Wednesday, August 13, 2014

Journey to The Center of The Brain

I struggle all the time with trying to categorize things. Why I find this an overwhelming necessity in my life I am unsure.

Perhaps it is part of my own mental...issues. My desire to seek order in a world I find chaotic. Or maybe I just need to know where things are, or how they fit, since I never felt like I belonged when I was a kid growing up, either in Middle School or moving into Junior and Senior High.

I blended, I was one of those hybrid kids. Not quite geek, not quite popular, not totally ugly but not stud-muffin material either. But I was able to, like ze ninja, move quietly from one group to another, or at least this is what I told myself, and somehow I guess I made shit work well enough.

I blow it in all kinds of ways now though.

As a father, a husband, a friend. And a lot of it comes down to just not knowing who in the Hell I am anymore.Where DO I fit in? Where do any of us?

For so long now, I have always brushed aside so many aspects of Bennett's disabilities. And I don't mean I forget about them and their immediate impact here. But I don't saturate myself enough with them. This might surprise you. Some would say I champion Bennett with ferocity.

I don't see it. I wish I did but I don't.

If I did, why can't I devote this blog entirely to him? Why cheapen it, sour it, SOIL it with talk about comics, Scarlett Johansson, or my butt? And why do I hide deep within myself and never really study the nature of what an Oligoastrocytoma is?

Tomorrow is MRI day. Cleveland Clinic.

It is the first time I have ever had real fear that his tumor might be back. The return to diapers. The regression. The word stuff. And the study of the tumor itself. Why can't I accept that there is a 30% or something chance that it will come back? Why?

Because there is a 70% chance that it won't.

I hate this hope. I HATE IT. And yet I have it. All the time.

This may make no sense to any of you. And it rips away at me. But it's the truth. Because it is both good and bad all at once. It forces me to be optimistic and always fight for him, but it never prepares me for any of the worst of the possibilities. It never allows me to categorize Bennett. It never allows me to figure out how he 'fits' into the big picture. Is he a child with Autism, is he a child who is a Brain Tumor Survivor, is he a child with Epilepsy who has not had seizures in several years, is he a child with an unknown condition on the other side of his brain as yet undiagnosed and unidentified, an anomaly that baffles everyone who sees it?

Or is he just ...Bennett?

He is, but not finding the right groups to join and ACTIVELY participate in, the right causes to champion, makes me a worse Dad for him. And that's the problem with all of this. How do I figure out how to be in so many places at once, especially when I want to explore different treatments and options, and need to spread myself even more thin than I already am?

Fuck it...I am just having a bad day. I get like this a lot when MRI day comes. Who am I kidding, I get like this a lot PERIOD. These are the ups and downs of trying to be his Dad. And I haven't even begin to talk enough about God...for every step I take forward with him I fall five steps back.

I just don't know what the Hell I'm doing.

Sometimes, I write blogs like this, and I never hit post. I have a shitload of unpublished blogs, a sea of them. But I have to stop doing that. Even though these are just momentary lapses of reason, I have to purge them. Otherwise they jam me up too much on the inside, and I carry it around inside.

Part of what I am trying to do lately is just change how I do things, everywhere. A bit at a time. Not sure if it will help me or not. But I'm trying new things and seeing what sticks. This is part of that. Not my finest hour as a blogger. But was talking about my rectum for an hour better? Probably not. Which, by the way, was a disaster. Turns out I have blood clots back there. UNTREATABLE. 6-8 weeks minimum of just me and a healthy does of massive discomfort and pain.

Sounds a bit like par for the course. Don't it?



  1. Just keep writing and don't worry about the particulars. Not many of know what we're doing anyway, as hard as that might be to believe. In the meantime, though, I wish you much strength and courage for the MRI. CONTINUED strength and courage, because sometimes you need reminding that you do have both!

    1. Thanks, I appreciate that. It is hard for me to stay on course about staying on course. What the Hell did I just say???

  2. Agree with Elizabeth. Also, while you have no definitive category, look for whatever is out there that is relevant to his issues regardless of the reason. I've found with my kids, that as they get older, the reason for whatever problems, needs, etc, is not in the picture in most cases. You just cut to the chase and treat the symptom many times. It's all great that money goes into research to diagnose, prevent and cure conditions, and I see why, but I also believe that money, programs, efforts also be used to directly treat the issues at hand, and often there is not enough of that.

    1. That's a take I don't remind myself often enough. Hard to when i am too busy kicking myself in the face. Thanks for the perspective.

  3. This comment has been removed by the author.

    1. Why did you remove this? Did you not want my response? I found the points you raised very interesting and was not offended at all by your questions or suggestions, just so you know. If you change your mind, let me know. I would give an answer, but I want to give an answer openly because I think these kinds of things are not discussed often enough in open forum. :)

    2. my anxiety spiked after I hit publish and was afraid I was over stepping my bounds. I never know sometimes if that part of me is on track or out on a ledge somewhere. I did copy it and will repost since you saw it, and not offended by it.

    3. (warning: I am feeling like a wise old woman today who has "sound" advice to offer, don't forget its coming from a very flawed human being.)

      do you ever wrestle with the dark thoughts of wanting the tumor to be back so there could be an end to this journey? We don't talk about that as parents, because we get slammed. But I know those thoughts are out there. I can't be the only one who's thoughts goes there. Then have to spend a few minutes fighting within, wondering why my brain would go there in the first place. To finally talk myself into the notion that its not a selfish thought, but one of compassion? Parenting with mental health issues...why are there no books out there?

      Carter - You can't be a perfect parent, you can't plan and orchestrate the "perfect day" with him to provide tangible evidence to yourself that you are working on things. You can't be the perfect parent. HOWEVER you can be a consistent parent.

      Take that recent video of B at the table while waiting for food. The conversation between you and C was as illuminating as the one with B. You ask him to stop cutting up the cup. He ignores you and keeps doing it. Listen to how you are talking to him. You keep saying, "Please stop". I did the same thing for a long time with my own son. I thought I was being respectful and polite by using "please".

      All I was doing was giving up my power as a parent. Giving my son the option to choose not to do what I was asking. He heard the "please pick up your socks" as "eh, pick them up if you want." Drop the please and see what happens.

      "Stop cutting up the cup."
      he continues
      reach over and remove it, (add the politeness here with a "thank you"), then explain why.

      Don't be afraid of damaging the relationship....sounds to me like its has no where to go but up.

      Its very hard to juggle two kids with vastly different needs/interests. Your not alone in dealing with this. All parents wonder - as "this child of mine getting the shaft while I deal with this other child?" How do you juggle the needs and of different people? and still find time to wrestle with your own issues? I feel like I need a parent/life guide even at 48. I am still learning about myself and where I am going in this life...and I am guiding young ones?!

      I hope the MRI give you answers and peace today and put the anxiety back on its leash for another year.

    4. you know Ken, honestly I know where/what is causing the unrest in me about it.

      This line should be a stand alone sentence and not attached to where it is. (Parenting with mental health issues...why are there no books out there?)

      It makes it sound like only parents fighting mental health issues have dark thoughts. Which is not true.

    5. I think that you have great points in here, regardless of the publishing anxiety, which everyone has felt from time to time. In fact, there is so much in here I want to go over I may just write about it separately, since each subject you go over deserves some real meat to its answer. The short answer is yes I've had thoughts about Bennett's tumor coming back, long answer involves whether or not I consider that thought to be dark. Or just plain old fashioned normal.

      Your statement about Carter? I've talked about the Pussification of America in another blog somewhere before. And yeah...I need to do it again. Being WAY too easy on the other boy, out of guilt with Bennett, fear of becoming my own Shitty Dad #1 or Monster Dad #2. This isn't is a generational thing. And a social thing. But it is a very real problem across the country. As always, my motto should be 'There's an unfinished post for that!' It's called Anti-Social Media and the MineCraft Generation...but it is another Opus. I am workin on it though in my spare time, along with a few other keepers I had saved in draft form. The rest I junked. That was liberating.

    6. You can parent without becoming Shitty/monster Dad the third. It is possible. That's a whole other blog so I won't ramble on.

      eh? oh, okay, maybe for a just a moment...Have you defined what type of a parent you want to be? and what/where you are heading with C? (lets just leave B out of the equation for the moment.) What would be the ideal day for him/you, what would be the dream routine for this? spell it out, [getting up, family breakfast, off to school, snack, homework, 30 min of games....and what else?]

      Eagerly await this to read "Anti-Social Media and the MineCraft Generation" - want to see what you invasion instead of where we as a society have drifted too. My living room has 5 computers, we don't watch TV/have cable. Computer time is not limited, for any of us. You have me wondering what your vision is.

  4. I never quite know what to say other than that I am reading all of this and find that you are often wayyyy too hard on yourself. Hang in. Big hugs.

    1. Thanks. I start the next blog with this quote, kind of. And yeah...Bennett's MRI is clean.

    2. Um...scratch that. I punted and had to write something else. I have to start the NEXT one with that. D'OH!!!!

  5. Wow so glad the MRI is clean! Lots of great issues raised here for discussion (re: dogdancing). I know I have had some of those dark thoughts myself from time to time. And I also worry that I am too soft a parent as well. I think some of these thoughts and issues are much more prevalent that we think.

    It also caught my attention when you mentioned minecraft. My kids are all 5 years old, almost 6 (triplets) and the 2 without CP are already into minecraft on their ipads. Zac (with CP) doesn't play it. However we have to have a rule already of no minecraft on school days. I also have a friend I work with who's son is 8 and he is totally addicted to the game. We stayed with them a week one time and caught their son waking up at 4 AM to play minecraft because he wasn't allowed to play it in the mornings before school. It doesn't help that the Dad there is addicted to it as well (IMO anyway). Something about that game.... I'll be interested to see what you have to say on it :)

    1. That's wild...yeah as the Dad's we have more responsibility than we realize. See WAAAAAAAAAAAAAAAAY up there at the top, the thing that says GAMES? I love games. I loved spending a lot of time at the end of a long day playing my X-Box. I've lost control of it at times, even at my age. I haven't touched it in almost a month. And here's the thing...I can't, not even a little, while I am trying to break Carter's addiction to this thing. It doesn't work otherwise. He just won't understand why I am playing ANYTHING, even though I am giving him 30 minutes a day right now I must have ZERO to show him how it can be done. And he is still flipping out. But yeah...I have to pull him out. I created a monster.


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