Over the last year, we have pretty much kept our family in a constant state of quarantine, fearing what would happen if Austen, our 6-year-old with Dravet syndrome, caught the coronavirus. When something as small as the adenovirus sends her to the PICU, the idea of the COVID-19 virus…
The Journey to the Truth
— Meagan Earley
Meagan Earley lives in Paris, Texas, with her three children, dogs, cats, and a turtle named Carl. She is a preschool teacher and a caregiver to her daughter, Austen, who was diagnosed with Dravet syndrome in 2016. Meagan has relied on her village of other Dravet syndrome caregivers in the years since Austen’s diagnosis, and writes her column in the hope of paying it forward to other parents who are fighting each day to help their child thrive in all circumstances.
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A few months after my daughter Austen passed away due to complications of Dravet syndrome, we acquired a new dog. My husband, Dakota, and I had begun talking about how both of our families have traditions of naming animals after loved ones who have passed on. His aunt and…
The previous weekend, I did something I haven’t done since March of last year: I woke up early, got all of the kids into the car, and headed to church. Truthfully, I had a small panic attack the previous night about all the “what ifs” that might happen in this…
“Have you tried the ketogenic diet?” I’ve been asked this question more times than I can count. When people learn that we tried cannabis therapy with Austen, my 6-year-old with Dravet syndrome, before medications like Onfi (clobazam) and Fintepla (fenfluramine), they always want to know if we have tried…
Ever since I have become a mom, I have always chosen to safely co-sleep with my babies until they were weaned. It might not be what works for every family, but for my family, it was the best choice. My oldest daughter, Addisen, 13, weaned when she was 2…
One of my biggest fears in having a special needs child has always been how society would treat them. My husband and I both have aunts with special needs, and we know firsthand how cruel the world can be to people who don’t fit into the perfect dimensions society deems…
This past week, we reached another milestone in the baby steps we are taking to return to our normal lives amid the pandemic. And the experience was amazing. Since we moved to Colorado in June 2016, we have maintained our membership to the Cheyenne Mountain Zoo in Colorado Springs. As…
Another year brings another debate with myself: to home-school next year, or not to home-school next year? I started our home-schooling journey in 2013 when my oldest daughter, Addisen, was 5. I home-schooled her until halfway through third grade, when we found a school here in Colorado we liked. For…
This past week our family suffered a tragic loss. Our rabbit, Susie Stew, whom we had adopted roughly 15 months earlier, passed away in her sleep. Between the time our neighbors had her (at least the entire three years we lived next to them) and the time we had her,…
I’m trying something new this summer: A slow, intentional way of life. I dream of mornings that aren’t rushed or chaotic, and evenings when I’m able to get the kids bathed and in bed without either of us breaking down in tears or shouting. I’m not delusional. I know my…
Columns
‘I’m Sorry, She Has Autism’
Autism is a secondary diagnosis for my 6-year-old daughter, Austen. Her primary diagnosis is Dravet syndrome, which causes her to have intractable epilepsy, weak muscle tone, and many other symptoms. I’m not sure if her autism is a stand-alone diagnosis, and if she would have it whether or…
A few weeks ago, my daughter Austen turned 6 years old. It was an exciting day that she had been looking forward to for months. She wanted a unicorn birthday party, complete with a unicorn cake, unicorn decor, and…
Columns
Happy 6th Birthday, Austen!
Something crazy is happening this week. Somehow my daughter Austen, the baby who must have only been born yesterday, is turning 6 years old. I can’t let myself believe it, yet I must. This little girl has been a surprise from the moment I found…
Recent Posts
- Her name is Sister Bear Potato, and she is exactly what we needed
- So little time has passed since my daughter’s death; only a lifetime ago
- Holding on to memories has helped me get through the hard days
- I didn’t stop being a mom when my child with Dravet syndrome died
- I wouldn’t change a single thing about my daughter’s story