Phase One of Brain Surgery: Day 3

Read the previous evening’s adventures here.

* * *

Saturday, February 7

I woke too early, feeling like I hadn’t slept.

While I had uninterrupted quiet to think and pray, I read my Bible and did some writing. No one disturbed us that morning, so Tarica didn’t stir until 9:00. When she awoke, we ordered breakfast, and then I got her up and dressed.

I’m not sure when I first noticed her fidgetiness. She was decidedly not the girl of the previous evening. She wiggled and squirmed, a body in constant motion, and her attention span was—well, she had little to none. Her orneriness had returned, too.

But why, if she wasn’t on medication?—and then I remembered the Ativan. Two doses within two hours. I remembered also her behavior in the hospital eleven months ago. We had blamed Dilantin—and certainly Dilantin had caused the hallucinating and fighting—but it looked like Ativan might have contributed to her agitation and inability to relax.

Tarica made a nice-sized dent in her breakfast and was still nibbling at it when our visitors arrived.

My sister Cassondra and three of her friends drove out to spend a few hours with us. Never was I so happy to see a crowd. (Yes, for introverts like me, four is a crowd.) They helped to entertain Tarica and gave me adults without badges to talk to.

I can see the photo in my mind: four smiling young women gathered around a small girl. It’s the photo I didn’t think to take and wish I could share with you now.

And if you will allow me to insert a mini-sermon here: Never hesitate to give what you can. The Lord can multiply it in the heart of the receiver until it fills every crevice with gratitude.

I deluged our visitors’ ears with more information than they likely wanted or needed; they listened politely and even asked a few questions. It felt delightful to unload all that was rabbiting around in my brain from the last two days.

Like this: In the last month, Tarica had complained about her eyes. Her vision would blur, and she couldn’t see for a while. When I had mentioned this to the PA, she said it was likely seizure activity, a simple partial seizure that didn’t spread to affect more of her brain. Her seizures have always affected her vision. In fact, Tarica told us once it’s how she knows she’s going to have a seizure: She stops seeing.

As I was speaking, Tarica said, “My eyes are blurry now, Mom.”

I looked at the event button. Should I push it? But what if it wasn’t a seizure?

Feeling self-conscious, I stepped outside the room in search of a nurse. None was in sight. Sheepishly, I pressed the call button.

When the nurse came in, I explained what had happened. She said to push the event button for any future episodes. As if I expected any other answer. Why had I bothered asking?

While our guests were with us, we received two more visitors that made Tarica’s eyes shine. Her anticipated canine friends were no sooner in the room than they were crowding Cassondra, who drew her skirt about her, rejecting their attention.

“I don’t know why it is,” she said, “that I can be in a group of dog-lovers, and the dogs always find me.”

The Labrador Retrievers, one yellow, one black, cheerfully unsuppressed, soon moved on, and once Tarica recovered from her initial shyness, she petted them.

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After our visitors—human and canine—left, the hours dragged. Nothing was planned for Saturday or Sunday, beyond waiting for a few hoped-for seizures. We opened another gift, played a few games, read a few books.

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In his daily round, the doctor said, “Her seizures travel so fast within her brain, it will be difficult to determine the starting point. Ideally, it would be nice to see three to five more seizures, but we may have to settle for what we have. General anesthesia tends to suppress seizure activity, which is why we use it only if absolutely necessary. We are fortunate to have gotten the seizures we did.”

“What about the seizure cluster down on floor two?” I asked. “Will you be able to use that?”

“Maybe, maybe not. The battery-powered EEG is often not as clear as it should be.”

After he left, I thought about his words, piecing them with other information I had been collecting.

If general anesthesia generally suppresses seizures, then her four seizures last night were unusual.

I had decided, going into this hospital stay, that if anything out of the ordinary happened, I was going to attribute it to God. Why not see God in the unusual? Dare I call the unusual not a coincidence but a miracle? Of course I could, no matter what others might call it. God makes even the commonplace a miracle. Look at the unfolding of a crocus, the first squall of a newborn, the sinner’s prayer of repentance. Ordinary events, all of them, and extraordinary miracles, all in one.

If I couldn’t lay claim to miracles in Room EP4 at Children’s Hospital of Pittsburgh, then I had no business praying to the God Who provided them.

And if I was looking for miracles, I didn’t have to search long. Seizing in Phase One is in itself worth celebrating. Several nurses told me that many patients who seize daily at home won’t have a single seizure during a two-week hospital stay. “The parents can’t believe it.”

I would claim that miracle, too, the miracle of seizures.

And not only seizures, but perfectly timed ones, as well.

Did you know it usually takes until the sixth or seventh day of Phase One to capture a seizure while hooked up to that machine for the SPECT scan? The patient has to seize on a weekday between the hours of seven and three, and seizures are not that easy to schedule.

Sometime over the weekend, the doctor told me, “We have the hardest test behind us. You’re on the downhill stretch now.”

I did not know, when Tarica had that seizure just before one o’clock on Friday afternoon, the second day of her stay, that a miracle was happening, but I knew it now—and my heart nearly burst with thanksgiving. I wished I could personally thank everyone who was praying for us. If only they could stand here and see the miracles happen.

I didn’t want to be anywhere else in the world at the moment. I had a front-row seat, and I was afraid to blink, for fear of missing something.

Tarica had no seizures that day, and it took her until after ten to fall asleep. With her constant fidgeting, I felt as if I had been on a trampoline all day, but though my senses were battered, my heart was quiet.

God was at work. I could rest in Him.

A Sneak Peek at the Ending

I’ve been wrestling over what to post here.

Part of me, the storyteller part of me, wants to share the story as it happened, saving the best part for last, allowing the miracle to soak in rather than drenching you with it.

But many of you have faithfully prayed for us, and you deserve to know that your prayers have been more than answered.

As I write this, I’m sitting at my dining room table, watching the birds crowding the feeder. Upstairs, a little girl sleeps in her own bed.

We are home.

Our ten days shrank to six, because Tarica’s seizures happened at the right time and the doctors were able to collect enough information to release her. Tarica’s doctor called it “very uncommon.”

We serve a God of the uncommon and miraculous, and my heart is saturated with gratitude and praise.

Isn’t this amazing? Rejoice with me, with us. God has been so good.

I’ll still tell you the story, because there are many moments of grace in the details and I want to share them with you.

One shadow spreads itself over my joy. We have been given a miracle, but many still wait for theirs. I’m thinking especially of Juliann, a reader who left a comment last week about her twin baby boys in the NICU. I don’t know Juliann personally, but a few of my friends are friends of hers. Juliann is still waiting for a miracle. One of her sons is not doing well, and they are waiting now for some test results.

Will you pray for Juliann’s babies?

Our God has yet to run out of miracles.

A Brief Update

We are entering day six of our hospital stay. Tarica is sleeping as I write this, and I hope she stays asleep for a long time. She has a PET scan at 3:30 this afternoon and won’t be able to eat or drink until sometime after that. The more hours she sleeps through her fast, the easier it will be.

Behind us are five days of weariness and wonder. Although we hit a few bumps in the road, God has been clearly directing our course. Our prayers, your prayers have been heard and answered. It gives me goosebumps just thinking about it.  I can’t wait to tell you all about it.

But it’s a long story, still to be fully lived and written—and of course, I want to tell it properly, without spoiling all the surprises now. Here at the hospital, I barely have five uninterrupted minutes to think, much less write. Although Tarica is doing very well, she is still only five and needs almost constant attention and supervision. This quiet time in the morning is my only break, if I can wake up enough to enjoy it.

God has been so good to us. Thank you for your prayers.

I’ll be back with the beginning of the story sometime soon.

In Which Our Faith Is Strengthened by Unexpected Visitors

Read In Which Our Faith Is Strengthened by a Friend first.

* * *

Throughout Saturday afternoon, I kept checking the two fifties to make sure they hadn’t disappeared. Every time, they were still there. Every time, I was amazed all over again.

Several hours after the mail came, an unfamiliar car pulled in the drive. Jenica bolted for the door, curiosity flapping in the breeze behind her, followed by Tarica. Linford went after them, more slowly.

I was putting some laundry away upstairs, and by the time I peeked out a window, the car was already empty. Probably Jehovah’s Witnesses, I thought. Whoever had come was standing on the porch out of my sight. I gave in and went downstairs.

Linford met me on my way to the door. “You need to come out here,” he said, an odd look on his face.

I stepped outside and saw the most unexpected people on our porch. Remember the doctor that took x-rays of Tarica’s elbow? I called him “almost a friend.” Well, I was wrong. It takes more than almost-friendship to show up on a Saturday afternoon with what they did.

I looked from Dr. Chris and his wife, April, to the basket on the porch. The girls were already rummaging through it, pulling out treasures and exclaiming over them. The basket held chips, granola bars, travel games, a lap desk with coloring pages, crayons, fruit snacks, and caramel popcorn.

“It’s for your trips to and from Pittsburgh.” Dr. Chris pulled an envelope out of the basket and handed it to me.

I tucked it under my arm and groped for words of thanks. I’ve said this before, and I’ll say it again: It’s humbling to receive. We don’t deserve such generosity, such thoughtfulness, and if I cry at all these days, it is tears of incredulous joy.

We thanked them. We talked, of epilepsy, of Christmas. We thanked them again. They left.

“I can’t believe they did this,” I said to Linford as we looked over the basket.

“What will you do with it?” he asked.

“Save it. For Pittsburgh,” I said. “It’s why it was given, and I want to honor that.”

Back in my kitchen, I remembered the envelope still tucked under my arm. When I pulled it out, I noticed its curious fatness. I tore it open and found a Christmas card. I opened the card and—

“Linford,” I said, “you need to see this.”

The card held $200 in cash and a $50 gift card for Sheetz, a common gas station in our area.

I swallowed hard. My chest felt constricted, as if the breath had been slammed out of me. “I can’t believe this,” I whispered around the tightness.

Above all that we ask or think. 

I groped for words of thanks, knowing it’s not enough, knowing, too, that He understands.

* * *

I tell you this story because I don’t want to forget it. Sometime in the future, when I feel like God is ignoring our distress, when the darkness is thick on every side, when it seems as if epilepsy has swallowed us whole—I want to come back and read this story of God’s extravagant provision.

If He could do it once, He can do it again.

He will do it again.

Lord, I believe; help thou mine unbelief.

In Which Our Faith Is Strengthened by a Friend

Read In Which Our Faith Is Strengthened by a Stranger first.

* * *

When I went through the mail this past Saturday, I was pleased to see a package from a writer friend of mine. I had recently edited her latest project, an informal compilation of stories, and she had promised to send me a copy when it was completed.

As usual, she had included other interesting pieces and the latest issue of the magazine she edits; getting a package from her is as much fun as Christmas. All this stuff to read when I should have been doing the dishes—it was a temptation worth yielding to, so I did. Because the words absorbed my attention, I didn’t see the money until I was hastily scrambling the papers together before going back to my pots and pans. Two bills fluttered out of the stack onto the table.

I froze. Blinked. Sure enough, they were still there. Two fifties. One hundred dollars.

God had covered the remaining $99.24.

Wherefore didst thou doubt, Stephanie? 

The money, my friend said, was payment for the editing I did for her in the last six months or so.

The timing, I thought, was God’s alone.

* * *

I sat, ignoring the dishes, holding the money, trembling inside.

My friend had included an accounting of the projects I had edited for her and the payment for each. Twenty dollars for this one, twenty-five for that one, and so on, for a total of ninety-five dollars. She had then added five dollars, marked it “Christmas gift,” and made it one hundred dollars even.

Her generosity had turned payment for services rendered into a miracle. Had she given only what she owed me, it would have been $4.24 short of our need. Details, insignificant and inconsequential, perhaps—after all, we could afford to pay $4.24 toward a medical bill—but my God is the King of Insignificant Details, and nothing is too small for His attention.

It shook me to my core.

Generosity begats generosity, and we had already been so blessed. Perhaps I could use some of this money to buy birthday gifts (very belated or very early, depending on how you looked at it) for my sisters. Both of them had frequently helped us with their time and resources during the last year. In February, one of them was taking off work for the entire ten days Tarica would be in the hospital so she would be available, either to help my mom take care of Micah or else to come out to Pittsburgh and assist me with Tarica.

It humbled me to always be the recipient. Perhaps I could find a special gift for them, an inadequate but heartfelt expression of my gratitude. I had wanted to buy them birthday gifts earlier in the year, but money for such extras had been and would continue to be scarce. But this—I could not hoard this generosity. Surely we could spare a little. I’d see what Linford said about it.

I returned to my dishes, still astounded by God’s attention to detail.

But the King of Insignificant Details is also King of Exceeding Abundantly, and He wasn’t finished.

Come back tomorrow for the next installment of grace.

In Which Our Faith Is Strengthened by a Stranger

“Did you pay that bloodwork bill?” Linford asked.

“No, not yet,” I said, resisting the urge to make a face. Or maybe I did make a face. Sometimes I don’t resist the urge.

Linford normally paid the bills, an arrangement that suited me. Bookkeeping bored me enough that I tended to put it off, and procrastination and bill paying do not peacefully coexist. But medical bills required at least one phone call to negotiate our self-pay discount. Linford was on the road all day with his job as an appliance repairman, in and out of cell service, in and out of customers’ homes. Since he could not easily make the calls during business hours, the responsibility became reluctantly mine.

“Just put it on a credit card,” Linford said. “I’ll figure something out by the time the bill is due.”

We had grown accustomed to bloodwork bills for two and three hundred dollars. Tarica’s anti-epilepsy drugs required periodic blood tests to ensure that the drugs were not damaging her body. But Tarica had recently been put on Depakote, which required more extensive testing. This last bill of $856.05 had dropped both our jaws.

The discount would bring it to $599.24. Not much, compared to a hospital stay, but we didn’t have an extra $600 sitting in the checking account. We aren’t poor—anyone with enough food to eat, enough clothes to wear, and a solid roof overhead has abundant wealth. What we don’t have is a lot of extra cash. However, each month we paid our credit card balances in full, and somehow, surprisingly, we always had enough to cover the additional medical bills.

Once more, we would charge it in faith.

* * *

Linford looked at his paperwork before jumping out of his truck. This job was an LG dishwasher that wasn’t draining. He grabbed his tool bag and clipboard and followed the sidewalk curving up to the rancher’s recessed front door. A fluffy white dog rushed at him across the lawn, yapping hysterically.

A grey-haired man in his 60s or 70s came to the door. He stooped to hush the dog, saying as he straightened, “I don’t want my wife to wake up.”

Wife? Linford looked around and saw a woman sleeping in a hospital bed in the middle of the living room.

“She has Alzheimer’s,” the homeowner, whose name was Gregory, said as he led the way to the kitchen. “Diagnosed sixteen years ago, and she’s been dying one cell at a time the last six.” His voice was matter-of-fact in the manner of one who has long ago stopped looking for pity.

“I’m sorry to hear that,” Linford said. “May God bless you as you care for her.”

The dishwasher was complicated. Linford had to uninstall it to reach the drain pump, and as he worked, the two men talked. A younger woman and her daughter stopped by briefly. After they left, Gregory said, “That was my daughter-in-law. Between her and my other daughter-in-law, there is a crisis every day, a flat tire, a headache, and I tell them to calm down, it’s not Alzheimer’s, it’s not cancer.” He paused before explaining. “Two years ago, I had cancer, the scariest kind, and I should be dead. But the Lord healed me, and here I am.”

“I needed to hear this right now,” Linford said as he did something unexplainable in the guts of the dishwasher. “Our five-year-old daughter has epilepsy. Her seizures aren’t controlled by medication, and she might be going for brain surgery in the future.” He looked up at Gregory standing by the kitchen counter. “It’s good to know that someone else is facing difficulties with courage.”

The job took nearly three-quarters of an hour. The two of them continued talking, exchanging pieces of their lives as strangers do when thrown together in close quarters. When the dishwasher was finally reinstalled, it hummed and drained as a well-behaved dishwasher should. Linford filled out the paperwork and handed the bill to Gregory.

When Gregory returned to the kitchen, he held a check and a bank envelope in his hand. He held out both to Linford. “Jesus of Nazareth is a healer. I feel like I’m supposed to give this to you.”

Linford looked at the envelope, at the money inside it, and said, “This is not why I told you my story.”

“I know it isn’t. Take it and use it and God bless you.”

Back in his truck, Linford pulled out the money and counted the bills unsteadily. Twenty-five twenties. Five hundred dollars.

Through the hands of a stranger, the Lord had provided.

* * *

This gift left $99.24 for us to cover. We could do it.

Except the windows of heaven were still flung open. God wasn’t yet finished pouring out His grace.

I’ll tell you more tomorrow.

How Can I Be Thankful When I’m Hurting?

I wrote this a few years ago. In reading it now, I find that what applied to miscarriage also applies to epilepsy. Except…I’m still going through the motions of thanking God from the rubble. Far easier to write of it than to do it.

* * *

It took years—and the loss of three babies—for me to realize this simple truth: I deserve nothing. Not the children I desire, the salvation I need, the house I want, the husband I love. I don’t deserve it, have no right to expect it.

I love King David’s words in 1 Chronicles 29:14: “But who am I, and what is my people…? for all things come of thee, and of thine own have we given thee.” All that I am and own and claim is God’s, granted to me because He loves me.

This truth changed my life. I now hold what is dear to me with open hands, knowing it is all a gift. Gone are the fists clenched tightly around what is mine, the fists I dared to raise to God in my grief. I hold my gifts lightly, savoring each moment, for I know they can swiftly disappear.

Strange as it may sound, I can thank God for miscarriage. Thanksgiving doesn’t mean I’m glad my babies died. Thanksgiving means I am grateful to God for the lessons miscarriage taught me and for His faithful care of me. God never failed me. My own shattered expectations caused my pain. As I went through the motions of thanking God from the rubble of my dreams, I found that, over time, I became thankful. I found that God was bigger than my pain.

Once, I believed motherhood was mine to claim, but God showed me it was His to bestow. I do not know what the future holds, but as I sift through the pieces of the past, I find the faithfulness of God over and over again. Even when my tears fall into my open, emptied hands, I have a Father Who cares for me and for all mothers who weep for their children.