I like rain. I like overcast days when it’s going to rain, but it doesn’t feel gross yet. It’s as if the sky is wearing sunglasses, and telling you to take it easy. It’s the sky, right? You HAVE to listen. So I have been, ferreting out a pair of sweatpants and drinking too much coffee.
My wife, Lindsay, has restructured her blog to be focused on Dravet Syndrome and chronicling our journey. She posts more frequently than I, and her fantastic writings can be found here. We will be writing posts for each other’s blogs in the future.
Since my last post, I’ve had two more pieces rung on The Good Men Project. It’s great to be involved with such a great group of people- that’s a facebook group for the writers, and the conversations are witty and sharp. I need that. I need to feel connected, even if it’s over the internet. My writer’s page can be found here.
My blog is in flux, I bought a professional theme that simply just does not work, so I went with a clean minimalist theme, but it keeps changing my title font to Comic Sana, which I totally disapprove of. Please don’t judge me on the font selection.
I picked up a good piece of advice from one of the GMP writers- do not respong to article comments, especially on facebook. People have left nasty comments attacking me as a person, my likes and dislikes, my ideas, but strangely, not my writing. It doesn’t hurt, but it is frustrating, because it’s apparent that most of the comment-leavers have not read the article, but still have strong opinions about the headline that must be shared, even though their concerns are often addressed in the opening sentence of the piece. Oh well, at least I’m a blogger/writer and not a youtube video creator- the comments there are a cesspool.
In other news, it looks like we’re going to get to move somewhere we will be able to get better support for Paloma. We’re pulling for Colorado, but it’s left to the cold, calculating hand that is the big-picture, money-on-their mind-Air Force. I wish there was more info to share in this regard, but there isn’t.
Our current neurologist is not incredibly helpful, and he’s an awkward communicator. We asked about seeing a genetics counselor, and he assured us it wasn’t an issue unless we wanted more kids. We absolutely don’t, but made the appointment anyway, because we are stubborn asses, and it was illuminating. The genetic specialist took the time to explain things to us and gave us a bunch of information about how to volunteer for clinical trials and found specialty clinics for us. We are looking forward to employing this knowledge.
Babygirl is doing well, she is starting to take a few steps, falling on her bottom, and applauding her effort. It’s bittersweet to watch her develop, as I know Dravet kids often progress until they are about 2, then degenerate, sometimes losing the ability to walk, talk, crawl, or communicate with hand gestures. Plus, you know, there’s the whole sudden death thing. It’s important for us to not dwell on the negative aspects and stay motivated to fight, network, be involved in advocacy, and mentoring the newly diagnosed. We will get through this as a tribe.
Also, I have not done jiu jitsu in over a month, this is not my choice (see post re:Plans). I’m much better at exorcising frustrations and anxieties on the mat then on here, and I’d be lying if I said I was satisfied with my rate of progression. I don’t like it but I take ownership of it, and I’ll fix it. I will one day be a black belt. It will be a long time from now, and that’s okay. I love BJJ, and I know I will be involved with it in some form for the rest of my life.
How’s your Sunday?