A single mom reflects on the importance of community
When you're parenting a child with Dravet, it really does take a village
October 2021 was one of the hardest months of my life. My marriage was ending, and in the chaos, the only clear thought I had was that I needed to get Austen, my now 8-year-old daughter with Dravet syndrome, and her siblings back to Texas.
That might sound weird to some because we were living in Colorado at the time, a state that makes life much easier for special needs families than Texas does. But the Lone Star State had two things Colorado didn’t: my family and my former home. I knew that if I were going to succeed as a single mom, I’d need both to make life work.
Since then, friends and family have helped me out in ways I can never repay. They’ve watched my kids when they’re sick and home from school, gone with me to doctor appointments, and cried with me through the stages of grief from my divorce. They’ve supported our family during this journey’s ups and downs, and they’ve steadied me when I couldn’t walk alone. My aunt and uncle even opened their home to us for more than a year while I worked to get back on my feet.
Texas also provided us the opportunity to live in a tightknit community that goes beyond blood relations. We’re from a small town in Northeast Texas, where everyone knows everyone. Paramedics and nurses who’ve treated Austen since she was a baby still check in on her. Even the FedEx man who each month delivers her Fintepla (fenfluramine), an anti-seizure medication, goes out of his way to keep an eye on her.
Silent heroes
Austen’s Fintepla is usually shipped to my maternal grandmother’s house because I’m at work when it arrives and can’t sign for it. This month, however, I had it sent to another family member’s home because I thought Granny would be out. When the FedEx driver arrived, the other family member wasn’t home, so he decided to make a detour to Granny’s house to make sure there hadn’t been a mistake; he was worried that Austen would miss her treatment. It turns out that Granny was home, but afterward we gave the driver permission to leave the medication on the porch when no one is home.
This act of kindness might seem like a small detail, but it’s huge to me. Someone we see once a month when he’s delivering us a box cares enough about Austen to make sure she’s taken care of. He’s definitely getting a Christmas bonus from us this year!
With all of that said, I do miss Colorado deeply. It was the most beautiful place I’ve ever lived. State programs there made it much less difficult to be a special needs parent. But given the choice between that and what I have now, I think I’d still choose Texas.
Someone once told me that home isn’t a place; it’s the people you experience life with. I’m thankful every day for the people in our lives who hold us up and walk with us in the trenches along the way.
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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