Our Journey With Epilepsy

My scariest experience as a parent was worrying that something was happening to my baby girl that just didn’t make sense. Just before her 9th birthday, her personality started to change and her behavior hit rock bottom. I felt like something terrible was happening to her. I would lay awake in bed and google how to know if my daughter had a mental illness—was I losing her? Her behavior wasn’t just “bad”, but violent and dangerous. I was afraid the police would show up at the front door and haul me off, thinking it was me causing the terrifying sounds of temper to shake our home…

I cried to much…

And I didn’t talk about it because I thought people would judge her. They could judge me all they wanted. They could tell me I was failing as a mother, but I didn’t want them to think anything bad about my daughter. She was/is my baby and this wasn’t like her. This wasn’t normal.

It was terrifying.

It was lonely.

But then, months later, she lost consciousness and wet herself. It took me a few moments for her to come awake and I was horrified.

Turns out my little girl has a seizure disorder—some form of epilepsy that we hadn't been aware of.

Suddenly, I learned that her personality shift and her behavior had to do with her epilepsy. She was never truly falling into a deep and restful sleep. I don’t even know how long it has been since she actually slept. She had been having seizure activity all through the night for months on end—always waking up, bed wetting, fear and confusion, sore muscles and worn out body. During the day she suffered focal and absent seizures that we missed.

How she ever managed to pass the third grade with all A’s is beyond me. How she ever managed to do so well at IStep and IRead blows my mind. How she was ever able to maintain such composure for months now, knowing that something was out of her control and doing her best to handle it, is beyond me.

It’s probably been a year since Lucy first looked at me with tears in her eyes, and said, “There’s something wrong with my brain, mommy. It’s doesn’t do what I want it to—it goes too fast and does whatever it wants.” Hearing her say that nearly made me come all done. I thought it was hopeless—that she just had some mental disorder—an illness that would be dark and scary and overwhelming.

But that wasn't it.

Today she sat down beside me and I looked at her and she smiled. “You’re gonna start medication,” I said. “It might not feel good for a while and it might be scary, but mommy and daddy are going to help you and take care of you. We will keep you safe. How does that make you feel?”

She shrugged. “I’m okay. Whatever helps me get better, I will do it.”

My word.

This girl.

She is amazing. She is beautiful. She is full of light and unconditional love. She is passionate and creative and wicked smart…

And she’s going to be okay.

She’s going to be okay.


1 comment

  1. She's going to be okay. You're going to be okay. Okay.