Reminiscing on my late daughter’s educational journey

Recently, a back-to-school photo of my late daughter, Austen, appeared in my Facebook memories. It was from our homeschool years, and she chose a pajama day to kick off first grade. Clad in pink and white striped pajamas with large pink bows in her pigtails, she smiled at the camera in an “I won” sort of way.

Five years later, homeschool is kicking off again in my house. Austen should be starting sixth grade, stair-stepped between her sister Grace in fifth grade and her brother, Atlas, in seventh, but a piece of our puzzle is missing.

Sixth grade. No longer an elementary school “kid,” but a person on the verge of adolescence, starting to carve out her place in the world. Sometimes I find myself imagining who she would be today. How her interests would have evolved, what turns her journey would have taken. And while I’m unable to create new memories with her this school year, I still find comfort in memories of years past.

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When Austen started pre-K, I was so nervous I almost didn’t send her. That first year, the seizures caused by her Dravet syndrome meant she missed more school than she attended. But her school rallied around her. They made sure a paraprofessional was with her everywhere she went on the playground, so she could be safe while enjoying normal activities with friends. And when she did have a seizure at school, her principal listened to me about an ambulance not being necessary and instead helped me carry her to my car.

COVID-19 arrived in the spring before she started kindergarten, and with it, we decided to bring school to our kitchen table. I had homeschooled her older sister, Addi, before, but I was less confident in my ability to handle Austen’s educational needs. But she taught me that even if she learned at her own pace, she was still learning. By the time first grade came around, she had begun to learn to read, a milestone I had been told time and time again not to expect with Dravet syndrome.

Then came my divorce, our move back to Texas from Colorado, me working outside the home, and the kids going back to public school. I cried when the school staff told me they thought Austen needed to spend some time in special education classes to help catch up with her peers educationally and socially, and I cried again a year later when they said she was ready to start transitioning back into a general education setting.

During the last year of her life, I was teaching at the same school she attended. Sometimes it was a headache; she frequently snuck down to my classroom and interrupted my lessons just because she wanted to get out of whatever she was doing in class. But other times, she’d come and see me because she was having a hard time and just needed her signature “hug and a kiss” before she skipped off to finish her day.

Dravet syndrome affected every part of Austen’s life. But as with everything else, she took on education as a challenge. Whether she intended to or not, Austen lived her life in spite of her diagnosis, instead of letting it drag her down. I hope she knows how proud I was of her, and still am.

I returned to teaching a little over a month after Austen passed away in 2024. Many were surprised I went back so soon, but I needed to be in the classroom. I needed the distraction and a reason to get out of bed and get going each morning. My students, as little as they were, have no idea that they saved me that year. But that’s the truth. They kept me busy, and busy is what I needed.

Although I have stepped away from being in the classroom full time for now, I still substitute every once in a while when I’m needed. Every time I walk into the school, I take a detour past one of the two memory benches that flank each side of the school’s main entrance. Their backs are engraved with the names of students who passed away. Austen’s is the first name on the last row of one of the benches.

When I was still teaching, I avoided this bench like the plague. I purposely came in through the side entrance every day just because it hurt so much to see her name there. Now, I look at it in almost a wistful fashion. I’m so sad that she is not here to experience this school any longer, but I look back at the memories she made here with joyfulness, and I’m glad a part of her will live on in its halls forever.

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.