So I had a few blog posts planned, a few written, waiting in the quiver, but they just aren’t appropriate now.
You see, I’d made plans. I was going to go home to Hawai’i this weekend, and visit my family, who I’ve not seen since 2007. I was going to go to my brother’s jiu jitsu gym, and train with him for the first time. I was going to eat, a lot, and write a bunch of blog posts afterward, and launch my new in-the-works project. I was going to finish my time in the military, picking up a few degrees on the way. My family and I were going to settle down in a community, and actually get to know our neighbors.
Plans. They were good ones, and they have been voided. This happens. I am not in charge, and I accept that. I can usually roll with the punches, but it feels real hurty this time.
I got some bad news on Monday, and I felt depression setting in. Does it still count as depression if you know exactly what caused it? It suppose it does if you have a milkshake for dinner, which I did. I had been hoping for something for a while, and it became apparent it was not to be. Then the next day, I got the news: Paloma, who just turned 1 last week has Dravet Syndrome, which is a severe form of epilepsy due to a genetic mutation, which does not imbuing the sufferer with super powers as my previous encounters with mutation in popular culture have led me to believe.
It’s the same kind of epilepsy Charlotte Figi, of CNN’s “Weed” documentary has. Please watch this TED talk:
I felt stranded. I still haven’t cried, but sometimes it gets close when I’m explaining it to people.
So new plan- I’m a full-time special needs parent. My wife and I are not wallowing in sorrow, because we have a clear objective- convince the Air Force to let us move to Colorado, where we can get superior medical care to what’s available here, and be a part of a great support network.
To be honest, it’s nice to have a clearly-defined objective.
However,this care simply isn’t available to us. I’m not talking exclusively about medical marijuana, but I would like the option, and I would prefer it to the synthetic crap meds we are currently giving her.
What you can do- don’t stop loving us. I’m going to write a piece about this very soon, and pitch it to a website or two.