This is a team I never wanted to be on: “The Epilepsy Team.” I didn’t know anyone with epilepsy. I had no idea what it really meant except that seizures were a part of the program. When our middle child, Olivia, was diagnosed with epilepsy, my husband and I were in complete denial, unable to believe our healthy, lively 7-year-old was suddenly seizing numerous times a day.
Looking back, I remember wondering how this could happen. We had no family history of epilepsy. She hadn’t been sick. In fact, she was our healthiest child, rarely at the pediatrician. Yet here we were in the children’s hospital watching her seize over and over unable to help her. We felt hopeless.
Eventually, Olivia was released from the hospital on anticonvulsant medication, but sadly it did little to stop the daily seizures she was experiencing. In a matter of 12 months, Olivia went through 11 medications, many being used simultaneously, yet still found no relief from uncontrolled seizures.
Our family’s life had completely changed by this point. Olivia needed to be schooled at home. We rarely left the house with her, because she was either too tired, seizing too much, or suffering from other side effects of medication and frequent seizures. The first year was the worst year of our lives.
In the beginning, I naively thought if someone had epilepsy, they simply took medication and controlled the seizures — simple as that. The reality was far different. Olivia’s decline opened my eyes.
Sometimes, epilepsy can be controlled by medication; other times, it cannot. Sometimes the underlying cause is known; other times it is idiopathic. Some people have seizures from birth, brain injury, other illnesses or who knows what. Even in 2018, epilepsy remains a mysterious and misunderstood disease.
Ultimately, the cause of Olivia’s epilepsy was found. Our medical team offered us a course of action that could help our daughter, three years after our nightmare began. That was the good news. The bad news was pretty bad.
Olivia was diagnosed with a very rare degenerative condition that was causing her decline and mounting seizures. We were told the only known treatment was to remove a large section of her brain that was affected with this condition. Apparently, this surgery could significantly reduce or eliminate the seizures and stop the decline she was experiencing physically and cognitively. The down side of the surgery was that she would become physically paralyzed on the entire left side of her body, some of which could be helped in rehabilitation, but other parts would not likely respond. My husband and I were sickened and devastated, but by this point, Olivia was seizing nearly 100 times a day. She had no life, no chance of a future. She was literally seizing to death before our eyes.
I always say we were given a choice to save Olivia’s life — not a good choice, but A choice. And having A choice, is better than having no choice at all. I know too many parents who weren’t given any choice. As maddening and unthinkable as the surgery was, it was an opportunity to give Olivia a life. A real life, not the one she was living.
We all agreed to proceed with the recommended treatment, and at the age of 10, she went into brain surgery at Miami Children’s Hospital and woke up eight hours later with a significant portion of her brain removed, half paralyzed, partially blind and seizure-free. Our new life began the moment Olivia opened her eyes in the recovery room and tried to smile. Years of rehabilitation, tutoring and medical rollercoasters continued to be a part of our life, but we were focused on improvement, not waiting for the next seizure.
Olivia grew into the miracle we prayed for. Her outcome is beyond what we ever expected in those early, dark years. She is 19 years old now, recently completed her first year at Florida Gulf Coast University, where she lives on her own, being a regular college kid, just like she wanted. Olivia balances the extra needs she still experiences with a unique perspective, courage and determination.
Our family’s journey with epilepsy is not the norm, but that’s just it — with epilepsy, there is no norm. While there are definable types of seizures, the way each person experiences those seizures can be quite different. Over the years, I’ve learned a lot about this crazy thing called epilepsy. Strangely, most of it has nothing to do with neurology or even seizures. It has to do with how you handle it all. The approach you take to whatever you’re experiencing is the real key to managing epilepsy or any other hurdle in your path.
For those who are impacted by epilepsy, the Epilepsy Foundation of Florida (efof.org) opened its Naples Epilepsy Resource Center in the Greater Naples YMCA. Support groups, wellness activities and personal connections can be found by stopping in or calling Dan Rosenfeld at 239-778-8316.
— Stephanie Davis is a motivational speaker, author and co-founder of FamilySupportVillage.org, an inspiring community offering hope, resources and honest talk on the rollercoaster journey of Extra Needs Parenting. Follow the Village on Instagram @inspire.familysupportvillage