Meagan joined BioNews in 2020 as a columnist for Dravet Syndrome News. Before joining the BioNews team Meagan was a freelance writer for six years. She also runs her own blog www.athomewithmeagan.com, where she writes about homemaking and parenting. Meagan lives in Colorado with her husband and three children. Her youngest daughter, Austen, was diagnosed with Dravet syndrome in May 2016 at 1 year old.Author Kellie Elmore has a great quote I find fitting for my family at the start of summer: “I love how summer just wraps its arms around you like a warm blanket.” As a teacher and single parent of three children, I typically spend the summer playing catch-up.
When Austen, my 7-year-old daughter with Dravet syndrome, was born, I had no idea that the disease existed, much less that it was embedded in my perfect baby’s DNA. Even when she began experiencing seizures, the next four months were like swimming in a murky lake. We knew…
Last Monday, we skipped soccer practice for Austen, my 7-year-old daughter with Dravet syndrome. Soccer is a regular part of her routine. No one was sick, and the weather was nice. But I was exhausted, and all I wanted to do was get home, put away two loads…
I wrote in my last column about how I have to allow life with Austen, my 7-year-old daughter with Dravet syndrome, to ebb and flow in keeping with her needs. This demand often requires me to put my own wants aside. The perfect example of it came on…
Jay-Z once said, “Don’t ever go with the flow. Be the flow.” And while I love Hov and his music as much as any self-respecting ’90s kid, that advice doesn’t always work when your child has special needs. Just before Christmas break, we made the decision to move…
Not long ago, I wrote a column about how Austen, my 7-year-old daughter with Dravet syndrome, was doing in her new school. She’s gone through a lot of changes in the past year, including her parents splitting up and a move to a new state. These changes would…
Back in November, I wrote about my 7-year-old daughter’s great accomplishment. Austen, who lives with Dravet syndrome, had set a new seizure-free record that seemed to be holding strong. But as it did last March, the flu hit our household in early December. It hit Atlas, Austen’s 9-year-old…
When Austen, my 7-year-old daughter with Dravet syndrome, was born, I didn’t have many things in her life planned out yet. I didn’t know what school she would go to, what sports I would put her in, or what preschool she might attend one day. I’m just not one…
In August, Austen, my 7-year-old daughter with Dravet syndrome, started a new school for the second time this year. When we moved to Texas from Colorado last winter, I put my children into the schools in our district. But over the summer, I got a job teaching for…
For most of her life until now, my 7-year-old daughter, Austen, who has Dravet syndrome, held the same record for the number of days she’d gone without a seizure. Dravet syndrome is characterized by frequent seizures that are often resistant to treatment. Austen’s record was 178 days.
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