Last week, my daughter Austen and I were doing our normal before-bed ritual. We cuddle up together on the couch, and she plays on my phone while I catch up on an episode of whatever I’m binge-watching at the time. This is our special time, now that she sleeps most of the night in her big girl bed, and I cherish it.
This night was different, though. Through the corner of my eye, I noticed Austen holding the phone weirdly and looking to the side. Thinking she had fallen asleep, I leaned forward to kiss her cheek but noticed she wasn’t asleep at all — she was seizing.
Austen’s first seizure was almost five years ago, yet this one still took me by surprise. It was a nonconvulsive seizure, but even so, she was sitting right next to me, our bodies were touching, and I didn’t know how long it had been going on before I noticed.
She hadn’t missed taking any of her meds, she wasn’t outside earlier being super active, and until that point, she hadn’t shown any signs of being sick. Five years in and I froze for a second. It felt like my heart had stopped beating, and I had to choke out a breath to tell her siblings what was happening.
They jumped right into their normal seizure routine like the champions they are, without a second thought. In the meantime, I still sat there with the world buzzing around me.
The seizure only lasted 3-4 minutes from the time I noticed it, but it felt like an eternity. Austen vomited during the seizure and then battled a fever throughout the night, so I know that illness was the culprit. Still, when it was over and she was finally asleep, I found myself in the shower ugly crying.
I didn’t ugly cry because of that single seizure, which was fairly mild compared with past ones, I cried because one seizure has the ability to take me back to the past. After several good months, one seizure can freeze me in my tracks and make me question whether our good days are over, and the bad days are starting all over again.
They call it PTSD, but I’ve made it known that I like the term CTSD instead — chronic traumatic stress disorder. As long as our kids are living, the stress goes on; as long as they are here, the trauma keeps repeating itself like a ferris wheel we can’t get off.
Austen’s fever broke throughout the night, and by the next morning, she was back to her rambunctious and destructive self. As for me? I am still anxious. I find myself second-guessing every weird movement or look from Austen. But I got up in the morning, got ready, and went about my day.
I didn’t stay in bed and dwell, although I really wanted to. I can’t do that. I have a family who needs me. Austen needs me.
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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