Tuesday, May 26, 2009

Where To Put That Limbo Stick

Yeah, hey...LIFE? Yeah you heard me. Wanna know where you can put that Limbo stick? You guessed it, right up the poop chute.


I hate this waiting, and waiting, and waiting, and waiting to have appointments, to get to next stages of treatments, to get forward momentum.

Why?

Because 3 to 6 times a day I have to watch this happen.



Again.

And again.

And again.

Just FUCKING sick of it. I want to help my son. I want him to get better. You hear that grunt in the video? That's new...must really be contracting in the torso to force the air out like that. Anyway, I made that video yesterday, for anyone who is keeping score. The last one I showed was from April, around 5 weeks earlier. I dunno, doesn't look to me that the medication helps much. But I'm no doctor.

It's just bullshit...I know, I know, it could be worse. I get that. He could be dying, he could lose his arms and legs, he could have a disease that has NO cure at all. And truthfully, I respect that as a 'Life Philosophy of Being Hopeful and Counting Your Blessings', but the fact is that miniaturized aliens could fly out of my ass and attack my son too, I guess ANYTHING can happen that is bad to people and in the scheme of things this is not as bad as some...but it still stings like a BITCH and I want to vent about it.

Anyway...I guess my optimism of a post or two ago is being challenged right now. So be it. Happens. I'll find some strength from somewhere and move on. But as of this writing, I'm just spent and pissed. Slept horribly last night, tossed and turned. Sometimes I think you should just get up in situations like that and start doing stuff. But you hope that somehow you will find that zone, but then you look at the clock again, and realize...this is gonna be a LONG night...

I can't get to sleep
I think about the implications
Of diving in too deep
And possibly the complications

Especially at night
I worry over situations
I know I'll be alright
Perhaps it's just imagination

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away

Alone between the sheets
Only brings exasperation
It's time to walk the streets
Smell the desperation

At least there's pretty lights
And though there's little variation
It nullifies the night from overkill

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
Come back another day

I can't get to sleep
I think about the implications
Of diving in too deep
And possibly the complications

Especially at night
I worry over situations
I know I'll be alright
It's just overkill

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
Ghosts appear and fade away
Ghosts appear and fade away

8 comments:

  1. I generally make comments like I'm going to write a letter to PETA or DCFS, when I see certain videos of pictures. Well I male those remarks as a joke, but it's no joke when I see Bennett' videos, and I literally feel like writing the assholes that aren't researching this stuff enough because there are very few cases. Thank heavens there are few cases, but it's still and illness and it's still painful to everyone involved.

    Like I've said before I'm bipolar, but generally, just major depressed, and they make the same with us. There are a a lot of people in the world suffering from it, but as long as they see us as a font of revenue, they'll never try hard enough to find a cure, they just research the bare minimum to make the pills that keep us in check (and that we have to buy every month), and look no further. I spend a small fortune with health care every year, and I still have no health.

    Bennett' seizures seem different from the ones you showed before, the went from a head jerk, to a full frontal contraction of the head and torso. Like you say - I'm no doctor - but that must mean something.

    I just hope they'll tell you what it means soon, and how they are going to stop it. And if not cure it, and least, treat it effectively.

    I don't ever want kids, mainly I guess now, because I'm nowhere near ready to suffer what your family is going through, because this isn't just the Ken and Jen show, Carter is there too, and he seemed very interested and concerned.

    If I sound a little hyped it's because I am, because some things should be a priority in this world, and yet we see they aren't. The medical community disappoints yet again.

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  2. Ken...I think we share a brain. Although when I use potty words...somehow it always sounds wrong.

    There are good days. And there are bad. Somehow the good days are always haunted by shadows anymore. Nothing is light. And completely happy.

    I'm working on an ulcer myself...

    ((((hugs))))

    Hang in there...

    I always say that when there's nothing else really to say.

    btw...when do you see Chugi?

    ...danielle

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  3. Somehow thinking how much worse it could be has never really helped me either. It's hard to compare anything with what we are going through because it's still life shattering to us regardless.

    But what really does help me see past the darkness sometimes is celebrating every single new skill or milestone. Because that means despite the countless seizures, that little brain just learned something new!

    I'll never forget what Dr. Chugani told us...those who continue to develop despite the seizures tend to have the best outcomes and/or are surgical candidates. And Bennett is doing really well considering. Really.

    Keep your chin up...like you said yourself earlier, every new corner is a new possibility. It will keep you going.

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  4. Oh, Oh...Men at Work...they are awesome!

    Thank you for the video of Bennett. I wish......you know all of those so I won't burden you with a repeat here.

    Still praying, hoping, etc...have really enjoyed your posts of late.

    To Telmo: I agree 100%. This will be very politically incorrect but, I speak from some experience, my father died from ALS. The money spent on BEHAVIORALLY acquired diseases FAR surpasses that spent on the less glamorous genetic diseases...and that is a crying shame.

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  5. To: Dora's Daddy. Not to mention is a hell of a lot more profitable to treat an illness (that requires constant treatment) than it is to actually cure it.

    Chronically ill patients are a cash cow to the pharmaceutical industry.
    I have to buy my pills every month, and even though a month has generally around 30 (or 31 days), my pills come in blisters of 28, is that a coincidence?
    Sleeping pills are even worse, they now come in blisters of 14 pills at the most. For those that have to take them every night, we need at least 3 boxes a month, and the doctors love to point out that 3 prescriptions a month, is a little too much, what the hell am I going to do? Sleep only a few days a month? Because the pharmaceutical industry thinks only blisters of 14 pills, are safe?

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  6. Telmo:
    Yeah it does suck, but what can you do? It's far more important to the pharmaceutical researchers to cure baldness, reduce laugh lines or enable old geezers to be able to pop 4 hour boners than stopping a child from slowly frying his melon.

    Danielle:
    My wife asked me not three seconds ago if anyone ever felt I swear too much in my blog. I said no, not really. In fact I said that most likely people THINK things that I might write way more often than anyone would admit.

    Except you, of course...your always honest with me and everybody else. And I like that you contain it...makes your posts that much more 'you'. Way it should be. But if I use the gutter talk too much I do apologize.

    Holli:
    I'll get there. I actually am there some days, celebrating the good and pushing back the bad. IN fact later this evening, even after the crap cluster of dinner, we had some quality time together. So there was good.

    Richard:
    Love Men at Work, but Colin Hay solo is awesome. Especially the acoustical stuff.
    It is SO weird to have who is probably my life-longest friend (from what...age 13 or so?) having a conversation with a friend I met online and have never actually met in person. Not that I mind it, it's just odd to have this kind of collision of worlds. :)

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  7. Okay, so I'm posting another comment because I just got the chance to watch the video (can't watch them at my house). I literally have tears in my eyes. These are SO similar to Austin's "strong" clusters. It just broke my heart to watch them..I'm hoping Dr. Chugani will have some answers for you.

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