Reflecting on the past year without our daughter Austen
A year has gone by since our daughter passed away due to Dravet syndrome
It’s been one year since we lost Austen, my 9-year-old daughter who passed away due to complications of Dravet syndrome. One year without her kisses and her sweet voice asking if I need a hug. One year without seeing her play or fight with her siblings. One year without her laughing at her stepdad’s jokes or being brought to my classroom when she’s throwing a tantrum.
A lot can happen in a year. Her younger sister, Grace, is now older than Austen lived to be. Her brother, Atlas, 11, is heading to his first year of middle school, while her 17-year-old older sister, Addisen, is on to her senior year of high school.
For the first anniversary of Austen’s passing, my husband and I decided to take a weekend trip out of town. I knew that if I stayed home I’d be tempted to remain in bed crying all weekend. I know that’s not the way Austen would want me to be.
Austen lived life so fully, embracing every second, and I know she’d want me to try to do the same. So we spent that Saturday floating the Caddo River in Arkansas.
We have a saying in our part of the country that if a cardinal visits you, it’s a loved one who’s passed and is stopping by to tell you they’re OK. I’ve always said I see Austen in bluebirds, though, because we had a bluebird nest outside of our old house and Austen loved to watch the babies grow up. She’d check on the eggs and then the babies every single day, being careful not to rock the birdhouse and harm its occupants.
As we floated the river, we saw several bluebirds, and red ones, too, along the river’s edge. I took each one as a sign that my baby was with me, letting me know she was OK. At one point, a blue dragonfly landed on my leg and stayed there for several minutes. I tried to be as still as I could, just basking in the beauty of nature and the tranquility of the moment.
I wake up every morning and think “one day closer”: I’m one day closer to seeing Austen again, one day closer to being with her in heaven. Some days this comes as a plea, but lately, it’s felt like a promise. I know I will see Austen again someday, I just don’t know when that day will happen. Until then, I promise to live my life in a way that would make her proud. I’ll keep her light shining as long as I keep on 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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