Saturday, February 12, 2011
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.
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.
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.