The Joy of JOY
Life is kind of a drag these days...
And sadly, each day is usually a carbon copy of the one that preceded it. We get up, we take the kids to day care, we come home, we start work. We work, we grab a bite for lunch, we go pick up the kids from day care. We come home, we cook dinner, we eat, we feed the kids, we clean up. We bathe the kids, we watch some TV, we read some books or play on the floor. We go to bed.
Sometimes at night we take the kids somewhere, most times we don't. Weekends we try and come up with something to do, something fun maybe for the kids, or we do yard work, or cleaning, or visiting with family at some event. We don't go out together much, Jen and I, there just isn't a lot of opportunity.
Sounds like your typical, average, everyday life of a typical, average American family with 2 kids doesn't it?
Except for one thing...the seizures.
And that changes everything, and I have finally figured out exactly how it feels.
There is no sustainable JOY in anything.
See, I have a theory about the feeling of Joy when it comes to an activity. JOY, to me, is a reflective emotional state. So even the mundane stuff, the drives to day care, the visits, the playing, the dinners, the cleaning...when you have a real sense of contentment in your life, you can locate and stimulate the good parts that exist in the simpler, less razzle-dazzle things and they then become...enJOYable.
You get something out of them, laughs are generated, smiles exchanged.
You have some fun.
But seizures are a happiness and contentment eliminator. They suck any JOY out of your life, period.
And since you never know when a cluster of the little bastards are going to reach out of the darkness and bitch-slap your precious child, you live on the edge of...well, something. Something not able to be defined clearly by me yet. Mainly that is because I don't really know what lies on either side. And if I don't know that, how can I know what the edge is an edge of exactly? Hurts your brain to try to figure out what I just said, doesn't it?
And what is JOY exactly? We use the word a lot, but what does it really mean?
JOY: \ˈjȯi\ noun
1: the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires, delight, the expression or exhibition of such emotion, gaiety
2: a state of happiness or felicity, bliss
3: a source or cause of delight
The use of the word bliss is a good one, because that to me describes a lot of what JOY is all about. Blissfulness, delight, success, good fortune. All things that seizures eliminate, all things that the fear that accompany them tend to swallow up. But that 'possessing what one desires' is key, ain't it? Cause want we want to possess is currently, when it comes to Bennett, just outside our reach.
You can find JOY in cooking, JOY in cleaning, JOY in reading a book, JOY in sex. The simplest things in the world can and often do become the most joyous, the most desirable, because JOY seems to favor simplicity, doesn't it? Basic things.
And seizures and their end results? Far from simple. Super complicated. JOY-less.
Yeah, JOY can be found in just about anything you do, because JOY is pretty much a reflection of your inner attitude, your sense of blissfulness, delight, success, etc. that you put into it. But there is no JOY in this house, in our lives. We lack that because of what Bennett is going through, and no matter what we do, we can't seem to generate it. So when there is no JOY in us, there is no JOY to be found in anything around us.
But that's the REAL kick in the ass...even when we CAN generate it...we cannot sustain it for any great length of time, because sooner rather than later a cluster of seizures appears and shits all over everything.
That's harsh, but that's the way it is.
I have a hard time verbalizing that effectively to people outside my Infantile Spasms family. Those folks understand exactly what I mean, my IS Brothers and Sisters, those people will inevitably read this and nod their heads and say yeah...that pretty much sums it up there Lilly, ya blogging bastard.
But those outside that circle? Man oh man, do I have a tough time explaining it. It's getting to the point now where I don't try so much anymore. Used to. Stopped. Some get it, don't get me wrong. And by 'get it' I mean they have some idea...but even those people with whom I communicate the most will, by their own admission, suggest that they will never REALLY understand, since they have never gone through it.
I understand that, and bless them for trying so hard. They're good people. I'm very sad that as each day passes I am becoming more and more distant from them. It's one of the casualties or the Seizure Grenades that get tossed into our house every day.
So that's it, another Blogzilly entry focusing exclusively on the negative. Aren't you glad I went back to blogging about Bennett and all this bullshit again? Or would you rather see the cool Kubrick figures I got last week? Hell, even that kind of stuff has no JOY in it for me...I do it out of habit.
I'm hopeful that one day, things will be different. There's that damned hope again...Hey Hope? Sometimes you're a real asshole, you know that?
I hope that one day, things will be better for Bennett and we won't be watching him have seizures and feeling every single one of them as deeply as anyone has ever felt anything.
And I do use that hope to cling to the basic elements of life, I really do. Barely. It makes life tolerable enough, even though most of the time I do not feel alive. But I manage. And trying to keep hope nurtured helps a lot.
Like I've said many a time...I'm envious of any of you that have kept your Faith. I have not, and there are times I miss it...a lot. Faith can often be a substitute for JOY, and hell, sometimes people use their faith to generate JOY. Why do you think so many of the songs in church have the word JOY in them? Because JOY is about a purity and happiness of inner self, and Faith nurtures that.
Oh well...it's Thursday, and a weekend approaches. The dreaded weekends...our least favorite time because of the frequency of our seizure exposure. Oh well...in a few more days we will at least be able to be happy that it's Monday.
How weird is that? :)
Well, as I am often prone to do, I remind myself...could be worse...