My daughter is starting to recognize the danger of her Dravet seizures
For the first time, she seems anxious about her illness
For a large part of her life, Austen, my 9-year-old with Dravet syndrome, didn’t seem aware of the limits that seizures brought to her life.
She was fearless — so much so that we had to address her lack of self-preservation skills in applied behavior analysis therapy. Austen would try to walk off a ledge on a playground without checking to see if it was a slide or a drop-off.
She was aware that she had seizures because we’d talk to her about them often, but she wouldn’t bring them up unless we did it first. She just lived her life without regard for that danger, and I liked it that way. She had a sense of normalcy in her daily actions.
However, there have certainly been times when I’ve said no to an event out of fear that it’d trigger a seizure for Austen. I’ve been careful when selecting her after-school activities, for example. And we recently made bounce houses off limits, after Austen seized in them on two separate occasions. But it’s always been me who’s scared, never Austen.
Until recently, that is.
Fear creeps in
It started small. For Austen’s birthday, we rented a giant inflatable Slip ‘N Slide that didn’t have any netting so the light coming through wouldn’t cause her to seize. Austen asked several times if she was safe to play on it, and she even got off several times to rest.
Another example is that my kids have talked for years about wanting to ride horses. It’s something I grew up doing, but it just wasn’t readily available when we lived in Colorado. Recently, my family was given the opportunity to visit a ranch here in Texas, where my children could finally experience riding.
But Austen was worried about riding by herself — not because she was scared of the horse, but because she was concerned about having a seizure and falling. Dakota, my husband and Austen’s stepdad, was more than happy to get on with her. But my mama’s heart was breaking on the sidelines.
Dravet syndrome has emotionally affected the people around Austen for the past eight years, since her diagnosis. But it’s never affected Austen emotionally. I’ve been terrified, her siblings have suffered from anxiety and nightmares, but Austen had always seemed OK.
She’d truly been happy and unbothered by Dravet syndrome. Even though this disease brings chaos and turmoil, her attitude was one thing I never anticipated changing. But now it has, and I’m not sure what to do.
I don’t even know how much Austen understands about seizures and Dravet syndrome. She doesn’t remember when she’s had one, yet she’s terrified by the idea of them. Her older sister has gone through therapy in large part because of the anxiety that comes with having a sick sibling. Does Austen need therapy to help her deal with her illness? I don’t know.
At this point, all I know is to take it day by day and love her. We’ll let her know we’re here to protect her and will be there for her when she’s scared or anxious.
Her well-being is my top priority, and it always will be.
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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