The little lost journal that brings back memories of our Dravet journey

My late daughter, Austen, had her first seizure just over 10 years ago. Those early years with Dravet syndrome were so chaotic that I was barely able to remember what day it was, much less keep a mental log of all of her seizures, appointments, and medication changes.

I knew then that I needed to find a way to keep track of the information critical to Austen’s health. So I began a journal that I filled with calendars and lists, noting not only her seizures, but also medication changes, symptoms, illnesses, and even the phases of the moon. Anything that could give me insight into Austen’s health was written in those pages.

It went everywhere with me. I remember pulling it out once in the neurologist’s office and calculating the number of seizures Austen had endured since her last visit, and then studying it for patterns in her seizure activity. Sometimes, she’d had them every three weeks like clockwork, then every week.

I kept the journal from November 2015 to June 2018, and only stopped as we entered what I call the “Dark Times,” when Austen’s seizures became out of control and we struggled to keep our heads above water, when each day brought too many seizures to count. The journal was eventually set aside and packed away.

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The journal was Austen’s story

I never forgot about it; I just assumed it was lost to time and interstate moves. But last week, buried in a box of children’s dictionaries and encyclopedias I wanted to use for homeschool lessons with Austen’s siblings, it found me. A pink, leatherbound book, filled with page after page of Austen’s story.

I cried, and then I read.

On May 17, 2016, she had a non-convulsive seizure that lasted roughly two hours, the first non-convulsive seizure the emergency room doctor had ever seen.

On March 13, 2017, she was admitted to the hospital to try the ketogenic diet to help her seizures. She had a rare reaction and her potassium levels spiked, causing her to develop a cardiac arrhythmia.

On June 14, 2017, she had a seizure at the church nursery. It was the first time I felt that she somehow knew it was coming. She had stepped away from the group of kids and went to sit with a nursery worker right before it started.

On and on it went. Doctors’ visits and comments that they were happy with her cognitive levels. Physical therapy notes indicating her ataxia was improving. Stomach bugs, fevers, hospital stays, and failed extubations — page after page, a map of Austen’s early life, and a map of my life, too. The journal was a lifeline between my sanity and the monster who kept me in a constant state of chaos, and something I’d recommend to any parent battling in the trenches of this disease.

Austen passed away from complications of Dravet syndrome 18 months ago. The journal reminds this grieving mama of just how much I fought for her each and every day.

Its first page held the sweetest reminder: a couple of scribbles, one pink and one in pencil, no doubt done by Austen one day when I’d left it out after writing down a note or two. A mark showing she was here, a little “hello” to brighten my day.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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