Updated: Jul 2, 2020
| This is the 238th story of Our Life Logs |
I grew up in Live Oak, a small town in North Florida an hour south of Georgia. It was a great a place to grow up in the '80s. It is where I have all my childhood memories, where I met my husband, and where we go to visit our parents. My husband Chad and I didn’t stay in Live Oak after we graduated from high school—yes, we were high school sweethearts. We left to go to college and never returned. We ended up living in Gainesville, Florida where we would raise two sons until they were teenagers.
It’s funny thinking about it now, but I’ve always thought I was in control. I am a fixer. A mother. If someone needed something, I helped them achieve it. When my oldest son had issues in elementary school with reading, I took control of that situation. I had him tested when the school refused to do it and got him exactly what he needed to be successful. Little did I know that his teenage years would send our family on an Odyssey, one of courage and defeat, weakness and perseverance, one he didn’t ask for, and one I couldn’t fix.
It was 2016. My boys were out of school for the summer, so they were hanging around the house. At 11:30 am, my husband and I had just spoken to the boys as our usual routine was we check in with each other throughout the day. Everything seemed normal. The boys had pizza delivered to our home, and Chad and I were going to have lunch together like usual. We worked next door to each other and often enjoyed our lunchtime together like most couples have date nights.
So, as we were on our way to lunch, both our phones rang at the same time. Chad had a police officer on the phone with him, and I had a paramedic. I cannot begin to describe the amount of panic I felt at that moment.
The paramedic explained to me that our oldest child, Cade, who was 14 at the time, had a seizure. What? Seizure? I didn’t understand what he was saying to me. No one in our family has Epilepsy, and our children had never had any problems of this kind. Regardless—we needed to get home.
It seemed like the 20-minute drive home took an hour. We hit every red light, got behind every slow vehicle in Alachua County, and finally arrived to see Cade up and walking around. One thing I can say about Cade is that he is a trooper, a fighter, and he never wants to upset us or be a hindrance. But even though walking around when we got there, we could tell he wasn’t right. His words were distorted, his pupils enlarged, and his gait was slanted. In the background of all this was Seth, Cade’s younger brother, our 11-year-old son, silently watching and waiting for us.
What happened? The kids were playing a video game in Cade’s room. Cade was standing with his knee on his bed, and he fell into the bearded dragon’s 50-gallon glass tank. The tanks shattered, slicing his back. When he hit the ground and began convulsing, Seth tried talking to him, asking if he was okay. When Cade didn’t respond, Seth took action and called 911 on his cell phone. He didn’t know our home address so while on the phone with 911 he walked out to the mailbox and grabbed a piece of mail. Seth made sure that his brother was safe on the ground where he couldn’t hurt himself, and simply waited for help to arrive. In all my memories of the past two years, Seth never cried, never freaked out. He was there for every seizure that hit Cade. Always calm, always there to get him help was Seth. Still, I cannot imagine what had went through his 11-year-old mind as he watched his older brother—the one he looked up to as a role model—sprawl around helplessly.
In the following months, the control I always thought I had on my life began to dissolve, reality warped into an illusion. I did what I could. I fought the medical system for Cade to make sure he had the best care and medical team we could get. But still, Cade had to struggle with a new normal that he didn’t want. While I pleaded and overexerted myself, I saw Seth in my peripheral vision. He handled every incident with calm and poise—a trait that I only then began to learn from.
On October 7, 2016, my husband and kids went to the local high school football game, while I was three hours away at my best friend’s wedding rehearsal dinner.
During the very last play of the game, GHS scored their winning touchdown. The crowd went wild. Cade hurled his arms up in the air to form the universal touchdown signal—and then froze. Like a statue off their pedestal, he plummeted down the concrete stairs of the stadium and landed in full convulsions. This is when I got a call from the emergency room to come home immediately.
I drove through hurricane force winds to get to my son. It sounds like a country song, but it was my life at that moment. Hurricane Matthew was hitting the west coast of Florida on that day, and it was going to have to swallow me whole to get me off the road.
When I got to the ER, Cade was already admitted to pediatric ICU, tied to a bed, completely out of it, and yet, still fighting the restraints. As I stood there looking at my baby, my 14-year-old, 6’1”, 190-pound precious son, the truth set in. The Epilepsy is never going away. It didn’t matter if the doctors had just told me 13 hours before that the low dose of Keppra he was on was working fine, that he seemed like he was doing well, that I believed going away for the weekend would be okay because we had control of his Epilepsy. I stood there numb, almost in tears, talking to him, stroking his forehead, vowing to do everything in my power to fix this—even though I knew it was a lie. In that moment, I began to understand. I didn’t have control of anything.
The coming weeks forced me to carve this new truth into my heart—though I fought it tooth and nail for a while. I hounded Cade’s doctors to increase his Epilepsy medication, only to find out my son would have six more seizures at home. He would miss almost a month of school to be on brain rest, and I would practically have a nervous breakdown, lose my job, and move my family to a new state because the loss of control would drive me mad.
I do believe everything happens for a reason. A month after the wedding (I did not get to attend), I cried my eyes out to my newly-married friend over the phone. In between deep breaths, I told my friend that Keppra just made my son angry, agitated, and experience horrible mood swings. He was depressed, withdrawing, and I was struggling. I expressed to her that the doctors weren’t taking me serious about Cade’s condition, and he continued to have seizures. Things were not getting better.
Finally, my friend asked for my insurance information with a phone call in mind. She began researching neurologists in the Tampa Bay area where she lives. She went to Dr. Zumna’s office and pleaded my case. Now, Dr. Zumna is an adult neurologist, and she doesn’t usually see patients under 16 years old, but something touched her heart that day while talking to my friend. It took two weeks and one after-hours phone call to get his Epilepsy under control.