Wednesday, December 29, 2004

"Crap on a Stick", or "So, Tsunami", or "When Bad Things Happen to Everyone"

This response to a post on a forum about the killing of "Dimebag Darrel", the former lead singer of "Pantera." My poster- friend also has just lost a friend and musician who died Christmas Eve, not from violence but heart failure. The question, as I understood it, was "why is all of this stuff happening" - which is a simplification of what she was asking, but the one that I reacted to:
I have to say that the events of this holiday season have me in a pretty deep "funk", to say the least. I've been reading at (a link from Tom's blog) - there's a collection of links under Tuesday's heading, "TSUNAMIS AND THEODICY" that struggle with this subject from a mostly religious perspective. I think that it is one of the most incomprehensible things that we deal with - this feeling, and the teachings of many - that we are immortal, while the life and consciousness that we call experience is fleeting and fraught with uncertainty and peril. Is is real, or simply a series of beliefs? Today, I don't really know. I just feel alone.
Specifically, our society is not doing well with "the mentally ill" at all these days. The well-meaning opening-up of mental institutions and policies of the 1970's has resulted in several things, not the least of which is a nearly-hidden population of street dwellers, secure in nothing but their freedom to be ignored and uncared for. From what I have read, this individual displayed several characteristics of mental illness, but who then is responsible for reporting it, making sure that he was evaluated? Even then, claiming that Pantera had stolen his music is not cause enough to remove him from circulation . . . and only the police have carte blanche when a civilian even points a gun at them. Shifting gears to a silly example, the behavior in "The King of Comedy" with Robert Deniro and Jerry Lewis - - it is often a very fine line that can separate our aspirations and desires from criminal action.
I'm rambling now.
I'm looking for meaning amidst the chaos, myself. Any clues you could spare would help.
"Ever feel like the world was a blue suit, and you were a pair of brown shoes?"
- George Gobel, appearing on "The Tonight Show"

Friday, December 17, 2004

Not a Creature was Stirring

The rat is gone. It brought excitement, it brought excrement, it brought us together in a special way for nearly two weeks, and now it’s over. I think.
Fade to a Sunday afternoon not long ago. Each member of the nuclear family is doing their own thing, which for me was a nearly engaging football game, which actually means a nap. My focus shifted quickly to the sound of hurried steps down the hallway. “There’s a Rat in the cupboard above the microwave,” she said, with all the certainty of one who’s security has been shattered in an instant. “It looked me in the eye,” she shuddered at me. The message was clear. I now had to offer, at minimum, sound advice, or, more to the point, DO SOMETHING. This was not the last time that this creature would interfere with my favorite pastime.
After a measured period of strategizing ways to safely encourage our rodent raider from his elevated position to the great outdoors, it became a matter of holding a large box in one hand while poking a broom handle into the cupboard, while balancing on a stepladder. It became obvious that I would not be able to balance both myself and a box filled with cookbooks, chip bags, chewed-empty peanut shells and rat poop; it became a matter of taking what I could hold, backing out, tying the doors shut, sorting the box empty (outside!), and repeating until the cupboard was bare. Guess what. No rat.
The plausible and popular theory was that El Vermin had escaped the way he’d gotten in, which had to be the gap between the vent pipe going through the cupboard roof and the top itself, leading to the attic. It was quickly sealed with foam, the mess was cleaned up, and our apprehension was tempered by a sense of security. Until the next morning,
as two fresh “presents” appeared on the kitchen counter. A call to an exterminator, fulfilled several uneventful days later, revealed no evidence in the attic of our freeloader or his extended family, and his expert opinion was that we had successfully withdrawn our invitation to this opportunistic drifter. All was well again.
Wednesday night. Children all snug in their beds, and “The West Wing” engages us as we recline. Suddenly, what I’ve come to recognize as the “heebie-jeebie” sound from my beloved severs my reverie. She calmly informs me that she’s just seen a rat run from the cat food dish to what has to be under the oven. While she says this, she sees it repeat this trip. The next hour is spent, kitchen door open, other doorway blocked, removing the boards from under the cabinets, moving the stove, finding the smelly calling cards of our guest, but no rattus rattus. This guy is good. Possible pathways are temporarily blocked, and a commitment is made to solve the problem in the morning.
Morning comes, and the day is spent rooting around, adding barriers, foaming the smallest possible ports of entry at pipe openings and outlets throughout the house. Aside from the original vent, I don’t see where this relative of the gopher in “Caddyshack” is getting in – or out. It’s not anywhere in the kitchen, if it ever was, now.
I go to bed, shortly after the children do, with the satisfaction of a day’s work done well.
My dreams are shattered to reveal my mate standing over my side of the bed – I’ve come to recognize this, over our time together, as - not a good thing. She’s just had the nerve shattering experience of sending a rat – the rat – from under her desk into the Living Room. I believe the word “peeved” comes to mind.
Peeved, I groggily make my way to the Living Room, festooned with the furnishings and decorations of the Christmas Season. Grabbing a broom, and enabling the only possible means of exit to the front door, which now stands open at 11 p.m., I begin disturbing furniture. One, two trips around the room produce nothing. I shake the lit Christmas tree, momentarily wondering if I’m going to have a rat jump me like the raccoon in “Christmas Vacation.” “Joy to the World” as sung by Clark W. Griswald, rings in my ears.
We have a few cats that grace our lives. Cleo has been summoned, and she wanders around the room, contributing absolutely nothing. Olie (no I don’t remember why he’s named “Olie”, he just is, o.k?) has been banned from the house for reasons relating to his need to mark territory within what is clearly ours, not his. He now watches this late-night show with interest from the front porch. At this point, he is a welcome addition to the hunting party. Pee all you want, buddy, just GET THAT RAT!
Third trip. It’s time to start dismantling the furniture. The next – to – last cushion from the couch reveals a tail, which quickly disappears into the superstructure of the couch.
Man of courage, I pick Cleo up off the floor and toss her onto the couch. She stands up, looks at us, and walks back under the table and sits down. Thank you so very much.
I grab the handle to unfold the sofa bed-works, and it runs out from underneath, heading for the door and Olie, accompanied by the aforementioned encouragement from my helpmate, behind the barrier to the Family Room like a picador waiting in the wings of an arena. Seeing Olie, our perpetrator dives under the stack of guitar cases behind the piano. I can see him trying to be small. The good news is, now Olie is interested.
I encourage the rat out into the open, whereupon he heads back to the couch. I’m tired, and I’m tired of this. I go to the couch, give it a yank, and the meteor streaks out, past Clio lounging, toward the door, and BAM! Olie fulfills his destiny. Taking the prey within his jaws, he trots out the front door. Picking up, putting away, we make it to bed about 1 or so.
I want so badly to think that this is over. I guess we’ll find out tonight.

Wednesday, December 15, 2004

She's My Girl

I mentioned in one Private Message to this fellow - the one that is apprehensive about his unborn child - that I thought that my daughter possesses some "spiritual gifts" that set her apart from the rest of us. My correspondent asked what I meant:

It's hard to explain, of course. Here's an example. We were selling some kittens through the newspaper. In the course of a few hours, we probably had 8-10 different groups of people come in the front door to see them. This kinda scruffy looking guy (to me) walks in the front door, and here comes Emma, full speed down the hallway, and she just throws her arms around him. He gets down on the floor and she just hugs him and won't let go. He then explained that he has a younger brother with DS. She knew.
She has a sense and an empathy for certain people. She's only 5, and she cannot speak more than about 8 words, but she communicates love and compassion in ways that defy description. People are drawn to her, not repelled. You cannot meet her without smiling. I've seen her melt the hardest people I know. Understand, she is also a stubborn little girl, and it is often very hard to deal with her. She pulled over the Christmas tree a couple of days ago. It's like, the highs are higher, the lows are lower. But it's so much better than I expected when we got the news when she was born. She's my girl.

Why, Again?

I then received a Private Message from the same guy, asking me how God could allow babies to be born with defects, etc. I may be repeating myself with this one, but it's same song, third verse. By the way, his wife is pregnant with their first child, pre-ultrasound. There was concern in his post :

I'm glad you PM'd me. I was afraid that you'd think I was picking on you.You have to know that I've asked myself those questions until I can't ask them any more. I'm no theologian, but here goes.I think that sin, defined as separation from God, exists and affects everything we know. That includes genetics, be it from pollution, poor choices, or our gaining knowledge and expertise with manipulating it without ethical consideration. The Old Testament describes "the sins of the fathers will be visited on the subsequent generations" (something like that, I'm sure you know what I'm talking about). I think that this was a way of stating that our actions do have consequences, but I don't think it means that we can take liberties in ascribing stuff we see to prior things we might not approve of, if that makes any sense. Speaking personally, we had our daughter when my wife and I were both 40. The possibility exists that the DS was a result of our age. Does that make us responsible? Yes, in a way. How many healthy babies are born to 40+ year olds in this world. A lot. Am I being punished for something, or did I just win some sort of twisted lottery? Should I feel guilt about what may or may not be, ultimately, my fault? I sincerely don't know.It is so easy to get messed up by semantics. I once thought, "will I recognize my daughter in heaven, if she is "made perfect", would I be able to know it was her? Then I thought the reverse - would she know me?" - as I'm pretty imperfect here, too. How am I to know that she is not more "God-like" than I am, with her simple mind, capacity for love and acceptance that she shows everyone?Just as one can stare into the stars of the Milky Way in the desert (something I love to do), I think that our lives, sin, our direct choices, those things that we can't control, the good that we do, weaves a web that we can't really unravel. That's the best explanation I've come up with. We do the best (usually) with what we have.There's too much that happens, I think, that defy any explanation. That goes for miracles, as well as the bad stuff. I sat in a Sunday School class, about 10 months after Emma was born, and heard an old friend give God the glory for helping his family find his daughter's retainer that week. It made me kinda wonder what the hell I did to deserve this, if you can understand that. One more thing. To your first question, I think he allowed it when he introduced sin into the mix. He wanted us to have a choice to love him or not, which meant accepting/allowing the consequences of us choosing not to. I don't think it's fair, and I hope to hear an explanation from Him myself, someday.I hope all is ok with your child. My testicles lurch up into my body every time my son runs across the street in front of our house. Worrying is part of being a good parent.Does any of this make sense to you?

Ironically, Enough

The same day I read the afore-referenced editorial, I happened upon a discussion in a gaming forum, of all places, about religion, homosexuality, and the like. In response to what I considered to be a fairly ignorant post, I wrote the following, repeated here for your morbid enjoyment, if you read my blog regularly. The dilettante philosopher rails on:
haven't seen this thread in oh, say 26 pages or so. But I feel a need to comment here. As the son of an evangelical pastor, I have seen and heard enough arguments on enough subjects to kill several horses, and then beat them. As a student of behavioral psychology, I know of and agree that there is homosexual behavior in the animal world. As the parent of a daughter with Down Syndrome, I am fully aware of the impact, variation, and social stigma of genetic variation. To use a previous example, what if baldness had been labeled as sinful, evidence of wrongdoing? My daughter, in the Old and New Testaments, would have been labeled as "demon possessed", many of her behaviors could be interpreted this way to the apprehensive, uneducated mind. Thank God that she now lives in a world that is beginning to see her as a person who belongs, not a being to be warehoused.
To make my philisophical argument more plainly, DS and perhaps homosexuality are evidence of sin on our planet, not necessarily the actions of individuals. I fully accept the reality of genetic homosexuality. I think that there is an entire spectrum of human sexuality. And I believe that God loves us all. There's more, but enough for the moment. IMHO, in the New Testament, Jesus does not address homosexuality, Paul does, and I think he takes liberties with his Savior's intentions. I think we need to look to the cliche "WWJD" rather than impose the legalistic, arbitrary judgements that Christ came here to turn out (if you believe it at all).

Tuesday, December 14, 2004

Tuesday, December 07, 2004

Christmas Pageant, Draft #1

It’s time for the Christmas Pageant.
Who will you be, this year?
Will you be Joseph, confused and unsure of what is really going on, events dictating your actions, bound by obligations, taxes, and the duties of your relationships?
Will you be Mary, amazed and apprehensive, trusting God while faithfully serving an unknown future?
Will you be the Innkeeper, showing compassion to those in need?
Perhaps Herod, threatened by the coming King, filled with jealousy and fear that truth often brings.
Will you be a shepherd, able to lifted from your everyday world and be filled with the awe of a heavenly host?
A Wise Man, maybe. Seeking after and bearing gifts to the newborn King of Kings, affirming the hope and promise of a followed star.
Christmas and the baby are coming, as sure as each day is crossed off the calendar.
What will you be bringing to the manger, this year?
Perhaps a little of all of the above?

Tuesday, November 23, 2004

Something I saw this morning

Like an ant drowning in a drop of rain,
Freedom closer than I know.
Lost and gasping for something so near,
Yet farther than I can go.
Through the lens of my prison,
Magnified for me to see.
All the things that I yearned for
But will never be.
Soon the struggle will be over.
Waving, swimming soon will cease.
Soon the drops will run together
And my soul will find release.

Monday, November 15, 2004

Ray Charles and Life as We know it.

saw the movie "Ray" the other night. For all intents and purposes, Jamie Foxx is Ray Charles.
My purpose here is that this biopic relates what I’ve come to recognize as some greater truths, perhaps greater questions that I see repeated in the stories of "Successful" people:
Great Art often comes from great suffering, usually over time.
What causes certain individuals to not only overcome, but excel as a result of a handicap/injury/devastating event? Was the talent always there, was it "blind luck", were they exploited, were they driven by it, or ??
(The answer is, it depends. I’ll save my theory for Ray, for the moment).
Successful individuals are usually driven, beyond conventional restraint. This, of course, is what sets them apart.
They (alive or not) are recognized and enabled by another. This relationship typically ends poorly once success is achieved.
There are always others looking to exploit the talented. It colors and poisons all of their relationships.
They are usually lonely people, alienated by the same abilities that make them singular, including their appetites, which often defy convention as well. Addiction is a remedy for loneliness, which in turn ultimately serves to further their isolation.
Fame begets or intensifies isolation. Intense feelings of love and approval from thousands, followed by the absence of same when offstage.
Those who choose to live with these individuals must either accept these appetites and behaviors, or risk rejection. As this is not an option for children, their lives are usually dysfunctional by nearly any definition.
While their legacies influence, comfort and please millions, their own lives are fraught with tragedy equal to or greater than their power, influence, and stature.
So, what do I want from this life?
Ray Charles was a very lucky man, and for these reasons:
He had a Mother who was willing to put his life ahead of her own happiness, to the point of her own heartbreak and isolation from him. She, according to the movie, was the drive for him to succeed, as well as to conquer his addiction to heroin.
He had the intelligence to recognize and learn what he needed to know – how to hear, how to navigate.
Someone taught him how to play the piano.
He learned to imitate the styles of the times – to make a living making music.
He had someone to help him find his own voice, and supported his doing so.
He found an extraordinary woman to love him.
He was able to overcome an addiction that has killed so many in their prime. This movie could have very easily ended where it did, with his death.
I do not admire him any more, or any less as a result of this movie. His is an extraordinary life. The fact that he was famous is only part of it. That he could face his demons and conquer many of them sets him apart from most of us.

Happy Birthday, Sam!

Chuck E. Cheese is one of those one-of-a kind places, a formulation of design and implementation that has heretofore not been duplicated – although many have tried. Most adults do not understand it, but those who do have created a gold mine that exploits children and families for the maximum profit imaginable. The promise of a stress-lessened, provisioned party has been proven, once again, to produce a logistical nightmare akin to standing in the midst of a cattle stampede – holding a birthday cake. Although the warning signs are clear to those that would observe them, this appears to be a lesson that each nuclear unit has to experience for itself. This assures the CEC franchise a long and prodigious future.
We were victimized last Saturday, and the fact that we did so willingly and without reservation – actually we had reservations for 10 kids, a cake, party favors, pizza and tokens – makes it all the more disturbing. My duties as Dad consisted of policing Sam’s little sister and taking a few pictures, which was exhausting enough. Mom bore the brunt of the inattentive, immature, and at times, incapacitated staff. Her aplomb never ceases to amaze me when it comes to taking care of our children. I was ready to get back in the car and drive it into the ocean, before we even got in the front door.
I do not know what reason could possibly compel you toward another "Rat Palace", as my brother-in-law calls them, after reading this. IF YOU DO, please understand that probably every other grandparent and divorced dad with his kids for the weekend is going to head there WHEN IT RAINS. I am not the type of person who loves crowds to begin with, and I would rather eat rolled tacos in my car than wait in line for more than 20 minutes outside any restaurant. I digress – back to our story.
Our plan was simple: invite our young guests a half an hour before our reserved table at the feet of his Chuckness was scheduled, allowing them to "be a kid", as promised. We, arriving even earlier, found a line trailing out of the front door. As the manager explained, they were at capacity, and, because there was and is no time limit – he did not say that the limits lie only in one’s bank balance and ability to absorb noise - that no one was to be admitted until some of those inside had had enough. He attributed their success to the rain that, fortunately, had passed through earlier. When pressed by those of us holding cakes, presents, small children, and reservations, he admitted that we would be admitted 15 minutes prior to our pre-arranged time. This set the tone for the rest of the afternoon. "Being a Kid" in a parking lot isn’t nearly as much fun.
Shifting your attention, I would just like to say that I was filled with gratitude that I had not selected the career of managing one of these franchises as my life’s work. I do not know what that poor man earns; my sincere hope is that he’s involved in some short of profit-sharing program. "Middle Management" only begins to describe his predicament on this, the anniversary of my son’s birth. Caught between irate parents and the befuddled youngsters in his employ, swirling in a sea of token-toting midgets with tickets trailing, lines inside and out, door alarms sounding, shoes littering the floor, beer-swilling post-adolescents to keep an eye on. . . I have to admit it brought a cruel smile to my lips every time I saw him bustle by.
The kids got in, they got pizza, cake, goody bags, tokens, and I think a decent time – 7 and 8 year olds kinda thrive on the chaos for a while, anyway. I took pictures, helped serve a little pizza, got to hug my Mom &Dad a couple of times, and exchange a few sentences with the inlaws and outlaws. All of the hassles of putting on a party at home or the park were just crammed into an intense 3-hour melee in a big, noisy room with 10 other families and their closest friends. I did get to see Sam’s face when he got the present that he wanted, and it made it all worthwhile.
We just won’t ever do this again, unless, of course, Emma wants one. On a Tuesday. In July. Maybe. If we can’t talk her out of it. I’ll even offer Legoland. Please just don’t make me go back there.

Tuesday, November 09, 2004

I Don't Know

I had a bit of an epiphany today - well not exactly, more like an epiphonette, epiphonista. I was attempting to tell one of my co-workers something, and he finished my sentence for himself and me, with a completely different ending from the one I was going to put on it. I was trying to provide him with information that was in his best interest, but, because he had already decided what I was saying, I smartly drew my own conclusion to our social intercourse. Communicatus interruptus. I was, well, not pleased.
It dawned upon me how often I do this to other people, more often than I'd like to admit, and probably most often with those I love the most. I don't know why this has occurred to me so clearly on a Tuesday morning. We weren't even talking about anything important. I guess in my own, selfish thinking, finishing someone else's sentence was evidence that I was engaged in the conversation. What I was being was impertinent.
I resolve to make my best effort to let you finish your sentence. I'm not sure how I'm going to do it, but I will try. I realized, maybe for the first time, today, how important it is to let you say it, even if I think I know what it is. I wonder how many sentences that I've finished the way my co-worker did, and the other person just let it go at that. As Bugs Bunny says, What a Maroon."

Thursday, October 28, 2004

Reality TV

I have had an aversion to Reality TV since its inception, to the point where I’ve wondered why I seem to be so different from the rest of the nation, who say they hate it but watch in the relative anonymity of their homes. I have a physical reaction to these shows; I have to change the channel.
I’ve finally figured out why. I lived it – 24 years ago.
I must first give you some background. I attended a church-owned institution of higher learning. It was a College when I attended, now it is a University. There are a number of these scattered across the United States, perhaps now even around the world. One of the experiences available to their students is a summer "missions" program that takes several forms. The one that interested me, frankly, from the tender age of 12, was a musical group made up of 16-- 8 singers, 8 instrumentalists, culled from these schools to travel, evangelize, and otherwise publicize the schools themselves. Looking back, the circumstances of this junket read like a script treatment for the next season on Fox.
Take 16 strangers, aged 18-21, with all of their regional diversity and immaturity, and commit them to 10,000 miles of travel and concert appearances in 10 weeks, confined primarily to 2 passenger vans, with a cargo van and trailer. Give them one week of intense rehearsal and training in a dormitory setting, followed by an appearance before 12,000 people to start them off. On their "tour", they will spend their nights, either alone or in small groups, in the homes of church members along the way. Watch as the constant confinement, boredom, and summer heat provide an atmosphere for relational fireworks! Watch romance spark, sizzle, and fizzle. See alliances form, and conflict threaten to destroy the group! Witness open rebellion against the status quo and racial prejudice! See them endure physical trials as they perform outdoor concerts in 100-degree heat! Tuesdays at nine on FOX!
Oh, the memories. Discovering Vernor’s Ginger Ale. "Cubby", from Xenia, Ohio, tornado survivor, who sought out and drank TAB. Three kinds of Buffalo wings put out for us for dinner in the church basement in Buffalo, NY. It’s funny, but I can’t remember names, but I see faces, and remember smells. Going to Disney World, alone.
We were allotted $2.50 for lunch. This $2.50 was to be documented via receipt from the culinary provider, and any differences would be paid for from one’s own resources. As my bud , Wally, now a right reverend in his own right, will attest, movie stubs from the feature "Airplane" were not accepted. The physical interpretation of this reality was, well, McDonald’s. A Big Mac, Fries, and a Coke only set you back about 25-60 cents. I cannot tell you how this made me proud to be serving the Denomination of my Father’s employer and Doctrinal guide for my spiritual consciousness. I thought I had made the church big-time. Turns out that means they’ve mastered the art of cheap. We were often left to improvise, with poor equipment, planning, and no resources to help. It is a major reason that I am not in ministry, and why I am not a member of this organization. They sent us out to represent them, and treated us like crap. It would not have taken much to have made this 5000% better, in terms of both human treatment and the product we strove to provide. That is a different tirade, sorry.
I can’t remember exactly when it happened, but the population of the 2 vans became pretty well set. The cargo van, which seated only 2, was reserved for either those who needed to talk out a conflict, sweethearts who wanted some privacy (while traveling, of course), or those who simply could only stand to endure one other person for the next coupla hours. There was often conflict over who got to take the cargo van.
It also, now, strikes me that this was before cheap Walkmans, the PC, Internet and email. We had to agree on stuff like what music to play, today everyone would just plug in their own iPods.
Then there was the people we met. The horn players all ended up at one house one night. The man of the house kept suggesting that they might want to step outside for a moment, he’d understand. Turns out, he thought they might want a smoke, and when pressed, expressed his sincere appreciation that these horn players would give up their summer to play for "those Christian singers." To his Ohio mind, horn players couldn’t be. Another life changed. I had the pleasure of spending a Saturday night alone with a lovely, older couple in Homestead, FL. As we left the main road, headed for their solitary trailer amidst an avocado grove, I had the fleeting feeling one gets as a horror movie begins to unfold. It passed, and we settled into the living room, the Mrs. fixing dinner, and my gracious host turned on the TV. He turned to me, and said, "Y’all got that back in California?" – jabbing his finger toward the set. "What’s that?" I asked, seeing two talking heads. "Niggers and Women doin’ the news." I answered, "Yes, yes we do." Unfortunately, I was very tired that night, and politely excused myself from the table after listening to Dr. Dobson’s radio show that evening. I was more homesick than that first summer camp when I called my mom every day, begging to come home.
It was, however, a complete joy to play nearly every day. Niagra Falls. The hills of West Virginia. Nashville. West Texas. Memorizing "The Long Run" album, by the Eagles. The Jeff Lorber Fusion tape. Listening to an evening of old radio shows, from an old theater radio, in a hundred-year old brownstone in Buffalo. Bittersweet.
So that’s it, the reason I can’t abide reality shows. That and the fact that I find no joy in the manipulation and humiliation of others. What has become of us?

Friday, October 22, 2004

And Now for Something Completely Sweet

I got a phone call yesterday afternoon from an old friend. He's 78.
Ed is a guy who befriended me when I was a young guy. He was leading a music group for the older teenagers at our church, including his two kids. They always seemed to have some other, troubled teen or two living with them, from relatives and friends. With my parents' permission, of course, he'd pick me up every couple of weeks or so on an afternoon, and we'd just go get a coke somewhere and talk. I, frankly, thought it was a little weird at first, but we soon became
friends. I now know that this gentle man has a gift, and he took it upon himself to share it with me. He mostly just listened, but he has a way of guiding others to making the right choices for themselves. The main thing that he taught me was, initially with my parents, but it has been extended with time, to not be afraid to tell those that I love "I love you." He taught me about friendship and unconditional love, simply by placing no obligations on our relationship other than honesty and mutual respect. I know this is an odd description, and I've never had another friend quite like him, but this is the truth.Depending upon your perspective, Ed is either heaven-sent, or he has an uncanny ability to drop into my life at the times when I need encouragement the most. I have not spoken to him in at least 2-3 years.He called me, yesterday. I have no idea if he has the slightest clue that there's no one else on the planet who could have made me feel better at that moment, I was pretty low. As we went through the ritual of catching up, he told me about his grandson, with ADHD and other behavioral problems, and how they got along just fine together.
I smiled.
I love you, Ed. It was easy to tell him so.

Monday, October 18, 2004

Buddy Squawk

O.K, so we did our duty and went to our first Buddy Walk. Buddy Walk is an annual event staged by the National Down Syndrome Society,, one of a few national organizations that do whatever they do - promote research and "awareness", programs for inclusion, etc. Cynical me, you know, they've already found a cure. It's called genocide. Is that being too opinionated?
I was and still am a little dumbfounded that there was zero, zip, nada, no media coverage at all. Which tells me a couple of things. First, that the local Buddy Walk folk are not interested in advocacy. San Diego has at least one TV station that does live feeds on Saturday mornings from Pancake Breakfasts and grocery store grand openings. Secondly, if perchance they did alert anyone in the media, then no one cares. So what. I can be just as apathetic about it as everyone else. Well, kinda.
They sent out some guys with banners at the front, and we were off. Our little walk up the Prado to the fountain and back took place in complete obscurity, interrupting the occasional park regular's morning constitutional.
The best part about it was the opportunity to meet Carmen, Emma's school aide. She has kin with special needs, what a blessing for her to be at this event for us. Amazing. Also, to see Samantha and her family.
When Emma first met Samantha (several months ago), her first reaction, from her stroller, was to reach out and hug her. This time, she grabbed lil' Sammy and wouldn't hardly let go. To have your own, live, baby-doll! I was afraid for Samantha's safety. Elizabeth was joined by her husband, Steve, all her kids, and a contingent of high-schoolers. I'm guessing about a third of Borrego Springs (grin).
There were booths from the local agencies, even the local domestic workers union, who's representative got pissed at me when I wouldn't sign up for their mailing list. Solidarity, sister! . There was also a GREAT local band, they kept Emma dancing non-stop for nearly an hour.
So we walked around the fountain, looked at pizza at 10:30 in the morning, listened to some music, "did a little dance and then we drank a little water", saw a lot of other tired-looking people with their Ds kids, and then we left. We went to the Aerospace Museum.
It was a good day.

Monday, October 11, 2004

Two Supermen

The news in the paper today contains the obituaries of Ken Caminiti and Christopher Reeve. The first one literally gave me pause, I had to stop in my bathrobe and re-read the headline to be sure. I remember thinking something like "No. Really? Isn't he (reading first sentence) - younger than me? Aaaaaagh!" It's still, I'm glad to say, an uncommon occurrence.
Ken Caminiti was the last ballplayer that I really enjoyed - not only his performance, but the way that he brought intensity and committment to what he did. My favorite story about him comes from a Spring Training game. A "fan" was heckling him from the stands. After a few innings, Mr. C. left the game, showered, and calmly joined the man in the bleachers. He proceeded to ask the man about his family, his work, and then asked him if people came and yelled at him while he was trying to do his job. No cursing, no chair-throwing, no lawsuits. I liked that, very much. When a man with 'guns' like his only uses his strength on baseballs and bats, he gains my respect.
His later revelations of steroid use pretty much coincided with my disillusionment with baseball and professional sports - I really can't fault him, ultimately, with being the best that he could be in that profession, at that time. Achievement often means sacrifice, and we all struggle with our own smaller-than-life sacrifices for even mediocre gains. The cocaine, well, I understand that it's all part of the mix, yes? If his profession (let's not forget the player's union, k?) had put humanity before the dollar, then maybe he'd still be around for his Hall of Fame induction.
Christopher Reeve, to me, represented the best of a lot of what I know nothing about - Acting, and what I perceived to be pure Humanism. Listening to him describe both always left me scratching my head - I'm pretty sure that he and I perceived this universe in some diametrically opposed ways, but that was also what fascinated me about him. To be a noble celebrity, given a cause, is yet another role to play, I think he did this as well as anyone could, and his willingness to make his personal struggle - including the rigorous therapy that he chose - public, shows a character and courage of extraordinary proportion. He made the world a better place, when he could have turned his back on it. He worked to help others, making his life more difficult, painful, and demanding than it needed to be. A Champion for Humanity.
Two driven individuals. Two Men among men. Two tragically flawed Heroes for my generation. The same, but different. One had time and abilities taken away, the other spent his. They were both, perhaps, too 'big' for thier bodies for completely different reasons.
I admire them both, still.

Thursday, October 07, 2004

I have just proven that money does not buy happiness, but you can be miserable in much nicer places.
I just spent what still was about the best time that anyone could have, a long weekend pretty much doing what I wanted to do, when I wanted to do it. I was also able to pretty much send my own mind into a tailspin of self-pity and depression. Realizing what was happening seemed only to exacerbate my anger and self-loathing. Even in the company of my best and closest friends, I managed to isolate myself to the point of loneliness. To those who were present who may read this, I am truly sorry. This is not easy, but I'm trying to honestly understand what is going on inside my own head, and writing sometimes helps that. I've been wondering what it's like, if Van Gogh could feel himself being pulled into (and out of) his own maelstrom of mental illness. Please don't worry, I'm not seeing swirling colors or anything like that. Then, at least, maybe my heirs could make some money.
I have all of the rationale in front of me. I know that merely walking away from one's everyday doesn't make it go away, but trying to act as if everything is just ducky for more that about 3 days makes me feel like someone who'se eaten a bean & cheese burrito, 2 hours into a tupperware party. After a while, it just hurts. Is my behavior just selfishness? (I'd really appreciate it if you didn't answer that for me). When can I no longer just "pull myself up by my own bootstraps", is it up to someone else to determine that I've had enough? Do I just need to find a "Pity Party" somewhere (Maybe I'll rename this blog). It certainly looks foolish and selfish, with two days of perspective, but in the midst of it, there seems to be no way out, no medication or crying jag, or beating two rocks together to mitigate it.
Why am I so afraid when someone does ask me , "you alright?" that telling them it's not will either turn me into a dishrag, or that there's no point in describing what seem to be the unchangeable ironies of my existence. No one wants to be needy.
**This post has been festering in the draft stage for nearly a week. Unresolved as it is, I'm going to just throw it up on the wall and move on. I don't particularly like it, but then I don't particularly like much, at the moment. Thanks for hanging in.***

Wednesday, September 29, 2004

A Plea for Clearer Communication

I work in a hospital, in a place called the Building Operations Center, or BOC. I, naturally, call it other things like "The Pit of Despair." It is a rather large room, where the Fire Alarm, Building HVAC, Pneumatic Tube System, Infant Tracking, and other things are monitored. There are 6 security cameras which allow me to gaze out into a world that is currently beyond my reach, for you see, I am unable to leave this room without being "relieved" - it is manned around the clock by someone. Relieved is the proper term, for a middle-aged man taking diuretics as part of his medical regimen. And yes, it smells like it is "manned" around the clock. One of the greater roles I get to play in the functioning of the teeming, multi-disciplinary, multicultural melting pot that is healthcare today is that of receptionist/dispatcher for the Engineering/Housekeeping/Security departments - 13 lines, 5 radio channels, 1 intercom, 30 panic alarms, hope you're getting the picture. Although I do not routinely deal with clinical emergencies (my co-workers on the other two shifts do, because we no longer fully staff the "operator" position here, a job that I would not do), I field questions everyday ranging from "Do you have a crematorium there?" to "Where's my nurse - I need a bedpan, quick!" The customers, though, are not nearly as troublesome as are my co-workers.We have, for example, a pneumatic tube system that moves lots of small stuff between departments. There is a PC directly behind me that literally shows me (most of the time) where each tube is on its journey. When things go wrong, though, I will usually receive a phone call like this:Me: Building OperationsThem: Is there something wrong with the tubing system? -- (note) this will be so much more effective if you can add the ethnic accent of your choice --Me: Not that I'm aware of. (I may or may not be, but they don't know that. As I hope you will see, my seeming cruelty will gain your empathy - trying to help does little good)Them: No?Me: No. Them: It is working ok?Me: (bile rising) What seems to be the problem? Whereupon I'll finally get some sort of description that can prompt me to either sort it out on the PC, or send help. Why can't you just tell me who you are and what you want?Here's another one from last week:Me: Building OperationsThem: WHEN are you going to send someone back to fix this door!?Me: I'm sorry, which door is that?Them: Pharmacy! I called earlier and you sent someone over, but he left.Me: Do you know who it was?Them: You know, that guy.Me: I'll send someone to see you.The worst ones are those that, even after 3-4 repetitions, I still can't understand what they're saying. I hope two things: That they write in patient charts more clearly than they speak, and that I never get sick and have to be a patient here. Me: Building Operations (oh the monotony!)Them: Let me talk to one of them!Me: Excuse me. One of who?Them: A supervisor.Me: Please Hold.My point, other than sharing the joy of my current existence with you, is that you keep these things in mind when requesting help over the telephone from someone like me. Tell us who you are, where you are, if we're going to send someone to you, and what you need. We will explain the larger problem to you if we can, your attempts to troubleshoot for us only delay our service to you. I have had Surgeons go on and on for several minutes detailing the pain and suffering of everyone in the OR that is so hot (usually between 67 and 69 degrees), and the impact of the humidity, yadda yadda. I used to get upset, but now I just settle back in my chair and politely listen, secure in the knowledge that I can't do a thing for him until he SHUTS UP AND GETS OFF THE PHONE.I lovingly call my position "The Sphincter." The crap comes in, the crap goes out. I can hold on to it for a while, but eventually it goes somewhere else. The skill is not getting any on you in the process.Thank you for calling. Have a great Day!

Monday, September 27, 2004

Program Note

This site can now be reached directly by pointing your browser to

My Latest Feelings on the word "Retard"

Among us Special-needs folk, there's always a new story, and new ways of being offended by the use of the word, usually as opposed to "retard-ed", which even makes most people emphasize the right syllable. This is a recent response to one of those wonderful moments shared in our little community:

I participate in an online gaming site, which includes a forum site similar to this one. Both in the game, and in the forums, this term appears often. I know that I can't change the world to suit me, but I will and do take occasional issue with it, particularly if I've established some sort of relationship with the person. I did that the other day(via private messaging), and received the interesting response that he thought I shouldn't be so offended by the term "tard", and that I was making "a mountain out of a molehill." I explained that I was not responding publicly, that I was taking issue with it because we were friends, that it was not a "friendship-breaker", but that he needed to know that he was offending at least me without even meaning to, in a public place. I also said that I didn't think that my daughter and I should be "invisible" in the sense that I take no issue with it (phrased differently, of course), and that a lot of my expressions had changed when Emma was born. It seemed to make an impression.I guess what I've learned is that it does me little good to get mad (sure, I do), but I'm trying to pick my battles, like Chang-Kwai-Caine in Kung-Fu, lol. In the game itself (a WWII game), yes, I've actually hunted down and repeatedly killed the poor sap who's used the epithet. They never know why. . .

Why do I still get sad?

The question was posted by the Mom of a Ds child, upon meeting a family with an older child with T21. The encounter left her in kind of a funk. Bittersweet. Here's what I wrote:

Some random thoughts - We all have, and we don't have. It sometimes makes me sad that I can't give my son everything that he wants - that he'll only go to Harvard if he works his butt off. It sometimes makes me sad that we live in such a small house, even though it's worth over a half a million dollars - in Southern CA. It makes me sad that I can't provide the kind of life that we think we want. I wish I had the skills to be more popular, thinner, charismatic. This does not compare to a physical disability, but I think it's human nature. There was a study just released that indicated that there were higher levels of depression in those making more than 50k/yr than those making less than 15k/yr. The reasons for this can be many, it still makes one go "hmmmmm".My Dad developed a disability as a child, and found a way to walk from the knees down - without using his hips - to accomplish his goals. He was the first person ever to receive both artificial hip joints in the same operation (1973). Did the disability make him a better person? Probably in his ability to relate to others' suffering (as a Pastor). Did it hamper him? Of course. Did I miss some stuff as a kid because of it? Sure. Was/is he successful? I won't cite his resume, but yes. Ds is an obvious, physical and mental "handicap". Some of your and my deficits are harder to see. The reality of it all can be depressing, and that's when you do exactly what we're doing - recognize it for what it is, try and put it in perspective, and then count your blessings and find the joy that we can bring each other.I was driving home yesterday, and they had an interview on PBS radio (yeah, I'm one of those people) with Mavis Staples, one of the great gospel singers of our age. She was asked what song she sings when she gets down. She started to sing, slowly, as only she could "It is no secret, what God can do. . . what He's done for others, he'll do for you. . . " now, that may mean nothing to those of you who've never heard it, but there were tears running down my face as I tried to make it the rest of the way home. I was reminded, at the end of a typical crap day at my job, that I need to keep the faith, I need to seek hope from others, I need to just keep keepin on. I am blessed, and my family, including my daughter, live in the best times possible for us. We live in the richest, free-est society the world has ever seen. I'm preaching now, sorry. I am not diminishing your feelings at all, I'm telling you about my journey, too. It's not o.k., but it's bearable. And there's happiness to be found. It can be hard.

Sometimes, there's a little justice

Like I said - some catching up to do - just in case you hadn't seen this:
ASSOCIATED PRESS9:49 a.m. September 4, 2004MILWAUKEE – A school bus driver caught on a hidden tape recorder threatening to beat a 9-year-old boy with Down's Syndrome was sentenced to six months in jail. Brian Duchow, 29, pleaded guilty in May to one count of child abuse that intentionally caused great harm after a criminal complaint said he admitted slapping the boy and cursing at him on the bus. "This isn't someone who has just mildly lost patience," Judge Michael Brennan said at a hearing Friday. "This is someone who's angry – very angry – with a child. ... No one should be treated like this." Jacob Mutulo's parents had placed a voice-activated tape recorder in their son's backpack because of concerns about how the boy was behaving on the bus. On the recording, Duchow can be heard telling the boy to "stop before I beat the living hell out of you," among other threats. Jacob's parents said the boy was diagnosed with post-traumatic stress disorder after the abuse was discovered. Duchow said he felt bad about the way he treated Jacob: "If I could, I'd travel back in the past to correct everything that was done wrong," he said. He was also given three years of probation and ordered to complete an anger-management program and hold no job in which he would have contact with minors or the mentally, emotionally or physically disabled.
*** Somehow, my gift of soap-on-a-rope got lost in the mail. Oh, yeah, I forgot to send it.***

Saturday, September 25, 2004

SCRUBS Doc Makes my day

John C. McGinley was on the "McEnroe" show (CNBC) last night, and I really enjoyed the interview. He was asked if he ever gets as verbally abusive in real life as his character on SCRUBS does, and he said something like (what I heard was) "only when someone is demeaning special needs kids, then they get a full measure of my wrath" . . . then went on with the interview. His promotion of Buddy Walks and revealing of his son's Ds was later, at the end of the interview. My point in relaying this is that, when he made the first statements, there was no explanation, no "I do this because". Ds was the reason he was there, but it was not the focus of the entire interview, nor did it dominate the conversation. It is a part of his life, not the only reason he's around. As I think it should be. I consider it to be an inside joke when he "goes off" on an underling, I know where that energy is coming from!

Does God Choose Us?

I'm going to post some stuff here that I've written before, for convenient storage and reference.

This is my response to a recent question from another parent of a T21 child. We are often told by those "well-meaning" acquaintences that we've been chosen by God to raise this child because we, somehow, are divinely suited to the purpose :
For me, having Emma has caused, and still causes, a re-thinking of all of my core beliefs and assumptions. Some have been re-affirmed, some have been radically altered, and I think I will always struggle with some until I reach the great hereafter. I am fond of mis-quoting Ricky Ricardo when I say that "God has some 'splainin' to do. I think it has to do with what I see as a fundamental gap between what theology really is vs. the way that the casual or not-so-deep understanding that many people have. The thought that "God loves you and has a wonderful plan for your life" has been translated into the concept that our lives are scripted, somehow. This is very comforting when life is good, not so when it goes bad. It is easy to rationalize and try to say something seemingly positive, yet cosmically short-sighted like "God chose you for ..."I think that there are even those that aren't willing to admit to my face that they think that either I or Vicky are being punished for our sins, or the sins of a previous generation. It's biblical, isn't it? God, got an answer for me, yet? Is Emma demon-possesed, or an angel? (She's neither!)
I'm trying to be brief, but I think that:
1> God designed the Universe, including the laws that govern it. This includes what I see as the miracle of evolution, but also encompasses the tragedies of hurricanes, earthquakes, and genetic mutation.
2> "Free Will, Free Choice" - the concept that we as individuals have choice in what we do both in relation to the present and future combines with #1 to make some very interesting combinations, combinations that in effect give us power that we don't completely understand.
This is, to my perhaps twisted mind, what makes the whole amnio/abortion/value of life/add your theology here - so completely perplexing. We've gained the technology to avoid what may be a part of humanity that can teach us the most - see what I mean? "What you have done to the least of these, you have done to me" rings in my ears. Or, should we embrace the opportunity to only produce fully capable persons (there's a whole other kettle of fish, yes, the definitions?). . .
3> I have been brought up to believe that, and have seen so many seeming examples of, God being involved in our lives. So then, the question becomes, why not this time? Like the woman who accused one of us of not praying enough, did I really screw that up? Was that enough reason to form a human being based upon that criteria? What about the "heathens" who have healthy kids?
I'm told that God exists where he sees the past, the present, and the future, should I have faith that this event has a greater, more positive impact than if it hadn't happened this way? That's where my hope lies. Without this, then #'s 1 and 2 make Emma's birth a random event in time, like a car accident where Sis decided to stop by the 7-11 instead of coming straight home, and was hit by a drunk driver who went through a red light. I think it was a "random event" in that sense. The question is, how do we deal with it as persons of faith?
If I want to continue to believe in God, then I have to trust Him. I have to take Him at His word. To do less makes Him not God any more. Did God cause this to happen? Yes, by overall design. Did He pick on me? I don't know, but I'd like to think that He didn't. Does He even owe me an explanation? Probably not.
So, to answer your question, I think those comments are made by people trying in their own naive and dismissive way to make the best of what they don't want to have to deal with. They should have their world rocked a little, and I intend to do so at every opportunity. Share the love, baby!I met a friend about 3 months ago, another Pastor who was very influential in my teen years. I hadn't seen him in about 20 years. When I showed him a picture of Emma, he looked at me square in the eye, grabbed my arm and said, "Well, I bet that's given you some interesting challenges." "Yes, sir", I said, and the conversation moved on. I love that man. No "I'm sorry", no "God Bless You", no bullshit. A true Man of God, as far as I'm concerned. He knew what it meant, acknowledged it, and left me in control of what happened next. Wisdom is hard to find, sometimes.
Embrace it when you find it.

Friday, September 24, 2004


There is nothing more intimidating than a blank sheet of paper or screen. I'm not sure why I've started this; like many things in this life, I feel like I'm supposed to. I mean, everybody else is.
I am creating this because I have found myself ranting on a couple of online forums, and in e-mails, to the point where it has occurred to me that it should be done somewhere else. I don't know if I have anything of particular value to add to the tsunami of information coursing around this planet, we'll have to see.
I am a middle-aged white man, with a wife and 2 small children. I have sought a career, and then short-circuited it in search of a greater life through parenthood. I have subsequently been removed from that career only to find myself working at a "lower" position in the same company, 4 years later, with no apparent direction or course in sight. In that respect, I'm like the majority of the people I know.
I am the son of an evangelical minister, therefore I have common "baggage" with a subset of Americana. Like many of my generation, I consider myself a "person of faith", without necessarily identifying wholeheartedly with any group. Being a Preacher's Kid (PK) has been a "mixed blessing", providing many opportunities, as well as feeding my paranoia and general feelings of being an observer, an outsider to the "normal" life that probably doesn't exist (always a present and future topic of mine, as you may see).
I am the father of a beautiful, 5 year old wonder named Emma. Emma has Down Syndrome, Trisomy 21. This makes me a "special needs" parent. Another "pigeonhole", a way of putting you on notice that I am "challenged" in a way that makes me look at the world differently than you've probably had to. While wisdom is great, for me it has been accompanied by great anger. There's an old punk tune (boy, does that sound weird) that repeated "ANGER IS AN EN-ER-GY" over and over, it has been my mantra for some time now. And then there are the sweet, innocent face and hands of my Emma, and the pure love that she emanates into my world.
My life has become an immense conundrum. Pain and joy. The presence of Sin and the Glory of God. The tremendous value of Life and Love, and the realization that Love is being taken away before it begins. The fact that Hot Dogs come 10 to a package, but buns are only 8.