One day shortly after my daughter Bethany’s second birthday it dawned on me that she was not recovering from a recent bout with the stomach bug.
She would seem to feel better for a few days, but then would suddenly just out of the blue begin vomiting again. She spent most of her days vomiting, whining and holding her hand over her forehead. Then one day she began losing her balance and falling.
My husband and I decided that a visit to the emergency room was in order. The emergency room doctor couldn’t really find anything wrong with her, but he suspected and diagnosed her with a mild case of the West Nile Virus. He told us to let it run its course for a week or two.
When after a couple of weeks had passed and it became apparent that Bethany was still not feeling any better, we made an appointment with our primary care doctor.
As soon as our primary care doctor saw Bethany’s condition she ordered a CT scan of her brain and made an emergency appointment for her to see a pediatrician at a small hospital in a nearby city. We knew that the need for a brain scan was not good. This was the first time we feared that Bethany might have a brain tumor.
The pediatrician confirmed the need for a CT scan which when completed confirmed our worst fears. Bethany had a very large mass in her cerebellum. Upon finding out, I dissolved into a crumpled and crying mess. My husband was uncharacteristically speechless.
Arrangements were immediately made for Bethany to be transported to a larger teaching hospital for brain surgery. Her condition was life threatening. There was a very good chance that she might not even survive the ambulance ride. I so desperately wanted our other children to say goodbye to her just in case she did not survive the trip or the surgery. Thankfully, our babysitter agreed to quickly bring them to the doctor’s office to say their goodbyes.
During the surgery a 7 cm. pylocytic astrocytoma had been removed from our precious baby’s brain. It was not malignant but would have been 100% fatal if it had not been removed. We were so relieved! We naively thought that Bethany’s life threatening ordeal was now over!
Tragically, Bethany went on to experience any and every life threatening complication associated with brain surgery. Her surgical wound began to leak spinal fluid necessitating the need for a shunt. When the shunt was invaded by a colony of meningitis bacteria, it needed to be removed. But since she still had life threatening hydrocephalus a temporary external shunt was installed.
The treatments for all these complications were pure physical torture for Bethany. She had tubes snaked up through her spinal column without the benefit of anesthesia several times to the drain her spinal fluid into bags. She endured numerous spinal taps and blood draws. Stitches and staples were put in and taken out over and over again without the use of anesthesia.
Then one night Bethany had a tonic clonic seizure. A new MRI revealed that her brain had fallen, tearing blood vessels along with it. This caused a massive stroke. Her brain was now hemorrhaging in one area, while in another area blood clots had formed.
Finally, after a very lengthy hospital stay, Bethany was well enough to go home where she began the process of learning how to sit, stand, and walk all over again.
My Bethany has suffered things unimaginable.
She has suffered above and beyond what any human being should ever be required to endure.
Through it all, she has never once complained because sadly, suffering is all Bethany really remembers. Suffering is her normal way of life.
Bethany has suffered with refractory and debilitating seizures for most of her life!
She has multiple disabilities including autism and extreme developmental delays.
She is weak on her right side. She is partially blind and she has occasional aggressive and violent outbursts.
Yet, with each and every setback Bethany has experienced, she has come right back up fighting for and striving to claim the happy and fulfilled life that she deserves.
My Bethany is one tough cookie.
She’s a fighter.
She’s a survivor.
She’s the bravest person I know.
She is my hero.
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Story written by: Sylvia Phillips
This story appeared first on Real Imprints.