Saturday, February 12, 2011

Two Years


OK, so it's been two years. That much we all know.

Two years ago today, since Life as We Knew It Changed Forever.

There really isn't a whole lot to say about it that hasn't been said already. I've done quite a lot of writing in the past two years. There is one thing I wanted to make sure I clarified from the last post that I wrote about not feeling any Survivor's Guilt about Bennett's lack of seizures since his surgery.

Actually, a couple of things now that I think about it.

First one is...James, whatever it is you are smoking my friend, can you pass me some? Where in the world did that comment come from? I can only guess, and this is just a guess, that it comes from the fact that you are a single guy who maybe catches bits and pieces of this blog.


It's no big deal really, in fact, it made me smile ear to ear, cause it was such a pleasant reminder not only of how much I missed interacting with you as often as we used to but how much I love your personality and enthusiasm.

But honestly? Things are so far from having really improved in the technical sense. The Seizure Freedom thing is absolutely a cause for celebration, certainly, but it only means that Bennett has not had seizures since August of 2009...he still has all of the devastating results of six months of never-ending Infantile Spasms, the removal of around 1/3 of his brain, PDD-NOS (I write that with the usual skepticism) and off-the-chart developmental delays.


Ten years ago it would be no big deal for most people in this county to give him the label of Mentally Retarded. They don't do that now, but essentially he is severely, severely, severely developmentally delayed. At his last evaluation for his IEP (Individualized Education Program) that the County, as mandated by the Individuals with Disabilities Education Act, has to test him for, he pretty much tested as an 18-21 month old.

The boy is over 3 years old.

The Autism Spectrum Disorder diagnosis of PDD-NOS is there because of some behavioral traits he exhibits that put him there, things like repetition, problems with socialization, aggression, self-abuse, fixation on certain shapes and objects...and so on and so forth.

So while I might have even mis-wrote my last post to seem that we were happy about things, I certainly didn't MEAN to...I am grateful that he hasn't had a return to seizures, because so many of a lot of the kids that I have been following since this sleigh ride started, many of whom who have had surgery, have relapsed and had seizures.


Which brings me to my second thing I wanted to clarify, something that Reighan's Mom brought up. She wanted to be sure that while it was OK that I not have Survivor's Guilt and not always compare Bennett to other kids (which I actually DO sometimes anyway but not in the way to measure success/failure, but I'll clarify that part in more detail another time) that I should remember to consider myself lucky.

Of course I do but of course I also do not. Lucky to me, honestly, would be if he were perfectly normal.

But he isn't, so let's concede that and consider the statement for how I believe it was intended.

I'm a human being, first and foremost, and I am flawed. I will, at times, say to myself how fortunate I am that I have this or that, and other times I will forget those things and lose sight of that fact and then I need a reminder from the outside or I need to find one on my own.

Human nature.

But I do strive to always maintain perspective. There are people who have it worse than me, there are people who have it better than me. But that truth applies in every single aspect of my life. The fact is, that I have to manage that perspective in EVERY part of life, not just when it comes to my disabled son. I have to manage it everywhere, all the time.

It's a part of trying to make the most of who and what you are. And not evolving into 100% Jackass as you grow older.


I hope I have shown people, those who read these words and those in my daily life, that I do try to maintain a balance of appreciation of the positive. I fail sometimes, but I try. And the effort is where the meaning lies. Because when I do fail, and fail I do, I recognize it and continue to keep trying.

So I wasn't trying to come off as sounding too proud or superior when I was talking about Bennett's lack of seizures, or that I did not appreciate that, or recognize how badly other kids have it, because I certainly do, or that I am not thankful for the good, because I am.

But I also exercise my right to be frustrated at the continuing struggles of Bennett, the added struggles of having Carter now develop his own medical issues and a whole brand new set of variables I had not expected to be dealing with hitting me from new directions this year.

All with due respect for those who have it worse AND better than we do...essentially the rest of the human race, for whom I try as hard as I can to hold no permanent judgment over (only temporary bitching from time to time) and only ask that the same courtesy be extended in this general direction.


Well, except maybe for Home Health Aides. I am starting to now develop a genuine built-in predisposition about them, and this is a dangerous thing. The new one? Gone. She called in sick Thursday 45 minutes before the start of her shift and didn't even show up on Friday.

I called the agency on Friday afternoon and told them not to bother having her come out at all on Saturday for her scheduled shift. This pretty much FUCKED everything we had set in motion for the entire weekend.

Now the first Home Health Aide we had was pretty good. We actually had her move to this agency so that we could get her hours increased under Health Check, some kind of state or county service, so we brought her to the agency. She only got a little dicey near the end, after she had decided she was going to leave for Nursing School. And frankly, I get that. At 23, I went R.O.A.D. on a couple of jobs myself.

But these last two horror shows were ladies sent to us FROM this agency. That makes the agency's current record 0-2. Not a good way to start the season. Something is definitely going to have to change. I just don't know how to do it yet. But I am working on possible solutions. In the meantime?

Stress levels go back up.

Dammit.


Anyway...I hope that clears up any misconceptions my last post may have generated, if it generated any at all. It could all be in my head. My head is slightly more jumbled than usual. It'll clear up. Gotta cold though, for the past week or so. So it may take a while.

OUT.

10 comments:

  1. One of my favorite thoughts (and I now don't remember if it was something I created in all my bitter glory or whether I heard it from someone else) is for when people say "it could be worse." I say: "it could have been a whole lot fucking better."

    Hang in there. I'm not bitter enough to not believe that love conquers all.

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  2. Thanks Elizabeth...not just for one of the best quotes of a lifetime, but for actually leaving a comment. Means a lot.

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  3. The Home Health Aide stuff totally BLOWS. Jeebus.

    Is the plan now to find someone on your own and get them to sign on to the service so tghe cost will be covered?

    To the good, the bad, the delightful, the annoying, the hilarious , the horrifying, the enlightning, the exhausting, to all that is and will be, cheers. Toast all that is ---- even if it's a toast of nothing but expletives.

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  4. I hope my last comment didn't offend you when I said Bennett's seizure freedom was miraculous. In all honesty, I believe it is. But, never did I mean that just because of that I think you should be all rays of sunshine. I know that stopping the seizures is only the first step in this nightmare. The damage that has been done cannot just be undone. These disorders come with a whole lot more than just seizures. I'm just relieved for your family that the seizures are no longer in play. That's one less battle you're facing at the moment.

    I look at Austin all the time and know how much worse we could have it. It helps to a certain degree, but it never changes the fact that it's not good enough. And if I thought it were, I wouldn't still be fighting for him...the same as you're still fighting for Bennett. We're thankful, but we want more. Always will.

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  5. This is the first time I post a comment here, even though I follow your blog and Bennett's story since you started posting on the infantilespasms.com forum... I was instantly attracted by your writings, so direct and touching. We started our own IS "adventure" just a few months before you. My son Javier had his first spasms on October 2008. I can't remember why exactly, but I found many similarities between our stories and since then I just feel more and more identified by your posts. It's been 2 years since Javier's last spasm but he's not catching up as I hoped he'd be. He's not verbal, he's sometimes aggresive, he has fixation for fans and spinning objects... feel familiar? And I feel sometimes lucky and sometimes sad, sometimes hopeless and sometimes hopeful. I'd just want to be able to express my feelings as you do in my blog (only in Spanish ;-)

    However, I just wanted to thank you for your openness. It has helped me to understand my own contradictions and mixed feelings.

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  6. Kim:
    Maybe. But it's 1,747 on my list of things I am backed up on as far as stuff I need to get done...putting together a Home Health Aide search. IN the meantime we will just have to make do with us.

    Holli:
    Not in the slightest bit whatsoever. In fact, I took your comment as steering me in the direction of the divine, which was fine by me, I don't mind anyone slanting a little religion into how amazing it is that he has been seizure free for this long.

    But no, I wasn't offended, I just wanted to be absolutely sure I made it clear that I was grateful of the fact and acknowledged its significance while at the same time also acknowledged that, and this pertains to you, D, Elaine, Sinead...all of us, that even IF the seizures stop, the damage is done and often far-reaching.

    That message needs to be made more clear to the people who DON'T have the kids with the seizure disorders. Even a single seizure can have lifelong, lasting consequences.

    I don't know how many times I have had to take people aside who, after I told that the surgery stopped Bennett's actual seizures, said to me 'that's great so everything is going to be OK now that's terrific' and explain to them why everything was NOT going to be terrific.

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  7. Thanks Pablo, that means a great deal to me. I wish I got over to he IS message board more than I do. Which is hardly ever any more. Message Boards are sort of a dying breed, now with blogs and Facebook and other Social Media.

    I'm honored that you read this, and follow it, and that you took the time to share your comments.

    And oh yes...the story is VERY, VERY familiar.

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  8. That is GREAT that you do not have survivor's guilt. There is too much other shit in our lives to feel guilty about. It's not like Bennett's seizures just stopped out of nowhere. He had to have major brain surgery to be where he is at now and "where he is at now" is not close to what we imagined him to be at now. Life is still very hard. I think I'm saying all of this to make myself feel better. Because I didn't think Sophie's seizures would come back. I was way too optimistic about them. I was focused on her ADHD and aggression. It was and still is very overwhelming for me. So it wasn't like I had the time to bask in the seizure free light. And I'm not saying all of this to try to make you appreciate something. I'm saying this because our lives are still overwhelmingly chaotic because we have a special needs child. And I keep wondering when it is going to get easier. I am wondering when I get to stop fighting on behalf of all her medical issues. This life is so fucking overwhelming. And something as serious as major brain surgery is not enough to fix everything.

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  9. I hear ya, Elaine. One does expect that something like Brain Surgery, and those are HEAVYWEIGHT words, the exact polar opposite in packing a punch (unlike Infantile Spasms) and so you expect the act itself to pack the same kind of punch.

    I guess in many cases, it does, just like any surgical procedure. There are the 'miracle cases'. We've seen them all, read about them. Those are all the ones that you see on 20/20. Not ours.

    Yeah...no Survivor's Guilt. But Guilt Guilt? In spades...I'm going to have to sift through all that and figure out a way to forgive myself in the long run for all I feel I failed to do. I'll explain all of that eventually.

    Hope Sophie is doing better...it's all I can do really. She's never far from my thoughts.

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  10. I continue to be amazed by your honesty and straightforwardness ...I find it refreshing,endearing and I come back,time and again for that and of course because I have fallen in love with that littlest son of yours... still loving that smiley bathtub picture by the way.

    Two years?Feels like a lifetime in some moments,doesn't it?Mind blowing what can be packed into such a short amount of time.

    I am ashamed to say that I once fell into that judgment place of better and worse off.Not proud of it but no more.I really try to remember that we all got stuff.All of us and we are all just trying to find our way through it.


    I am with Elizabeth in both counts ...

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