As we approach March, we are coming up on a one-year anniversary; one-year seizure free. As a mom, I have pretty much stopped celebrating these seizure free milestones. As a matter of fact, I don’t even know what day in March Bella’s last seizure was.
You see, this April marks 20 years since Bella’s very first seizure. It was Tuesday, April 21, 1998, just after 8am. I remember that morning so clearly. I remember many moments of that week. We were out of state, in Arizona, visiting my parents and younger sister, who had come to visit.
Tuesday morning, my oldest daughter, Mallorie was holding Bella while I made her breakfast. Bella was nine months old. Mal said in a scared voice, “Mom. There’s something wrong with the baby.” As I took her from Mal, I noticed that her eyes and head were turned to her left, as far as they could go. She was not responding. My sister called 911 as my mom tried to help me wake the baby up. This lasted at least 5 minutes.
To make a long story short, I’ll skip over how Mom and I didn’t eat or drink for hours as we sat in the ER watching a sleeping baby after she’d had a CT scan. I’ll skip over how as she was transferred to a children’s hospital she had a second seizure, and then six more that night. I will leave out the details of my sleepless, foodless days and nights those next few days, as I consumed medical details about the brain, and watched as Bella went through a number of tests, and continued to have two to three seizures each day, despite strong doses of two anti-seizure meds.
What I want to focus on is that first day we saw her regular pediatrician back home. She was released from the Phoenix children’s hospital Sunday morning. She and I took a plane back home, while her dad and my mom drove the other three girls home. Sunday, she had no seizures. Her dad and I were convinced this was a fluke thing. There was something in the air, something in Arizona. She was fine.
Monday morning, she had an emergency appointment with her pediatrician, who had known my family of four girls since before Bella was born. He was very detail oriented. He had spoken with me, and with the nurses in the hospital in Arizona every day since she had been admitted. He was anxious to see us in person.
Sunday night, we had Bella sleep in our bed, so we could watch her. I felt relieved. I felt like we’d been through a rough patch. We had a tough week, but we were in the clear now. All was good.
After I showered early Monday morning, I put on a nice outfit, as if I were going to a business meeting. I did my hair and makeup. I think I wanted to show our doctor that I was fine; we were fine. We’d had a hiccup, but we were ready to move forward.
As the pediatrician entered the exam room, he looked at us with eyes wide open. I remember hearing some shock in his voice as he said something about how he’d expected us to look more disheveled. I sat up straight and looked as confident as I could. I tried to show that we were strong, maybe we’d overreacted, but all was good now. I was ready to go back to life as I knew it.
I was in denial.
Bella had another seizure that day. She was admitted to the hospital back home, in Las Vegas. She spent another week there. She continued to have two to three seizures each day for the next few weeks, until she finally reached therapeutic levels of two anti-seizure meds.
Over the course of this 20 years, Bella has had many ups and downs. She has gone over two years with no seizures twice, and she went four and half years without any one time. During these seizure free times, she has still taken a load of medications. The epilepsy has never gone away. I know many people who can’t go one day without seizures, and so I feel guilty for whining about this.
The point is, though, that I realize that I never feel 100% secure. Even on my best days, there is a nagging thought that this nasty epilepsy thing could show its colors at any given moment. Am I stealing some sense of peace from myself, from my family? Yes. I know that I am. I see it as a form of protection. If I let my wall down all the way, I will lose my balance when that wave of the unknown knocks her/us down again. In order to stand strong, I must be ready for the storm. I must know that the storm may come again.
While looking for an appropriate photo for this piece, I found one (of many) pictures of Bella sleeping with one of her big sisters, Angelina. Notice how she is holding Ang’s hand, and how Ang has her arm around Bella. All of her sisters and her dad feel the same way that I do: to protect her from anything that comes her way. We lost our sense of security twenty years ago, April 21. I am pretty sure I will never feel so free again.