A bad dream takes me to a difficult period of our Dravet journey

Have you ever had a dream that shook you to your core? I’m talking about a dream that seemed so real you woke up crying in the middle of the night? I did a few nights ago.

In the dream, my 8-year-old daughter Austen, who has Dravet syndrome, had passed away and I had to process everything. I woke up to a soaked pillow, tears still flowing down my face. It took me a few seconds to realize that it had been a nightmare. Nevertheless, I rushed to her bedroom to make sure she was still breathing.

I’m still shaken days later. I check on Austen in the middle of the night, stress out when she falls asleep in the car, and fervently pray every night before bed. The stress and paranoia ease a little each day, but they’re still there. And they take me to a pretty dark place.

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I used to live with that mindset every day. Before Austen began treatment with Fintepla (fenfluramine), she was having so many seizures every day that none of us — especially her — had time to recover between them. It was a constant cycle of seizure after seizure.

I was so scared at one point that my therapist suggested I talk to my priest to plan Austen’s funeral. That way, he said, I could focus on grief if it did happen, instead of having to worry about all of the details that day would entail.

I don’t have many clear memories from that period I call the “dark times.” But I do remember the fear. In desperation, I’d cling to every moment that Austen wasn’t seizing.

Four years later, we’re in a much better place. Austen had only one seizure in all of 2023. It’s miraculous.

As time goes by, I find myself focusing on that fear of losing Austen less and less. It’s increasingly easier to just let her live. I even have the privilege of becoming a bit complacent with her disease. For the most part, it no longer lives at the front of my brain, controlling every thought and action.

Perhaps that complacency explains why the dream affected me so much. With Dravet, the risk of seizures never fully disappears. Therefore, neither does the risk of death or other complications.

But I can’t let myself live in fear. I have to pull myself out of this. While I’ll look at this experience as a reminder not to become too complacent, I can’t let these feelings rule my life or hers. As songwriter Mike Cooley once said, “Living in fear is just another way of dying before your time.”

I’ve fought Austen’s entire life to keep her alive, and I’m not going to let my own fears prevent her from truly living.

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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