I don't mean the best plan to make for getting laid, I mean that you start out planning to go one way and then end up going another. I had started this blog actually earlier in the day, and I was planning to talk about upbeat things...
But it's difficult, when you are going through a thing like we are, with a child who has a severe illness, to NOT focus on the negative parts of life. It's where you are in the head. You try very hard not to, you try to cling to the good and minimize the bad, but you do spend most of your conscious time feeling down.
Consequently, if you are a 'Blogger' or if you keep stuff updated on something like Facebook or Twitter, the flavor of most of your posts is going to be negative as well.
So I was gonna buck the system tonight, I was gonna say 'TO HELL WITH THE DOWNBEAT STUFF'. The PLAN was to talk about some hopeful subjects like Sophie's surgery or Danielle's new nickname, or even the stuff we have planned for this coming week in Detroit, and I also planned to show some video I took today of the kids. Not video of a seizure or anything like that, just them 'doing what they do'.
I shot the video during the morning, thought about what I might say in the blog which I intended to scribe after dinner, but then, of course, a mighty cluster of seizures ROARED in out of NOWHERE during said dinner. The seizures were so bad that we needed to get him out of his high chair so he would not head butt the high chair tray and wind up with a face covered with pieces of cut-up cheeseburger.
Now he's off to sleep for a while, and Jen is trying to catch a quick 20 minute power nap. Carter is back to his 'movie' he wanted to watch, and I am sitting in the middle of the kitchen, alone, the sound of Top 10 All-Time Dallas Cowboys on the NFL Network softly in the background (Tom Landry number 1? COACHES SHOULD NOT BE ON THESE FUGGIN' LISTS), surrounded by the remains of a deserted dinner, that nobody really felt like finishing and I don't have the energy to tackle cleaning up at the moment.
That is the way people like us live right now. There is no 'normal' activity, not when, at any time, something can just happen to turn everything on its ear.
But there were those moments today, when Bennett was awake, that were special, that were funny, that were charming. Carter made me laugh quite a few times until later in the day, when he decided he would not nap and then turned into the Mirror Universe Carter. The one with the goatee and the Agonizer.
But there were good moments. They DO happen. They are just so much harder to appreciate after a dinner like that.
Like this one...Carter and Bennett interacting a little while Carter watches cartoons on Saturday morning.
I just had images of that pretzel causing a Rancor moment and locking his jaw in place, so I had to grab it and exchange for something else.
Or this one of just Carter, mainly for you, Mom, until you get your Skype and camera up and running...
Or this one, of Bennett. No seizures, just him exploring. He is actually being even less jabbery here than he had been but I wasn't able to get it on disc. I do see how he tries to process the word 'Dadda' and eventually does. But when he does, he smiles.
Which of course always makes me smile too. What a precious boy, he does NOT deserve what is happening to him. But then again...who does?