It’s been a long time since I’ve written — too long. But I have some amazing news to share. When Austen, my 7-year-old with Dravet syndrome, started having seizures, it put us on a roller coaster of doctor appointments, hospitalizations, new medications, and hoping against all hope that somehow…
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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My entire world revolves around my children. As a special needs mom, I often lost my own identity in the fight to not only give my late daughter, Austen, a better life, but to keep her alive. But when Austen was about 2, I found myself at a point where…
Later today, after writing this column, I will leave for a five-day vacation without my kids. My mom and dad will be taking care of my three children, including my youngest daughter, Austen, who has Dravet syndrome. A year ago, I don’t think I would’ve had the nerve to…
“Mom, where is my friend? You know, the one who looks like my twin?” We were at the baseball practice of my 8-year-old son, Atlas, and my daughter Austen, who is 6 and has Dravet syndrome and autism, tugged on my jeans, clearly annoyed that her playmate wasn’t there…
When my 6-year-old daughter, Austen, was born, she seemed completely “normal” for the first five months of her life. She was born without complications and hit her developmental milestones according to a normal schedule. Like any mother, I dreamed of the things she would grow up to do, including…
When my daughter Austen, now 6, started having seizures years ago due to Dravet syndrome, it took us over six months to receive a diagnosis. That period was a whirlwind of seizures, hospitalizations, doctor appointments, and phone calls to her pediatrician. We even switched hospitals when her original neurologist…
“Mom, I’ve decided I don’t want you working anymore. Now I have to go to school even earlier, and I get home even later.” Those are the words of my 8-year-old son, Atlas. Until this year, I have mostly been his stay-at-home mom. I received my bachelor’s in elementary…
“Mom, is Austen OK?” Addi, my 13-year-old daughter, was on the school bus headed home last week when she sent me the text. I was confused but assured her that her 6-year-old sister, who has Dravet syndrome, was fine. It turns out that…
I sent my two youngest children back to school earlier this month. While their oldest sister, Addi, 13, returned to school in November, neither my son, Atlas, 8, nor his younger sister, Austen, 6, had set foot in a classroom in 22 months. We took…
I sent my two youngest kids back to school this month for the first time since the COVID-19 pandemic began. I wasn’t too worried about my son, Atlas, 8. He has thrived through two years of home schooling. He’s a grade ahead in math and a great reader, too, although…
I took all three of my children out of school on March 13, 2020, the day before our local school district decided to switch to remote learning because of the COVID-19 pandemic. This was because our youngest daughter, Austen, 6, has Dravet syndrome. In the past, something as seemingly minor…
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Thank You, Colorado
In June 2016, I packed up my home in Texas, my three children, and my entire life, and moved 752 miles away to Colorado in search of hope. Hope that we could delay putting my youngest daughter, Austen, on another serious anti-epileptic drug to treat her worsening seizures, caused by…
Our lives are changing, and this time, it isn’t due to the effects of Dravet syndrome. I have mostly been a stay-at-home mom for the last 11 years. I have a degree in elementary education, but when we had our second child, Atlas, who is now 7, I figured I…
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