Thursday, February 10, 2011

Still Ticking

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.

Two years.

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.

You just...don't.

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'. '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.



  1. You should not feel guilty. Not guilty that your child stopped having seizures, that's for sure. And not comparing your child to other children is certainly a good idea. But sometimes you do have to look at other people (whether it be what their kids are going through or what they are going through) and think...I AM lucky. Even though I might be irritated at where I am (where my child is) in life right now, there's A LOT to still be thankful for (how about the fact that your child is ALIVE to begin with). And I think that's important. Very important. It gets you to stop dwelling on your own personal misery and see that things COULD be much worse. And for now anyway, they aren't. You have to enjoy the few good days you get and not dwell on the bad days. If I sat around thinking about nothing but Reagan's bad days...I would have already been committed at this point! Seriously.

  2. It's good to hear things have improved so much! Cautious optimism is understandable, but you guys deserve this recent happiness, however it happened, and should enjoy every minute of it. My thoughts are still with you guys.


  3. Thought of you all a lot during your silence, hoping you were just busy. I'm glad to know there's nothing major happening up there.

    I'm glad you don't feel guilty. I can't say what I'd feel if I were in your shoes because, well, I'm one is. I would hope I wouldn't feel guilty about something as miraculous as seizure freedom though(regardless the hand you're still being dealt). Yes, I said miraculous. It is.

    Good to hear something from you again.

  4. Glad you're back in the world of the posting.

    I'm delighted by your "slice of Hell's Pizza" bit. You're right. We can only really understand our own slices...and each bite we take can be the worst and the best we've ever had.

    Keep working to dodge guilt regarding the good and the challenging of etiher of your kids. If we're paying attention, guilt serves a purpose to teach us what to not do again. It's you teaching you. Survivor's Guilt is paintful, but ultimately not beneficial: those whose fate you dodged can't be helped by your guilt...and there's nothing instructive you can get from your misery, either.

    Empathy, however, is always the right course.

    Please take care...find some happy hiding in the mid-February funk. Hug your kids...

  5. That anniversary still resonates for me after all these years (June 14th, 1995 -- holy shit!), so I'm not surprised where you've been dwelling of late. That little Sophie's story is so awful -- just a screwy horror show, really -- have you heard any more news from them? I hope that a medication will help her so that they don't have to go through the surgery again. And as to your points about comparing -- that Sophie got worse on Vimpat -- MY Sophie is better on vimpat, the first drug EVER in her sixteen years of seizing that has helped her.

  6. I'm glad that you are letting go of that--we've all got enough on our plates without worrying about things completely out of our control.

    And I try not to compare my crap pile to other who got a "better" shake because I really don't know anyone's story in it's entirety--I only know pieces.


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