(Then and Now for Chapter 13: Epilepsy Again)
This event changed our lives in many ways. It was the beginning of many ends.
It was the end of our hope that epilepsy was gone for good. It was the beginning of ending of my business as an artist. I temporarily lost faith in being able to balance living our lives fully and keeping Rose safe. I felt punished for focusing on anything else but her. It seemed like fate had slapped our hands for moving on. Epilepsy wanted our complete attention.
The part of the story that STILL baffles me is the timing. The seizure occurred at the exact worst time that day. If it had occurred an hour before, we both would have been home and gone straight to Rose’s school. If the seizure had occurred an hour later, her dad would have been at home, on stand-by, and I would have stayed to finish the first day of the show. No ambulance ride. No trauma for all involved.
It was the timing that made me feel cursed, damned, and unlucky. It seemed like a perfectly aimed shot at our sense of well-being. Like that seizure had waited until it could have the most impact on all of us. Could we not stand down for two hours? Couldn’t epilepsy let us get out of town? Must we be scared sentries every second? I had been lugging around that big, heavy bag-phone and wearing a beeper for three years. Why then?
I guess my puzzling about the timing may not seem helpful to you. Maybe I should focus on the importance of having the rescue medications at school. I could be going over the emergency bag contents. It may be better to include a list of step-by-step instructions in body positioning and safety protocol. You can find all that type of information in epilepsy manuals and pamphlets.
I wanted to share how it feels to be high-jacked by a disease. How it feels to be ambushed by a seizure. How the electrical terrorist shows up and ruins the best laid plans.
Why? Because YOU will feel these feelings, if you haven’t all ready. You will feel that epilepsy is an enemy attacking your child. You will feel hopeless and helpless. BUT you cannot share all these feelings with your child. The enemy is inside them. How would that feel? Your own little time-bomb inside you? No escape from it.
Even adults have trouble handling this mysterious disease. Children are not equipped to cope with such a complex problem as an enemy within. They cannot separate the disease from self.
I know this is heavy. Maybe you aren’t ready for this kind of raw honesty. When the smack down happens to you, if it happens, remember that Seizure Mama, Rose & Co. have been there before you and we are doing just fine now.
Rose went status at school and lived to tell the tale. Isn’t that every epilepsy parent’s nightmare?
You are not alone. We get it. Damn it!