Ok, so maybe the word "desperate" is a bit misleading...
But let's be honest: I haven't had the easiest year with Michaela. In fact, this past year has beenthe most stressful she's had. Chief calls her health state, "Like balancing a dradel on fishing line."
I'd say that's about right.
Said "dradel" has caused me quite a bit of mental anguish, I guess you could say. I can't seem to get back in my "groove." Which, for me, is the everyday humdrum of regular life. The expected, the mundane, the normal.
I just don't know normal anymore. And I certainly don't feel it.
Example #1: I was asked about going on a little trip with friends. Sounds fun! Very normal! Wait....can I even pretend to be able to plan for such a thing? This trip would be weeks away...
What in the world will I be doing weeks from now? Will I even be HOME? How can I plan for something weeks from now? For all I know, Michaela will crash on me again, and I'll be rushing to find babysitters, not enjoying a trip with friends.
I am weary just thinking about it.
Example #2: We went to the ER on Sunday. Why? Because something just wasn't right about Michaela. Again. And I honestly couldn't tell you what it was, but it was mostly gone by the time we got to B'Ham. All I know is that she was MESSED UP that morning: puking, walking like a drunk, weird glazed over eyes. Chief said her Depekote levels were too high. Thankfully, a quick fix. He sent us home (amazing....home on the same day...what a concept!)
But you better believe I was packed for a 2 week stay.
Oh, I'm good at it now. I probably packed everything I needed in like, 10 minutes.
This is just not normal. Paranoid, yes. Normal, no.
Example #3: I was actually thinking today about putting Asher in the local school Kindergarten class instead of homeschooling him myself. Why? Because he started Kindergarten last year, and you all know how that went.
Yeah...he got maybe 6 weeks in. So we have to do it again.
But I seriously don't know if I'm going to be around enough to teach him K5. The other children are fairly self-sufficient in their studies. They do video school (thank GOD for the foresight to pay for those courses!), and whoever is the closest adult can answer their quick and generally benign questions. But Kindergarten? That's a full-time job for me right there. When a child can't read, but is learning to, there is a LOT of work involved for the teacher/parent.
How do I know I will be able to get him through this grade? When will her "year of crisis" end? Why in the world am I considering sending one of my children to public school? I've NEVER wanted to send them off to school!
God, help me. I'm drowning in the Abnormal Sea of life.
I don't know how to do normal anymore!
So, I said all that to say, that things just are weird for me right now. I have lots of updates on Gabe and his condition, but I just can't get around to blogging about it yet. It's no big deal in a lot of ways, but it stresses me out, and I'll probably cry through the whole post, and y'all will look at me like I have 3 heads and wonder what in the world has gotten into me. Especially when you learn what I'm crying about.
Because it's honestly no big deal.
But I'm just not normal anymore, I tell you.
I also decided that I can't stand Blogger. HA! No, in all honesty, Blogger is great. A good platform to work with. But what I've come to learn over the past year, is that sometimes I just don't like to write. Sometimes I do, and that's fine. But sometimes I don't.
Yet, when your kid is sick and in the hospital for all eternity, not writing about it is somewhat cruel and unusual punishment for your family and friends who live all over God's green earth. It really isn't an option.
Well, unless you want to repeat yourself 100 times a day. Which, I do not.
But this blog has morphed into a creative outlet for me. A demanding, neurotic creative outlet. What I mean by that, is this: I can't stand to post on here unless the writing is top-notch. It has to be right. Every time.
I don't know how or why that started, but it has, and it can be very binding and stressful. These posts can take some serious time. Time that I simply don't have.
And with Michaela, things can and do change so quickly, that this format is unpractical for me to keep everyone updated.
I used Facebook for a while, because that was a really quick and painless way to get the updates out. However, I soon learned that many people actually have a profound distaste for all things Facebook. People who were pining to know what the latest news was.
So I added a Twitter account. Which also updates Facebook simultaneously (ahhhh...the joys of modern technology!).
But then I got too bound by Twitter's 140 character limit. YOU try explaining some of this complex stuff in 140 characters! It's insanely difficult!
So now, I've come up with a better solution: Caringbridge. It's a medical journal platform that can keep everyone updated on Michaela's health whenever I have news to share.
And you know what? I can update it from my iPad or iPod, and I could care LESS if there's typos or minor mis-spellings. (Yes, the blatent ones are still a huge no-no....just.can't.do.it!) It's just a quick and easy way to write as little or as much as I need to about what's going on that moment.
No storytelling or creative writing needed (although you know I can't get away from that completely...it's just my nature). I just say, "Hey guys, this is what's up right now. We're waiting on labs."
The end. Period.
Yeah, I know it's kinda desperate. But right now, I'm just busy trying to make sure that little dradel doesn't tip tooooo far over. And in the meantime, I'm making things easier for me, so my head can stay in the game.
Because really, right now, my brain is fried. Toast.
I'm just not normal anymore. So forgive the desperation. But visit us over on Caringbridge anyhow...because normal will come back someday, and if I don't post about it here, it'll be over there :)