Saturday, June 13, 2009

Freak Show


Kids and Jennifer are out of town for today and part of tomorrow, and I am alone here. How did I spend my Saturday morning? Seizure research. I know, I know...try not to be too jealous. Many of you are probably thinking...DAMN, I wish I could be doing that.

But this is how I live my life right now. Free time is not me time. If I am not working, I am either researching stuff about doctors and surgery and epilepsy and all that, writing a blog, communicating with my IS Brothers and Sisters, doing household stuff like laundry or cleaning, watching and working with Bennett and recording his seizure events, or hanging out with my family and desperately trying to salvage my relationship with Carter.

Beyond that, there is little time for anything that I would consider is just for ME.

Maybe I'll watch some TV, but I do that WHILE doing one of the above or much later when I'm too damn wiped to do anything BUT that. Maybe I'll flip through a book, but I do that WHILE doing one of the above. Maybe I will read some blogs and look at some stuff on the internet, but I do that WHILE doing one of the above.

I don't exercise any more. I should.

I don't take very good care of myself with food that is good for me. I should.

I stopped cooking meals comprised of straight-up meats and veggies and have begun to rely too heavily on frozen stuff and Take-Out. I should not be doing that. To me OR my kids.

I don't play any video games on my X-Box 360 anymore. I should.

I should be playing video games on my X-Box 360 with Jessica Alba.

I don't plan and get involved in any home improvement projects and don't take care of the house from a maintenance perspective. I should.

I barely find motivation to dust and vacuum. I should.

That's right...drink it in ladies...

I don't take the kids out to a lot of places anymore. I should.

I find that difficult. I shouldn't.

Several weeks ago, all four of us got in the Lillymobile and went to a, whatever you call it, some place where they sell all kinds of trees and shrubs and shit. Hell, I don't know...I am LOST when it comes to man skills. I can mow, edge and trim and pull weeds. Beyond that I'm an idiot. Not like THIS GUY. He's a backyard GOD.

Anyway, we were looking for some solutions to some landscaping issues. After going there we went to the local Meijer (for you non-locals, it's like a Target or a Wal-Mart type of a place...a place you go that has a little bit of everything) and as we were getting checked out I saw the aura in Bennett, and took him out to the car.

He has a few moments sometimes before his seizure clusters that can be a pre-warning to me that a cluster is about to occur. It's subtle, and many people can't see it. I can. It's my job to. And I am best qualified because I am obsessed with understanding and explaining that which cannot be totally understood or explained. He had his seizure clusters on the way home in the car seat, and it was VERY important to me to get him out TO the car, away from anyone else, so he could do it privately and not be the center of attention.

Is that fucked up or what? But it's how I feel.

I hate...HATE, when people 'gather round' to watch the little boy jerk away. I know that these people, so far mostly family, love Bennett and want to help him and it breaks their heart as much as it breaks mine, but I just haven't gotten my head around it as a public event yet. I was so used to people watching Carter and all the amazing, advanced things he did and marvel at them.

It's just an entirely DIFFERENT feeling when you have a boy in a group of people now who is not being marveled at but rather sort of 'studied' and it's like having a bottle rocket in your pocket with a delay fuse and you aren't entirely sure when it is going to go off and when it does everybody stops to see the fireworks.



Anyway, until I can get my mind around that and get comfortable with it, I don't like being around it. But on the other hand...not fair to Bennett, ya big dummy. He LOVES being around other people, so does Carter, and as I sit here on a Saturday afternoon typing in my darkened office with the shades drawn basking in negative emotion, they are both probably basking in the warmth of the sun or resting in the shade on a cooler, less humid June afternoon around a large campfire pit smelling of whatever is cooking on the grill and trees and grass and playing with other kids or just running around and playing and exploring.

Until Bennett seizes. He'll have fun up to that point. He will verbalize...not actual words per se, but sort of, and he'll make noises and sounds, he'll use consonants and stuff and babble, he'll run and play within his limits (and there are some serious limits according to the Occupational Therapy Evaluation Report that I read this week). But he'll be doing what he does, enjoying the life around him, and then he just won't be.

Fun stops.

Playtime stops.

Time stops.

Everything just stops.

Except the seizures.

They don't stop. And it doesn't matter if we are alone in the living room, or if we are in the midst of a bunch of people. The seizures are always going to be there. Until they're not. (Yes, I still have Hope...)

But when people are around, and by people I mean people other than me, the grandparents, Carter or Jennifer, it just feels weird to me. Like some kind of Carnival Freak Show, right down to that music they use for Jackie Martling's theme on the Howard Stern Show.

Step right up ladies and gentleman, boys and girls, lovers of the strange and unusual! Friends, he was once a normal, engaging lad...he was the beautiful boy with so much promise and potential! The Future...a golden egg that he held in the very palm of his hand! Until...the Fates dealt him a dastardly devastating disruption of his brainwaves!

That's right! Closer please now, step right up! It's only two shillings to enjoy the educational experience of a lifetime! Careful, careful...not too close, he has to be placed in this position for safety's sake, folks! It's a state regulation! Not that there's any cause for alarm! There have never been any problems, but you never can tell! Accidents do happen! Just in case, you should take note of the emergency exits here and here. See the illuminated signs?

How he got this way will never be known. Some say he was born with it, others whisper that it was caused by a vaccination gone horribly wrong, others say it might have been an injury! Believe what you will! But whatever you believe, BEHOLD...the Curious Case of the Convulsing Kid!

And that's my problem, that reaction. Not Bennett's reaction, not anyone else's reaction. My stupid reaction and concern for feelings that Bennett certainly does not have, nor those around him who care for him. It's just my stupid, over-analytical, over-processed, over-blown, over-emotional reaction.

I know that I need to get past this feeling, this hurdle, this thing that keeps me trapped mentally and physically. I just don't know HOW yet.

And here's a new wrinkle...

I don't want Bennett to be treated as if he is different but he IS different and I also want him treated differently.


Yeah I know, it makes ZERO sense at all. I don't even know what it really means. These are waters I have never navigated before, and I feel a bit lost at sea. I do not know how to act and re-act, how to feel or respond from one situation to the next. There's no manual for this, no guidelines. They don't teach you this crap in school.

I just should have gone. Should have sucked it up and gone. Yeah sure, in the old days I stayed back because I cherished time for ME. But now, I don't really have anything that interests me other than fixing my son, so ME time just becomes time to sit around and feel like Grade A Shit.

Yeah I'm doing some cleaning, yeah I mowed the lawn, yeah I did the trimming and yeah I burned through nine loads of laundry and yeah I vac'd the house and yeah I am 'getting things done'.

But I could do that this upcoming week in the evenings. I should have gone, I should have been with my family. And I miss Bennett like CRAZY, despite the fact that I spend almost every night right at his side until he goes to bed. I miss Carter and Jen too, don't get me wrong, but with Bennett remember...DIFFERENT but also NOT DIFFERENT.

Regret sucks.


  1. Oh I so hear you on many the things I should be doing with my kids, for myself, for my family, but when the whole IS thing came upon kind of stopped. Then it started back up again after a while but its so different. Not the same as it was before. And yeah, I hate going out anymore because I am afraid someone will look wrong and I will lose it.
    Once someone was staring at Daniel, and I said something like he's a little kid you don't need to stare at him. Just because he's different doesn't mean its ok to stare? Do you see me staring at you? You're ugly but I'm not staring at you because you're different. I have manners. (I know it was mean..but it made me feel better at the time). My husband and I joke about what the next come back is going to be to someone just so I can make them feel like a dumb ass. Mean and immature I know....but again, for the split second that they are all dumbfounded and embarrassed, I hope they get a feeling of what it feels like to NOT have the choice of being different and to be on show for everyone.

  2. Colby being in a wheelchair actually goes a long way in this regard...People can see the chair from afar and EXPECT him to be different....Those of you who are fortunate enough to have "walkers"...Well, they look "normal"...So there is no warning...No unspoken explanation...So in a way, even though they might have the ability to walk, it can make things more difficult for them....They look TOO normal!!!

    We used to go and do all the time, even after the grand mals started at age 8 (since they were almost totally controlled and he would go YEARS between them)...Over the last few years, since his drops started and became more and more common (and nOT controlled), I choose to hang out here most of the time with him....The sz., coupled with Colby weighing over 100 lbs., my bad back and no husband to help....Well, those are my "excuses" anyway...

    Again, I know I say it over and over....You are dealing with all this battle VERY normally...Just like me...Uhm...Uh oh....Sorry...You may not appreciate the comparison!


  3. I totally hear you. Luckily we have the whole cancer, ACTH, immunosuppressed thing going on so I can say we aren't "supposed" to leave the house. But I hate it too. I do the same running to the car thing.

    Reading the other comments above made me think of something from my recent days toting around a totally bald child and the questioning looks we would get. Alot of cancer parents buy shirts for their kids that say, "Don't stare, Say a prayer." Ken, I know that wouldn't be your style, but I wonder if those might help diffuse the looks. I certainly don't see why prayers would only be called for in the case of cancer. I know I think IS is a much tougher battle for us right now (knock on wood!). Anyway, there should be something like that for epilepsy if we wanted to be able to keep nosy folks from getting in our business.

  4. Actually...I lived this moment yesterday at Toby's baseball game. We decided to go as a family. It struck me that I rarely take Trevy anywhere that isn't therapy or family based. And he LOVES going places. I just can't seem to get myself dressed...and motivated... But anyway at the game last night...two things happened. Toby's teammate's typical-two-year-old brother was there...being all typical. Probably nobody else was noticing the differences between the boys. But I was. Trying hard not to. AND Trevy had two very nasty clusters. Plus lots of the aura-action (not sure if Bennett does...but Trevy does lots of lip smacking & picking pre clusters). And I did my normal gather Trevy close...rub his back...tell him I love him...and try to sheild him. AND I got angry that nobody noticed. Nobody asked if he was okay. Nobody cared that a beautiful little guy was right there...suffering. Seizure-ing. And it pissed me off. Even though I was trying to hide him for curious eyes. And it struck me that I don't think anybody can really win with me. I don't want the stares. But I get angry that people don't notice. seems to me that you rage through emotions like I do. Glad I have company...


  5. Even now, I still research seizures. When I get up in the morning. On the way to work. work. On the way home. While cooking dinner. Before bed. I became completely obsessed with this stuff. Even now after the surgery when things are looking up.

    I avoid a lot of social situations. We only hang out with people we know really well. Even at our block party I was completely possessive of Emma. I didn't want people to see her properly cause I did not want them to pass judgement. And everytime someone said "She's the same age as "x" - they'll be in the same class" my heart sank to new depths.

    I'm beginning to accept that she will be in special education come next March when she turns three but I'm not at a point where I want to talk about that. I'm not embarrassed about it but I'm sad and still in mourning for the little girl who beat every milestone until she was one. I'm OK about it with therapists, doctors and other parents in the same situation but I hate being confronted by everyone elses "normal child"

    So I get where you're at and challenge you to break out of isolating yourself because when Carter and Bennett are older they will remember the days that Daddy hung out and took them places. And those will be the best days. Sure, you couldn't go this weekend but maybe next weekend you'll feel like it.

  6. Wow,so many things in reply to this but I'll try and keep it simple.First .. look for an email from me.Now to this crap and it is crap.IS and this journey is crap.Kenneth be gentle on yourself first and foremost.We can shoulder this entire thing but in the end it will get us no where.You ARE doing an amazing job being Bennett's dad and advocate love him,as he is and that is enough.You have hope,I read that word you wrote(about 25 sectionsdown!) and that is an important element ... if we lose that,hope,then this thing,IS,wins.As for other people,I have a couple of things to say to that ... because trust me,I get that.You would swear that people in this outside world have never seen a Down syndrome child,well in fact some haven't because they aren't being born.Society has seen to that but that is my other soapbox.People will look.People are ignorant. We can't do much about that except educate.I feel like screaming at people,at the top of my lungs, the litany of disorders and diseases this child has gone through,as they stare and gawk at my miracle.Trust me ... sometimes I actually do!Lastly and really I could say a whole lot more,you will find your way through this because Bennett will show you the way.These children are far more resilient and forgiving then we will ever be.That's it.Not actually short and certainly nothing about this is simple.Our best to you.Hold tight to each other and keep on keeping and PLEASE ... keep writing.

  7. My kid doesn't go through anything like what your kid is going through, but the not wanting them treated differently but wanting them treated differently? So with you on that one! You want your child to have the same experiences and opportunities and fun as other kids. You don't want them defined by a disease or difference. You can't freaking tolerate having your kid defined by this thing that can completely take over their life, your life, their sibling's life.... But you need your kid to be safe and cared for and that requires different treatment. I'm five years into it-- again at such a different level from you that mine is laughable by comparison-- and I had a full on tantrum the other week about exactly that: getting my kid the same experience as every other kid and having to get people to treat my kid differently from every other kid in order for her to have it.

  8. I would never, ever, ever, ever, in a million years wish to go though what it is that you are going through...but I wish I could become the man that you are...
    I watch TV while the laundry sits.
    I play video games while my book shelf gathers dust.
    I don't do research.
    I brood and feel like "crap" for no real reason...
    You're response to this crazy unfair trial is in the top 5% of healthy, adaptive responses and I am sure that all of your IS brothers and sisters would agree.

    Some "dads" would just drop out and leave it up to mom. Some dads would leave. Some would drink themselves to oblivion. Some would find more reasons to escape and justify it all...
    What are you doing? The total opposite. Your and Jen's strength will bring Bennett and Carter and your family through this to the other matter what happens to be there.

  9. I don't even know where to start. So many emotions.

    The balance between trying to provide a social life for Bennett but also trying to protect him is so hard on so many levels. I can't tell you how many times I had been at a friend's house with Sophie cuddled in my arms while having a cluster of seizures and no one knows. Or, in the beginning, when no one knew what an IS seizure looked like and I told them, they would give the response of...oh that's it. Sorry she is not on the floor convulsing with a grand mal!!!

    But as Heather are so incredibly resilient. We, as parents, over think and over analyze everything while our kids are just being as happy as they can be. Sophie has pulled me out of so many funks just by her smile.

    And the regret got to let go of it. Guilt use to eat me up inside so much. You just got to live each day as a new day and do the best you can on that day. Some days are much harder than others. You are in the midst of the hardest days...between the seizures and trying to wrap your head around your Detroit visit.

    I feel for you because I have been there and I wish I had words that could somehow pull you out but only time will.

  10. Melanie:
    It must be a difficult balancing act to feel certain things while you are out and not blurt out everything. I guess a lot of people just don't know what to do when they encounter people who are different. I've always struggled with it myself.

    I totally see where you are coming from. That sudden 'surprise' from someone who doesn't outwardly appear to have a disability. Makes it tougher on the spectators I suppose.

    The T-Shirt idea is not all that crazy of a concept. I would actually pursue making some, but I would probably end up walking a VERY fine line in taste or acceptability. But it is food for thought.

    Love that story. Birds of a feather. That's the true nature of the double edged sword in want to hide him, but then if he is ignored you feel bad too. Seizures suck.

    That's what I like about you, you share your experiences and what you went through and how you are dealing with it now but always a reminder to be strong for my kids. Always respect that about you. It's like...yeah, you blew it this time but it's cool, suck it up and do it next time. You'd be a really good coach I think.

    Got your e-mail, thanks. Glad I could do my part. And no worries, writing seems to be what gets me through all this...

    Even if the diagnosis is different, this whole dialogue can apply to any diversity, whether it is a disability, an injury, being divorced, hell being black or white...anything that makes a person different than what is the 'norm' around them.

    Dude, that's one of the nicest things anybody has ever said to me, but I am SO far from the ideal Dad/Man. Far, far from it. But thanks for the sentiment.

    Yeah, time really is the only thing that will change things, for good or bad. But it does help to have a seasoned vet tell you that what you are doing is perfectly normal for the circumstances. :)


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