Tuesday, June 23, 2009

House of the Dead

This was actually to have been posted on Tuesday, but I forgot to hit 'Publish Post' instead of 'Save Now' for its scheduling. Since I did not have net access while being out of town for a bit I only just noticed it, so it has been re-initiated today even though it has Tuesday's date.

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.


  1. It's tough with everything else going on to be "just a couple". You need to work at it. Institute a mandatory date night (or date lunch if easier) and veto any and all seizure talk. You seem to have good family there who can help you. Devote a couple hours to just the two of you. You need to both be strong, as individuals AND a couple, to get through this.

  2. It happens to an extent with every couple, I think....So don't think you are unique....Actually, MY marriage ended before "the Beast" hit...We were just dealing with the non-ambulatory, non-verbal, incontinent, severely mental delay and thos 3 grand mals years earlier....My ex got into drinking and drugging and strippers(spending $1800.00/night on them) and racking up $200,000.00 in debt before I finally kicked him out...I honestly can say our breakup had NOTHING to do with Colby...He ALWAYS had issues...But I can tell you right now, my WHOLE ENTIRE LIFE is wrapped up in the seizures....I wouldn't have ANY time for a husband...I rarely leave the house and am SO THANKFUL that Walmart and my grocery are open until midnight...So nurturing a relationship under these circumstances seems nearabout impossible...

    The best thing I think you and Jen can do is to ACKNOWLEDGE what is going on with each other in regards to Bennett and his situation....Talk, talk, talk about it and make a vow to protect it...You CAN'T have the same marriage as you did B.S....(Before Seizures)....It, like everything else, just has to be different....And it is hard to adjust and sad to see how you once WERE and to go through changes....

    But you CAN make it, I truly believe...Y'all just have to recognize it first, which you have already done....Keep telling each other exactly what you are feeling (which isn't easy at all sometimes)...And vow to PROTECT your marriage against the Beast...You KNOW this will stress your marriage and that everything becomes fragile...But from what I have seen, you two CAN and WILL weather this...You already have a really good start...

  3. I can understand. It can be amazingly trying. My unsolicited advice? Tell her that you miss her and that you don't know what to do. Tell her you think she's awesome. Tell her you think she's a great mom. And that you are proud of her. Every chance you get.

  4. Awesome post with awesome writing. Will she read it? It might help her to know where your head is. I also must say ditto to the other comments so far...especially to philnjill! Couldn't have offered any better advice than that (other than to ... well ... pray). (Please don't send any zombies to eat me.)

  5. "Us",gets lost when living in the place your living.Where,whether you want to admit it or not to each other,life centers soley around the one that needs you the most and in your case, Bennett needs you the most.And as he needs you more and you worry more and you are filled with more of the bitterness,it eats at a little more of the "us".There is a reason that divorce statistics name medical crisis and financial issues as 1 and 2 reasons people go their separate ways.We lost our home and savings through NICU hell and never recouped before leukemia struck.Stress in our house is palpable,trust me.But heed the advice of philnjill,some really,sound simple advice.You will get through this.There is the other side of this and when you are in doubt,go to that deep down place you talked about and keep repeating that Bennett will be okay.You all will be okay.Do not allow another casualty of this battle to be your happiness.Then it wins.Dora's dad's advice of praying wasn't so bad either ....

  6. There is nothing that I could possibly tell you that you didn't already know when you wrote this entry. In your heart, you know what to do.

    I'll sit here in silence supporting you while you listen to your heart.

  7. I've often thought of that little saying "what doesn't kill you makes you stronger"... I'm not a cliche girl. But I think there's some truth in there...

    And btw...I do know EXACTLY what you mean. I think I suffer from sympathy post-ictal-ness...to a much greater extent than Trevy!


  8. I read this post yesterday, but didn't want to comment until I had more time...it deserves a whole hearted one.

    This disorder is consuming. Positive energy draining. It's nearly impossible to dedicate yourself to anything besides Bennett and seizure thoughts right now. And when you do find a good distraction, it can be short-lived if a cluster strikes. They always seem to be lingering around the mere thought of a happy moment.

    That's why occasionally I get my mom to keep Austin overnight. It not only gives the hubby and I time with each other...but I get to not see seizures for one night. That works wonders for my energy (physical and emotional). We just need a break once in a while.

    And I'll be damned if I let this monster of a disorder wreck my marriage!!

    It's not easy. Even the strongest of marriages will be challenged in the face of something like this. Everyone will react differently...mourn differently...feel differently. I think part of it's finding the balance it takes to meet each other's (different) emotional needs that's so frustrating.

  9. Jen:
    Yeah, we do need to try to make plans. The biggest issue is not finding folks to help us, it's finding our OWN energy to DO it.

    Yeah, appreciate that. Can't imagine flying solo for as long as you have. Colby certainly benefits from your mad Mom skillage.

    Yeah I do say those things and she to me. Though sometimes I do wish she read my blogs more. Just not her thing.

    Nope, probably won't read it. Maybe, just not sure. She reads about 40% of them overall. And the zombies are on their way.

    It's a difficult, delicate balance I'm sure. Everybody has great advice.

    You're right. I knew what I needed to do. I went and got myself a new radio controlled car. WOOHOO! I'm having a blast with it! :)

    Isn't it interesting that nietzsche and cliche are so similar?

    Well put. I think as we get further into this we will find those moments more easily.

  10. Ken, I feel for you.
    It doesn't even have to be something as serious as a sick child - I found I was losing touch with my wife, because we were just on different schedules. I've been taking night classes to finish my degree (and it goes into all days of the week to keep up with the classes) and trying to produce an independent film, and she's been working 60+ hour weeks and feeling stressed about keeping the house clean and my daughter's future, etc.
    One of my best friends recently broke up with his wife (or moreso, she broke up with him). He ran his own business, putting in hundreds of hours over a normal workweek, and in the end, it broke them.

    You have to make time for you and your wife, to just be together and try not to make it about anything else but you two. I really hope it works out.


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