Friday, June 24, 2005

. . . And New Heroes Emerge

I have been witnessing a young woman and her husband sharing their lives as they've gone from one pre-natal diagnostic test to another, going from the possibility of trisomy 21 to the realization that their baby indeed has trisomy 18 - a condition that is more often fatal at or near birth. I have been speechless, watching events unfold, mostly because there have been others better equipped than I to support her. Today, she posted their decision. I cannot think of many situations more bittersweet than this, or people more heroic than these.
*husband* and i have decided that we're going to continue with this pregnancy as long as we can. as hard as it will be, this little guy is still our baby and we're going to do everything possible to get as much time with his as we can - even if it's only a few minutes. they'll be worth it.for those who pray, when you think of us, you can pray for the following:- that the pregnancy will go full term- that our son will be born alive- that we'd have a few days to spend with him- if it's not asking too much, that we'd be able to take him home for a bit and then to church to have him dedicated- that peter's family would be able to meet him and be there for the funeral (this is a lot to ask since his parents are missionaries in the middle east, his sister will be starting a job with a missions group in spain, his older brother and family are in southern california, and his younger brother is enrolled in the naval academy in maryland - my family is all in the country at least)we're not at the point that we've fully accepted this (and may never be), but we know that we can't change anything. the only thing we have any control over is our own attitudes. for me being sad, depressed and angry isn't good for the baby and he's the number one priority now.thanks for all the support i've received here.
If you pray, pray for strength for this couple. ". . . Love bears all things . . . "
I have two new heroes, today.

Another One Bites the Dust
At the Aerospace Museum in San Diego's Balboa park, you can see Mr. Cunningham's F-4, tilted on a stand behind a MIG fighter just like the ones he shot down. It's hard not to be moved by the display. The visual impact of that much hardware hurtling through the sky is as intimidating as hearing the rumbling sound track of "TOP GUN" was in the theater. Ace Cunningham claims to be a major inspiration for that story, and I have always seen his service to this country through that lens. My college roommate worked his way through ROTC and became an Air Force pilot and officer, in a time when I often kidded him about flying in planes "built by the lowest bidder". I even had the privelege, once, of taking him out to Miramar and seeing his own F-4 "Double Ugly" one day. I am proud to have known, through my parents, fighter and bomber pilots from WWII, these men have epitomized integrity to me.
I have been waiting for some time for this statement from Mr. Cunningham, and I will withhold final judgement until any investigation is complete, but calling this an "error in judgement" is tantamount to calling the captain of the Titanic "negligent". This transaction smells so bad even I can taste it. This should never have happened, period. And he knows it. And he knows that we all know it, too.
I still consider myself naive when it comes to politics, and I know that things do not always appear as they are. I saw an interview last year with Bill Clinton and Bob Dole, these guys actually like and admire each other. In my opinion, posturing and saying outrageously partisan things is, like professional wrestling, an unnecessary but traditional part of the process. It rarely affects the outcome, but makes the job look so much harder.
Yesterdays' Reader is an example of a half-told story. I'm all for Congressmen doing due diligence, and I don't have any particular aversion to them staying at the Sheik's araby while doing so. But now, the odor of one transaction starts to permeate all of these situations. He becomes just another public servant putting his golden years before the reasons he became a public servant in the first place. He may think he's earned it, but he has done so at the expense of his reputation, and that of his office.
It has to be about more than not getting caught. It has to be about more than cashing in. Please.

Monday, June 20, 2005

I keep reading that there’s a huge slump in the numbers of people going to movies. These reports cite polls showing that people would rather watch DVD’s and pay-per-view at home. Well, DUH!
Let’s begin, as all things should, at home. Prying a family of four away from the obligations, video games, and other distractions at home has turned into quite a trick. The attainment of two little kids fully clothed with shoes on often seems like scaling K2 in scope and difficulty. Then there’s the gas, particularly wasted idling around the parking structures and lots of these megalopolis malls, where you meet the nicest people vying for that one open spot two rows over. It’s nice to know that so many people think I’m Number One!
Standing in line, trashed bathrooms, overpriced food-court food. I just love contact with my fellow Man.
With matinee prices starting at $8 a pop, that means $32 for my family to purchase tickets. What’s a movie without popcorn and a soda? Another $25 bucks or so, uh-huh. Put that up against 5$ for a DVD and another $8 for goodies at home, and we can pause it while you go potty or get a drink. And we do.
Now, my family is still trying to do our part, we see probably at least one movie a month as a family, but the sticker shock is becoming awe. It is pretty cool to see the look on Emma’s face during a movie like "Madagascar", where the big screen and sound seem to captivate her and make her wide-eyed. Last Saturday, we saw "Sharkboy and Lavagirl . . ." She fell asleep in the stroller (some people use strollers to smuggle in sodas and candy – In fact, I’m convinced that that’s how the first "dirty bomb" will be delivered, and I don’t mean a forgotten diaper) before the titles were over. I fell asleep about 20 minutes into it, myself, snorting myself awake a couple of times. Truly a movie aimed at youngsters – there was nothing there for anyone over (or apparently under) 8-12 years of age. That doesn’t mean that I had bad time – I’ll take a nap whenever I can get it. Sharkboy needs more acting lessons.
As for continuing to feel "not sorry" for movie executives, seems to me that DVD revenue’s gotta be pretty good, else they wouldna’ be so many of ‘em. The ever-narrowing gap between movie release and DVD release signals that maybe they’re not so discouraged, after all. They’ve even developed a new method of releasing the first DVD right away, and then releasing an "enhanced" version a couple of months later – with all the extras - so that the fan now has two copies of his or her favorites. You movie guys’s impoverishment is truly breakin’ my heart. And then there’s timing of release. "Hitchiker’s Guide to the Galaxy", released a week or two before "Star Wars III" – there’s a bit of Gumpian Wisdom, ‘cept it didn’t work. You can’t see them, Forrest, for the Sith.
And just one other thing. Stop churning out crap. Pixar is successful because the story comes first. Sharkboy and Lavagirl needed 3-D – better to have objects coming from the screen, rather than being hurled at it. The glasses prevented anyone’s aim from being accurate enough to hit the screen. Besides, who in their right mind would throw jujubees at the screen, when they are about a quarter apiece?

Moving On

Anybody still here?
It’s been an interesting week here on lake Woe-Be-Gone. A few things have occurred since my latest rant and pity-party.
Unfortunately, this is going to take a little explanation. Some unnamed (although we know who it is) administrator has decided that it would be a good idea for the support departments to "flex" their hours up and down (it only means down) with the number of patients in the building. What this means for my department is that we are being asked, from pay period to pay period, to take time off from work. This time off can either be supplemented by one’s vacation pay, or taken without pay. The net effect is that I no longer have a full-time job. Combine that with the fact that the average pay "raise" is running at 2 percent, it represents a net (there’s that word again) loss for all of us. To this lovely recipe for morale, add the realization that none of our "sister" hospital support depts are "flexing", and you have one motivated bunch of mofos. Since we are all taking time off, that means we get to work the other shifts to accommodate our swing and graveyard (funny, they don’t call it that at the hospital) shifts, too. So I have a part-time job with variable shifts. Let’s move on.
About a month or so ago, my Director announced that some of us might be able to "flex" our hours over to the Biomed department - - do some work for them, and get paid out of their cost center. A few weeks went by where we’d already met our quota, but then there was a period looming with a huge deficit. So I put in for a week in Biomed. That was last week.
I also was given an opportunity to apply for a job. My haphazard attempts at resume-writing were assisted by a friend, and off it went. Hold that thought. . .
Last week was alright. I happily emptied out storerooms. Ironically, the stuff I was throwing into the dumpster was the very equipment I’d been hired to repair in 1986. Karma, anyone? I got to repair some equipment, and even troubleshot and fixed a few things. I delivered and picked up devices, and saw places in the building I hadn’t seen in several years. I swapped out a defibrillator in the Labor and Delivery recovery room, the room where Vicky got the news that Emma has Down Syndrome in, as she came out of the anesthesia. They’d wrapped her in a multi-colored blanket and given her a special cap. It’s a moment in time that is, shall we say, burned into my memory. Bittersweet. I inspected and tagged equipment, helped do a pre-inspection sweep in the lab, and saw the new surgical suite across the street.
I returned to the shop on Tuesday to find a phone message from my prospective employer. Thinking that returning the call would be a matter of setting up an appointment for an interview, I dialed away. It turned out to be a 20 minute Human Resources phone pre-interview, in full earshot of my shop-mates. She told me I’d hear something in a couple of days. It’ll be a week, tomorrow. Que Serah, Serah. Let’s move on.
My Dad had unscheduled gall bladder surgery on Friday. He’s fine; it was just a little bit unsettling for all of us.
It was the last week of school. Sam’s now a third grader, and we’ve got some grainy, hand-held video of Emma’s kindergarten graduation ceremonies. I’m proud of both of my kids.
So it was a good week. I came home from work on Monday, and Vicky asked "how did your day go?" "Pretty good." "Really?" It’s nice to surprise her every now and again. . .

Thursday, June 09, 2005

Achieving New Heights of Mediocrity

This blog was mentioned in the New York Daily News, yesterday. I wasn't really expecting it. A friend of mine, Tom had referred an email with several questions about blogging as a parent with a "disabled" child. I dutifully answered the questions; one of my points made there was, as Tom pointed out in his blog yesterday about the term used in the article - "Down Syndrome kids" as opposed to "kids with Down Syndrome" (they are people first!) - that this blog was about lots of stuff, being Emma's Dad was only part of it. I agree with Tom that this article was probably edited severely; there was nothing resembling the info that was asked for. At any rate, if you're here as a result, and are interested in stuff relating to being a parent of a "disabled" child (I'm not touching that one at the moment), you need to dig back a little ways. I've been (obviously) doing some different stuff, lately.
So, I got a message yesterday saying that my blog was often thought-provoking, but this person's first impression to many posts was that I should "stop whining and move on." I've thought a lot about this. I'm going to say publicly that this person has infinite credibility with me, and has earned the right to speak their mind, perhaps as no one else I know. This does not change my relationship with them one iota.
I guess it's time to state what I think should be obvious to anyone paying attention. I cannot move on. I'm stuck. I'm a middle-aged man with a seemingly fine intellect, a mind "all dressed up and nowhere to go." Four months after my happy life was kicked in the stomach, I entered a special circle of hell where I was (and still am) allowed to daily see the fruits of my previous career wither and die before my very eyes. I have participated in the Employee Assistance Plan. I have seen a psychologist. They all tell me that I'm coping very well, and, while I'm welcome to schedule another visit, they don't see any major problems. I guess they didn't want to hear me whine either. I have pursued just about every available angle in terms of finding suitable employment and support for myself and the 3 other people that depend upon me, to no avail. I have taken anti-depressants. I have spoken with my pastor, who looks across the table at me and says that he has no answers. I don't think anyone has the slightest idea of how very angry, powerless, and alone that I feel. If I'm whining here, it's because I have no where else to go.
But I am trying to move on. I've been slowly divesting myself of some of the things that have only served to magnify this anger. I'm trying to tell the truth. I think it is hard for others to understand. Part of the problem is that this becomes ultimately isolating. I think "polite society" was a major force, in the past, at making disabled people invisible. Although great strides have been made, I can't explain to you the emotional energy it takes, sometimes, just to sit in Taco Bell with my daughter, making inappropriate noises and just being herself, realizing that you are now the "floor show." Call it courage, call it stoicism, call it "making the best of it", but the energy this takes has had the practical effect of cutting my families' net output in half. I'm sure that many looking at us from the outside don't understand why we don't do more, but I'm also pretty sure that they really don't want to know why, and that is that it's just too hard. It hurts, over and over, and I increasingly don't feel like being a masochist, most days. If that's "copping out", my moccassins are size 9 1/2.
I love my wife, I love my children. We have a home together that "ain't exactly Ozzie 'n Harriet" (name that movie, now), but I'm happiest when we're together. We're working hard at trying to figure out what this all means. Some of the outcomes are surprising me. Some of them aren't where I'd necessarily want to go, and I don't know where we're headed, exactly, but the status quo 'ain't happening' for us.
I think that's what I'm trying to get to, friend, and why I'm doing both this blog and not writing you personally. I think I am moving on, although we both may not like what I'm becoming. You've stuck with me through a lot, so far, and I want to continue this journey with you. I need you more than you realize, and you'll never know the depth of my gratitude. Your message has prompted me, and I'll try not to whine. Perhaps one man's whine is another man's whiskey, or something like that. Besides, it's part of being a curmudgeon, and who, I ask you, who is going to take Any Rooney's place - he can't live forever, can he?

Monday, June 06, 2005

An Ancient Parable Draught #1

And verily it came to pass, that a yeast shortage came upon the land, and there was much wailing and gnashing of teeth. "Give us this day, our Daily Bread", shouted the masses, but the priests could only offer Pop-Tarts and the promise of a brighter future. Even the chocolate frosted ones brought no solace, no comfort. Farmers released their aging swine into the streets; the lack of bread meant no ham sandwiches, or even SPAM sandwiches, and they kept procreating because they were, after all, pigs. Peanut farmers’ fields lay fallow, as baseball was not sufficient for them to reap and sow. Tomatoes ripened and then died on the vine, and cucumbers shriveled in lieu of pickeldom. Children cried out "Spaghetti, Again?" on Tuesday and Thursday nights. Two score and ten left them without ales, alas the beverage known as "Bud" only incited the masses to cry out obscenities and the names of their favorite sports teams. The pleas for peace from His Eminence, the newly elected Pope Porous V, the former Cardinal Dunkin were soon merely echoing in the halls of the Fatican. Matzoh and Foccacia tried to stem the tide, but soon the chants, of "No Yeast, No Peace!" and "All we are saying, is give Yeast a chance" soon drowned out those seeking calm and order. Cheese and crackers were no substitute for Heros and Heifenweizen.
Then, one day, when all seemed lost, a stranger appeared. He appeared to be a gypsy, a drifter who was not to be trusted. The first thing people noticed about him was the smell, a slightly fermented smell. That something was a rye, was evident to those with strong memories. "Who are you, they asked, their noses filling with nostalgia and want. "I am a visitor from – the Yeast (like you didn’t see that one coming), and I bear tidings of joy and prosperity to you. Take these seeds and sow them according to the ancient ways, and thou shalt be rewarded." All you must do is be kind to one another, feed the poor, and give everyone a home of their own. But in their selfishness, they set upon him, killed him, and took his stores. They immediately used the yeast to bake bread, make beer, and pretzels, and it was not long until, in their carbo-loaded drunkenness, the precious enzyme had been spent.
The skies grew dark, and the ground shook. The clouds parted to reveal God, herself, nicely attired in a Donna Karan original. "What you have done to the yeast of thieves, you have done unto me! From this day forth, it will come to you again, but to use yeast with anything less than temperance will bring obesity, insanity, and your heads will pound with the reverberations of a thousand hammers in the morning!" And so it was. Nothing had really changed, but there were more headaches.
The End.