Wednesday, February 19, 2014

In Light of Recent Events


Unfortunately, the post I wanted to get to today will have to wait for another time.

Time being the key, operative word here. I don't have as much as I'd hoped for. This happens when you have a youngster with multiple disabilities, one of them related to aggressive behaviors, in the public school system, and you get phone calls that suck you into it's vortex away from your job and away from other things you may have going on.

See? I have a LOT to catch you people up on. So many unfinished rants.

Like Tscychovsky or Schubert, with symphonies left un-done, I have pages of un-refined, un-released bitching I have been itching to unleash. Huh? Who are those guys? Aren't you the dude who likes to talk about titties? And while we're at it...waitaminute...didn't you say yesterday that this was going to be a whole new era, a more positive Lilly? That you were tired of being a Negative Nancy?

Yeah.

That was yesterday.

Today? I'm just tired. And I haven't showered since Monday. I feel gross. I meant to shower on Tuesday. Just never got around to it. Carter was home sick, time slipped out of my hands, and by the time I had to watch the kids at night (Jen works some late night shifts now)...well, I never am comfortable in the shower if Bennett is here without other supervision. I'm just not. And he didn't fall asleep until REALLY late. By then I just didn't care.


Then today, I figure I hit the shower mid-afternoon, after I get some make-up work done. Nope, not gonna happen. Phone call. Remember? So shower has to wait along with everything else. Typing this in short, controlled bursts while I manage him.

Getting a chance to finalize it while he is in the tub. I have line of sight and the tub always (scratch that...most of the time) seems to grok with him. He's cantankerous as all get out today too. Hence...the phone call. But I suspect he has a stomach bug. Some extra poopage even with highly constipating medication. That and a heightened aggression level. Slight change in what he is asking for eating-wise. Overall, something is off about him.

Just wish he could FUCKING TELL ME!!!

Ahh...that feels so much better. Like putting on a nice worn-in old coat and finding a crisp $50 bill in it from the winter before. I can already see I am going to feel much more relaxed this year But yeah...we still have major communication delays and stuff like that out the wazoo. In fact, even though a lot of stuff has changed in a year? A lot hasn't. Just like the rest of ya.

Let's see...I've covered being smelly and unwashed, boobs, feces, classical music, hulking out, hinted at how I am starting to see just how monumentally difficult is with having a disabled child in our public educational system...aren't you glad I decided to come back?

PEACE.

Tuesday, February 18, 2014

Pardon Me While I Check This Blog for a Pulse


There is so much going on with the Internet that I don't know anything about. Or I have a vague awareness of it, but not enough knowledge about it to feel comfortable enough to dive in and become an active participant. I'm sort of a jerk of some trades, master of a few when it comes to all the shit that everybody else is into. It is a bit lost on me to be totally honest.

I guess it is a reflection of who I am OFF of the Internet as well, since I am technologically non-savvy also. The car I currently drive is from 2004. Hey...how about that? Ten years old. Of course, it only has 74,000 miles on it. That's awesome, right? I love a short, teeny commute if not at all. Been lucky. I usually have computers that stretch the boundary of modern acceptability ('Hey wow man...is that a zip drive?') and we still own some televisions that have the gigantic curved backsides. You know, the kind that you can sort of hear when they are turned on even though the sound is off. You just kinda 'feel' it in the air.

I'm not ashamed to admit that, until this past year, I didn't even own a Smart Phone. Can I confess something though? After the newness wore off, I now don't know why I got it.

I guess it is kind of cool, and I shoot some nifty videos of Bennett and Carter sometimes, and I shoot bad, out of focus photos with it.


Though, WAY too many of those photos include me in them. What is that all about? I HATE photos of me, and yet now with the Smart Phone suddenly I am taking pictures of myself and I don't care. Is there a word for that? But that isn't the only problem, because since I got the iPhone? I haven't taken my digital camera out ONCE. I already barely knew how to use it.

Now I have forgotten what little knowledge I had of it at all.

I don't need the sophistication of a Smart Phone because of the simplicity of our lifestyle. We are tethered to our house for the most part, a stay-at-home type of family. I rarely see other humans than the three primary units who I talk about here. I don't have much of a need to send e-mails from my phone. I use a laptop for that. Hell, there is NOTHING I want to do on my phone I wouldn't rather do on my laptop, unless you are talking about actually SPEAKING on the telephone. Then you got me...I'm all up for that. Otherwise, I get all freaky about the possibility of overusing my Data Plan allotment. I obsess over it. I dwell on it. I dream about it if I've had to use the phone for some task on the Internet when the cable goes out.

And I'm WAY too conscientious about how much SOME stuff costs...I'm not going to spend a couple of hundred bucks a month for some maximum data plan when I know I'll never really USE it. It just isn't me. Because let's go back to that vague awareness thing I started this whole dog and pony show with. What ELSE do I really need to have 24/7 access to the Internet for? I mean, for real? Yeah I started a Pinterest, Instagram and Twitter account, but I haven't really DONE anything with them. And Facebook? I hardly ever use it. Not effectively like some people.


I have NO idea how keep it short, so Twitter? Yeah, like you can see me making it work on TWITTER!?!? Not likely. The most fun thing for me to do on Twitter was create my banner. Yeah that's it with the girl from Star Trek. Cool right? RIGHT? Yeah me and my fellow geeks thought so.

After that? I got bored, posted a couple of times and then I haven't really posted much since. Went back to listening to PSY on YouTube. Instagram? I take really bad photos, and I just don't get what Instagram actually IS...it's pictures right? Well, I take pictures here and post them, and I have pictures on Facebook, so why do I need to put pictures in ANOTHER location? See? This is why I am behind the times, I just don't understand. I just don't get some shit the way other people do.

Same with Pinterest. I mean, I understand the CONCEPT of Pinterest, and I tried it a while, and when I am super DUPER bored I go and then.....I look.....and then.....O....K......THERE! I pinned something. Feeling of accomplishment complete. But is that all? Seems like when I go on there 68 people have all pinned the same stupid shit. Then I think...why am I wasting my time? I can just as easily waste it here. I am sort of pinning stuff I like here when I write a post, aren't I?

But it isn't clean and neat and organized. It's random and scattered and HOLY SHIT LILLY YOU GO ON AND ON AND ON!!!!

Then there is Google +. I am in it. I still don't GET it. No idea what benefit it gives me. I know it is connected somehow to my YouTube channel, which I kind of understand, I store my videos there, though I have NO idea how to link the videos and integrate everything together. Bottom line? I could and probably should figure out how to maximize how I use social media, but I feel like it is this gigantic mountain of shit that I will never be able to understand.

Social media makes me feel like the old man in the room who has dusty farts.


I'm just being honest.

I was looking at this blog the other day, giving it a very hard, critical look, trying to figure out what I was going to do with it, as far as the changes I have planned for it, what I wanted to write about after having spent a year away, the length of the posts so I could actually sustain content, shit like that (yes I do think about that kinda stuff) and I was looking at the blogroll at the right. I started scrolling down and was floored at the frequency of the posting of some of the blogs I follow and read. Amazed by some. Puzzled by some others. 6 hours ago. 2 days ago. 1 week ago. 3 weeks ago. 3 months ago. 7 months ago. 1 year ago. 2 years ago. 4 years ago.

Guess my year off wasn't that uncommon. A LOT of blogs, I noticed, are like that.

Just so happens that a blogger who had not posted in a while, though she does with some frequency, posted recently, and I asked her if she thought that a lot of these other Internet sites like Facebook, Twitter, etc., were sounding the death knell of the blog. She wondered the same thing, and added that in some cases these blogs start because many of us come on here with one story to tell, and once the main story has reached a conclusion of sorts we don't continue to write in the blog.


I can see that to a degree. I can wrap my head around it as one possible theory. Doesn't always apply, but I see the logic of it. Why did I just say the same thought three times differently? No wonder these blogs are so damn LONG.

I look at the post count in my blog, and even though I love to write, clearly 2009 I was a FIEND, and that was when Bennett's main story was at the very peak. The onset of Infantile Spasms. The Tumor. The Surgery. The Recovery. 224 posts that year. After that? It was a fairly even spread of 136, then 131, then 104.

Then 0.


Now it is 2. I wish it would SHOW 2013, and give the count of (0) on there.

I WANT IT.

Can't explain why. Well, I can. 2013, as years go? It was a shitty year. Not as bad as 2009, but it was lousy. It is the primary reason I was not writing. Not really because of the distraction of other more organized websites, or because our story had come to a close. Nah...I was tired of being a Negative Nancy all the time, and I absolutely needed to push back from the table and take a fuckin' break from it.

Don't get me wrong...I still wrote this blog when I HAD TO, I just did it differently. Privately. Covertly. My poor, poor family and friends. The lengthy, rant-filled e-mails, Facebook messages or phone calls they did receive. Hey, I couldn't always maintain my complete composure and grace.

Like I said, it was a difficult year.  

No I believe the word he used was SHITTY.

Yeah...that was what I said, wasn't it. In the end, I suppose, you have to be true to who you are, no matter how much energy you spend trying to run away from yourself.

Not sure if that's a good thing? Or bad. Guess we'll be finding out.

PEACE.

Wednesday, February 12, 2014

Five


This doesn't mean I'm coming back to doing this again.

At least...I don't think so.

At one time, I had planned to, as anyone who used to swing by here might be able to tell by some of the subtle graphical changes. but I changed my mind. Decided it wasn't the right time. I often find that I struggle to find anything worth writing about.

But as the weeks turned into days, the days turned into hours, and the hours now counting down to minutes, I kind of figured I would not be able to let THIS anniversary pass without some kind of acknowledgment. Not this one.


I've let many milestone announcements slip by in the year plus that I have taken my...hiatus. If that's what you call it. Birthdays. Anniversaries. Holidays. Multiple clean MRI. Five years smoke free. Changes in schools. Changes in domiciles. Changes in employment status. Holy shit on a shingle, the list becomes endless when you are talking about a time frame spanning over 13 months.

To be honest, I nearly forgot about this one.

I would not have, you just get caught up in Life. But something was happening to me, to my insides, over the past several days. Panic attacks, for one. When I hadn't been having full-blown ones for a long time. Why all of a sudden am I having them daily, and in some cases multiple times in a day? So I sat and tried to think it through, and then it occured to me.

February 12th. Approximately 7:16 PM. I only can approximate the time because it happens to be on the recording I took of Bennett while he was doing it, and I grabbed the recorder about 1-2 minutes in.


It's interesting how life turns on it's ear. February didn't use to feel like this. So...somber.

Don't get me wrong, this time of year used to be incredibly stressful for me, but it also held a lot of fantastic memories, because the world revolved around the American International Toy Fair, which is held in New York City around this time in Mid-February. Since I worked in the toy business for so long, Toy Fair (as we called it, we didn't use the official name, are you kidding?) was a milestone part of our year.

Stress was a huge part of it, but so was the opportunity to GO to Toy Fair, and those times when I did actually go, once the stress factor dissipated, it was hard work but it was also fun to see the people who I usually only got to e-mail or talk to on the phone, or to see the line-up of what the other companies had to offer. And since I was usually working so much I never made it up to New York as often as I did when I was younger (I used lived in Baltimore, remember), I got to chill in New York, which can be in and of itself a fun time, with the right people.


And at Toy Fair there was always an opportunity to hang with the right people. I didn't go often. I was usually too bogged down with work since the show prep was so intense I had to catch up on actual production or design work while the show was going on, but mid-February was all about Toy Fair, just like July-August was always about San Diego Comic-Con.

But these days? Even though I have returned to working in the toy business in some capacity? This is how nutty life is when you cease to be a Dad, and morph into a Special Needs Dad. You can't go back. Ever.

Mid-February is not about Toy Fair. In fact, I had to look up when it was taking place this year. I won't be attending. Mainly because the company I am working for doesn't set up at the show. But still...I hadn't really given it much thought until I sat here to write this.

No, for me, now, Mid-February is all about remembering how our lives changed on February 12th at 7:16 PM while Jen was at the church doing aerobics and I was watching the boys. This was a time when Carter and Bennett actually played together, like brothers normally do. Not like now, with Carter finding a place of solitude as far away from Bennett as he can possibly be.

That's not entirely fair. Occasionally you find the two of them together. And I do take the time to note those moments, wrap them up and treasure them.


But the here and right now is about remembering that first time Bennett stood there with a slight look of amusement mixed with terror on his face, having a seizure while standing up, and I couldn't do a single solitary thing to help him. I just stood there like an idiot...not knowing what the Hell it really was and at the time not even knowing just what we were in for or what Infantile Spasms actually were. I'd never seen them before.

They look like this. Lest ye EVER forget...


Awful to watch, aren't they?

Sometimes better than that, sometimes worse.

I was thinking of linking to another set, one that, I shit you not, has something like 40,000 views. Why I have no idea. It isn't nearly as brutal. But for some reason a ton of people looked at it. He was so chubby in that one because he was on a course of the drug called Acthar Gel, or ACTH, a medication that is often used to treat these kinds of seizures.


At the time, it was around $26,000.00 per vial or some other ridiculous amount, and that is a supply for a little more than a week. Going into the evils of the company Questcor is an insanity I want to avoid right now. Prices are higher today I would expect, not lower the way medication is supposed to work. And...he didn't even NEED it, that's the real tragedy. Because there was a tumor in that brain of his.

We didn't know about the tumor of course. The hospital here had missed it, so everyone was trying to treat him medically, not surgically. And when these spasms stopped (they occurred in clusters every few hours) he still had a seizure pattern you could see on an EEG running 24/7.

All day.

All night.

Brutal damage to a developing brain. All that time it could have been possibly stopped sooner if we'd only known about the tumor and removed it. Because once we did, the seizures were gone. We were one of the lucky ones in that regard. So many of my brothers and sisters I know of? Their kids go in for surgery and seizures still kick the shit out of the kids they love. Talk about tragedy.

Sorry. I guess today is generally a tougher day than usual and why February will always suck, no matter what kind of cool new shit Hallmark rolls out for Valentine's Day, and no matter how many great new action figures are unleashed at Toy Fair. And the weird thing is that when July-August rolls around? It will be much like it was this past year, though the company I work for might set up at San Diego Comic-Con, and I might even go out there, though I am not sure. But I'm certain my mind and my heart won't be far from thinking about how it felt finding out Bennett had a brain tumor and the remembrance of the anniversary of his surgery date, when those seizures finally stopped happening.

It will take effort to focus on product and people. I can do it, but that's why they call it a job I suppose. I look at the amount of time that passed between the 12th of February and I can't remember when in August it happened that we were on our third opinion and we got the actual diagnosis on him.

See, this guilt is a full-circle kind of thing, and today just marks the start of it. Today is the day where it all BEGINS, you see what I'm sayin'? All that time wasted, how much damage could we have avoided had we gone to the right doctor the first time?

I guess the truth is that here, at the five year point, I've realized that thinking about that doesn't get any easier with each anniversary. I always think it will.

Doesn't.

But what do I know?

I do know that six months of non-stop seizures and having a third of your brain taken out does take a massive toll on a kid's ability to learn and function. If I've learned anything over five years? I've at least learned that much.

Is that all I've learned? No. I hope I've learned a great deal more. Some good. Some not so good. But there is a lot of opportunity to talk about that in some other post, on some other day.

Today is just about making sure I acknowledge the 5-Year Milestone...because even though it is still so hard to think about it all and the guilt is still so difficult to overcome, it is worth noting that as a unit we've come a long way.


And while we may not have conquered, we aren't divided. While we might not have thrived, we have survived. While we may take a few steps backward now and again, there is another forward step waiting to be taken at the dawn of each new day.

I'd say that's worth writing about.

PEACE.