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.

8 comments:

  1. It's good to see you here, to read your powerful words and to see that beautiful boy at the top and his brother, mother and you at the bottom! I know about muscle memory -- think it was around year ten or fifteen that June 14, 1995 stopped hurting so much.

    Onward, Ken. And I hope it's here, too.

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    1. Thanks, and thanks for helping me figure out how to do this.

      Looking forward to checking in at year ten and letting you know.

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  2. Ken - thank you. Your writing is always so visceral and real and passionate. It's one of the things I've always loved about you. It's hard to believe it's been five years. You know I'm here for you as much as I can be. You guys are on my mind a lot.

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    1. Hey Phil, thanks. Appreciate you being there.

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  3. Glad I saw this! I remember you telling us in blog land about Bennett's seizures for the first time. Glad you posted...glad you can get some of it out of your head and onto a screen. Not sure if that helps, or hurts, or both. Thinking about you guys.

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    1. Funny, I was just looking at your blog and saw your January 1 post and wondering if I should say anything. Wasn't sure WHAT, but anything. Weird how things work out...

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  4. Wow, so good to hear from you with an update on the family :) I hope Bennett and Carter are doing ok these days. Don't let the guilt get you down too much. We are all subject to making decisions based on what the doctors tell us (not that that helps much). Hope it doesn't take 13 months again :)

    Also, congrats on the job. Hopefully it is something you like :)

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    1. Thanks Kevin. I like it. Wish I could do more than I am currently, but there could be a possibility of that. But for now? It's a good gig and it's a step in the right direction.

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