Will he live or will he die? Part 2

(This post is part 2 of my son’s battle with meningitis).

New hospital, same story.

A story of faith for a sick child

Hour after hour, day after day, I smiled at Ethan, I tried to tickle him. I blew bubbles and played with puppets. All the while I pleaded–

“Please come back to me, buddy. Just one smile? Can you laugh?”

Nothing.

Was he even there anymore? Or had I lost Ethan forever?

As I paced the hospital room, I remembered something critical. A year before, shortly after Ethan’s birth, as is customary in my faith, I stood before my congregation and pronounced a blessing upon him:

…You will have a special relationship with your older brother…

It seemed odd at the time. But not now. That could be it–the key to bringing him back. His older three-year-old brother, Corban.

Ethan's big brother. A story of faith.

“Amber,” I said. “We need to bring Corban here.”

She flinched in surprise. “Corban?”

“Yes. It’ll be good for him.”

She shook her head. “It’s risky. If it’s contagious…”

I hesitated. Having one child this sick was enough. But if Corban contracted it too…

“But,” I said, “we’ve got to.”

“Let’s do a video chat.”

I opened my laptop and dialed Amber, saying a silent prayer. Corban’s face appeared on my screen.

Nothing.

“Ethan. Who’s that?”

No reaction.

“Is that your brother?”

His eyes focused on Corban. This could be it.

“Corban, look!” I said. I grabbed a toy car and drove it down Ethan’s chest, crashing into the camera. Corban laughed.

And Ethan smiled.

I grinned.

“Bring him here,” I said to Amber.

An hour later, Amber knocked at the door. “Are you ready?”

“Just a minute,” I said.

I lay Ethan beside me and climbed out of the bed.

“Ethan,” I said. “Ethan, wake up. Somebody’s here to see you.”

I tapped his cheek. His eyes flickered and focused on me.

“You ready buddy? Somebody’s here to see you.” I turned toward the door. “Come in.”

My heart raced. I tightened my fists, then loosened them. Tightened, then loosened.

Come on. Come on.

Corban entered. “Baby!” He ran toward his little brother.

Corban jumped into the bed and wrapped his little brother in a bear hug, nearly pulling out the kid’s IV. Ethan returned the gesture, grinning.

Ethan hugging his brother

My eyes moistened. Thank you God.

For the next several days, the saintly nurses spent 30 minutes disinfecting each and every toy in the playroom down the hall so Ethan and Corban could play together. Then, as soon as we left, they’d do it all over again for the kids that would come later that day. Day after day after day.

God bless those angels.

With Corban to guide his little brother toward health, Ethan progressed. Bits and pieces of his personality returned. But I was left to wonder whether he’d return broken.

Perhaps what terrified me most was the seizures. Or at least they looked like seizures. His eyes rolled in the back of his head, he blinked like he was fighting a sudden ice-cream headache, then returned to normal.

They performed an EEG…

Ethan's EEG

Ethan EEG

and an MRI…

Ethan's MRI

As we waited for test results, they had the pediatric neurologist visit with Ethan.

Okay. So, I didn’t like the guy. He swaggered in, wearing thick spicy cologne (I think it was Arrogance by Calvin Cline). His shoes clicked against the floor like high heels and had enough shine to blind at midnight. He sat on the only chair in the room while his acolytes surrounded him, sporting white coats and clipboards. He crossed his legs and leaned back in the chair, clicking his pen.

Click-click. Click-click.

“That’s not a seizure,” he said.

“Okay. What is it?”

“It’s nothing.”

Click-click. Click-click.

“It’s nothing?”

“Yeah. Nothing. It’s a tick. It’s a blink. It’s nothing.”

I tightened my jaw. “So you’re telling me nothing is abnormal about my son rolling his eyes in the back of his head and blinking like he has a headache.”

He shrugged. “It’s nothing.”

Yeah. Thanks for nothing, punk face.

Again, I went for a jog. I had to clear my mind. I had to escape from undiagnosed illnesses and mystic symptoms. I had to find time to pray alone without distractions.

But even then, I felt that God had abandoned me.

Why? Why when I needed him, did he refuse to listen? Why did my prayers remain unanswered?

I returned to the hospital, sweating and in turmoil. I climbed the stairs, turned the corner and almost ran into Amber.

“There you are,” she said. Something was wrong, I could tell from her expression.

“What?” I said.

“Test results came back.”

My heart raced. I braced for an impact.

“Nothing,” she said.

“Nothing?”

“They…they couldn’t find anything.”

Nothing. It was worse than something. I saw something happening. That blinking eye-rolling thing was not normal.

And yet the tests said everything was normal.

Well, those same tests said that Ethan was fine a week ago. And he definitely wasn’t fine.

Ethan in the hospital: a story of faith

I raked my fingers through my hair.

“What do you need?” she asked. “Let me help you.”

I knew what I wanted. I wanted a diagnosis. I wanted to know what was wrong with my kid. I wanted to figure this thing out so we could treat it and so my baby boy could come back to me.

But I knew that wasn’t going to happen. At least, not anytime soon.

Instead, I did the cowardly thing. I looked to escape.

“I need a nap,” I said.

“Okay.”

On the floor below Ethan, the hospital provided a couple rooms for the families of those who were sick. Corban slept in a separate bed alone, while Grandma rested in another across the room. I crept into the room and gently moved him to the other side.

But before I lay down, I got on my knees and prayed.

But why bother? In the last week, I’d silently shouted so many prayers to heaven with little to show for it. A cloud of darkness surrounded me, one that could not be penetrated.

Where was God? Why didn’t He at least give me peace?

And then I knew. I was too busy telling God what to do–heal my son. Bring him back to me. I don’t care what Your plans are, I want my son back.

But maybe that wasn’t part of His plan.

The thought terrified me. And yet, I knew my answer. God wouldn’t listen until I was ready to listen.

For the first time in a week, I said a prayer that reached the heavens–I leave it in Your hands. If You must take my Son…

I trust You.

The clouds parted. My chest warmed and peace circulated through my veins. This was right—soooooo right. This was where God needed me to be.

But did I mean it?

Contemplative, I climbed into bed and pulled the covers over my chest. This could mean the end, couldn’t it? I may lose him. I’m willing. Or maybe I’m not. How would I survive? If I felt like this, maybe I could.

But how could I?

As I lay sleepless, my resolve weakened. The clouds began to return. The peace I felt darkened. It was happening all over again.

A hand touched my back. Corban’s hand. Like a Father to a struggling child, he patted my back, over and over.

Pat pat pat. Pat pat pat. Pat pat pat.

The action seemed too mature to be coming from a three-year-old. Unless, One of Eternal age directed that hand.

The peace returned and I drifted into sleep.

After that experience, there were many ups and several more downs.

IMG_7472

IMG_7399

He remained at the hospital for a few more days and his “seizures” continued for several months. He had to relearn how to crawl and walk. Yet, there’s been no permanent damage to my boy.

In fact, he’s rebounded quite nicely.

My silly son ethan

What was the diagnosis? I don’t know. Nothing was conclusive except this: It was hell. It was heaven. It was everything in between. As promised by God, I miss those days where I spent hours with my son resting in my arms. But at least there’s one thing that will not change–the lesson I learned: peace will come when we submit to His will.

Now go do some good.

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7 thoughts on “Will he live or will he die? Part 2

  1. Pingback: Will he live or die? A story of faith. | Dustin Fife

  2. What a terrifying experience–there is nothing like feeling helpless as a parent, to no be able to do anything except wait and watch. And pray. I had something similar when one of my sons was run over by a car. Despite his head being completely bloodshot, swelled and bruised, and the tread marks on his chest, the test results all came back as …nothing. Today He’s 43, healthy as a horse. Go figure. At first I blamed God–how could a loving god let such a thing happen? It took a while for me to get past that, and to be thankful that my son did not have any lasting damage. Sometimes it takes time to see the tree instead of the forest.

    • My goodness! I can’t imagine that. Glad to hear he pulled through alright.

      And you’re right–it’s easy to question how God can allow such suffering and still be loving. But God’s ways are not our own and when we submit, we see that.

      Thanks for your thoughts, grannysu 🙂

  3. My son was hospitalized as an infant, though not for as long or with as frightening of symptoms, but it was extremely traumatic. I’m so glad you were able to come out of this experience with greater faith and trust in God.

  4. Oh my! You have me in tears.
    It’s a very scary experience.
    I admire your faith and your courage to leave the outcome in God’s hands. I’m pretty sure it was hard.

    I think all of us have to learn to listen rather than to dictate on God, but it’s very hard because in my case, it’s hard to give up on something that matters to you and you truly love.

    Thank you for sharing. It reminded me that I should let things be with God and to humble myself by listening to him rather than dictating him what to do.

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