Saturday, January 06, 2007

"Searching for Bobby Fischer"

Upon recommendation from some friends, we watched this movie. We loved it!

When the young chess whiz was first becoming interested in chess, he arranged his Playmobile people in a chess line-up. My daughter and I both gasped: my kids did that! They played chess with Playmobile kings and knights, with the little kids for pawns.

I loved the line near the middle of the movie where the boy was beginning to feel the pressure of being ranked #1. It went something like this: "Maybe it would be better not to be the best. Then nobody would be disappointed if you lost." There's some serious wisdom there if an over-achieving society has ears to hear.

Friday, January 05, 2007

A Mess

Trust me on this: it is a bad plan to break a liter-sized bottle of olive oil in your trunk, amongst all the other groceries. No. No. I know you want to go try it, just to see if I'm really telling the truth. But really, you should trust me on this. You don't have to test out the veracity of my claim.

If a liter of olive oil is disgorged into a paper grocery-sack, you get to wash every can and bottle in that sack, in very hot and soapy water, before you can put the groceries away. You also will have a big sticky stain on the carpet in the car's trunk. And you will drip olive oil all over the garage floor. Furthermore, no matter how careful you are with the mess, you will of course get way too much olive oil splashed on the kitchen counters and kitchen floor. (Naturally, this spillage will occur only an hour after someone at home mops the kitchen floor while you were fetching the groceries which you decided to slather with olive oil on your way home.)

Unless you stockpile paper towels in your home, you will use up the whole roll of disposable towels in an effort to get olive oil off the kitchen steps, off the kitchen cupboard doors, out of the bottom of the trash can, off the bumper of the car, and off the doorknobs.

And while you are cleaning up this mess, you will overcook the hamburgers for lunch. Which means you also get to spend half an hour scrubbing the broiler pan to remove charred barbecue sauce. Furthermore, the soles of your shoes will be well-greased so that you can skate across the kitchen floor, whether you want to slipslide around or not.

In a few days, today's events will be funny. :-) And I'm sure it was very good for my hands to be doused in that much olive oil for as long as it took me to clean up that mess.
But nevertheless, don't let that tempt you to try it!

Spiritual Auto-Pilot

The comment has been made recently that "some Lutherans think that good works are something that 'just happen' on some sort of a spiritual auto-pilot."

What part of fruit do such people not understand?

For some reason, Jesus called good works the fruit of faith. Last I checked on my grape vines or my blackberry canes, the fruit-bearing actually was on auto-pilot. I suspect Jesus knew that when he used the term "fruit."

(Dan at Necessary Roughness brought up the topic and a little discussion ensued.)

Thursday, January 04, 2007

Hospital Update - 2

Today's x-rays showed that Maggie's lung is no longer collapsed; she popped open the bottom lobe. Her left lung still doesn't look quite as clear as her right, but it's open and improving!

She lost weight during the surgery and hospitalization, but she lost even more from the collapsed lung. It was good to see she's gained back half of what she lost from the lung problem.

On the "Insurance meets Speech Therapy" front, I've discovered that our old perfect therapist is still practicing three afternoons a week but is not in-network for insurance coverage. Figuring that we'll have to stay in-network, I started hunting speech therapists. We either have to go to Illinois or to Milwaukee. Most of the Illinois locations are closer than Milwaukee, but take just as long to drive to because of the infamous Chicago traffic. I'm seriously considering paying out-of-pocket for our old therapist because she's so much closer than the other options (one-hour roundtrip instead of two) and because she's entirely willing to train me to do the work so that we only have to go a few times and check back periodically instead of going 3 times weekly.

We're wondering too if the collapsed lung could've led to the hypernasality. Now that the lung is reinflated, maybe we just need to work on undoing the bad habits that took hold while Mag was trying to protect herself from pain in the chest. (Hey, I can hope, can't I?)

Distribution Hymn for Epiphany

The distribution hymn last night was As With Gladness Men of Old, fine but not exactly a hymn on my top-ten list. But I lucked into perfect timing again!

Luther commented on the Lord's Supper being the manger in which He nows lies. "As with joyful steps they sped, Savior, to Thy lowly bed" could refer to us going to the Sacrament as much as it refers to the Wise Men going to see Jesus in His crib. "There to bend the knee before Thee whom heaven and earth adore," and we do kneel at the altar rail. As the mercyseat was the place of God's gracious presence and was the location of the pouring out of the Lamb's atoning blood, "So may we with willing feet ever seek Thy mercyseat!"

Wednesday, January 03, 2007

An Art, Not a Science

After having spent the evening websurfing items such as ionized calcium levels, renal abnormalities, schizophrenia, and thrombocytopenia, I crawled into bed with a heavy heart and a mind swimming with medical jargon.

When Maggie was first diagnosed with VCFS, it seemed like the experts wanted to put her under a microscope and check for every possible abnormality they could find. And there were so many they could find! After discussion with our family doctor (and with his blessing) we concluded that we'd deal with problems as they arose. But we wouldn't try to check everything periodically "just to see how things are going." I know that's not the typical attitude among Americans. We are told to get our annual check-ups, and to expect that cancer and diabetes and wife-abuse and car accidents and heart attacks are lurking just around the corner, waiting to jump out and destroy us. We are told that if there are enough tests and screenings, we can find these things early and do something about them. Sometimes that's true. Other times it causes needless worry. The whole mindset of expecting there to be problems can, in itself, influence attitudes so as to create new problems where they wouldn't have been. How many times I've read articles for parents of special-needs kids, trying to convince the parents to see the child as a person instead of a Mishmosh Of Diagnoses! Thanks, docs, but I'd prefer to live with the person who is my beloved daughter than to begin wading in the pool of Mishmosh.

Furthermore, I don't believe in traditional Western medicine to the extent that most of the experts do. I believe that science informs medicine, and we are grateful for what we've learned. But nevertheless, medicine is an art, not a science. All drugs have side-effects. The decision to use a drug is made when the benefits outweigh the side-effects. But experts who believe in science (to the same extent that I believe in God) oftentimes don't want to acknowledge the downsides of their Wonder Cures. The experts also have too little regard for nutrition. The Cherrix case (the 16 yr old from Chincoteauge who wanted to treat his second bout of cancer through alternative means) is a high-profile example that alternative views are not acceptable. It's not usually okay to tell a doctor "no thank you for the prescription vitamins/minerals" because I serve a lot of raw foods and give my daughter enzymes & probiotics with her Real Food home-cooked meals and let her drink kombucha.

Beyond the alternative views on medicine, what about alternative views on education? Education is not a science either. There is a particular path we are supposed to follow for the education of VCFS kids. I don't like where that path leads. When I went to a few support group meetings, the parents were beside themselves with frustration over their kids' inability to read, do math, get along with the other kids at school. They were spending huge amounts of time fighting the school for appropriate attention for their kids. It was like they were on a hamster's exercise wheel, expending all this energy fighting the system, getting nowhere. Thing is, even at its best, the system isn't giving the kind of results I want for my child. So instead, we here are doing it "wrong." We're not using the textbooks recommended by the experts. We're not on a strict schedule. We're not trying to make this child fit a mold that is wrong for her. And it seems to be working out smashingly well. Math is a struggle and always will be, but Maggie can understand stories, and by all rights, she's not supposed to be able to do that. We get along with each other. She has friends. The doctor commented yesterday on how incredibly well we're coping with the VCFS. Maggie doesn't see herself as a defective person who needs to spend all day every day being tweaked and repaired and improved. This is good.

Everybody thinks the heart surgery was a big deal. Well, I suppose it was. But surgery is a cake-walk compared to these kinds of decisions. Surgery was one big (scary) to-do; a mechanical fix to a misfitted pipe, done and over with in due time. But these decisions are long-term. They influence what we do every day, influence what kind of stories we read, influence the schedule, influence what we eat and when, influence when we can pray. These decisions will impact our thoughts and feelings and relationships and self-esteem and time constraints. These are decisions that put us in a position where we have to tell the experts that we know better than they do what is best for this one particular child. Because medicine is an art, not a science. But try telling that to people whose god is the "science of medicine."

Tuesday, January 02, 2007


What does this cat think her job IS, anyway???

Christmas Eve, my husband thought he heard a noise in the basement, but dismissed it. The next day, I went downstairs to get something and found a canning jar busted on the concrete floor. Closer examination proved that a mouse had been on that shelf and just bumped the glass jar far enough that gravity took over.

Creatures who leave poop on my shelves should die. (Exemptions made for human creatures who are having diaper issues.) Traps were set. Mousie got away with the snack on the first night. He died the second night. Traps have caught nothing since, and there have been no signs of any more blasted critters.

Yesterday I was doing paperwork for taxes and medical records. When I opened the bottom drawer of the file cabinet (next to the shelves where mousie bit the dust) I found a huge messy nest. I screamed. I hate it when they start eating my insurance policies and the car-repair receipts. But not only that, the little monsters shred the tabs on the file folders so that you can't find the correct folder to put things away. Highly inconvenient.

At least they haven't resorted to an "upstairs apartment" in the file cabinet, where they could be eating tax forms and receipts I need for the IRS!

Hospital Update - 1

We saw the ENT today because of questions regarding Maggie's hypernasality. (That means her voice is coming from her sinuses instead of from her throat.) The hypernasality was of sudden onset following surgery. The problem is not as bad as it was prior to her palate surgery six years ago. It's also good that there's been some slight improvement over the past five weeks. The doctor said we need an in-depth speech evaluation, an x-ray movie of what's going on when she's speaking, and possibly a visual look via the camera they thread through your nose. It will be an all-day appointment. He said he was hopeful that something as simple as a few months of therapy might be able to get her speech back on track and prevent it from deteriorating. With the sudden onset of the change, he's hopeful that it can be fixed relatively easily. (Right now, a few months of speech therapy -- with 60 or more minutes of driving for each appt -- does not sound "relatively easy" to me!)

He did not offer any explanations of what caused this change in Maggie's speech. He did say that occasionally use of the heart-lung machine may cause small clots that could lodge somewhere. He said these clots can cause memory loss, or minor stroke symptoms, or partial paralysis. So he postulated that there may have been something that interfered in a small way with her ability to move her pharynx and palate. But that's just a guess.

He also encouraged us to bring her in for the "VCFS Clinic" which pulls together all the specialists that would be needed for kids with VCFS. This is where the decisions become really difficult. One of the reasons Maggie is doing so well is because we're not doing what is "supposed" to be done with VCFS kids. On the one hand, we don't want to ignore problems that could be helped. On the other hand, sometimes the help brings with it side effects (from drugs or therapies) that outweigh the benefit. So this is going to be a gut-wrenching decision.

Monday, January 01, 2007

The Prize-Winner

The movie The Prize Winner of Defiance, Ohio gives some interesting food for thought with regard to one's station in life. The story is set in the 50s and 60s. The mom of a large family enters contests and writes jingles; her winnings bail out the family from some close brushes with financial ruin. The problem is that the husband is an alcoholic and sometimes abusive.

What's interesting to watch is a husband who is often remorseful for his inability to provide for his family, who often regrets his enslavement to the bottle, but who nevertheless loves his wife and kids and would like to be able to do what is right. And we see a wife who loves him and forgives him, a wife who mothers the children and keeps the home going in spite of the difficulties, a woman who maintains a cheerful attitude and sticks with him, sinner though he be. It's not a pie-in-the-sky movie, but it nevertheless provides a startling contrast to the typical Hollywood fare wherein the husband is a lout, and where the woman finds happiness only through ditching him. It's not for little kids: there's "language" when the dad is in his drunken rages. But for the most part, it turns out a whole lot better than I would've ever expected from a movie. And there are a lot of funny parts and some good sound outlooks on life -- a general "feel good" movie.

Sunday, December 31, 2006

How Did Simeon Know?

"And it had been revealed to Simeon by the Holy Spirit that he would not see death before he had seen the Lord's Christ. So he came by the Spirit into the temple."

I had always thought of that in a mystic sort of way, that somehow the Holy Spirit gave Simeon a "feeling" or implanted an idea in his head. But a year or so ago, I noticed something in the previous chapter. Everybody knew what had happened with Zachariah and Elizabeth. They all knew that something was up with that baby. They knew that Zachariah had seen an angel while he was ministering at evening prayer. They knew that he was mute until he prophesied at John's circumcision. The rumor mill was not silent; Mary told Luke not only about the events of John's birth, but also that it was the talk of the town, and Luke recorded it under inspiration of the Holy Spirit. So I figured that Simeon knew that the Messiah was due "pretty soon."

But then Pastor pointed out that John's birth wasn't the only grist for the rumor mill. The shepherds told gobs of people what had happened when Jesus was born.

So Simeon didn't need some weird feeling from God to make him go to the temple that day. He'd heard the news. He'd heard the reports. If he himself hadn't heard the preaching of the shepherds, he heard the scuttlebutt from those who did. Baby boys were presented on the 40th day. If you wanted to see the Messiah, and you'd heard what happened with Zachariah, and then heard what happened to the shepherds, it'd sure be easy enough to count up the days on the calendar and thus know when you could find Mary and Joseph at the temple.

Simeon was not an Enthusiast!