Showing posts from April, 2009

What Keeps You Going?

I get asked that a lot. How do you keep it together there fella? With all that is going on in your son's life, dealing with that kind of diagnosis day after day, how do you maintain any energy level at all?

It ain't easy, I'll tell you that.

This helps.

That is a Nespresso machine. It is a handy-dandy little device that makes an Espresso shot in the comfort of your own home. But it's a DAMN GOOD Espresso shot too. Plus it's convenient as hell, there is really no muss or fuss about it. You insert the module of the flavor and strength you like, put the cup under, close the arm, hit the button, let cup fill (takes mere seconds) and then stop the machine.

VIOLA! An instant cup of hot Espresso that is absolutely bar none comparable to any you would find out at a Starbucks or any other coffee shop. And for a lot less money. Well, unless you factor in that the machine itself costs money, but let's not talk about that.

Want one?

Thought you might, so when you decide to actu…

Of Course I Still Buy Kubricks

And you thought that maybe the difficulty I have had of late with my son would keep me from at least keeping my feet wet in the world of block figures? Some things are a part of your very genetic structure, as is my obsessive need to collect SOMETHING. Right now, it's mainly the block stuff. I just can't handle going to TRU or Target and looking at some REAL SHIT right now that is priced at something ridiculous like $7.99. Remember when THIS kind of thing was 7.99? Or even THIS? That wasn't all that long ago.

Yeah sure, Kubrick figures are sometimes a lot more than $7.99. But they tend to retain or gain value. I spend $7.99 or even $10 bucks on a Kubrick (or hell even a lot more), chances are I can probably sell it for around that or more later. I have a simple rule when it comes to what I buy on eBay in the block figure world. I will only buy it if I know that the price I am paying is something I can at least recover if I had to re-sell for whatever reason.

I say 'for w…

The Star Wars Kid

No, not the infamous kid who played with a lightsaber and set the Internet ablaze many years ago. I'm talking about my OTHER son, the one that I really don't devote nearly enough time to in this blog (or in real life quite frankly) since he is 100% healthy. I used to write about Carter a lot, back when I was a 'New Dad', but that was what seems like a lifetime ago.

I wanted to try to bond with him a little bit, and I have been doing it by trying to use Star Wars as my bonding agent. This weekend, in the midst of watching for seizures, cleaning, organizing, mowing the lawn and a bunch of other odds and ends, I put in Star Wars Episode I: The Phantom Menace in the DVD player for Carter and sat with him to watch it.

Yeah, yeah...I're asking..."Ken? Why in the world would you subject your elder son to the most horrifically awful of the six Star Wars films? Are you INSANE man?"

Well, he has been watching Star Wars: The Clone Wars some of the time, and …

Artists Alley: Kim Mattison

So far in these Artist Alley blogs I have shown some people who I encounter over at deviantART, and for the most part that may be what I do most of the time here. But occasionally I may break that tradition, like right now.

I used to work for a company called Palisades Toys. Lots of people who read this know that. They also know that after about a year and a half there, maybe 2, things got super duper busy and we hired a Production Assistant named Kim Mattison. Ever since she came on board there, we've been good friends, and even though the company is no more and I haven't seen her, damn, since 2006 at the San Diego Comic-Con I believe, we still keep in touch.

Lately she had been e-mailing me anything she can find that has been funny. She does this to cheer me up since she knows all about the daily melancholy I experience over my son Bennett's condition.

But a couple of years ago, and I don't exactly recall the circumstances, I was battling one of my various depressions, …

Days of the Living Dead

As much as I hate to disappoint all the George Romero enthusiasts out there, this is not some blog about all the great 'Living Dead' zombie films from the beloved director. Rather, it is just a simple note or two about my son Bennett. Of course, the zombie reference can also apply to me...sometimes I feel a lot more dead than alive.

Sorry I haven't written much lately, I have been in a very negative place all week mentally so I didn't feel like just dumping it all. Bennett's condition has not improved, getting any solid info from the local hospital about what to do next or when certain appointments are supposed to take place has been like pulling teeth, work has been draining, my camera may have died, had some computer file issues that are gonna take weeks to repair (cause I can only do it in my free time), and Spring has kicked in with full force so I am sneezing like a maniac all day long.

Bennett, as of Thursday of this week, has begun to take Keppra. He is now on…

Artists Alley: Chris Uminga

Another look at one of the many gifted and talented people you can find at deviantART, the website for artists to post their work and participate in an online community. You get the full gambit at DA, from kids just starting out, to guys like me who are sort of in the medium area, to full-on GODS in the professional comic world, like Adam Hughes, Tim Townsend, Jim Lee and others, who put images of their work up, write journals and talk to one another. I also maintain my own deviantART page, which if you ever feel adventurous you can always check it out.

I don't post a whole lot on there right now though to be quite honest. I haven't uploaded anything in quite a while, but last year I was adding all the time and had even started some new work. But PAYING work takes precedence, and so I blopped the art for funsies sake and started doing product development again, which, while creative, isn't 'makin' art' the way most people think of 'makin' art'. Add i…

Some Random Friday Ramblings

I'm feeling very random today.

Risky Business

In the old days, if you told me that my wife and two kids were leaving Friday night to go visit her sister for the entire weekend, I'd be pulling out my tighty-whities, Ray-Bans and button down shirt and digging around for my Bob Seger CD's.

These days? I'm not the same man. So while I might have before relished the idea of spending a weekend playing X-Box, sorting toys, watching movies where things get blown up, people curse and get naked with each other and eating nothing but pizza for every single meal, now I am feeling only sadness at the thought of being away from my family for 2 days, particularly Bennett.

Weird huh? Well, I have tons of cleaning to do, gonna try and finally come up with a solution to this floor in the kitchen. It's just a horrible tile, we should replace it eventually. We had actually talked about a deck this year finally, but until we know how much the whole Bennett thing is gonna take out of pock…

Mother Knows Best, Actually

So Bennett's case was 'reviewed' by a bunch of Epileptologists and Neurologists yesterday. Some changes in 'The Plan', though I don't feel like listing them right now, but it does appear to me that all roads are starting to move in the direction of brain surgery for Bennett some time probably within the next few months or less. Can't tell you how freaked out that makes fact, I'm not even gonna talk about it now...need some time to let it sink in.

What is it my Mom has always told me? In mock Latin? Illegitimi non carborundum or some such. Supposed to mean 'Don't Let the Bastards Grind You Down' but it isn't 'real' Latin, mind you, it's a bastardization of it. So to speak. :)

By the way, while we are on the subject of Mom's...they sure as hell know their sons when it comes to getting them to eat. I haven't been eating lately, not like I should, and I am losing weight at a rapid pace. Now frankly this is a good t…

Hey...Do You Want a Bite of My Shit Sandwich?

It's really tasty, the one I'm munching on right now...want some?

I'm just having a shit day in the middle of a shit week in the middle of a shit month. What's that you say? Shit is a bad word? Well...NO SHIT. ain't a family show here, and sometimes I just need to vent, so I'm gonna. Just realized it is Tax Filing Day, it's probably a shitty day for a LOT of people in the Unites States of America.

No real updates people...yup, my son Bennett still seizes every day, and they are getting worse not better. AWESOME!!! I barely spend any time with my other son because I am in such a foul place mentally and by day's end I am pretty wiped out frankly. SWEET!!! I spend pretty much every evening after making dinner and clean-up just waiting for a seizure cluster to come so I can grab my pen and paper and make notations. I even have a nifty Excel spreadsheet to record his seizure activity now. Isn't that GRAND? WOOHOO!!!

Today is that 'pres…

A Difficult Easter Weekend

The weekend was not really very good. There, I said it. Correction...the weekend was not very good for me. Carter had a pretty good time, doing Easter related stuff and playing with his cousins, and Bennett, when he was not sleeping or seizing, seemed to have a good day Saturday, though Sunday most of the day he was listless and a bit out of it, though he got very giggly and energized in the evening from around 7:30-10:00. But for the festivities something wasn't clicking for the little guy.

It was sad really, for me, standing outside watching kids search for Easter Eggs at my mother-in-law's house, and seeing Bennett not really running around as is his norm, and not really searching, and not really interested. He was just sort of being led around by Jennifer or Mandy to pick up plastic eggs filled with chocolaty goodness, none of which he can even have by the way, but he doesn't know what he's missing so that's no big deal.

Some people refer to Topamax as 'DOPE-…

Bennett and the Epileptologist

Yesterday, at 4:00 PM, we had an appointment scheduled with an Epileptologist to review Bennett's treatment and make various decisions about where we are, where we are going, etc.

For those of you who do not know, Infantile Spasms (a soft, un-assuming description that REALLY needs to be changed to reflect the severity of it) is a form of Epilepsy that children get. Yeah...EPILEPSY. I've had a hard time explaining that to some people without writing a very, very long book here about everything I know, or everything I THINK I know, about it.

But of course that's hard to do really, because every case is different, every person's experience with their child is different, every child seems to have different kinds of seizure types at different times/intervals/severity, every child (seemingly) has a different treatment. I am a member of one forum where there are no two children with the same exact cause/treatment, and there are LOTS of active members. How freaky is that? Not o…

My Formal Apology to All Non-Smokers Everywhere

For as long as I can remember, I have been around cigarettes. Both my parents smoked when I was a kid, buddies smoked, and obviously in the 70's and 80's smoking was still widely practiced in places it isn't done now...restaurants, airplanes, waiting rooms, etc.

I began smoking in my early twenties. I had dabbled a LITTLE bit with it in my late teens, but not much, but I bought my first real pack for myself in college as a matter of fact. That's a fairly late start for smoking, so I've heard.

Last year, in November, I made the decision to quit. The decision was based on a few factors. First, my health as I age is becoming more and more of a concern. Second, the expense was really getting to be something to be reckoned with. And third, my older son Carter said something that really made me realize what a horrible example I was setting for my kids.

I didn't really smoke around them, always went outside, and maybe once or twice Carter had seen me do it in a park or …

More LOST Kubrick Figures

Figured it was time to try to get back to writing some blogs about stuff not related to Bennett. Not to suggest I care less about it, quite the contrary...I just need some distraction too. One can get consumed by this if one is not careful.

Now you know I love Kubrick figures. I've written about them in these pages, showed you some sets I have picked up lately. Along with MiniMates and Mighty Muggs and a few other things, they about all I am collecting anymore because of space/money/interests.

Remember the blog when I went over the new LOST Kubrick figures I picked up? Well, I managed to pick up two items in the last month or two. The Desmond chase figure and a Be@rbrick I did not know about.

I actually had my eye on this...

Ben Linus eBay Auction

But HOLY CRAP. Six hundred and ten dollars? A couple of people really wanted that Benjamin Linus. I I want it too, don’t get me wrong, but I don’t want it THAT badly.

So I'll just have to be happy getting my LOST block figure …

Because of Monday

It's Tuesday, April 7th, and we still have not reached our goal of seizure freedom for Bennett. Made a decision today, gonna stop wishing for it each day. It's killing me. I wake up, push down the pit in my gut, say a few words in my head about hope and that 'Today could be the day!' and all that and talk myself into getting out of the bed and into the real world.

I've got to stop that.

Not stop the hope, that isn't what I mean. I will always hope, but I think that instead it needs to go like this in order to maintain some sanity, which slips away each time I watch Bennett enter a seizure cluster. From now on, I am going to wake up, push down the pit in my gut, say a few words in my head about hope and then say 'Let's see what happens today!', then talk myself into getting out of the bed and into the real world.

Why am I at this place in my head? Because of Monday.

Quick set-up. I ended up watching Bennett quite a lot from Thu-Sun. Thursday night Jen ha…

Walking the Line

I can't explain effectively why this week was worse than others for me and Jen. The end result of the week is that it really wasn't all that different than weeks prior, but for some reason maybe she and I were just a little weaker this week than in week's past and had a tougher time coping with the ups and downs that every day brings with this never-ending saga of Bennett's condition.

Some random thoughts...

How Can You Possibly Thank Everyone?
Those who have e-mailed me an encouraging note, reached out to a total stranger, cooked a meal, come over, called, sent cards, whatever any of you have done to help, I can't list everybody but I thank you all, especially this week, it's been a tough one.

Other Stories Matter Too
Many parents struggle with this and I have been meeting lots of folks. For example Danielle shares her son's story on her own blog, which I follow. You should check it out, it's called Dear Trevor. Mike, another blogger, has a great website d…

A Brief Update on Bennett

I don't want to leave anybody hanging that commonly checks this blog for updates on Bennett. You haven't seen anything for a couple of days because I haven't really had the emotional energy to update or anything else. We need a positive turning point, something to cling to and place some hope on, and we aren't getting it yet.

As of yesterday, a second medication is being added to the mix to try and control his seizures. He still has not had a seizure free day since February 12th. We don't know if the new drug, Topamax, in conjunction with the ACTH, will have the desired effect. Nobody knows. It's trial and error with rare seizure disorders. Don't be fooled, Epilepsy is a serious, SERIOUS issue in the world.

There is a meeting scheduled next week with an Epileptologist to evaluate him further and start opening discussions (I think) for surgical options. An Epileptologist is a Neurologist with more training specifically in the field of Epilepsy.

Anyway, that'…