A winter storm reminds me of magical snow days with Austen
Our time in Colorado helped me see the child that Dravet might have hidden
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I grew up in northeastern Texas, where it snows about once a year. Usually, it’s just a dusting that stays on the ground one to two days at most. Every few years, though, Mother Nature sends a real winter storm our way.
We just survived the latest one, a week covered in ice topped with a bit of snow that kept us indoors for the most part, cuddled up with hot chocolate and our favorite comfort TV shows. It was “Netflix and chill” for the entire week, and I loved it.
My two youngest children, Atlas, 12, and Grace, 10, went outside as much as they could. My husband had procured a few sleds at the local hardware store before the storm hit, and a family property in the northern part of the county, as well as the ditch in our own front yard, provided hours of fun. They played and laughed in a way I find unique to this sort of weather: red-cheeked, pure, and untainted by the struggles of everyday life.
Snowy days
Being snowed in and surrounded by laughter reminds me of Colorado and the unique memories I made there.
My daughter Austen was a surprise baby. I found out she was on her way when Atlas turned 11 months old. It was a difficult time in our lives, and another baby just wasn’t in our plans. But life became even more difficult when Austen started having seizures at 5 months, which led to her diagnosis of Dravet syndrome.
We had moved back to Texas a few months before I learned I was pregnant and had planned to stay there forever. But it was soon clear that our tiny town was not equipped to handle the degree of care Austen needed. We had to be near specialists familiar with the battle we were facing. We also wanted to be in a place where, under a physician’s care, we could safely try more controversial therapies — namely, medical cannabis. So we packed our things and left for Colorado less than a month after Austen’s diagnosis.
It was the right choice. Not only was Austen able to be seen by one of the top Dravet specialists in the country, but we were also surrounded by several other Dravet families, and her pediatrician even saw several Dravet patients herself.
Although she never went long stretches without a seizure before being placed in a Fintepla (fenfluramine) clinical trial in 2019, Austen thrived both physically and cognitively. Her progress may have slowed or even halted at times, but she rarely regressed, and in our world, that was a miracle. I feel the credit for that was largely due to the care she received from her medical team there.
We spent almost six years in Colorado, and it quickly became home. Winters, especially, were magical. As in Texas, the snow in Colorado Springs doesn’t stick around long, but it comes way more often, and some years we had snow as early as October and as late as May.
After the first few snowfalls, Addi, who’s now 17, and Atlas would quickly tire of winter, but Austen never did. She could spend hours bundled up outside, rolling down the hill in our backyard over and over again. She didn’t care that her siblings wanted nothing to do with the weather, and even Milo, her dog and trusted companion, spent most of his time under the back porch watching from afar. Austen couldn’t get enough of it.
In one of my favorite videos I have of her, she is rolling down our driveway over and over. Every time she reaches the bottom, she stands up and starts the climb back up to the top, cheeks red and giggling the entire time, with the same kind of laughter Grace and Atlas still express today.
​Even though I am so grateful we were able to spend Austen’s last few years back here in Texas, surrounded by friends and extended family, I will forever be grateful for our time in Colorado. Not only because I believe the treatment there helped me hold on to the Austen that Dravet syndrome could have kept hidden away, but also because of the memories we made. Snow days will forever take me back to those memories, and that contagious laughter that still resonates within them.
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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