I read the news today, oh, boy.

  I found out yesterday that Larry Norman died at the end of February. Like any fan, I'm saddened that the majority of you have no idea who he is. He claims the title, as much as anyone could, of being the first Christian Rocker. Our lives intersected at a crucial time in my life, and, taking the same road made all the difference for me. He was 60.

I remember hearing my first Larry Norman song. There was a new church that had grown pretty rapidly, called Calvary Chapel, in Costa Mesa, Ca. I was invited to go with some older teens to the Saturday night concert - it became a regular event for many of us for a couple of years. That night, I don't remember who it was - other than the singer was blind - sang "U.F.O." I remember -the sound of their voice simply singing it. It was the gospel, presented on my terms, with brash honesty and love. I didn't know that it was one of his songs at the time, but the impact of the words still carries me to a sense of wonder:
"He will come back, like he promised, with the price already paid. He will gather up his followers, and take them all away. . .
And if there's life on other planets, well I'm sure that He must know. 'Cause he's been there, once already, and has died to save their soul."
There was a lot more. Larry was political, and I didn't always agree with his politics. But he was telling it like he saw it, and pointing out others who were taking advantage of the times to lead people astray:
"The Beatles said,"All you need is Love" and then they broke up."
-"Readers Digest"
These lyrics are from a song released in 1972. Incredibly sad that they mean so much, today:
"you are far across the ocean
in a  war that's not your own
and while you're winning theirs
you're gonna lose the one at home
do you really think the only way
to bring about the peace
is to sacrifice your children
and kill all your enemies"
-"The Great American Novel"
Larry and his converted friend, Randy Stonehill, sang the songs that touched my heart and fueled my passions for a very long time. I even begged Randy for an audition, once, I wanted to be a part of that group so much.
His most famous song, "I Wish We'd All Been Ready", was a powerful evangelical tool for a while, eventually over-performed into irrelevance as the age of sending teenagers already afraid of nuclear destruction to bed with the fear that the faithful were going to disappear all around them before morning if they didn't get right with God faded. Those were some scary times to be a teenager. As a fan, I see the whole "Left Behind" stuff as his legacy, even though I know that there's more to it than that.

Although I saw him perform as many times as I could, I never met Larry. I sent him an email, a couple of years ago, thanking him for his impact upon my life, never got a reply. My understanding of things is that he had relationship problems with a number of people over the years, with bands, etc. Part of his persona was that he was against whatever grain there was. As a fan, I can accept that - I never had to live or work with him - it was part of his art. His poetry, performance, and faith inevitably influence the things that I do and say. God Bless you, Larry.

"I've been knocked down, kicked around,
But like a moth drawn to the flame,
Here I am, talkin' bout Jesus just the same. . .
I've been rebuked, for the things I've said,
For the songs I've written and the life I've led.
They say they don't understand me, but I'm not surprised
Because you can't see nothin' when you close your eyes.
They say I'm sinful, backslidden,
That I have left to follow fame.
But here I am, talkin' bout Jesus, brother
Here I am, talkin' bout Jesus, sister
Here I am, talkin' bout Jesus, just the same."
-Shot Down

The Ramblings of a Sleep-Deprived Service Tech

Working in a hospital engineering department has always been a combination of monotony, maintenance, and surprise. I tell people, "If you can think of it, we probably have at least one of them." We supply air, water, gases, nuclear medicine, etc.
One of the capabilities that we have is the capacity to generate our own power. Part of our responsibility is to assure that that power is always available, and able to come on line within 10 seconds of city power loss. So, for example, someone checks our generators 3 times a day, to make sure that the switches are in their correct positions, that there's fuel avaiable, and that the batteries are charging. Once a month, each generator (we have 3) is tested under an actual load, and they are all run once a week. This means that, twice a month, a couple of us get to come in at 0430 to run them under a load on a scheduled basis, at the least disruptive time for all of the activities that happen in our happy little hotel. We sometimes have to postpone a test if there's a trauma or other unscheduled surgery going on - even though those areas are protected by Uninterruptable power supplies - we do not take the chance that someone might be plugged into the wrong outlet. I'd want to know that if I were on the table. Today was my turn - to do the test, not for an operation.
Getting up at 0330, even to go fishing (which I've never actually done), is like getting up in the middle of the night. Fortunately, wearing a uniform means that it's relatively easy to get dressed in the dark. Stumbling out to the car - I've worked there so long that I really don't have to think about where I'm going - my 16 year-old buggy knows the way. Traffic is light. Who knew?
The hospital is lit up, as it always is. With the exception of different faces, and less of them, it really doesn't matter what time it is in the hallways. The Generators are out back, sequestered in buildings that block a majority of the noise that they make. We check the fuel, check the oil, check the radiators, write down the vital statistics, including the hour meter readings. We are in a constant squeeze between regulators; the Air Pollution Control District only permits us to run these mammoth diesels for so many hours a year (excluding actual emergencies), and the Joint Commission for Hospital Accreditation sets the parameters for testing them, including how much load to place on them, for how long, and when. These agencies do not communicate with each other.
The Generators, themselves, are big, with big old radiators on the front, the actual generator on the other end, and massive exhaust systems crammed into the building to keep the noise down. Ear protection is required. Heaters keep the engine warm, to help them start more quickly. When running under load, they are actually turned on by Automatic Transfer Switches, which either sense the drop and switch automatically in an emergency, or via our building automation softwarem, on a PC when we test. So, you press a button with your mouse, the lights go out, and within 10 seconds the switches switch, the behemoth awakes, takes the load, and everything springs back to life. Thirty minutes later, the switch back is just a 'bump'.
There are lots of things that can go wrong, and they do, although rarely. Today, all was just peachy. We fired it up, made sure that we were delivering over 300KV (30% of the generator's 1000kV capacity), checked the temps, hertz, amps, and stood around for 45 minutes while it did its' thing. The crescent moon was lovely, through the clouds. We ran the other two 'no-load' for 10 minutes apiece, filled out all of the paperwork, and it was time for breakfast.
One of the things that I've always taken great pride in is that even these industrial actions that we take can be and are related to taking care of patients. The people that are the best at this kind of work are those who relate what they do to the greater good. I like watching "Dirty Jobs" on TV because Mike Rowe understands and promotes the concept. To be quite honest, my paycheck isn't enough to drag my tired butt out of bed to do something like this, knowing that it is important makes it happen.Yes, this is one of the reasons that your hospital stay costs so much. There's a lot to this facility that most people never see in redundant systems and things like fire safety. There's a lot wrong with healthcare in this country, but there's a lot right, too. I know that in my house, you're going to be safe, secure, and the lights will be on, if I have anything to do with it. We might even make you comfortable, every now and again. but that's another story.

"I smell the onions, I look around for you. . . "

It's been a fun few days, here at Casa Bardonia. The good news is that we've had good outcomes - the process has been a bit, well, odiferous, though. First part of the week, I started noticing a rotten, kinda moldy, pungent smell in the bathroom, when I was giving Emma her bath. Emma tends to well, splash around a lot, sometimes, and I often end up putting an old towel on the floor to sop up the water, and the towel doesn't always get hung up, and it'll lay there for a day or two. . . cause she'll just do it again, tomorrow. . . so I'm thinkin' that we've got a mildewing towel thing going on. Next day, it's a little worse. I bother to pick up the towel - nope, it's not the towel. What is it? Don't know.
Thursday, it's getting nasty. I pull up a corner of the vinyl flooring - thinking to myself, 'great, it's gonna be mold, I'm going to have to tear this floor out and . . . '
No mold.
Then, it dawns on me. I've smelled something like this, before. Yes. It's DEAD ANIMAL. I don't think that I've recorded my experience - I think it's been 5 or so years ago - of removing half of a dead skunk from under this house, and I'm not going to, now. I will tell you of its effect upon me yesterday.
Resigned to the reality that 1) it was too late to do anything at the moment and 2) it was going to be my main concern in the morning, I went to bed. The odor, which had previously only been perceptible in the one bathroom, was now beginning to pervade the eastern end of the house.
I awoke at 3:15, my personal 'witching' hour. When I'm bothered, when stuff happens in the middle of the night, I've noticed that it's usually right around 3:15. I could smell this thing, and my brain began to turn. The condition of this corpse. The physical proximity that I would need to assume to address said corpus, or should I say now, host. I began to consider the logistics, put forth new theories and designed potential tools to do the job, like rigging up a plastic bag on a pole with a cable threaded around the bag opening, that could be placed over the thing and then drawn tight like a drawstring, in order for the operator to stay further away from the business that surely would be at hand. The smell wouldn't let me be. Went to the office, opened the window. Gad. My course became clear, even as my stomach became increasingly muddled. It was time to call a professional. Whatever the cost - actually, I considered about $200 to be my price ceiling - somebody else was going to do this dirty work. To the internet! I selected three companies, got myself dressed - the smell taking over my senses the whole time, and left for work a little early.
Speedy Animal Control. They open at 7 - perfect. I'll get them going and we'll be done. Left a message on their machine at 7:25. They never called me back.
On to D&D Dead Animal Removal Service. No fancy website, 'no bones about it' - low tech, on the lowdown, actually my first choice but no posted hours. I stopped waiting for Speedy just before 10am. D&D (lots of opportunity to 'riff' on the possibilities of those initials) had an answering service, too, but then Mary called me back within minutes. They had a live one, as it were. I explained that there was a dead animal under my house, could they please remove it, TODAY?
"What kind of animal is it?"
"I don't know. I'm thinking it's a possum or a raccoon - I'm pretty sure it's not a skunk, because we've had a dead skunk under our house, before."
"Well, a dead skunk doesn't always smell like a skunk."
"Yes, ma'am."
After going back and forth, spelling street names, Mary relaying info to another person trying to find us in the Thomas Brothers' map book, she gets back to business:
"Is this space accessible"
"Yes."
"How much space is there?"
(I don't know, I can crawl down there, I can turn over, it's a CRAWL SPACE!)"I'd say a good 24 inches or so."
"Well, sir, we do charge for this service."
(Oh really? It'd be kinda creepy if you didn't)"Yes, Ma'am."
"We charge between $60 - $120, depending on how far we have to crawl, and what we find down there."
(SWEET!) "Sounds great"
"Sometimes, they're alive, you know."
"I'm pretty sure that that's not the case, here."
We wrapped up the conversation, and they came out a couple of hours later. Vicky brought Jesus into the house, to the bathroom, and he said "I know what that is." Identifying animals by the smell of their rotting bodies is a skill that, while I admire it, is not one that I'd like to cultivate. He did his thing, we paid them $80, and life was much better all over again. I received the text message from Vicky - "Possum gone." Yes, Jesus had delivered us from the pestilence that had afflicted us, yea verily, our entire household. Make your own jokes, if you must. I prefer to remain respectful, for a change.
There's still a little smell, this morning, I'm just a bit nauseated at the moment. Yes, I found another broken vent and closed it off. We're moving on, today, to brighter horizons, and domestic bliss.

World Down Syndrome Day

Today was World Down Syndrome Day. Of course, I didn't have to tell you, I'm sure you saw the blue and yellow banners waving from the lampposts in your town. It was in all the papers, and the heartwarming stories filled the post-sports-newscasts slots between chuckling anchors and videos of hailstorms as big as golf balls and water-skiing squirrel videos. People with Down Syndrome got free haircuts, donuts, and movie tickets, and they waved from convertibles as parades were held in their honor. 21-gun salutes, plus one "extra" shot, echoed at military installations. The telethon was a great success, raising 40 million dollars for research. Of course, we've already found a cure, but there appear to be a number of things that we can do to help those who've escaped it. The day was all about possibilities, inclusion, and achievement.
Yeah, Annie, I have my days, too.

Waiting in the Weeds

I've been sitting on that last post for three weeks. I find myself, from time to time, unable to post about the things I'm thinking about. Years ago, I often read about writing taking courage, and I really didn't understand what that meant, outside of, say, Karl Marx or George Orwell. I am realizing that, if I really want to delve into some subjects, I'm going to need to do what I'm told every writer should be doing anyway, and that's writing a journal. I don't have the ego to think that my thoughts need international publishing; you've all been invited to read at your leisure and discretion as I hopefully work on myself. I try to do this in a way that might have some value for you as my friend, family member, or parent on this zany caravan we call - heck, what do we call it? At any rate, thanks for checking back, I've been kinda blocked. I'm going to try and start journaling, which hopefully may clear the docket for some more focused material. And I'm going to floss every day and check the oil in the car at least once a week. I'll save my courage for the time being, even though that kinda makes me shudder. Anyone understand this?

The news says that it takes a big chunk more than we bring in to 'make ends meet' here in San Diego. The school district - a big part of our lives right now, for both of my kids - is cutting on the very programs and services that serve Sam and Emma, being at either end of the educational spectrum. We've all been sick with some kind of crud that has lasted for about 3 weeks now, leaving us with a messy house, unmown grass, fast food because we're too pooped to get to the store, let alone cook. . .
It's just been a season of malaise.
Spring is on the way, though. I'm listening to music, again. I'm working through some stuff. I'm trying to figure out what my next career is going to be. I've pretty much ruled out inspirational speaker, cause I'd be livin in a van down by the river. And nobody wants that.

Bonus Photo!
Here's a picture from my webcam that we sent to Vicky when she was in Yuma a few weeks back.

Fasten Your Seat Belts

I'm warning you, right off the bat, that I'm going somewhere that I'm not exactly comfortable with, and I'm pretty sure that some of you won't want to go. Feel free to stop this ride at any time - this is not required reading. The topic - same sex marriage. Curious? Let's proceed. Not curious? Feel free to check back, later.
I got a phone call, yesterday afternoon, from my neighbor Sid. Sid and Janice are lovely people; their children have grown and moved on, and I really do like having them for next-door neighbors. We've been through stuff together like building and paying for a common fence, reaching Janice on the phone when Sid had chest pains and got taken away in the ambulance, Sam was a somewhat unwitting accomplice when the neighbor kid set fire to one of Sid's trees - you know, the usual neighbor stuff.
Sid calls, wants to know if Vicky and I would join them in signing a petition for another ballot measure stating that marriage is between a man and a woman. I politely answered, "no." He politely said,"o.k., bye then," and that was that. Poor Sid. I do hope he talks to me again, someday.
We talk, all the time, in my communities of DS parents, about how our children change our lives. It's often hard to express just how. Time shifts, expectations change; after being stared at enough times you care less and less what people think about how you look, or what you're doing, because they have no clue what this is like, and most don't ever want to. Yup, I'm a minority, parent of a smaller minority.
So, there's stories about the occasional, "high functioning" Down Syndrome couples getting married. OK, there's no law against that. Should there be? They're different. How are they different? Why, it's a chromosomal anomaly. There's a behavioral gap between them and 'normal' married people.
I have grown to the opinion that homosexual people are born 'different'. I don't know if it's chromosomal, or not. I think that there's a whole range of genomic expression, just as there is with hair color, cruelty, and any other major characteristics of our human condition. I know some gay people that don't really exhibit any outward characteristics at all. There are many in key leadership positions where I work. There's a transsexual (at least one that I know about) in my building. We all manage to do what we need to do.
Now, I understand the societal implications of what I'm saying. I frankly think that there's been more damage done to our society by what is now the near requirement that both parents work to support an artificially high standard of living, financially, sociologically, and morally. That ship has sailed. We live in a country where single persons and gay couples can adopt children, 'have' them via surrogates. They live together in monogamous relationships and raise children, already. We've given them all of the de-facto trappings - more to the point, they've done it regardless of any law to the contrary. We don't have the legal/moral authority to jail them or stone them to death. Meanwhile, 90% of the children with the chromosomal condition that Emma has are killed, excuse me, prevented from living, er, what would you call it? And that's acceptable to all of us, because it continues, and is being further strengthened by the church of medicine.
What if homosexuality was discoverd to be a combination of genetic factors? Would it then become a disability? Perhaps you think it is, now. Would gay people suddenly be allowed to park in front of the grocery store? Would we evangelical folk be willing to accept them for who they were, then, now presented with a medical model, instead of a moral imperative?
This is a big pot, and this post is not going to make any sort of palatable soup. I'm reading a big book about theology and Down Syndrome. I don't know how it ends. I'm thinking that it may affect how I feel about this subject. At the moment, though, I just can't help but feel that we've got to come up with some new answers for these moral mines, answers that speak to love, God's love, that pass our understanding, that pass our propensities to alienate, that seek to bring healing relationships.
I know that some of you will disagree with this viewpoint, completely and utterly. You have other criteria. I'm just saying that Emma has changed my perspective on many things. I don't think I could ever explain myself to Seventh-Day-Adventist Sid in a way that he'd understand. I know he's a compassionate man, but I don't think he'd be able to fully see it through my eyes. I don't know if I've explained it in a way that anyone else understands.
It's amazing, what a telephone call can do.

IEP, 2008

Individualized Educational Plan. Talk about your 'living documents.'
I've said before, in this context, that I wonder how most of us would measure up to this kind of scrutiny. Experts in their fields, describing your strengths and weaknesses, accomplishments and failures, setting goals for your performance over the next year.
Emma is doing well. As you can see, she is beginning to write letters, and is doing better all the time at writing her first name. After years of tracing, she's heading out onto the wide open spaces of paper and dry-erase boards. She can count to 6. She's learning signs, and using them, and, a couple of weeks ago, put a 3-word sentence together, signing "I Love Ice Cream." Mom thought it was going to be "I Love You," but Emma may have been leading her along on purpose. That's my Emma - likes the surprise, the joke, the 'BOO!"
She's beginning to work with an assistive device for speech, a little bit at school, and seems to like it. She's now being prodded to actually ask for things, rather than pulling someone to what she wants - and she's asking, rather than melting/shutting down. She's gaining strength, can now 'gallop' for many feet (another measurement), and the threshold's been lengthened. She's going to learn how to dribble a ball, here, pretty soon. She's sorting like crazy, and she's more visual than verbal when it comes to colors and identifying like things. Yes, she is. She's got buddies, and gets along really well with the kids at school - loves to participate with everyone. Everybody loves Emma (as far as I'm being told, anyway).
Now, you can look over this list and consider it to be pretty pathetic for an 8-year old. Nope. One of the things that Emma has taught me, that I think Jesus taught over and again, was that our expectations of others need to meet where they are, not where some arbitrary or selfish or theological or social norm labels them as unworthy. Our 'worthiness', our value, exists independently from these things; they are only mechanisms for us to distance ourselves from each other. But I digress. That we take the liberty to do so with the disabled should be a lesson to the normal, but we don't pay attention.
We made a major change with Emma, about 18 months ago, and I think we're just now beginning to see some measurable results. My parental cycle with Emma seems to be that, just when I've given up on something, she surprises. She is determined to take her own path.
I come out of every IEP meeting with two major emotions. One is gratitude for those that are investing themselves into my daughter, and pride in what they say about my Emma, the person. There's no graph, goals, or objective criteria for that, just the way she changes and enriches them. I couldn't be any prouder of her than I am, in those moments.