Why I Share My Family’s Life With Dravet Syndrome

I am often asked why I write about my life so much. Or if I get tired of sharing the daily ins and outs of our family life. 

I guess I see where people are coming from. In a life with neurotypical children, writing about your child learning to read or going to their first sleepover might not seem very exciting. Yet here I am, rejoicing in those little moments as though my daughter Austen has climbed Mount Everest. 

I write about our daily life — the good, the bad, and the ugly — because our lives aren’t the normal, white-picket-fence dream I had imagined. Our lives are filled with worries about whether my child will wake up tomorrow, or if SUDEP will take her in the night. In a world where the idea of “tomorrow is not guaranteed” is more than just a quote on your coffee mug, the mundane and trivial milestones seem like huge hurdles that deserve celebration.

My family is not alone. Dravet syndrome affects an estimated one in 15,700 people in the U.S., yet so few know about it at all. When we first got our diagnosis in 2016, we were the first case of the disease that any doctor in our local area (our county has about 50,000 people) had ever experienced.

In the beginning, I felt so alone. I spent hours online reading anything I could find to prepare myself for our future. I wanted to know what to expect at every moment. When would her seizures get worse? When would we start to see a decline in her abilities? Was there any chance she could grow up to live a normal life?

If I could have read a journal written by a parent experiencing what I was up against, I would have devoured it in a single sitting. That’s because like many parents whose children are sick, I just want to know what we’re up against.

At the same time, I think it is just as important to share our lives with people who are not personally affected by Dravet syndrome. People who might see my child outside of our home, and wonder what our lives are like. People who might wonder if Austen is just an ill-behaved, spoiled child throwing a fit in a grocery store, or if there’s something going on deeper that might be affecting her behavior.

I’m not saying that everyone who reads these columns should be brought to tears over every milestone my daughter achieves. Or that they should cry with us whenever life gives us setbacks.

My only hope is that by sharing our lives with you, we are able to help spread awareness beyond the statistics of Dravet syndrome. To show you a glimpse of the real lives of the people who live with this every day. 

Although this is not the life I had imagined we would have, it is light-years more amazing than I let myself believe it would be when we got Austen’s diagnosis.

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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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