Sunday, September 27, 2009

Welcome to The List of The Shit in My Head

You know it's been a very long time since anything related to my family or how we feel or how Bennett is doing has been on this site when you get a phone call from your Mom, wondering if everything is OK. And that's from your MOM, who already has the inside scoop on most of your life, what has been going on in it, and what has been going on around it.

I can only imagine what some of you might be thinking, especially those who only get information from here and no where else, or those of you who know one simple truth, things have to be weird for me NOT to be doing something I really enjoy, and that's writing.

Things have been weird, things have been hard to navigate, and consequently my head is in a place I am not familiar with. In fact, it's still so scattered, still so all over the map, that I don't know how easily I can craft THE piece of writing that will sort of weave a tale and get everyone up to speed on where where we are.

So instead, I am just going to randomly share some things, with no plan for structure or storytelling, I'm just going to write a list of what's eating at me right now and see what happens. In cases like these, where you have some things blocking you in the head, it's the only way to go.

1. Been sick. Me, that is. Thankfully no one else has picked up the cold I have, which started to tickle at me on Thursday and attacked me fully on Friday and into today. Though I will say this. MAN OH MAN is a cold easier to deal with than the old days when cigarettes and I used to be partners. Coming up on a year now of no smoking, and the way my body processes things like a cold is so totally different it's like night and day.

2. A member of Jen's family has been diagnosed with stage 4 lung cancer. I am not going to reveal who unless I have permission, but we've all known for a while, couple of months in fact, and not being able to talk about how it affects us and how we feel and navigate our lives is not helping. It's very hard, on everyone, and it sucks. I can't express enough how much I hate Cancer. Hate, hate, hate.

3. I know the power of positive thinking is important, but why does it seem to me that everyone I know, in some way, is having a shitty year? Is it just my perception of life affecting my viewpoint or is it really just a bad year? I know very few people who I would look at and say...'Now HE is a happy guy/girl!' Why is that? Is it the filter I use because of what is going on around me, or is something really off about this year in general?

4. My son Bennett had brain surgery about 4 weeks ago. He hasn't had a seizure since August 28th. I should be shouting this from the rooftops and celebrating how great this really is. And yet I find myself embarrassed to go on the old message boards I used to go to, I find myself feeling horrible beyond belief to bitch about anything with Bennett while I see and hear my friends who still have not achieved any seizure freedom. Their pain is so real. Though they would be the first to tell me, and have, that I should not feel this way.

5. Consequently, as a result of that brain surgery, I was expecting Bennett to amaze me, like a circus monkey or something. I figured he would be all kinds of progressive and cool with learning this and learning that and doing new and amazing things. That isn't happening. He doesn't mimic the way I think he should, he doesn't act in ways I thought he was supposed to. Maybe his mind will never snap back, maybe it will just take time, and maybe I am Mr. Asshole of the Universe for having any expectations at all right now. I just don't know what to feel about it, and it's been weird for me. Then there's that guilt thing...he doesn't have seizures any more, but that's not enough for me. Selfish or just wanting the best for my kid? He's going forward by mere inches, and I want yards. This makes me feel like a jackass a lot of the time.

6. I don't know how to wrap my head around this whole brain cancer thing. Am I supposed to go down that road now? Because I am avoiding it like the plague. And since I am not really going out to try to find boards and stuff about that and possible outcomes and I am seemingly ignoring the fact that he had a very rare brain cancer just removed...what does this say about me?

Is it fear, or just a reluctance to face The Truth? What the hell is keeping me from actually opening that door? Is it going to take a return of the tumor for me to enter that world? That world is a frightening place, but not necessarily less or more frightening than the world of epilepsy and Infantile Spasms. Am I a coward for avoiding this or is there some other thing at work in my life that is somehow forcing me to back away in fear?

7. Why do I have such an anger toward anything related to God lately? I've witnessed things that, in the old days, I would consider miraculous. Hell, I have a few stories I could tell you that the devout would say 'WOW, if THAT isn't the hand of God I don't know what is!' I used to believe that too. Why am I so quick today to turn away from it, to wallow in anger about refuse to acknowledge the divine, when I used to be able to do so rather easily?

8. In the last week of July, my wife and I conceived a third baby. When we finally found out, in late August, we were blown away. When her period was late we attributed it to the surgery stress, but then she took some EPT's and got the positive results. During the first week of September she proceeded to take 5 more tests, all positive, while waiting for an appoinment with her OBGYN to get final confirmation.

It was beyond belief in many ways, the ONE time in maybe four months of the most stressful time in our collective universes we actually found time to be a couple resulted in a conception. This, too, like many other things this summer, has been kept under wraps, not to be revealed publicly until we had absolute confirmation and enough 'time had passed' to feel comfortable announcing to the world that we were pregnant.

Total shock gave way to acceptance gave way to embracing the idea. We started picking out names, daring to dream that maybe we'd have a girl, something both of us admitted we've always wanted. Those dreams turned the wrong way when around a week or so ago when she began to severely cramp, she began to spot bleed, and then she began to have more than just blood being released from her body. A visit to the OBGYN this past week only gives us a half an answer, but this Tuesday we find out for good something we both already really know. We lost this one.

Stress...stress is such a powerful thing on the human body. That's what I figure happened here. The stress of the surgery compounded by everything else put too much pressure on Jen and her body decided that this was not the time. We've come to some terms with that, but I'd be lying if I said it didn't affect me harder than I expected.

I found myself viewing it the way Sgt. Mike Horvath (Tom Sizemore) thought about Saving Private Ryan. He said 'I don't know. Part of me thinks the kid's right. He asks what he's done to deserve this. He wants to stay here, fine. Let's leave him and go home. But then another part of me thinks, what if by some miracle we stay, then actually make it out of here. Someday we might look back on this and decide that saving Private Ryan was the one decent thing we were able to pull out of this whole godawful, shitty mess.'

I had started to think along those lines, that this was something pure to take out of 2009. Which of course then makes the guilt over not being as gleeful about the lack of seizures and still focusing on the severe delays Bennett has all the more powerful. But the other thing is just not really being able to figure out how I am supposed to feel about this miscarriage. It's another thing I wasn't prepared for and I don't know how to process the emotions about it.

So there ya go.

There's my list of what's got my panties in a bunch right now.

So glad to have it off my chest.

But this is my thing really, this mental battle over so many things...what I should and should not be grateful for, how guilty I feel, how filtered my vision has become, how negative I often feel. It's an inner turmoil that I don't expect to find answers to very easily. NOR do I expect them in any of your comments. Maybe there AREN'T any real answers, ya know? But, since I at least got some of it out of me finally, maybe I can go back to some regular writing again. Who knows?

One of my best friends says that I am the Master of the Un-Related Segue, and that I totally agree with. So while this post has a lot of shit to digest, for you AND me, let us not forget that it is Sunday, and the Ravens play Cleveland today at home. I expect the Ravens to be 3-0 when they go to Foxborough next Sunday to play the Pats. is Sunday, after all. I'd be remiss if I did not mention that. :)



  1. It's a lot to work through...

    ...and not much wisdom that I really have to offer. Except silent-ish support.


  2. You have my support Ken. I'm sorry you lost the baby. We lost our third as well and it was hard. That was an up and down read.

  3. Man, I was just expecting a post about football:)

    I think that you have stated rather clearly that you have a lot going on.

    The only thought i have is that you're processing--processing loss, cancer, brain surgery, recovery, illness, and then all the other things that are just life. There's no one perfect way to process. . . we just have to do the best we can.

    Oh, and one final thought--survivor guilt is real and it affects parents too. Took me a long time to realize that.

  4. You did that very well. I can imagine that knowing your readers are up to date, your "bloggers block" will clear up quite soon.

    Guilt...You sure can borrow some from the best (and worst) of sources. I've found that feeling guilty for being a human is really not all that helpful for me. It keeps me from living my life, accepting myself, and accepting others.

    If it helps, I forgive you! If you said "For what?" That's what I'm talking about...You seem to have nothing for which to be forgiven.

    God....Well, like I have said, He wouldn't be much of a Father if He let go of us while we are pulling away...I know I wouldn't let go of Dora...but she sure get's ticked at me when I hold on so tight. (Reminds her of the fact that she just can't get away, even though she thinks she wants too.)

    Sorry about Jen's family member...not one that I know correct?

  5. I keep telling you it will get better. Pretty soon you are going to stop listening to me if you haven't already. I will say, as one who is always the purveyor of low expectations, expect the best. You and everyone in your family deserves the best. I'm sorry it's so difficult right now. I'm beyond sorry. For everything you are going through, I wish I could take away your pain. Please don't feel guilty - your pain is legitimate and nobody keeps score of who is suffering the most.

    I want to finish with something rude and obnoxious filled with expletives about cancer and epilepsy but I am sensitive to the mixed audience and will think it instead.

  6. So sorry about the miscarriage. I can't imagine a worse time to deal with such a loss.

    I understand why you might be in denial about the brain cancer. You can only handle so much. Perhaps you need time to process everything else first.

    Seizure freedom. Something you've longed for all year, and now it seems that you have it, but not in the way you expected or hoped for. You're not a terrible dad for having these expectations, quite the contrary. And it certainly is yet another loss to grieve that it is not as you had hoped.

    At least not yet, anyway.

    I have a lot of hope for Bennett. I wish we could fast forward through the hardships you all will face as he makes strides toward recovery, but I hope that you can find joy and reason to celebrate along the way.

  7. Well, when you said you were going to purge, you really meant it.......seriously, I wish there was more I could do than just to say I'm here for you in any way I can be.

    And I'm with you, cancer and epilepsy both make me so angry some days I think my head will explode.

    And there is nothing wrong with having high expectations for Bennett post-surgery. Every parent would. Admitting disappointment doesn't make you an asshole, it makes you human.

    And Sinead is totally correct. Your suffering is real and justifiable. Just because he is SF does not mean you are not allowed to bitch about the things that aren't ok. That's like saying that because Maddie doesn't have cancer anymore (I hope and pray) that I can't hate every second that I see her suffer from side effects of treatment.

    And I am so so sorry about the loss of the baby. The way you describe it as being that glimmer of hope that there would be something salvageable from this year......I know that sentiment exactly.

    Sending love,

  8. I hope spewing everything helped you clear out a little. It is so much all at once. I imagine how hard it is to process.

    I am sorry to read about the miscarriage. As someone who has suffered one, I know how hard it is mentally and physically. Take the time to grieve the loss.

  9. There is so much I want to say, but I don't know where to start. So, like you, I will try to make sense of this if I can.
    I think I'll just address each as you did.

    1. Hope you are feeling better today. Colds suck and I agree, the body deals with them so much faster without the smoking.

    2. So sorry to hear about Jen's family member. You are certainly correct, Cancer SUCKS. Lost my father to cancer...wait, just lost my father in law to it too, although that wasn't confirmed by a doctor, just his ramblings. I will keep your family in my prayers.

    3. The power of positive thinking. Hmmm...I try this myself, but there are times when it just don't work for me.

    4. I think having to watch your son suffer through the IS and subsequent brain surgery gives you every right to bitch, moan, and complain about the entire situation. Yes, he's seizure free right now, but he didn't get there without complications.

    5. I think it's completely normal to expect more from your son after this surgery. You hear that it takes time, but that doesn't register and you expect more. I'm pretty sure that is normal.

    6. ah, the brain cancer. I can see why you can't wrap your head around that one. After dealing with the seizures all this time, this one was a blow. It takes time to come to an understanding with it and to accept the fact that he had some very rare brain cancer. And I think, unless the doctors can give you a concrete reason why he got this form of cancer, you will never be able to totally wrap your head around it.

    7. From reading this part of your post, I come to the understanding that you were once able to rely on God a bit more than now. I can't help but wonder if maybe going to Church and talking to a priest would help you actually come to terms with a lot that is going on in your life Ken. I know, it's never easy to face a priest after being out of touch for so long, but it may release some of the anger you feel towards God also. And noone is more qualified to talk about God than a priest.

    8. I will admit when I read that you and Jen had conceived another baby, I was so excited for you. I am sorry to hear about the miscarriage though. These things are heartbreaking. I had one before I got pregnant with my 2nd daughter, but I didn't even know I was pregnant so it was a bit easier for me to deal with. All I can say is I'm sure God has his reasons for doing as he has done. Maybe this is the opening you and Jen need to get back to being a couple again. Maybe then, the stress of life will start to lessen and you will see changes in your lives that you've been waiting to see. I know, easier said than done. Trust me, I know how hard it is to find time for just the two of you....and even though I don't battle any where near the things you and Jen have this past year, with three kids, time alone seems like a distant memory. But it's one that can be achieved...even if it is playing hooky from work while the kids are at school/therapy/child care, wherever, for a hour. No one has to know except you and Jen. ;)

    Oh...and on the football note...Damn those Bungles!!! Pittsburgh should not have lost that game. I just hope this isn't the preview of the rest of the season!

  10. Ken, I'm so sorry. Sorry you are sad, feeling guilty, mourning the loss of the baby, everything. It does seem unfair. That you have more on your plate than you can manage to eat right now. But, you have more support than you know right now.

    By the way, I'd be lying if I said I only wanted seizure freedom. Yes, that's the starting point, but I think it's safe to say that WE ALL want it all. We want SF and developmental gains. We want our children to be whole and complete. And I want that for Bennett too. The healing doesn't stop at the seizures. The main reason we all want to stop the seizures is to give way to development. So...that's the ultimate goal, right?

    I'll be thinking of you guys...

  11. 1- Dude your himmune system sucks. Since we've met, you've had more colds, than anyone else I know.

    2- Seems like cancer is the illness of the 21st century, more people I know have gotten it in the last few years, than any other kind of illness. Even I got it. And people I know are dropping dead left and right from it.

    3- Yeah, it seems like a lot of people we know are having a bad year. There really is something wrong with the past year.

    4- I'm sure everyone is happy for you, and for Bennett, for being seizure free. You can't blame yourself because you were successful in getting seizure free.

    5- Bennett will amaze you, it'll just take longer. Believe me I work with kids, and with special ed kids progress happens, it's just a bit slower (not that I think Bennett is a special ed case, I think he's a surgery recovery case). And brain surgery isn't something you bounce back like a ball.

    6- It says that you want some respite, and that you're waiting for the next appointment where they'll tell you what's going to happen next.

    7- Before you might think that Bennett surgery outcome was a miracle, now you're asking what kind of god would give your son cancer.

    If good exists, he's been for a long time now, and absentee landlord. One of those that if the universe was just, would just have his building removed from his possession, and given to its tenants.

    8- Well I just wrote about this one in the last post you made, with the miscarriage confirmation. It's always sad when parents loose kids they actually want, but just think that this problem might be best in the long run. And if you really want, you can always try again, maybe when there's less stress in your lives.

  12. OK....Wow....

    This HAS been a TERRIBLE year for you guys....

    I am sorry....SO very sorry....about everything....ALL of it....

    Never, EVER feel funny about wanting your son to get better in EVERY way....And we all know that you are VERY thankful that the seizures are gone...But NATURALLY you want more....You wouldn't be a good dad if you were ever totally satisfied...

    I wish so badly that I knew what to say...It sounds like this has been the worst year of your lives...But it is coming to an end....Perhaps you can ring this new one in and bury 2009....


  13. Just a post with information on support for children with cancer. fyi


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