A trip to Colorado brought back memories of my late daughter

Our family packed up and moved from Texas to Colorado just weeks after Austen, my 9-year-old daughter who passed away last year from complications of Dravet syndrome, was diagnosed with the condition. She was only 13 months at the time, and we stayed there for over five years.

We moved to get her access to medical cannabis, so Colorado Springs was where Austen got her first taste of seizure freedom. It’s also where her older brother, Atlas, first played soccer and baseball, and her older sister, Addi, honed her musical talents and earned a spot in the youth symphony.

At first, we knew almost no one in the new state. It was just our little family, doing anything we could to give our baby a chance at survival. But new friends soon became family, and we made countless memories; now, four years after we left, our hearts still long for Colorado. It became more than just a place we moved to help Austen. For all my children, it was home.

Even though we moved back to Texas after my divorce from their father, the kids have always asked to go back to Colorado, even just to visit. I promised Austen I’d take her back someday, but I never got the chance.

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My new husband, Dakota, travels for his job. Last week, he got the call that he needed to be in Colorado for a job lasting (hopefully) several months. When he asked me if I wanted to ride up with him for a few days, I jumped at the chance — especially when he told me we could spend a day in Colorado Springs. I’d be able to show him where Austen and her siblings grew up, the places she loved so much.

We started at our church, where Austen spent a lot of time. The nursery worker there was like another grandmother to my children, and the rest of the parish became a family that gathered around us during good and bad times. Dakota was able to see the grounds where Austen ran free, the beds she kept picking flowers from even when told not to, and the nave where she ran up and down the aisles. She’d often sing at the top of her lungs while the priest was speaking, and would refuse to do her angel duties during the annual Christmas pageant.

Next, we drove by our old house, and while I wasn’t crazy enough to knock on the door (though I did consider it), I showed Dakota the driveway that Austen would roll down after it snowed. And we could see parts of the backyard where she and our dog, Milo, would play for hours.

Memorial Park was next on our list, including the lake where I’d walk laps with Austen in her stroller and the playgrounds she enjoyed in any weather. That’s where I learned Austen had no concept of self-preservation; she’d jump off a ledge without looking to see if there were a ladder or slide beneath her. I couldn’t be one of those moms who sat back and read a book while her kids played. Instead, I had to constantly watch Austen because there was no telling what she’d do.

That playground was also where Atlas and Addi discovered that, while Austen might have blindly accepted the world around her, it didn’t always accept her. It was where they developed their fierce sense of protection of her.

Lastly, we drove outside the city to Manitou Springs, a little postcard of a town that Austen would always request to visit on our girls’ days. She loved walking around and looking at everything, especially the arcade. To me, it was like walking onto the set of the 1987 film “The Lost Boys,” but to her, it was a place where she could enjoy the simulator rides for as long as Mama’s money held out. Our days always ended with ice cream — strawberry, of course, for her.

Being back in Colorado Springs was bittersweet. I felt close to Austen there; I swear I could hear her little laugh echoing through the wind at the park or see her climbing on the pews at church. If I could, I might’ve stayed forever, just to hold on to that feeling.

But real life calls. Eventually, I’ll go back, with my other children in tow. Until then, I’ll remind myself that Austen doesn’t exist in a single place or feeling. She’s in every breath I take, every beat of my heart.

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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