Storing memories to teach future generations about our journey

I grew up in a family that didn’t get rid of our old things. Items weren’t thrown away or sold at garage sales. Things that could be used were kept in rotation, and things that weren’t were packed away and stored.

As a child, I remember hours spent looking at my great-grandmother’s china set or my grandmother’s antique glass dolls. I learned to bake in old Pyrex bowls that weren’t left to sit on a shelf and look pretty; they were just never taken out of rotation.

My children grew up among those items, too. We spent the first year and a half after moving back to Texas, and just about every vacation before that, in my aunt and uncle’s house. When the Dravet syndrome monster wasn’t acting up, my late daughter, Austen, spent her time there much as I had as a child — baking in the old dishes and harvesting the gardens with the old baskets. She loved to take one and go down the driveway to pick blackberries each summer, her dog Milo never far behind. They ate as many blackberries as they brought home, and her mouth and hands were stained purple by the time they’d get back.

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What we endured

In my Papa Dink’s house was a crude wooden chest that was left over from his time in the Army, the kind you’d imagine explosives would be stored in. By the time it was given to me, all it contained was a ragged American flag.

After Austen passed away, family members told us we should have something to store important items of hers, so we’d always have them. My aunt brought out that old wooden chest and a family friend polished it up. He left the original Army stamps on it, but carved and painted on it Austen’s name in pink and purple letters. Then he took that old flag and folded it 13 times the way you’re supposed to and put it with Austen’s things — a favorite T-shirt she would have worn every day if I’d let her, the yearbook from her school with her memorial page in it, and the journal I kept during the first few years of her Dravet journey. It’s filled with details of every seizure, every illness, and every medication change she had during that time.

I plan to eventually write out Austen’s whole story and place it inside the chest, too. That way I can always know what we endured, even when I am old myself and my memory has faded.

Maybe someday one of my descendants will find that chest tucked away among the treasures of her ancestors, as well. Maybe they will have seen a picture of Austen, but not have known her story. Maybe they or their children will be going through a health struggle, and learning about our Dravet syndrome journey will help them know they aren’t alone. Maybe seeing it will teach them they can endure anything life throws at them, and that they can still find joy, even when the obstacles are stacked against them. That’s what Austen taught 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.