Austen’s World Is Expanding, Giving Me Much Needed Rest

Last weekend, something happened that hasn’t happened since I became a parent over 13 years ago: I had an entire weekend to myself.

There were no kids events to go to, no errands to run, and no husband or kids yelling at me or each other.

It was an entire weekend completely alone — amazing.

A few weeks ago, after all the adults in my family were fully vaccinated against COVID-19, the kids and I loaded up the car and drove from Colorado to Texas, to surprise my mom for her 50th birthday. 

COVID-19 protocols made our trip a little longer. But we followed all of the guidelines from the U.S Centers for Disease Control and Prevention during our drive, and we made it to Texas in one piece. Well, maybe a bit of my sanity was left in Amarillo.

Last weekend, my grandmother took my oldest daughter, Addisen, 13, to her house. My mother, bless her soul, took my other kids, Atlas, 7, and Austen, 5. Austen has Dravet syndrome. I wasn’t sure if my mother would survive, but she did.

I’m learning to let go and share the duties of being a special needs parent. But it’s hard to do when I feel like every seizure and every autism tantrum is my responsibility. My mom told me to go home and take a nap. She said she’d kiss the kids goodnight for me, but wouldn’t call unless there was an emergency. She wanted me to have the entire weekend to myself.

It was hard, but I listened to my mother. I went to my aunt’s house, where I’m currently staying, and did absolutely nothing. I spent the entire weekend reading, knitting, and resting. I know that if I’d been back in Colorado, I would have been taking the time to deep clean the house. When the kids came home, I’d be just as tired as when they left. In Texas, I focused on resting, and it made a world of difference.

I woke up Monday morning feeling completely refreshed. The kids had a blast with their grandparents, who were excited to spend time with them. My mom gave Austen her medications correctly and on time, and Austen made it through seizure-free.

I’ve never been one to let go of things easily. I view my kids as my sole responsibility, and I have a hard time letting even my husband take over. For example, I once cried when he took Austen to a medical appointment. 

I’m slowly learning, though. I will always worry when Austen is away from me, but it’s good for both of us to allow others to be involved. Our motto for Austen has always been, “As normal a life as possible, for as long as possible.” I never imagined allowing her to have a normal life would be so hard for me to do, but I’m slowly letting go. 

As for Austen? She’s ready to run.

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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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