Our Real and Present Help

I need to write today.

I share our story, just one sliver from this week, as a declaration of God’s character and a reminder that He ultimately redeems all things in our lives for our good and His glory. He takes all the messy, human emotions . . . the fear, the anger, the helplessness, the sadness, the disappointment . . . and draws us to Him in moments of desperation.

“My flesh and my heart my fail, but God is the strength of my heart and my portion forever . . . But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works” (Psalm 73:26, 28 ESV).

“God is our refuge and strength, a very present help in trouble” (Psalm 46:1 ESV).

There are times in life when we must face our deepest fears. We have no choice. In those moments, when I’m feeling most afraid and completely powerless, I feel like my flesh and my heart may fail me. Literally.

And in those moments when things come to a crawl and the world seems to stop, held in an eery suspense, there is only one place where I fix my gaze. On Him. I feel near to God, as though tucked up next to Him. My refuge.

It’s no secret that our youngest is dependent on the miracles of modern medicine to sustain his life. A small catheter tucked in the back of his head continuously pumps building spinal fluid off of his brain, draining the fluid into his abdominal cavity via a tube. This life-saving device is known as a shunt. It’s nothing short of miraculous. But we are keenly aware of the inherit risk when the human body is dependent on a device to carry out its typical functions. When his shunt malfunctions, fluid continues to build in his head . . . leading to a serious medical emergency. These are facts that stay tucked in the background of everyday life, so that we are both aware and able to function without debilitating levels of fear and anxiety.

When Johnnie complains of a headache, we take note. Now, something else you need to know about him is that this brave boy of ours is one of the toughest cookies that I know. His threshold for pain and building pressure in his head is extremely high, which is very dangerous.

When Johnnie woke up a few nights ago and said his neck hurt, we gave him some medicine, settled him back in for the night, and he dosed off to sleep. When he mentioned a headache the next morning, a maddening dance between “Is it?” or “Isn’t it?” began. It’s the most anxiety-producing kind of observation and second-guessing. His tolerance for pain will trick you into thinking it’s sinus pressure or even a pulled neck muscle bothering him, rather than the life-threatening medical emergency that it is. In fact, after a trip to the doctor that day he was still singing and dancing when we got home.

However, by that evening there were several other indicators that something wasn’t right so we headed to the ER. As we made our way to the hospital, he went into a seizure quite different from his typical seizures. Unresponsive, arms seized up, eyes rolled back. I couldn’t even tell if he was breathing at first. Terrifying.

And time stood still.

We immediately pulled over and tried to help him, while calling 911. He finally started tracking me again with his eyes. Then slowly started responding to my questions. Can I just say that watching your child in danger or pain while you are powerless to do anything about it is one of the most gut-wrenching experiences?

To fully convey the ups and downs of that day, I need to tell you that once Johnnie stopped seizing, he seemed perfectly fine the entire time we rode in the ambulance. He was uncomfortable, but chatty and full of wonder and questions, simply taking it all in. This is the first time that I think he can really remember the experience of riding in an ambulance.

I’m going to be as real and honest as I can be right now. Riding in that ambulance on the way to the hospital, the dialogue in my head went something like this:

“Lord, I’m terrified right now. I’m pretty sure Johnnie’s shunt is not working. Please help him. We can’t.”
“Why? I just can’t believe this. What are the odds that it would this would happen again?”
“Will he be ok? Will this change him?”
“Is he going to have more seizures?”
“I’m wholly disappointed, Lord, you knew how much I wanted to go be with my family this Christmas. Changed plans again, really?”
“I love this boy so. Why him, Lord?”
“You alone have the power to heal his body. Set my heart on You and You alone.”
“Why can’t we catch a break?”
“Father, he’s yours.”

The thoughts ran through my head, one after another. The prayers passed from my heart to His Throne. And then, they ran out. There was nothing left to be said.

When the words run out and the last prayer has been offered, I wait. Gaze fixed on Him.

Upon entering the ER, we began answering questions, reassuring our son, and undergoing tests. Johnnie was the bravest that I’ve ever seen him that night. He handled each probe, each test, each question, with such strength even in the midst of his pain. As we concluded the CT scan, he let out a horrifying scream as his body seized up from the pain and pressure, then his body went limp.

And time stood still once again.

I honestly thought we’d lost him right there on that table. As they checked his pulse and countless others poured into the room to help, my husband stepped into the chaos and boldly approached the Throne in prayer once again. I often retreat, powerless to help my son.

My eyes turn upward.

It’s a waiting like none other. In the suspense of the moment, God ultimately steps into the silence. He will act. We know that. One way or another, in complete control and with all authority, He steps into these moments and acts.

Truth be told, my mind doesn’t have many words in these moments. But my whole being is fully fixed on Him. Tucked up next to Him, feeling as though my heart and flesh may fail.

I’m surrendered, at His mercy . . . powerless.

My son is on the altar, fully surrendered . . . powerless.

As I see my son’s eyes track my way and hear his precious but small, wavering voice, praise rises up from deep within me. The next 12 hours are a feat of waiting on doctors, tests, results, answers, surgeons, operating rooms. There’s plenty of time to confront fears, ponder the unknown, and lift up humble yet bold prayers, as the echo of beeping machines fills the chaotic silence.

Up until the moment we rolled our son to the operating room door, I was simply unable to cry. Rather, I was focused on what needed to be done. But as that precious boy was rolled into that operating room with the “big doors and bright lights,” looking so brave and scared at the same time, waving goodbye, the emotion of the last couple of days finally caught up with me. I leaned into my husband as he wrapped his arms around me, knowing that much bigger hands and arms were already holding me. It’s the constant reminder that our son’s life is ever and always in the Master’s hands.

He alone is the Creator. The Physician. The Healer. The Sustainer.

And so we always look to Him.

And wait.

As our son now recovers at home, it will take some time to untangle all of the emotion of the last few days. We’ve walked this road before. And we know that we will walk this road again.

Oh, but let me be a living, breathing, walking testimony of God’s sustaining power. I long to be one who will always tell of all the works of the Lord, just as the psalmist did.

My friend, if you are staring fear in the face and life as you’ve known it has come to a standstill, fix your gaze on Him. He is a refuge. I long for you to know that the Lord is a very real and present help.

Look to Him.

He will act.

Tuck yourself up next to Him.

And wait.