia. Not because we had a problem with Pittsburgh—far from it. We simply
wanted a new perspective. Our appointment was on Friday, January 10.
Instead, she spent the week of that Friday in a children’s hospital on the opposite side of the state. Any other week would have held little significance. Why this one? The door we thought was opening in the east had swung ajar in the west.
Tarica will return to Children’s Hospital of Pittsburgh on March 2 to start the surgery process. Nearly five years have passed since our first attempt at surgery, and in that time, neurosurgery technology has leaped forward. I’ll explain more some other time,
when my eyes aren’t so gritty from crying, except to say that there is now a robot involved, although it will be programmed and guided by the aptly named neurosurgeon, Dr. Abel.
The week could feel like a waste, but it has clarified how truly drug-resistant her seizures are. It aborted our move toward Philadelphia. It made our path forward clear. After Linford and I said yes to surgery, we felt such peace, even as she seized beside
us. I wish I could have bottled that sensation to drink of deeply in the ICU when I realized we would be going home as we had come, with perhaps two months of continual seizures ahead of us.
But even surgery offers us no guarantees. It may not work. It may be too dangerous to touch the area of her brain from which the seizures spark. Nobody is making us any promises these days.
Except God—and we cling to His.
This week, we have been well-prayed for. Our mountain towers over us, and from it flows living water. But it also looks like our dirt pile has grown. I do not know how we are going to live like this, nearly every waking hour marked by a seizure. I come begging:
Will you pray for us? Please help us build this mountain up to heaven, to touch the heart of God.
And please, I know you care, but I can’t handle suggestions for alternative treatments right now. We are not deliberately ignoring some miracle cure and most likely know about the one you think might work. She is in the care of doctors who consider many
possible treatments, not only the traditional ones. If you believe we might benefit from a different approach, ask our Lord to make that clear to us in His own time.
In the last few weeks, there have been a number of new subscribers. One disadvantage to email over a blog is that new readers can’t flip through recent posts. Here are links to the last few emails.
I'm shocked to see how little I have written for Serendipity in 2019. Last year was full of seizures and the many ways we tried to stop them. At times, I resent how wholly epilepsy consumes both her and us. It has upended our lives and broken our hearts.
What has upended your life? If you share with me the story of your dirt pile, I promise I will help add to your mountain. I cannot promise I'll reply, but I will pray for you. Prayer is taller and wider and deeper than the things that break our hearts.
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