For Neavey's 9th birthday party we had a Cinco de Mayo fiesta. Her birthday is April 26th, but she was staying at her dad's house that weekend. So, the following weekend we did it up full on with Mexican dresses, sombreros, guacamole and Tejano music.
Her neurologist would tell you she has cryptogenic generalized epilepsy. It's not so much a diagnosis but a state or a condition. What does it mean? Neavey has complex partial seizures and generalized seizures. They originate generally in any part of the brain. And the kicker is...we don't know why she has them, or why we can't control them completely.
And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.
No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.