Kids and Jennifer are out of town for today and part of tomorrow, and I am alone here. How did I spend my Saturday morning? Seizure research. I know, I know...try not to be too jealous. Many of you are probably thinking...DAMN, I wish I could be doing that.
But this is how I live my life right now. Free time is not me time. If I am not working, I am either researching stuff about doctors and surgery and epilepsy and all that, writing a blog, communicating with my IS Brothers and Sisters, doing household stuff like laundry or cleaning, watching and working with Bennett and recording his seizure events, or hanging out with my family and desperately trying to salvage my relationship with Carter.
Beyond that, there is little time for anything that I would consider is just for ME.
Maybe I'll watch some TV, but I do that WHILE doing one of the above or much later when I'm too damn wiped to do anything BUT that. Maybe I'll flip through a book, but I do that WHILE doing one of the above. Maybe I will read some blogs and look at some stuff on the internet, but I do that WHILE doing one of the above.
I don't exercise any more. I should.
I don't take very good care of myself with food that is good for me. I should.
I stopped cooking meals comprised of straight-up meats and veggies and have begun to rely too heavily on frozen stuff and Take-Out. I should not be doing that. To me OR my kids.
I don't play any video games on my X-Box 360 anymore. I should.
I should be playing video games on my X-Box 360 with Jessica Alba.
I don't plan and get involved in any home improvement projects and don't take care of the house from a maintenance perspective. I should.
I barely find motivation to dust and vacuum. I should.
That's right...drink it in ladies...
I don't take the kids out to a lot of places anymore. I should.
I find that difficult. I shouldn't.
Several weeks ago, all four of us got in the Lillymobile and went to a, whatever you call it, some place where they sell all kinds of trees and shrubs and shit. Hell, I don't know...I am LOST when it comes to man skills. I can mow, edge and trim and pull weeds. Beyond that I'm an idiot. Not like THIS GUY. He's a backyard GOD.
Anyway, we were looking for some solutions to some landscaping issues. After going there we went to the local Meijer (for you non-locals, it's like a Target or a Wal-Mart type of a place...a place you go that has a little bit of everything) and as we were getting checked out I saw the aura in Bennett, and took him out to the car.
He has a few moments sometimes before his seizure clusters that can be a pre-warning to me that a cluster is about to occur. It's subtle, and many people can't see it. I can. It's my job to. And I am best qualified because I am obsessed with understanding and explaining that which cannot be totally understood or explained. He had his seizure clusters on the way home in the car seat, and it was VERY important to me to get him out TO the car, away from anyone else, so he could do it privately and not be the center of attention.
Is that fucked up or what? But it's how I feel.
I hate...HATE, when people 'gather round' to watch the little boy jerk away. I know that these people, so far mostly family, love Bennett and want to help him and it breaks their heart as much as it breaks mine, but I just haven't gotten my head around it as a public event yet. I was so used to people watching Carter and all the amazing, advanced things he did and marvel at them.
It's just an entirely DIFFERENT feeling when you have a boy in a group of people now who is not being marveled at but rather sort of 'studied' and it's like having a bottle rocket in your pocket with a delay fuse and you aren't entirely sure when it is going to go off and when it does everybody stops to see the fireworks.
Anyway, until I can get my mind around that and get comfortable with it, I don't like being around it. But on the other hand...not fair to Bennett, ya big dummy. He LOVES being around other people, so does Carter, and as I sit here on a Saturday afternoon typing in my darkened office with the shades drawn basking in negative emotion, they are both probably basking in the warmth of the sun or resting in the shade on a cooler, less humid June afternoon around a large campfire pit smelling of whatever is cooking on the grill and trees and grass and playing with other kids or just running around and playing and exploring.
Until Bennett seizes. He'll have fun up to that point. He will verbalize...not actual words per se, but sort of, and he'll make noises and sounds, he'll use consonants and stuff and babble, he'll run and play within his limits (and there are some serious limits according to the Occupational Therapy Evaluation Report that I read this week). But he'll be doing what he does, enjoying the life around him, and then he just won't be.
Everything just stops.
Except the seizures.
They don't stop. And it doesn't matter if we are alone in the living room, or if we are in the midst of a bunch of people. The seizures are always going to be there. Until they're not. (Yes, I still have Hope...)
But when people are around, and by people I mean people other than me, the grandparents, Carter or Jennifer, it just feels weird to me. Like some kind of Carnival Freak Show, right down to that music they use for Jackie Martling's theme on the Howard Stern Show.
Step right up ladies and gentleman, boys and girls, lovers of the strange and unusual! Friends, he was once a normal, engaging lad...he was the beautiful boy with so much promise and potential! The Future...a golden egg that he held in the very palm of his hand! Until...the Fates dealt him a dastardly devastating disruption of his brainwaves!
That's right! Closer please now, step right up! It's only two shillings to enjoy the educational experience of a lifetime! Careful, careful...not too close, he has to be placed in this position for safety's sake, folks! It's a state regulation! Not that there's any cause for alarm! There have never been any problems, but you never can tell! Accidents do happen! Just in case, you should take note of the emergency exits here and here. See the illuminated signs?
How he got this way will never be known. Some say he was born with it, others whisper that it was caused by a vaccination gone horribly wrong, others say it might have been an injury! Believe what you will! But whatever you believe, BEHOLD...the Curious Case of the Convulsing Kid!
And that's my problem, that reaction. Not Bennett's reaction, not anyone else's reaction. My stupid reaction and concern for feelings that Bennett certainly does not have, nor those around him who care for him. It's just my stupid, over-analytical, over-processed, over-blown, over-emotional reaction.
I know that I need to get past this feeling, this hurdle, this thing that keeps me trapped mentally and physically. I just don't know HOW yet.
And here's a new wrinkle...
I don't want Bennett to be treated as if he is different but he IS different and I also want him treated differently.
Um...What!?!? WHAT NEW CIRCLE OF HELL IS THIS?.
Yeah I know, it makes ZERO sense at all. I don't even know what it really means. These are waters I have never navigated before, and I feel a bit lost at sea. I do not know how to act and re-act, how to feel or respond from one situation to the next. There's no manual for this, no guidelines. They don't teach you this crap in school.
I just should have gone. Should have sucked it up and gone. Yeah sure, in the old days I stayed back because I cherished time for ME. But now, I don't really have anything that interests me other than fixing my son, so ME time just becomes time to sit around and feel like Grade A Shit.
Yeah I'm doing some cleaning, yeah I mowed the lawn, yeah I did the trimming and yeah I burned through nine loads of laundry and yeah I vac'd the house and yeah I am 'getting things done'.
But I could do that this upcoming week in the evenings. I should have gone, I should have been with my family. And I miss Bennett like CRAZY, despite the fact that I spend almost every night right at his side until he goes to bed. I miss Carter and Jen too, don't get me wrong, but with Bennett remember...DIFFERENT but also NOT DIFFERENT.