I want more late summer nights catching fireflies, playing flashlight tag and sitting by the fire. But it’s too risky, too much at stake. Sleep takes precedent.
I want real summer camp, running free with friends, getting messy and sweaty, collapsing on the couch at days end. But the heat, oh the heat and the chance that skills gained could be skills lost. Extended school year takes precedent.
I want a vacation filled with breakfast at Uncle Bills, ice cream at Springers, boardwalk fries and lemonade. But the Ketogenic Diet reins supreme.
I want to hop a flight to a far away destination, without worrying where the closest hospital is. But, Epilepsy.
Epilepsy doesn’t take a vacation even when you do. It doesn’t care that your nine year old just needs to be a kid. It’s there all the time. It’s there on vacation when you are applying sunscreen to go to the pool and bam a seizure. It’s there when you just want to grab a quick bite to eat, but you are confined to the scale, grams and fasting times. It’s there on hot days when you don’t dare leave the house without a cooling towel and tons of water. Epilepsy it’s there all the time, on vacation, summer days and nights, dictating your every move.
Each summer I go through this mix of emotions of what I want for Reagan and what she can both handle and what’s right for her. Maybe it’s that summer is my favorite, the things I want for her are what my childhood summers where filled with. Maybe it’s hearing other parents signing up kids for camps, eating ice cream for lunch or not worrying about a 90 degree day. Maybe it’s I’m a bit angry that she’s had two seizures (her seizures are long and ALWAYS require emergency meds) in the past three weeks, which is outside of her normal. Maybe, just maybe I want a break from all things Epilepsy.
For the past almost nine years every decision I’ve made revolves around Epilepsy. It’s draining, exhausting and frustrating. I want carefree normalcy, yet Epilepsy just will not allow it. I want a vacation from Epilepsy…and it wouldn’t hurt if it was on a tropical island Pina Colada in my hand, Reagan running free through the waves not a care in the world.
Rea of Hope 