The Chapter I Didn’t Want In my Story

Has the story of your life ever taken an unexpected turn and left you sitting in the dark, wondering what happened?

There are chapters in the story of each of our lives that we didn’t ask for, and if given a choice we would have said “No thank you,” for who in their right mind would say yes to trauma, suffering or disaster?

The chapter I didn’t want in my story is my family’s journey with Epilepsy.

Our journey began on a Saturday afternoon in November, 2006. It had been an ordinary day, filled with caring for Anderson, who was 3, and Maggie who had just turned 1. The colorful leaves and the crisp breeze drifting through my open windows made the walls of our home seem stifling. I bundled everyone up to go outside. It was a slow process. I was very pregnant with Ellen, waddling around getting everyone’s socks and shoes together.  Then Maggie’s seizure hit and suddenly I was in ambulance, sirens blaring, wondering what happened to my normal day.

Maggie continued to have seizures every few months, and we had no idea what was causing them. When Ellen was 18 months old, she began having seizures as well. Another chapter I didn’t want in my story.

After a million questions, hours of research, and keeping a detailed journal, we figured out that heat, internal or external, was the trigger for their seizures. We also found a medication combination that worked well. Ellen has been seizure free for 4 years, and Maggie has been seizure free for 3 years. They don’t remember ever having seizures. It’s such a twist of irony that the biggest trauma I’ve experienced thus far as a parent is non-existent to my children.

But I’m so glad.I don’t want them controlled by fear. Fear eats away at hope. And at 8 and 9 years old, there is a lot to be hopeful about.

I did not feel hopeful in those early years, filled with uncertainty. The triplets of destruction – anger, fear, and despair – had a hold on me for a while.

Though things have settled, our journey hits me full force at the beginning of each school year when I meet with the girls’ teachers. I hope we never have an episode at school, but if it does happen, I want the adults caring for my girls to be as prepared as possible. And I realize that I may also be preparing them to help another child down the road.

I still have days when I wish we weren’t on this journey. I have days when my mind goes too far into the what ifs. The fight for hope keeps me balanced on those days. The fight for hope keeps my focus on what I CAN do.

My goal through this journey has been to allow my children to have as normal a childhood as possible and still be safe. We have learned to modify our activities. We go to the beach in October instead of the heat of summer. We play outside in spring and fall as much as possible. The girls are aware of their limitations, but I never want them to be defined by their limitations.

I want to travel this road well. Although they may not remember having seizures, one day my children may be right where I am, raising children who have seizures. I want to be able to offer them hope for their journey.

I don’t understand exactly how, but God has worked through this unwanted chapter in my life. Over the years, He has woven beauty into the sorrow, reaching places in my heart that would have otherwise gone untouched and unchanged.  He has used this journey to build my “fighting for hope” muscles. And I need those muscles to experience joy in the unwanted chapters of my life.

#thefightforhope