I have a confession. I used to hate Epilepsy Awareness Month. Maybe it’s because our daughter Austen’s first seizure happened in November, so I’m a little bitter about the month in general. Or maybe it’s because I’m a naturally introverted person,…
The Journey to the Truth – a Column by Meagan Cheney
“Look at the sky, Mom, it’s orange. That means it’s Halloween!” Austen was right, the sky was a very beautiful orange that morning. But I gently tried to explain to her that it wasn’t yet Halloween. It was no use. Within minutes, we were in full…
Today a mom asked me if I thought she should try Fintepla (fenfluramine) for her child. They had just started a new medication and weren’t seeing any results. I told her I thought it was worth the try, but not to take Austen’s good experience as proof…
I saw a meme a while back that explains what would happen if a special needs mom fell into a hole and could not get out. Many people come across her in this hole. A family member asks her if it is really as bad…
My parents have always been doting grandparents. Since my oldest daughter was born 12 years ago, it has felt like Target’s toy department exploded in my home. Almost anything my kids have wanted, they have gotten — within reason, of course. Addi was 2 when…
Austen was 8 months old when we adopted Milo. Her seizures had already started, but her diagnosis was still a good four months into the future. We were on a journey that seemed to be hazed in fog at that point, and Milo…
Like many families around the world, my family is home schooling this year. My degree might be in elementary education, but even so, I’m a bit intimidated by the idea of teaching three different grades simultaneously. Add in that one child is special needs, and there was some…
This week, an all-too-familiar scene greeted me when I logged onto Facebook: a teenage boy smiling at the camera without a care in the world, and a message above his photo letting me know of another warrior gone too soon. I can’t tell you how many…
Last week, my daughter Austen and I were doing our normal before-bed ritual. We cuddle up together on the couch, and she plays on my phone while I catch up on an episode of whatever I’m binge-watching at the time. This is our special time, now that she…
Being a special needs parent is the hardest job I’ve ever had. I constantly feel like I am not doing enough to help my child. I not only feel guilty every time something goes wrong, I also feel guilty when things go right. A few months ago, while…
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