As I sat at lunch on Wednesday, talking to a fellow mom whose daughter is currently suffering from absence seizures, she shared her story which is new to them. They’re in the waiting phase. Waiting for tests. Waiting for answers. Waiting for a solution. And it broke my heart. Because not too many years ago, we were right there in her shoes.
At 12 years old, our daughter Kalli was diagnosed with epilepsy. Epilepsy is defined as “a neurological condition characterized by recurrent, unprovoked seizures.” No one knew why they started happening. We hoped she’d grow out of them as so many children do. Her neurologist at the time did the best he knew how with trying different medicine and yet they always seemed to come back.
As I was telling her story to my new friend, I pulled up the list below to show how many seizures our daughter Kalli was having back in early 2021-2022. Just revisiting this information brought me right back to the feeling I had every time I had to write another date and time. In the epilepsy world, it’s called “resetting the clock” because everyone hopes that each time is the last time, they’ll ever have a seizure. It was a feeling of despair. Would her life ever be “normal?” How could she ever grow into an independent adult? Would they eventually get worse?
This list was kept in the notes of my iPhone. I’d right down the date and time in my growing list…