Thursday, February 10, 2011
In case any of you missed me.
It's a jumbled mess in there you know.
Inside my head.
February 12th doth fast approacheth. All week long it has been weighing oh so very heavily on my mind. I haven't really had much to write about for weeks because of some of the other things going on, but with that date looming very close, I really have the wind out o' me sails of late.
Has it really been only that?
Has it really been that long?
Funny thing, the perception of time, isn't it? An event that occurred in your rear-view mirror can be perceived, simultaneously, as being so ancient that it almost crumbles if you dare to touch it or as fresh as a loaf of bread that was baked so recently it still has warmth to it.
In many ways, Bennett is one of the lucky ones.
SO many kids, so many...even the surgery kids, are still having seizures or are having seizures again after the parents thought the Seizure Dragon had been slain for good. It breaks my heart to hear about it, it really does.
Somehow Bennett has dodged this bullet. I do not know why. I'm grateful that he has. You have no idea. I'm guessing, because there is no explanation, but the one thing that sets his case apart from any of the others that I know of? He had a very specific and very rare type of brain tumor.
But like I said...I don't know.
The answer could be that simple. The answer could be that it just isn't his time yet and the seizures are simply lying it wait, like a very pissed off snake...all coiled, ready to pounce at any moment.
You. Never. Know.
It is...unsettling to be the parent of a child and always wonder what is inside his head that might one day 'go off'. You can get sucked into thinking about it if you let yourself. It is definitely something to fight against. Any odd twitch, change in this or that, you don't view the same way as you do anything else in life.
Funny thing is, I don't feel any Survivor's Guilt about his lack of seizures since the surgery. A lot of Father's might.
I do not.
I certainly am very empathic and concerned regarding the network of people in this sort of Brethren/Sistren circle that has formed in my life, don't misunderstand what I am trying to say here. It kills me, and keeps me awake and causes me tremendous physical stress. I am having unreal heartburn issues ever since I found out about Sophie's seizure relapse, I shit you not, my wife would be happy to verify this. I do feel their pain through this very strange, hard to define connection.
But I do not feel guilt. In these last two years I have learned one very valuable lesson. Actually, many lessons, but that is the subject of another blog. Or a book. But one lesson applicable here is this. I have stopped comparing Bennett's diagnosis/disorder/progress/development, etc. to anyone else's child and using it as any kind of measurement of weight to gauge how I or anyone else should live their lives or just 'be'.
Now that is horribly worded, and I need to refine exactly what I mean, but I am hoping someone out there understands what I mean. I've tried to say before that everyone has their own unique slice of Hell's Pizza. Well, I think I am actually beginning to really BELIEVE it and LIVE it now, and by doing that I do not feel Survivor's Guilt anymore.
And besides...Bennett has his fair share of obstacles in the disability department anyway, seizures or not. They are just...different than 'X's' or 'Y's' or 'Z's'. Hell...my 'normal' son has his OWN set of problems that are unique to him. As do I, as do we all.
Guilt in general about some other stuff? Oh FUCK yeah...have I got a story for YOU. But it can wait.
Until then, I just wanted to try to get back on the saddle, say hello, let everybody know I was dwelling in the negative a bit by focusing too much on this anniversary and chew on your ear (well, eyes) for a little while.