Journey to The Center of The Brain
I struggle all the time with trying to categorize things. Why I find this an overwhelming necessity in my life I am unsure.
Perhaps it is part of my own mental...issues. My desire to seek order in a world I find chaotic. Or maybe I just need to know where things are, or how they fit, since I never felt like I belonged when I was a kid growing up, either in Middle School or moving into Junior and Senior High.
I blended, I was one of those hybrid kids. Not quite geek, not quite popular, not totally ugly but not stud-muffin material either. But I was able to, like ze ninja, move quietly from one group to another, or at least this is what I told myself, and somehow I guess I made shit work well enough.
I blow it in all kinds of ways now though.
As a father, a husband, a friend. And a lot of it comes down to just not knowing who in the Hell I am anymore.Where DO I fit in? Where do any of us?
For so long now, I have always brushed aside so many aspects of Bennett's disabilities. And I don't mean I forget about them and their immediate impact here. But I don't saturate myself enough with them. This might surprise you. Some would say I champion Bennett with ferocity.
I don't see it. I wish I did but I don't.
If I did, why can't I devote this blog entirely to him? Why cheapen it, sour it, SOIL it with talk about comics, Scarlett Johansson, or my butt? And why do I hide deep within myself and never really study the nature of what an Oligoastrocytoma is?
Tomorrow is MRI day. Cleveland Clinic.
It is the first time I have ever had real fear that his tumor might be back. The return to diapers. The regression. The word stuff. And the study of the tumor itself. Why can't I accept that there is a 30% or something chance that it will come back? Why?
Because there is a 70% chance that it won't.
I hate this hope. I HATE IT. And yet I have it. All the time.
This may make no sense to any of you. And it rips away at me. But it's the truth. Because it is both good and bad all at once. It forces me to be optimistic and always fight for him, but it never prepares me for any of the worst of the possibilities. It never allows me to categorize Bennett. It never allows me to figure out how he 'fits' into the big picture. Is he a child with Autism, is he a child who is a Brain Tumor Survivor, is he a child with Epilepsy who has not had seizures in several years, is he a child with an unknown condition on the other side of his brain as yet undiagnosed and unidentified, an anomaly that baffles everyone who sees it?
Or is he just ...Bennett?
He is, but not finding the right groups to join and ACTIVELY participate in, the right causes to champion, makes me a worse Dad for him. And that's the problem with all of this. How do I figure out how to be in so many places at once, especially when I want to explore different treatments and options, and need to spread myself even more thin than I already am?
Fuck it...I am just having a bad day. I get like this a lot when MRI day comes. Who am I kidding, I get like this a lot PERIOD. These are the ups and downs of trying to be his Dad. And I haven't even begin to talk enough about Carter...my God...for every step I take forward with him I fall five steps back.
I just don't know what the Hell I'm doing.
Sometimes, I write blogs like this, and I never hit post. I have a shitload of unpublished blogs, a sea of them. But I have to stop doing that. Even though these are just momentary lapses of reason, I have to purge them. Otherwise they jam me up too much on the inside, and I carry it around inside.
Part of what I am trying to do lately is just change how I do things, everywhere. A bit at a time. Not sure if it will help me or not. But I'm trying new things and seeing what sticks. This is part of that. Not my finest hour as a blogger. But was talking about my rectum for an hour better? Probably not. Which, by the way, was a disaster. Turns out I have blood clots back there. UNTREATABLE. 6-8 weeks minimum of just me and a healthy does of massive discomfort and pain.
Sounds a bit like par for the course. Don't it?