Everything changed on March 7, 2007, when my precious, perfect, lovable, feisty 15-month-old second daughter was diagnosed with primary generalized epilepsy. I remember standing in the tiny doctor’s office room, holding Bella and swaying as we waited for the neurologist to give us the results of the sleep-deprived EEG. Valerie was sick with a cold that day, so instead of being at kindergarten, she was crouched on the floor angry about something.
The doctor came in. She’s a stylish, beautiful Lebanese woman with a slight accent and a direct manner. She said, “Mr. and Mrs. Schrock, I’ve looked at the results of the EEG and your daughter has epilepsy.” I was sucker punched in the gut. It felt like an out-of-body experience. I immediately burst into tears. (I have tears in my eyes right now, writing this.) Every hope and dream I had for my child felt like it had been sucked right out of the room. Anthony tried to hug me but I didn’t want any part of that. I blamed him and me for giving our daughter such a crappy bunch of genes.
The doctor went on to explain that Bella would need to take daily medication to control her seizures, that we’d need to carry the emergency medicine Diastat with us everywhere and have it at daycare too. Tears were still dripping down my face. The doctor seemed taken aback by my reaction. She even said, “Oh, Mrs. Schrock, please don’t cry.” Then she asked us if we had any questions. How can a mother have questions when she can’t even speak?
For the next few weeks, I was afraid to be alone with Bella. (Shameful, I know.) I was angry at the world: at the mothers with healthy kids, at the doctor for giving me the bad news, at myself for drinking that half a beer one time during Bella’s pregnancy, which I was sure caused this “defect.” It took me weeks to be able to talk about Bella’s epilepsy without crying. I was a mess.
When I was finally able to talk about it, I really talked about it. Bella and I would be at the library, she’d meet another toddler and start playing, and the mom might comment on something cute Bella did or said or wore. And I’d find a way to mention she had epilepsy. I got a lot of startled looks from people, kind of like “why are you telling me this?” I think I was so eager to tell everyone because I was desperate to find someone else who had the same experience, someone who would say “I know what you’re going through, it’s awful, but you will get through it. I did.”
I finally found some parents like that. (And Amy Cornell and Tammy Orahood, if you’re reading–thank you for being you.) I started going to therapy to learn how to deal with it. I started talking to God and praying. Anthony and I scheduled weekly dates where we could have fun with each other and not obsess over our daughter. I took up running and sometimes I imagine I’m stomping on epilepsy’s face as I go along. And I learned that we are so lucky that Bella’s seizures are well controlled with medication. (Even if her meds cost $714 a month a while ago. For real.)
The point of all this is to say that I’m a changed woman since that day in 2007. I know that life can change in an instant, that life can take your dreams and smash them to bits on the doctor’s office floor. But I survived. I built new dreams. And Bella will prevail because that’s the kind of person she is.
Now we dance around the kitchen blasting Lady Gaga’s Born This Way:
I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way
Don’t hide yourself in regret
Just love yourself and you’re set
I’m on the right track, baby
I was born this way, yeah