From the editor of Insights into Epilepsy: This month Ben Johnson has written a blog titled Uncertainty. We encourage Dads to join Ben and share their insights into raising a child with epilepsy by sending us your comments. Thank you Ben for sharing your story with us.
Ben with daughter Lucy
I can recall vividly my first experience with epilepsy. My wife told me that our 18-month-old daughter had been so tired that she fell off the toilet and head-first into the trash can. She was not hurt and quickly recovered herself. No harm, no foul. We thought it was so cute—a precious little girl being so tired that she fell into the trash. Off the toilet no less. We did not know it then, but our lives had already changed. And there was nothing cute about it. A few days after this first incident, our daughter briefly went limp while I was helping her brush her teeth. I was supervising her brushing very closely, so the seizure did not cause injury. It was very fast like a hiccup, and again she recovered very quickly. These were the days leading up to her first very severe grand mal seizure, an ambulance ride, a hospital stay, worried relatives, and loads of uncertainty. Loads of uncertainty. While our daughter had been seizure free for a brief period before relapse, and is currently seizure free going on five years now, we still live with uncertainty where guarantees are hard to come by. And as I reflect on this feeling of uncertainty, I feel more emboldened in the face of it because of the support we have built not only through family, friends, and the medical community, but also through the community we have joined in the Epilepsy Association. It is comforting to know that we are in this together, whatever the future may bring. And that support has meant the world to us.