Seven years ago, I wasn't sure how we'd get through the day, let alone seven years in seizureville. But, we made it. We're still making it. And I have no doubt that if you are reading this and questioning how you will survive this new life thrust upon you, you will figure it out and will make it too.
We didn't ask for this life. I don't think anyone sits around raising their hand to volunteer for life with a chronic illness/disease/disorder (whatever you wanna call it), but we're here and we may as well figure out how to deal with it the best way we can. Which is exactly what I told Kaitlin in December of 2008. Learning to deal with it, is the best way to get through it.
We have done our best to teach Kaitlin to take ownership of her epilepsy. That means for the last six years, ten months, and two weeks- she has been responsible for taking her medication- every. single. day. Proud mama moment is knowing that in all that time, she only ever forgot to take it once. She learned a difficult lesson that afternoon, and I know the consequences of her forgetfulness have made her more vigilant when it comes to taking her medicine.
We've taught her how to advocate for herself, and for others who are affected by a seizure disorder. Another proud mama moment is knowing that she DID make a difference in so many lives, just by being transparent in her own journey with seizures. It's not easy for a teenager to share the very details that make her stand out from her peers, but she did so for the greater good of every child living with epilepsy.
Kaitlin has always had to have a plan B, and sometimes a plan C and D. Seizures and medication side effects often create a state of unpredictable chaos, and you frequently rely on the backup plan to help you retain a sense of normalcy (although life with epilepsy is anything but normal). Sometimes plan B is simply knowing what you'll do in an unexpected situation.
This past year, Kaitlin got a job at a local amusement park (which she absolutely loves). She chose to disclose her epilepsy during the interview, even though by law, she wasn't required to do so. While she doesn't go around discussing her epilepsy every day, she doesn't hide it either. It's important to know that should something happen, someone around you will know enough about what is going on, so they can lend a helping hand.
Which is what happened last night while she was at work.
Somehow the small pill case fell out of her pocket while she was attending a ride. She didn't realize it until it was time to take her pills. Knowing my daughter, I am quite sure a moment of panic set in, but she kept her composure and enlisted the help of her ride lead (who then enlisted the help of maintenance, upper level management, security, and medical) and was able to handle the situation appropriately. As a mom, it's a relief to know they had her back, even though I'm sure it caused some disruption to their routine. Each person who came to her assistance recognized the importance of the situation and the urgent need for a positive resolution.
Raising Kait to speak up for herself in regard to her epilepsy was by far, the most important thing that we, her parents, could have done for her. Instilling a sense of empowerment and allowing her to take ownership of her lifelong disorder is what will help keep her safe and healthy.
As the first day of Epilepsy Awareness Month begins, I thought it would be appropriate to share our experience with you. Epilepsy research is still grossly underfunded in comparison to other neurological disorders, and the need for awareness is very real. Awareness creates unity, and unity creates comfort in knowing you aren't alone. Recognizing that nobody needs to walk this journey alone is the lesson we hope you will take away from this post. Don't be afraid to talk about your epilepsy.
Thanks for reading,
Kim
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