I started writing this book for Rose when the seizures returned while she was in the third grade. I knew she would not remember everything that happened. I wanted her to know how brave she was and how hard we tried to take care of her.
Through the tough years, I put the pages away in a big envelope. I drew a heart on the front with “Dear Rose” written in the middle of it. She found this envelope years later while she was in high school. Rose left me a note on the envelope saying that I needed to finish this book.
I stopped and started hundreds of times. Writing was drudgery. Remembering was painful. I did not want to do it, but I felt compelled. I needed all this suffering to have some kind of meaning. If not for us, then for someone else. I may never see the results. I told myself that would come in God’s time, not my time. So I kept trying to get it done.
One summer my sister talked me into going to a storytelling workshop with her. The famous storyteller was our former minister. So the science teacher sat among all the right-brained, creative folks for a week. We shared stories every day.
This was a turning point for me. I had been trying to write down every detail in order, when what I really needed to do was save the stories. I started from scratch, again. This last draft with just the stories. I did not attempt to put them in order at first. All I wanted was to get them out of my brain and onto paper. I did not just write this for Rose. I also did it for me.
Carrying around all these events in my head and heart was too much.
Writing the stories was a catharsis. At first I cried through every one. Sometimes I was forced to walk away from this book for weeks or even months. I had to find a way to keep myself balanced. I learned to work on only one story per day. I limited my time at the computer. I forced myself out of the house. My gardening kept me positive. My bunnies kept me entertained.
When Rose left for college, I felt a certain urgency to finish. She had moved out and moved on. I could not let myself start anything new until I saw this book through. I wrote at least four mornings each week during the first year that she was away at the university. My family knew that when it was done, that I would want to publish it for other parents who are going through their own struggles with a child who has epilepsy. It was a lonely journey. Fear never left us.
Rose feels it is important to stand up for those who “fall down.” This is her story. She wanted to share it.
Seizure Mama and Rose