Once a year, in November (epilepsy awareness month), my wife Jessica makes a video celebrating another year of little Inara’s fight, and spends a few evenings making purple ribbons for people to wear, and many more evenings talking about epilepsy research and awareness. Epilepsy is one of the least understood health conditions. In far more than half the cases, there is no underlying diagnosis, no known cause for the condition.
Jessica and I are still working with geneticists to confirm a recent guess, but as yet Inara does not have a definitive diagnosis either. Just a long list of symptoms.
An estimated 3 million Americans live with epilepsy. Inara is one of them.
But she is very fierce, her birthday is in a few days, and we have much to celebrate this year. We were told that Inara would never stand. She is standing. We were told she would never walk. She is taking her first assisted steps. We were told she would probably never talk. Well, she is not talking yet, but she is building an impressive vocabularly of nonverbal sounds and signs, and we believe in her.
This is my wife’s tribute to our daughter and this year’s epilepsy awareness video. I’ll be wearing a lot of purple this month. Purple isn’t only the color signifying epilepsy awareness. In many cultures, it is the color of healing and life, the vibrant color. It is Inara’s color.
You can read more of the story of Inara in Lives of Unstoppable Hope.
Stant Litore is a novelist. He writes about gladiators on tyrannosaurback, Old Testament prophets battling the hungry dead, geneticists growing biological starships, time-traveling hijabi bisexual defenders of humanity from the future. Explore his fiction here. And here is one of his toolkits for writers, and here’s another book where he nerds out about ancient languages and biblical (mis)translation. Enjoy!
3 thoughts on “My Daughter’s Story: Something to Watch, Something to Remember”
Thank your wife for sharing this. I have a sister with epilepsy and a brother who only had it from about 13 to 16 and have seen a few seizures but I can not imagine seeing so many in a day. Especially as a mother. I really enjoy your work Stant and I hope you take no offense to this but your wife is way more awesomer than you! I should be HER patreon.
I don’t take offense at all. My wife is indeed way awesomer than me. I will make sure to share your comment with her! 🙂
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