RIP Jett

I've watched the news unfold since John Travolta's son's death was reported. I remember when the child was born because he has such an unusual name (at the time, anyway. Who knew then that Jett would seem normal compared to Apple or Moxie Crimefighter or Pilot Inspektor?). 16 years have passed and the name Jett Travolta was not really on my radar screen. And then, he died. And all weekend, I knew the autopsy was today. So, without really thinking about it, I avoided the news all day. I guess because I was afraid the cause of death would all boil down to one word: SEIZURE. And it did. And this terrifies me. If it can happen to Jett Travolta, it can happen to Elvis. I'd hoped and hoped that we would find out that he hit his head as he fell. And I can explain that away because Elvis will never walk, so then he can't die like Jett did. But that was not to be. With that one word, my heart sank.

We do all we can to keep Elvis from having seizures. He sees his neurologist regularly. He gets all his seizures meds according to a strict schedule. We keep his daily schedule as predictable as we can. We do everything the doctors ask of us and yet, he still has seizures. They are considered "controlled" by the medication. He averages less than one a month and the neurologist is happy about that. Me? I'd be much happier with zero per month/year/decade. If I've learned nothing else from Jett, I've learned that "just one seizure" is one seizure too many. Not that I didn't know that before but it's been burned into my brain now.

So, rest in peace, Jett. I realize to most of the world your parents are a little odd, or could at least could be considered odd because of their non-traditional religious views. I'm sorry they felt the need to hide/disguise the true nature of your disability. However that is their choice and, since we live in America, that was fully within their rights. Despite all that, according to most reports, they were good parents. And they loved you and did what you needed. And they are hurting tonight because they have lost you. And that makes me really, really sad...and really, really scared that I could be in their shoes one day.