When I was pregnant with Gabrielle…
I never asked for an infant with a brain malformation who would begin seizing at the age of 6 months.
I never expressed a desire for a baby who would undergo 5 brain surgeries before the ripe old age of 3 years.
I never requested a child with hemiplegia and developmental delays.
I did not sign up for a kid who would require daily medications, exercises, and orthotic devices.
I prayed for a perfectly healthy baby, as I had so many times before; a rosy-cheeked infant with a hearty cry, who would thrive and develop normally.
But sometimes God gives us exactly what we need instead of what we desire.
He has our very best interests at heart in spite of the way it may first appear or seem.
He yearns to mold and shape us, to draw us closer to Him.
On October 13, 2006 I received a beautiful baby girl who appeared perfect in every way.
She had ten fingers and ten toes.
I took my pretty little pink bundle home, completely unprepared for the lessons God had in store for me.
Now I was a church goer at this point, even called myself a Christian, and I had a fairly decent understanding of the basic tenants of scripture.
I was familiar with Ephesians 2:8 back then…
“For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast.”
Yet intellectually knowing what the scripture means… is leagues apart from living the truth of those words.
I guess I viewed God as a vending machine of sorts. If I prayed, performed good works, and avoided sin, my life’s desires would be fulfilled.
I was essentially earning tickets through good behavior, which I believed, could then be used to place future orders.
I wanted to please God to earn His favor, not because I loved and trusted Him.
This was the beginning of my journey into real faith:
It was April 30th, 2007. I was celebrating my 34th birthday with a little quiet time at the library. I was nursing my fifth child under a light blanket while attempting to plan out a homeschool unit study for my two oldest children. I felt her small body go limp, but assumed she had fallen asleep nursing. When I removed the blanket to burp her, she was lying flacid in my arms with eyes rolled back and slightly twitching. She didn’t appear to be breathing and was unresponsive. I shot out of my chair and ran to the police officer stationed at the front desk. My eyes screamed of terror though I don’t recall alarm ever escaping from my mouth. I was shaking and explained through tears the situation. He immediately dispatched an ambulance to our location. In the five minutes it took for EMS to arrive she was already behaving in a more reassuring manor. I opted to drive her to the hospital myself, picking up my mother-in-law on the way. Gabrielle was seen in the emergency room and monitored throughout the night. The doctors felt it was an episode of reflux and probably not a seizure. She was the picture of health, they reasoned.
The episodes continued days later and we were quickly referred to a pediatric neurologist by our family physician.
I recognized this as the beginning of a trial, and rationalized that surely I would come out on top with good behavior. If I proved myself obedient and faithful, all would turn out just fine.
Isn’t that what we teach the kids in Sunday School?
We brought our daughter to the specialist’s office and I was confident he would tell us it was just reflux. I was certain he would instruct me to take my healthy baby back home and enjoy her. I was convinced she would be given a clean bill of health, just as the doctors in the ER had done only a few weeks earlier. I was shocked when the specialist confirmed they were seizures and instructed us to start her on medication right away.
He handed us prescriptions for 3 separate anticonvulsants, told us to do our research, and recommended we start her on the one we felt most comfortable with. Our heads spun when we read the many side effects of the medications and our minds became troubled. We just did not have peace about this. We contacted the elders of our church and they came to pray over our sweet angel, asking for healing in the name of Jesus. We filled one of the prescriptions at CVS and hoped we would never need to crack the bottle open; that it would remain forevermore, on our mantel collecting dust, as a reminder of God’s faithfulness.
During this time I did not have the courage to pray God’s will for my life, and certainly not for my daughter’s. I was afraid to give Him options other than those to my liking. I can recall actually taking offense when someone would pray His will over my daughter’s life. I resented the fact that they were seemingly giving Him permission to let the suffering continue.
Days passed and we were forced to open the bottle, squirting medication into our defenseless child’s mouth, that would knock her out completely. She slept so much and ate so little, that her weight began to drop and her eyes appeared sunken. I questioned what we were doing wrong that our child had to endure this. I looked for ways I could improve as a Christian; yearning to earn His grace and favor. I sought a recipe to follow, a formula, a way to control how God answers prayer.
Just tell me what I need to do. I’ll do anything! I begged.
The seizures worsened and the dosages increased. We scheduled an MRI to search for a possible cause. The sedation meds coupled with the drugs Gabby already had on board, made her extremely sick. She vomited for 24 hours. She kept nothing down. She was listless and practically unresponsive. I sobbed as I held her tiny body in the bathtub, washing it clean.
I told God I could not go on like this. It was unbearable to watch my baby suffer . I begged him to let me take her place somehow. I wanted a place free from sickness and suffering for both of us. This was just too much.
I telephoned the doctor and shared my concerns. They reassured me that things would get better once the meds left her system; I just needed to wait things out. And by the way, the nurse shared, Gabby’s MRI is normal.
This was good news!
Or was it?
A normal MRI ruled out many devastating causes of epilepsy but it also meant that my child would most likely not be a surgical candidate. If a structural abnormality can not be identified, seizure freedom becomes unlikely. This was the first time I recall being confused about how to pray for my little girl, because I no longer knew what to ask for, what was best.
I reminded myself that God knows what is in my heart and He knows I want the very best possible outcome for my daughter. I just kept telling myself that He loves her more than I am even capable of. But did I believe it?
We decided to have a “Yea God! Party” at the local pizza joint and praise God for all the things it wasn’t.
It wasn’t a tumor.
It wasn’t a vascular malformation.
It wasn’t tuberous sclerosis.
My little angel, seated in the carseat beside me, continued to seize throughout the celebration, unaware that I was stuffing myself full of pizza.
The time had come for a second opinion at Duke University Medical Center. Our local neurologist made all the arrangements. We headed into the building carrying our daughter and an envelope full of data, hopeful these doctors would give us answers. It didn’t take more than a quick glance at the MRI images for this doctor to realize the radiologist had made a very grave error when reading our daughter’s scan. It was in fact abnormal. There was clearly an area of cortical dysplasia in our child’s right frontal lobe. This is a congenital anomaly in which the neurons do not properly migrate, resulting in abnormalities of the cerebral cortex which generate seizures. These areas of abnormal cortex can occur in small, discrete parts of the brain or involve very large areas. Obviously the smaller, more localized the area, the better the prognosis.
The doctor looked at me that day, after I had exhausted all questions, and attempted to give me a shred of hope. He shared that children with focal cortical dysplasia often make great surgical candidates, and they may even go on to complete college. I held onto that hope with all I had.
We scheduled a second MRI to take a closer look at Gabby’s right frontal lobe. We needed to determine if the cortical dysplasia was localized enough to make her a surgical candidate. She tolerated the sedation much better this time. I left Duke that afternoon, satisfied that we had captured the necessary images. I missed my lunchtime meal, but that did not explain the churning in my stomach. I was consumed with worry.
So as I drove my groggy girl home, I wondered when we would receive the results, and if our child would be a surgical candidate. It was already very apparent that she wasn’t responding to medication. If these seizures continued, she would never move forward developmentally. She would never walk, talk, or do anything independently…and I wasn’t so sure I could live with that.
I was familiar with the following scripture…
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”- Phillipians 4:6
and I was definitely making my requests known to God…
but I was having trouble with the “be anxious for nothing” part.
I was having trouble because I did not fully trust Him.
My thoughts were suddenly interrupted when a giant tractor trailer broke through the median onto my side of the highway. It began to strike the cars in front of me and fire instantly erupted. I didn’t have time to stop! I accepted death at that moment and also reflected on how silly I had been to worry about Gabrielle’s future, not knowing that we would die together today. I don’t recall steering or braking, but my car veered to the right, and we missed the fiery truck by 5 feet. We came to a stop in a grass field beside the highway and the tractor trailer exploded seconds later.
An eery silence followed.
The Christian music that resonated from my speakers suddenly seemed louder, like the soundtrack from a movie, prompting me to tears. I watched people running frantically, crying, rubbing their eyes in disbelief, cell phones plastered to their ears.
I was shaking once again, and turned to face the precious life that had been spared in the rear seat of my car. She had slept through it all.
It was as if God spoke to me that day, though I never heard an audible voice. Sometimes words aren’t necessary, I guess.
Be still, Kelly, and know that I am God. None of this is meaningless. It is all happening according to my plan.
Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
I should have died that day. We should have died that day. He had kept us alive for a reason, a purpose, it was not our time.
I felt so renewed after this. The anxiety was lifted. Perhaps this God was worthy of my love and trust.
I shared my story of God’s protection with anyone who would listen and waited for the MRI results.
What exactly was His plan??
To be continued…
