My precious little girl came into this world with a tiny cleft lip, wide set eyes, and a divot in her spine. As she grew, her nose seemed to endlessly drip. “All nothing to worry about” her doctors told me. “She’s developing normally.”
A few months before her fifth birthday, my daughter routinely complained of her feet falling asleep. A pediatric neurosurgeon recommended a spine MRI to further evaluate the divot. Then, in what appeared to be an afterthought, the doctor asked, “Has she ever had a brain MRI?”
Suddenly I felt sick to my stomach as I reluctantly answered, “No.”
We left the office with orders for both a spine and brain MRI, but not without the doctor telling us she believed both tests would return normal results. My heart, however, told a very different story.
Nothing could have prepared me for what I was about to hear.
The neurosurgeon gave us the chilling details as my husband and I stared at the MRI images of our second child’s brain. The neurosurgeon told us that our daughter had the rarest form of a neural tube defect called a basal encephalocele. Then, she gently explained that typically encephaloceles are detected prior to or immediately after birth, and discovering one in a five year old child was a complete shock to her.
As I softly cried, she handed me a tissue and continued to explain the diagnosis in laymen’s terms:
“During fetal development, the base of your daughter’s skull, inside her head, behind her eyes, did not fully close. As a result, part of her brain and other important structures slipped through this gap.”
My head was spinning as I asked the question, “What other structures?”
The doctor took a deep breath and replied, “Her hypothalamus, pituitary gland, optic chiasm, optic nerves and corpus callosum.”
We sat in silence. Then I heard my husband’s voice say, “Can you fix this?”
The car ride home that day was dreadfully quiet. That night in the shower, I sobbed for what seemed like an eternity, and through my tears, I prayed to anyone who would listen. Unfortunately, I believed no one heard me.
The summer quickly turned into a blur of diagnostic procedures. One test revealed that my daughter’s chronic runny nose was actually cerebral spinal fluid leaking from a hole in her brain.
“This is very dangerous,” the doctor explained. “Bacteria have direct access to her brain through this hole. It is a miracle, that she has never caught meningitis.”
I drove home that day pondering miracles. This time I didn’t scoff.
All the doctors agreed that brain surgery was our only option. Due to the rarity of our daughter’s case, our neurosurgeon sought opinions from her colleagues. All told her of a pediatric neurosurgeon who had created his own technique to venture into this area of the brain. His technique was so complex that our surgeons practiced it on a cadaver so our little girl wouldn’t be their guinea pig.
The news spread rapidly and our circle of support grew wider. Phone calls and emails poured in. I learned of entire houses of worship praying for our family.
Regardless of religions, their messages were all the same:
“Have faith, trust in a higher power and believe.”
This soon became my mantra.
Unexpectedly, another miracle occurred. Just weeks before my daughter’s operation, the neurosurgeon who had developed the technique, elected to fly to our city and assist our doctors with her surgery. I wept tears of joy while trying to understand why a man we had never met chose to help my little girl. It was at that moment when I began to believe in angels.
I cannot fully explain what happened to me next. I felt physically lighter as though a weight had been lifted off my shoulders. At the same time, I drew strength from a source within. Suddenly, without any reservations, I had complete faith my daughter’s surgeons and trusted that they were guided by a higher power. I prayed to my daughter’s angels and wholly believed that my daughter herself was a miracle.
After five long months of waiting, my daughter’s surgery day arrived. For the entire thirteen-hour operation, I was calm. Never before had I felt so weightless and more completely engulfed by love. Without a doubt, I am certain that I experienced the power of prayer.
I spent the next ten days surrounded by very ill children in the neurosurgery ward. Every night, I prayed to each one of their angels and knew this time, I was heard.
************************************************************
Michele Ackerman, M.A., B.S. is the co-author of “Someone Who Cares: A Guide to Hiring an In-Home Caregiver.” She is a contributing author to two books on Home Health Care: “The Paraprofessionals in Home Health and Long Term Care-Training Modules for Working with Older Adults” and “Homemaker/Health Aide 5th Edition - Challenges and Innovations in Home Care.”
Her personal essay, “The Red Herring” will be featured in the upcoming anthology: "Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child." (Wyatt-Mackenzie, June, 2007).
She has published articles in Caring Magazine, Chicago Parent, and The Pioneer Press Newspaper. In addition, she has over a decade of successful grant-writing experience as a Director at a non-profit organization in Chicago, IL.
