Man, this last weekend just sucked. No pretty way to say it. Bennett's seizures are more intense and more frequent right now, and they have a tendency to suck the life right out of both Jen and me. It's actually EASIER for us (as far as managing our emotions surrounding Bennett's condition) during the work week if you can believe that, but maybe that is because we only have to see his seizures in the evening, we're semi-distracted by our jobs, and by the time Bennett is back home we are pretty wiped out anyway.
The key though is seizure exposure. The more you see of them, the more they affect you. So since we see less of them during the work week, we are less consumed by them. We still are, don't get me wrong, but there is a wee bit of a difference when you aren't exposed. But on weekends? We get to catch 'em ALL.
That reminds me for some reason of that Pokemon Seizure Debacle in '97. Anyway, during weekends of late, and especially this past weekend, we are totally unmotivated to do ANYTHING except lay around, do only those things that the kids need, and move about the house like zombies, just waiting for the next set of seizures.
It's pathetic really. But when we try to get a positive groove on, and we do try, it will last for a couple of hours and then SMACK...seizure comes and takes you RIGHT out of the moment. It's actually remarkable, if you have never experienced anything like it I figure it's hard to explain, but those who HAVE experienced it know EXACTLY what I mean.
And we are so different in how we go about our daily lives right now, Jen and I. We don't clean like we did unless it is areas that the kids play in, we don't plan to do stuff like we did unless it involves the kids, we don't even really shop for groceries like we did...we'll get what the kids need and we'll just get whatever for us. But therein lies the jist of a new 'situation' I am seeing gestate in our house, growing slowly, like a mold.
In the current emotional climate, she and I don't care as much about US. Just them. Maybe 'dont care' is too strong a phrase, because I think we DO care. I know I do, and I believe she does. We care about US, but we just don't TRY anymore to nurture the US.
Carter spent the night at his Aunt Mandy's on Saturday night and Jen and I still sort of just moped around here like zombies then too, since Bennett had another cluster of close to a hundy in the early evening and some of the plans we made, like trying to go out to eat, maybe taking Bennett to the mall or the toy store, maybe spend some time together watching a movie or whatever, we ultimately just said fuck it (we say that a lot) and spent the rest of the evening watching TV and barely speaking to each other.
We are there for each other in some ways...on Father's Day when I lost it again and cried like a frakkin' baby she comforted me. When she needs a hand with Bennett or some words of encouragement I give the hand and I give the words. But I can't deny there is something missing between us these days, and I can't honestly put my finger on exactly what it is.
But it's growing. We don't really fight a whole lot, argue I mean, though we do snap at each other more than we used to. I dunno, our existences are just defined by this THING, and little by little it encompasses more, not less, of who we are. We don't laugh together the way we used to. We don't smile at each other as much. We don't talk about the future of our children and our family, because we are scared to death of the future.
We both work from home (this is for another blog entirely, but this is NOT a good thing for either of us emotionally at the moment) and as we pass each other during the day on our way to the bathroom or in the kitchen for a beverage the topic of conversation is always about Bennett and his status, Carter and how he is doing at school, or our jobs. That's it.
We've lost something, something I am starting to really miss and really need, and I don't know how to get it back while Bennett is still seizing away. Because no matter what I do, or what she does, to try to make any kind of connection with each other it all comes crashing down in a few hours, when we see Bennett have another round of heart-breaking seizures.
And I didn't choose that word, 'heart-breaking', lightly I think. I think I picked it out of all the possible adjectives because of how it does wreck our healthy emotions, those emotions attributed to the 'heart', essentially every day. Bits and pieces of this epileptic shrapnel tear into us and leave very little room for anything positive for ourselves, and especially for each other.
I think we'll get through it. I do believe that we'll learn how to navigate all of this at some point. Just like I believe, deep down, that I will get through this with Bennett and that he has a good chance at living a good life. But hope is very hard to hold on to every minute of every day.
And I just miss her laugh.