A Lot Can Happen in 30 Seconds...or Less

As a first time mother, raising a child is all new, no matter how much research I've done. Now throw epilepsy on top, and it's a whole new ball game of worry, cautiousness, resourcing, anxiety, and depression.

Aria was diagnosed at six weeks old with focal cortical dysplasia in the right hemisphere of her brain, and intractable epilepsy. That day is seared into my memory. It was 5 in the morning, my husband had just gotten home from work an hour before and gone to sleep. I had warmed a bottle, and like clock work, she woke up for it. She was calm, drinking her bottle, and then all of a sudden she stopped, her head turned left, mouth open, her body was stiff, and her arms bent up in fists, twitching.

It was only 5 seconds.

She went back to drinking her bottle like nothing happened.

I'd never witnessed a seizure before, all I knew about epilepsy was photosensitivity and gran mals. I knew something wasn't right. Panicking, I quickly looked up seizure symptoms on my phone, and got the pediatrician on-call on the phone. I was instructed to take her to the hospital immediately.

I had no idea what I was about to take on, or where it'd take us. Three out of the first six months of her life were spent in the hospital. I felt like my child was robbed from me. Though she was always happy, and not terribly behind developmentally, I still felt like my child was robbed, that I didn't get to see her full potential, and she didn't get to enjoy every moment to the fullest. Instead, I was torturing her with syringes and "nifty" medicine pacifiers or bottles, just trying to get her to take her medicine morning, noon, and night.

Despite 3 different medications, she quickly escalated to 60-80+ seizures a day, usually in clusters of 5, 15-30 second seizures. I quit my job to stay home and take care of her, as daycare had proven to be flop.

I was scared to do the dishes, fearing I'd turn around, and the next second she'd be having a seizure. The seizures didn't limit themselves to daylight hours. I was afraid to sleep, fearing she'd start clustering, and I wouldn't wake up. I would set my alarm for every five minutes to make sure she was okay.

I was consumed by epilepsy, charting everything, researching medications, causes, treatments, types of seizures, triggers, current studies, in search of an answer to help my baby. I didn't know how to cope with everything that just happened, but I knew there was no time to slow down, no time to stop. I had to learn everything I could about what's happening to Aria, I had to be able to keep up with what the doctors were saying, I had to advocate for my daughter, and I still haven't stopped; because a lot could happen in 30 seconds.

Over the past two years, Aria has been admitted to the hospital every 3-6 months for an extended period of time. Five medications, and 2 brain surgeries later, Aria's seizures have reduced to 1-2 every other night, or during naps. Daylight hours have become easier to get house work done, but a lot could happen in 30 seconds. Nights are less sleepless, but I find myself staying up to watch her until the wee hours, because a lot could happen in 30 seconds. It constantly looms over my shoulder. Every twitch, every gesture, every facial expression, every exclamation of excitement or woe, comes with, "are you about to have a seizure?"

A lot could happen in 30 seconds.