God’s Astounding Sovereignty in Broken Bodies and Hurting Hearts

Hindsight is a funny thing.

Situations are clearer with a little distance between the event and the present. Sometimes God grants us the gift of peeling back the curtain to see part of what He is doing as the trials unfold, and sometimes the confusion lasts for years before clarity is accessible. Sometimes we live entire lifetimes having to trust that all the turmoil will end in a flash of light as His children open our eyes in eternity.

Two weeks ago, we checked into the hospital, ready for our second attempt at a major, life changing spinal surgery for our son. Six weeks prior, moments before he was rolled into the operating room, massive blisters formed, covering his feet and leg, preventing the surgery but not a week long hospital stay.

The risks of the spinal surgery were more than we could truly comprehend. Our church members signed up for slots to pray in thirty minute intervals for the 14 plus hours he would be in the operation and recovery.

People around the world were praying for him. Children in international group homes, who had similar physical disabilities and yet no families or surgeons for themselves, sent videos cheering him on.

I wept for them and the difficulties they endure. And I wept at the realization that only a stack of adoption documents with our signatures separated CJ from their same fates.

Why does God allow such suffering for so many, and only some are granted the love of a family? When the world is flooded with professing Christians, why are we content to allow children to endure preventable agony?

Why do we assume God has not called us to adoption, without bothering to take the time to ask Him if He has?

I wrestled with these thoughts as Chris and I meandered through the hallways of the children’s hospital for hours, agonizing between each small update on CJ’s surgery.

His surgery was successful despite several unforeseen complications, which were corrected under our surgeons’ skillful hands. Given the list of both life-long problems and potentially fatal situations, CJ rolled out of the OR late that night relatively unscathed. His orthopedic surgeon even marveled that his blood loss was half of what a child typically has in this procedure.

So many people had prayed for that exact thing.

Despite our exhaustion, I knew Jesus had sat with us in the waiting room while also standing amidst the doctors, guiding their every movement and sustaining CJ’s tiny body.

Most children remain intubated and heavily sedated for a couple of days after a surgery this complex. When the nurses led us to him, he was already hollering orders and bribing the nurses for his favorite tacos! He kept those nurses RUNNING their entire shifts. 😉 The next few days were brutal as the teams of specialists coordinated to keep his severe pain levels under control. We began to see signs of confusion in him, which we tucked away in the back of our minds, but mostly attributed to the powerful medications he was receiving around the clock.

When he was released from the PICU to a regular floor, he began PT and OT, and seemed to be progressing well.

One evening later on, he spiked a fever and suddenly went downhill. He was diagnosed with pleural effusion, RSV, and a contracted gallbladder full of stones.  He could no longer keep down food or sips of water. Every med possible was switched to IV. His bladder also stopped functioning appropriately.

He occasionally had short periods of feeling ok, in which he started pulling pranks on his favorite nurses. One of his favorite nurses, who he lovingly named “Miss Honey,” is also a bit of a prankster and taught him how to hide a small syringe of water under his blanket and spray the nurses when they got close enough. His bright smile and precious spirit made him a favorite patient on the floor.

Six days after surgery, late at night, his body stopped functioning appropriately and they had to call a sepsis alert and the rapid response team. It took them some time, but finally were able to get him stable again.

General surgeons started rounding along with his usual neurosurgeon and orthopedic surgeon. Everyone was trying to buy time before CJ’s gallbladder had to come out. They told us they often see kids end up on long term ventilation or trachs with anesthesia so soon after majory surgeries. They threw every safe medication at him trying to avoid surgery at all cost, but nothing was working. His labs continued to trend downward.

A precious therapist began to see him daily. An adoptive mom herself and highly trained in trauma, she  worked hard to help regulate his almost 13 years of trauma on top of his current health crises. On her second visit, she came in asking which church we went to. It came as no surprise to God who orchestrates all things, but to our amazement, she had known our pastor for many, many years. CJ loved her and she earned his trust faster than most adults.

CJ learned to navigate moving and sitting up quickly. Within a few days, he was able to tolerate us transferring him to a wheelchair for several hours at a time.

One day as we helped him sit up, he immediately said he was dizzy- a new symptom. Within seconds, he was grabbing his head screaming in pain. His nurse was in the room and we all knew something was seriously wrong.

She ran out of the room to page the neurosurgeon who ordered a stat CT to check his shunt.

It was in the beginning phases of possibly failing, but not at an emergent level. Remember, we were attempting to avoid another surgery at all cost for his protection.

About an hour later, he presented as if in an absence seizure. He went from oriented and talking, to limp and staring into space. I attempted for about 10 seconds to wake him up before Chris started filming and I ran for his nurse.

She had the rapid response team and a crash cart beside his bed in less than two minutes. Nothing they did worked.

He would slightly wake for a moment, call out our names, and then fall back into a catatonic state.

That first round of seizure like-activity was the most fear I have ever felt in my entire life.

In the months leading up to his surgery, we knew death was the greatest risk. And it was a significant risk. Despite my attempts to not think about it, my mind occasionally wondered to what that would be like. Would I fall to my knees in grief? Scream? Would I beg God to revive him? Would He?

On my knees, gently shaking CJ’s unresponsive body and between my sobs begging him to wake up, I heard my most desperate prayer groan out of my mouth, “Oh God, HELP!”

When the team knew they had no more actions to take, his nurse yelled out for the other nurses to cover her patients, and she wheeled us back to CT herself- his tiny body sometimes limp, and sometimes posturing and shaking.

His widely open but unmoving eyes will haunt me for the rest of my life.

Jesus remains sovereign over all living things, but He used CJ’s nurse to save his life that day. Her rapid actions kept my baby alive.

He is the radiance of the glory of God and the exact imprint of His nature, and He upholds the universe by the word of His power.

Hebrews 1:3a

The CT confirmed his shunt and brain had changed from just 3 hours before. He was wheeled to the OR, still seizing.

I thought of the song CJ loves so much- Tear Off the Roof.

With all of my heart, I know that God is good. I have seen His goodness in the land of the living. (Psalm 27:13)  And I knew that if CJ left this land, God would somehow still be good. But my heart begged Jesus for a different way to continue to display His glory in CJ’s life.

He is the image of the invisible God, the firstborn of all creation. For by Him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities- all things were created through Him and for Him. And He is before all things, and in Him all things hold together.

Colossians 1:16
(emphasis my own)

We paced the waiting room alone- all of the other patients gone for the night.  My body refused to stop shaking and my mind raced when suddenly, our close friend and family doctor rounded the corner.

As soon as he heard the change in CJ, he left his practice for the day and began the four-hour drive to the children’s hospital. This man has sat in his medical office with me on some of the worst days of my life, whispered Scripture over me, and that night, he again pulled up a chair, comforting us in his quiet companionship.

God sat on His throne overseeing all of CJ’s complications, and yet He saw a scared father and devastated mother and sent the Church after them. His goodness knows no bounds.

Soon, the surgeon came to tell us that CJ’s shunt had begun to slip apart, but the surgery had been successful. In fact, he saved part of it to do research because he had never seen a shunt that looked anything like it. Now CJ carries a shunt that any neurosurgeon in our country can identify and treat, no matter where we are.

Not much later, our precious pastor arrived. Forever the kind shepherd of his flock and scared we would be alone if the worst happened, he came running to hold his sheep together in what could very easily been the worst day of our lives.

CJ woke up aware of who we were, although he still has no memory of that day. He immediately asked why our friend and pastor had not brought their children to come along to play!

The next day, during a therapy session, CJ’s body movements and personality changed. He asked for me to hug him, and then his body went limp, his eyes staring blankly ahead. The therapist called for immediate help as I carried his body to the bed.

His body began another round of seizure-activity. This time, in God’s sovereignty, one of his doctors “just happened” to be walking past his ICU room and came in directing the care.  I felt the therapist’s hand on my shoulder as I again leaned over CJ begging him to wake. Her prayers were quiet, almost inaudible, but they reached my ears and strengthened me.

The next days included one more mild episode (although we never completely lost him to the darkness that time) as well as more tests and medication changes. Since then, he has had no other similar episodes. The doctors are still somewhat divided on what exactly was happening.

He had two additional shunt surgeries in the days that followed, bringing the total to 4 surgeries in 12 days. Despite the risks compounding exponentially with each surgery, God graciously protected him.

And in a shocking turn of events, his gallbladder even calmed down, with no obvious reason as to why.

Once he had been stable for a couple of days, the team wholeheartedly agreed CJ needed to go home to reorient to the present and recover amongst his beloved siblings in a (relatively!) quiet environment.

Our first day home, we intended to stay home and catch up on desperately needed, uninterrupted sleep, but CJ begged to return to church. His people. The people he doesn’t even know prayed him through this whole ordeal.

Now we sit at home. My mind is slowly piecing together the details of this past two weeks. Things were at times swinging from good to horrible multiple times each hour. We are so physically exhausted from the constant wakeups and emergencies throughout the nights we were there, it has been difficult to see God’s movements as they happened.

With a small amount of hindsight under my belt, I see how God used so many things that were difficult for both our good and His glory, just as He promises to always do.

CJ recovered so quickly from the spinal surgery, if his gallbladder had not gone on the fritz, we would have been sent home. His shunt would have failed here, four hours away from the specialists he needed to stay alive. If God had not put the correct nurses on CJ’s case on the specific days he needed emergent care, I might be typing a different post entirely.

We can even look further back. Years ago, we transferred CJ’s care to this hospital, despite the inconvenient drive, knowing these were the best doctors we could find for his complex needs. We did not know it then, but God was already setting the stage to show His power.

And while I have no desire to ever relive a week like this ever again, God gave me a gift I neither wanted nor knew I needed.

He put my greatest, most horrifying fear directly in front of my face: losing one of my babies. And He showed me that even if the worst had happened or ever happens in the future, He will remain both seated on His holy, righteous throne, while also kneeling beside me in the agony, physically holding my imploding heart together.

I saw God respond to the prayers of His universal Church, His bride, like I have never seen before. They prayed when all I could do was groan. And although I have done nothing to deserve any good thing from Him, He answered, just like He promised He would always do.

God’s covenantal promises do not rely on us, but fully on His perfect faithfulness.

Today, before our schedules return to ballet classes and play dates, I sit in complete awe of this relational but mysterious God. I will never fully comprehend His power or how He orchestrates every joyful and painful event in this universe. I don’t know why some children die and others live. I don’t know why some kids are given a family and others suffer alone. But I know in my bones that He is using every detail of our lives for the good of those who love Him and for His glory.

The LORD is near to the brokenhearted and saves the crushed in spirit.

Psalm 34:18

Scripture is full of people begging God to move on their behalf. Just as we have seen on our short journey through the Old Testament on this very blog, He is both faithful in the present, and orchestrating the generations to fulfill His promise in completeness over time.

As CJ’s story is yet incomplete, so is yours and mine. God holds salvation in His hand and He pours it out freely on those who respond to Him in repentance and belief.

Turn your eyes to Him and meditate on this hope with me as we journey forward.

Hear, O LORD, when I cry aloud; be gracious to me and answer me! You have said, “Seek My face.” My heart says to You, “Your face, Lord, do I seek.” Hide not Your face from me. Turn not your servant away in anger, O You Who have been my help. Cast me not off; forsake me not, O God of my salvation!
For my father and mother have forsaken me, but the LORD will take me in. Teach me Your way, O LORD, and lead me on a level path because of my enemies. Give me not up to the will of my adversaries; for false witnesses have risen against me, and they breathe out violence.
I believe that I shall look upon the goodness of the LORD in the land of the living!
Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!

Psalm 27:7-14