A parent's journey in the sickness of a child.

I would like to share my heart with you about the events surrounding my son's battle with epilepsy, surgery and continuing recovery.

For nearly six years my little boy has battled this disease. During this time several people have told me that they felt God had assured them that Levi would be healed. As badly as I would have loved to have heard those words in my soul, I cannot say that I ever had God make that promise to me. Instead, all I could ever sense was a whisper in my soul that said, “Trust me.” Try as I might, I could not pray loud enough or long enough to force God’s promise. I fasted many days for my son to be healed, hoping to hear the reassuring voice of God promising his healing. And God was silent.

The early days of his sickness were the worst. I ate pounds of antacid tablets. I tried to bargain with God, to swap my life or my health for the life and health of my son, but it doesn’t work that way. I tried to “do more” for God. Hoping, I suppose, to buy God off--to purchase a healing through works. I begged and pleaded . I didn’t care if he healed my son spectacularly or quietly, but I wanted for him to be healed, and quickly.

God was and is under no obligation to promise me anything. Promises have been made through this ordeal, but they are promises from me not to me. Early on, I had to come to a place of submission. One night in 2006 I was sitting in the yard in one of my children’s swings, looking at the stars and pouring my grief out to God. I knew what he wanted me to say but I so did not want to say it. Finally, I prayed, “ Lord, you know what my will is. I want my son to be healed, to be whole… Nevertheless, not my will but yours be done. Regardless of what you choose to do, with your help, I will still follow you.” Then I wept, and I have wept that prayer many times since.

For about a year, God gave us a respite. Then the seizures returned with a vengeance. I was in Granite City, Illinois ready to leave on a missions trip to Mexico, but the trip fell apart at the last minute. A few hours later Levi went into a tonic-clonic seizure that lasted for half an hour. We wound up in Cardinal Glennon Children’s Hospital in St. Louis.

In February 2008 I posted a blog which read in part:

Lessons in faith are brutal.

"There is something I have never disclosed in my blogs or on my bio. I have a 2 year old son with a seizure disorder. We discovered the seizures when he was four months old and he has been on medication ever since.

"Have you ever watched in horror as your baby stopped breathing and turned ashen? Have you ever had your life turn upside down in a matter of hours? One morning you have four healthy children and by the next morning you are 100 miles from home with a child in ICU with problems you don't understand. I know some of you know exactly what I am talking about. In the last two years, he has been hospitalized twice. Both times were no less than terrifying.

"I used to have an erroneous vision of faith. I used visualize the trial if my faith with me being hunkered down between two rocks while the thunderstorm raged above me. My view has changed. I now see myself on a small ship with the hurricane looming on the horizon. The captains stands at the helm and tells me to climb into the crows nest. I don't want to be in the crows nest, but I go anyway. The storm rolls in, the waves get larger, the ship slides down one wave and up the next. Lightening flashes. The wind howls. Rain pelts my face without mercy. My knuckles turn white. I am soaked to the skin. I am sick and scared.

"I can either look at the storm or I can watch the captain.

"Eventually the storm subsides, perhaps it is over, perhaps it is just the eye of the hurricane passing over.

"To my surprise, I am still in the crow's nest.

"I have learned that you aren't pretty after your faith has been tried. It is okay to scream. It is okay to be scared. It is okay to have white knuckles and even ulcers.

"Peter walked on water only after he had been up all day and all night and was half scared out of his wits. God doesn't stretch us by having us do the things we know we can do. He stretches us by making us do more than we think we can.

"Right now the waves are just gentle swells. Perhaps the storm is subsiding. Perhaps it is just beginning, but I am learning to trust the captain."

That respite was in fact the eye of the storm. The seizures returned. Dr. Greg Sharp at Arkansas Children’s Hospital tried to help us manage them. Levi went from taking one medication, to two, then three. The third one had a bad side effect on his eyes and increased his eye pressure dangerously high. We discontinued that medicine and went to yet a fourth medicine.

Then, in 2011, an MRI showed that he had a condition called “cortical dysphasia” . Basically, he has a deformed brain, and this deformity was causing the seizures. The answer was brain surgery to remove a section of his left temporal lobe and much of the left hippocampus. Within days of the MRI findings, Arkansas Children’s hired an excellent pediatric neurosurgeon, Dr. Gregory Albert, from the Hospital for Sick Children in Ontario, Canada. This, it seems to me, was one of a series of small miracles.

Surgery was scheduled for the week of January 9, 2012. The surgery would occur in two phases. During the first, a section of Levi’s skull about the size of an adult’s hand was temporarily removed and a series of electrodes was placed on his brain. This would map both his seizure activity and any critical brain functions that might be located in the affected area. In 90% of people, this area of the brain controls much of the speech function. If the doctors got it wrong, surgery would result in a little boy who could neither speak nor understand speech. When the technicians brought their equipment into his room we realized that ACH had just purchased tens of thousands of dollars worth of equipment to improve the brain mapping process. The timing of all of this was another small miracle.

As Dr. Sharp performed the brain mapping, still another miracle (and answer to prayer) became evident. Levi’s speech area was not on the left side of his brain, at least not in any of the area near the surgery. The second thing that became apparent was that portions of his brain were experiencing near constant abnormal activity. Surgery was both possible and needed.

That Friday Dr. Albert, with the assistance of Dr. Sharp, removed the portions of Levi’s brain that were showing abnormal activity. A few hours, later my wife, Darla, was beside his bed in the ICU when he woke up, looked at her and said “Mama”. He was awake and he was talking.

As I write this we are approaching one month since his surgery. He has not had a seizure since the surgery. Admittedly, we are not completely out of the woods yet. He has some catching up to do, and we have began the process of reducing (hopefully weaning him off of) his medicine. This process may take a year or so to complete. We are still some distance from the doctors being able to declare him “cured” .

The big question is this: Why has my son endured all of this? I am still not sure. Was it to teach his mother and me the meaning of “trust”? Is it to teach us empathy for others? Is God teaching us to how to graciously receive help instead of always being the ones trying to give it? Is God’s purpose to teach my other children compassion, selflessness and responsibility? Was it the plan of God for this illness to lead us in paths we otherwise would not have known existed? Or did God choreograph an entire series of actions and reactions of which I am not even aware? I do not know why we have traveled this path, but I do know we have not walked it alone.

Friends, strangers, family and acquaintances nearly forgotten have rallied to our aid. Old friendships have been renewed. We have found new friendships in the strangest places. We have discovered friends who were not even Christians when we knew them years ago that are now standing with us in prayer, calling out our names in churches hundreds, sometimes thousands of miles away.

I do hope this journey has in some way been profitable to the Kingdom of God. I hope we have shown the love of Christ to someone who needed it. I hope we have demonstrated Christ’s strength during our weakness. I hope that our temporary suffering will somehow, someway yield eternal benefit in the life of at least one person.

I would be a hypocrite and a liar if I led you to believe that through this journey we have been the picture of serenity. There have been nights that we would lie in bed when no one else was around and sob and shake with grief. I have spent many midnights under the stars walking, pacing, talking to God, sobbing in grief for my little boy.

That God has heard my prayer all along, I am certain. That he has a grand design and plan for us all, I have no doubt. Seldom do I have a full understanding of what God is doing, for he is under no obligation to explain himself to me. Often I have no idea what he is up to.

I do know two things. First, I and my family belong to him, and, if we will let him, he will be glorified in us. Secondly, regardless of the path he lead us down, I can trust him.

Thank you for you love, your friendship and your continued prayers. May God bless all of you a hundred-fold for the kindness you have shown to us.

ADDENDUM 
1/15/2017
Today, five years after his surgery, he has not had a recurrence of any seizures and he is off all anti-seizure medications. He continues to recover from the setbacks caused by the epilepsy and side effects of his surgery. We are prayerfully hopeful that eventually his recovery will be complete, and we are extremely grateful to both God and the medical professionals used by God in his recovery thus far.