Dravet Syndrome Awareness Month is a time for reflection
Looking back on the eight years since my daughter's diagnosis
Every year as the calendar flips to June, marking the start of Dravet Syndrome Awareness Month, I find myself reflecting on what it means to be the parent of a child with the disease.
Austen, my 9-year-old daughter, was diagnosed with Dravet syndrome shortly after her first birthday. It has shaped every aspect of her life, as well as my life as her mother.
At first, the term “Dravet” seemed almost like a dream to me. While the disease is catastrophic, having a name for the monster we were facing somehow made it easier to tackle. Until that point, we were fighting blindly. We had no idea if her seizures would get better or worse, or what medications would be most effective in stopping the episodes. It hadn’t even crossed my mind that there might be an entire category of medications that would make her seizures worse.
Now, eight years in, I’m looking back on our journey with pain and joy. Austen has had some really bad years, times when seizures kept coming so fast that her little brain could barely recover before another one occurred.
She’s had countless hospital stays, blood draws, and doctor appointments, all in an attempt to keep her alive. There have been times we were told she might never wake up. I’ve sat in the front of a pulled-over ambulance while paramedics tried desperately to intubate her.
I’ve held her hand through medically induced comas and spent more nights than I can count on couches in the pediatric intensive care unit. I’ve had to tell hospital staff to please put on a sweatshirt before entering our room because scrubs terrified my baby. And I’ve sent thank-you cards to doctors who saved her life.
Not just living, but thriving
At the same time, Austen has beaten every obstacle that Dravet syndrome has put in front of her. She did wake up, every single time. She learned to crawl, talk, and walk, all on schedule with her peers. Yes, she’s had a lot of help from therapies along the way, but she has done it. She reads and she writes, she plays and she sings. She lives. Boldly and proudly, without caring what anyone else thinks, she lives and thrives.
Dravet Syndrome Awareness Month is important because it teaches those outside of our community about the struggles our children face every day. But it’s also important to remember that statistics are not one-size-fits-all. Our children can, and do, overcome the barriers they face. They are warriors, fighting a monster that is bigger than them each and every day. Not just fighting, but winning.
When it comes to a disease like Dravet syndrome, we never know what tomorrow will bring. I’ve truly learned to cherish every day with my child, because tomorrow is never guaranteed. Yet while Dravet syndrome will always be a part of Austen, she doesn’t let it define her. Austen is Austen; she’s spunky, she’s loud, and she loves with all her heart. She’s my daughter and my warrior. She’s my hero.
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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