Update in Sept 09: For those who are looking for photos, check out this post.
Our family knows about the C in vcfs. Maggie's been to the cardiologist at least once a year and had three surgeries.
We know about the V in vcfs. The velum (or soft palate) is often cleft, and Maggie had surgery to repair that. She and I also spent a lot of time and effort on speech therapy.
But the f, the "facial," was harder to grasp. The doctor who diagnosed her velo-cardio-facial syndrome said that the kids who have that deletion on that particular part of their 22nd chromosome have a certain look. He explained it. I've read about it. I've seen booklets with many many pictures of vcfs kids and adults. But I still don't quite see it. I can see what Down Syndrome looks like. The doctor tells me that vcfs has a "look" (just like Downs does) except that we're not as familiar with it.
Today Children's Hospital had a workshop presented by the author of a new book about educating kids with vcfs. (Learning disabilities is a big problem with vcfs.) When you walk into the room for child-care, and see a dozen or more vcfs kids and some siblings, boy oh boy, suddenly you get a feel for what that "f" stands for. It's easy to see how the kids look alike. And yet, sitting at lunch with their families, it was easy to see how they look just like their parents and brothers and sisters too. Maggie is ours. She looks like us -- especially like Katie! But today I saw how very very much she looks like other kids with vcfs.
Saturday, April 05, 2008
Friday, April 04, 2008
At the Proper Time
We pray the psalm several times daily:
The eyes of all look to You, o Lord, and You give them their food at the proper time.
We've been watching a lot of Leave It to Beaver recently. It is SO good. It's funny. The Cleavers are not a picture-perfect family like some of the other 50s-tv families. They are flawed and sinful and selfish sometimes. But they're nice. And they're wholesome. They're not dysfunctional like most of the families on tv today. Ward is a strong father figure. And the show is just plain hilarious!
There's one problem with it. June always knows exactly how long till dinner. The whole family knows what time dinner is scheduled. "Mom, how long till dinner?" "It will be another 30 minutes, boys." Or "Mom, how long till we eat?" "You have five minutes. Pretty soon you'll need to go wash up."
At our house, far too often it's 2:30 or 3:00 before we sit down to eat lunch/dinner -- which ideally should be on the table at noon, but my more realistic goal is 1:00 or 1:30. I just want to laugh when we pray at the start of the meal, "You give them their food at the proper time." Well, God may be wanting to feed them at the proper time, but that mask [their mother] feeds them 2-3 hours later. Ooops.
The eyes of all look to You, o Lord, and You give them their food at the proper time.
We've been watching a lot of Leave It to Beaver recently. It is SO good. It's funny. The Cleavers are not a picture-perfect family like some of the other 50s-tv families. They are flawed and sinful and selfish sometimes. But they're nice. And they're wholesome. They're not dysfunctional like most of the families on tv today. Ward is a strong father figure. And the show is just plain hilarious!
There's one problem with it. June always knows exactly how long till dinner. The whole family knows what time dinner is scheduled. "Mom, how long till dinner?" "It will be another 30 minutes, boys." Or "Mom, how long till we eat?" "You have five minutes. Pretty soon you'll need to go wash up."
At our house, far too often it's 2:30 or 3:00 before we sit down to eat lunch/dinner -- which ideally should be on the table at noon, but my more realistic goal is 1:00 or 1:30. I just want to laugh when we pray at the start of the meal, "You give them their food at the proper time." Well, God may be wanting to feed them at the proper time, but that mask [their mother] feeds them 2-3 hours later. Ooops.
Thursday, April 03, 2008
Dakota Maid Flour
For years I have used Dakota Maid flour. The price was ideal -- less than half of Gold Medal or Pillsbury. The product was superior. I couldn't figure out why it was priced so nicely.
I know food prices have gone up. (Those blasted politicians and the global-warming elitists and their ethanol....) But what has happened to my flour prices has boggled the mind. 79 cents up to a year ago. Then 89 cents a bag. Up to $1.29 in fall. Up to $1.89 in January. This week it was $3.39 for a 5#-bag. Yikesy!! This time I bought King Arthur instead.
Wondering what happened, I started web-searching. Turns out that the Dakota Mill is the only government-owned mill in the country. I have this sinking feeling that someone discovered that their prices were low, and decided to quadruple the price to make up for having sold their product for too little for so many years. Granted, it's a superb product, but not many people are going to continue on as customers when the flour costs 50% more than the name-brand products.
I know food prices have gone up. (Those blasted politicians and the global-warming elitists and their ethanol....) But what has happened to my flour prices has boggled the mind. 79 cents up to a year ago. Then 89 cents a bag. Up to $1.29 in fall. Up to $1.89 in January. This week it was $3.39 for a 5#-bag. Yikesy!! This time I bought King Arthur instead.
Wondering what happened, I started web-searching. Turns out that the Dakota Mill is the only government-owned mill in the country. I have this sinking feeling that someone discovered that their prices were low, and decided to quadruple the price to make up for having sold their product for too little for so many years. Granted, it's a superb product, but not many people are going to continue on as customers when the flour costs 50% more than the name-brand products.
A Little Cleavage
A word to Christian women --
When you look in the mirror on Sunday morning and see a little cleavage showing at the neckline of your dress or blouse, think what that would look like from above. Looking down your shirt from the top looks a lot different from what it looks like straight-on.
When your pastor (and maybe the elders) are serving communion, and you are kneeling, and they are feeding you (and thus having to look down in the direction of your mouth), the pastor is seeing a whole lot more cleavage than he sees when he shakes your hand after service -- a whole lot more cleavage than he wants to see.
Pastors don't usually want to say anything about this around their parishioners. They don't want to admit they're "looking"; it sounds pretty scandalous. But what else can they do in this situation?? A godly man can do a lot of "gaze averting." At the beach, at the store, at the ball park, or when a Victoria's Secret commercial comes on the tv, a man can discreetly look away. But when he is at the altar, serving God and serving his parishioners, putting Christ's body and blood into your mouth, he cannot look in a different direction.
Have pity on your pastor. Wear higher necklines on Sunday.
When you look in the mirror on Sunday morning and see a little cleavage showing at the neckline of your dress or blouse, think what that would look like from above. Looking down your shirt from the top looks a lot different from what it looks like straight-on.
When your pastor (and maybe the elders) are serving communion, and you are kneeling, and they are feeding you (and thus having to look down in the direction of your mouth), the pastor is seeing a whole lot more cleavage than he sees when he shakes your hand after service -- a whole lot more cleavage than he wants to see.
Pastors don't usually want to say anything about this around their parishioners. They don't want to admit they're "looking"; it sounds pretty scandalous. But what else can they do in this situation?? A godly man can do a lot of "gaze averting." At the beach, at the store, at the ball park, or when a Victoria's Secret commercial comes on the tv, a man can discreetly look away. But when he is at the altar, serving God and serving his parishioners, putting Christ's body and blood into your mouth, he cannot look in a different direction.
Have pity on your pastor. Wear higher necklines on Sunday.
Robins' Return
Back at the parsonage, we've watched the annual robin wars. The males come back in spring a few weeks before the females. The males have to duke it out for their turf. There are several days after the fellas come back, prior to the territory being settled, when we could watch HOW the sections of the backyard and the trees were being divvied up. It is immensely interesting to watch.
A few weeks ago, Gary was at the parsonage on the weekend of the robin wars. I didn't get to see it. That was kinda sad.
When I said something to a friend about missing it, living in some subdivision, he told me that we're not really in a subdivision, but we're still in a rather countryish area. I tried to look on the bright side. I tried to appreciate the undeveloped areas around the ski hill nearby. I tried to remember how little yard and grass and meadow I would see if we had settled even more "in town." But I still was missing the country.
Today I had no laundry to drop off at the laundromat during matins. So I took a different path to church this morning. Oh my goodness! What a difference that made! Instead of heading south and then east, I headed east and then south. Usually I drive through a whole neighborhood full of $400,000 homes and then past a two malls and a Kohl's and a McDonalds and several banks. Today I drove past a cornfield and a horse pasture and two big patches of overgrown tree nursery.
Ahhhhhhh, that's good for the soul!
A few weeks ago, Gary was at the parsonage on the weekend of the robin wars. I didn't get to see it. That was kinda sad.
When I said something to a friend about missing it, living in some subdivision, he told me that we're not really in a subdivision, but we're still in a rather countryish area. I tried to look on the bright side. I tried to appreciate the undeveloped areas around the ski hill nearby. I tried to remember how little yard and grass and meadow I would see if we had settled even more "in town." But I still was missing the country.
Today I had no laundry to drop off at the laundromat during matins. So I took a different path to church this morning. Oh my goodness! What a difference that made! Instead of heading south and then east, I headed east and then south. Usually I drive through a whole neighborhood full of $400,000 homes and then past a two malls and a Kohl's and a McDonalds and several banks. Today I drove past a cornfield and a horse pasture and two big patches of overgrown tree nursery.
Ahhhhhhh, that's good for the soul!
Monday, March 31, 2008
In Common with the Atheists
On the way to church yesterday, I heard a brief portion of a religion show on NPR. The topic was "Exploring a New Humanism" where atheism is extolled not as anti-Christianity or anti-religion, but as a positive thing in its own right.
Although I completely disagreed with much of what Chaplain Epstein said, there were things we have in common. For instance, he says that people can't say they believe in "God" without defining who that god is. Yup! He said that most people in America who think they believe in "God" actually believe in goodness and morality and being nice. Yup!
He said that people (that is, atheists) don't need a "God" to be the cosmic policeman, punishing sin. Nor do they need a "God" to be the ultimate one dishing out the rewards to those who are good. Unfortunately, I think he's right that most people see God as either 1) the guy who's going to reward their good, or 2) the guy who's out to spoil their fun so they better behave themselves. Epstein didn't seem to have much use for that kind of god; I don't either.
It struck me as odd how, on a Sunday morning, I was finding so much to agree with as I listened to an atheist espouse his humanistic beliefs.
Although I completely disagreed with much of what Chaplain Epstein said, there were things we have in common. For instance, he says that people can't say they believe in "God" without defining who that god is. Yup! He said that most people in America who think they believe in "God" actually believe in goodness and morality and being nice. Yup!
He said that people (that is, atheists) don't need a "God" to be the cosmic policeman, punishing sin. Nor do they need a "God" to be the ultimate one dishing out the rewards to those who are good. Unfortunately, I think he's right that most people see God as either 1) the guy who's going to reward their good, or 2) the guy who's out to spoil their fun so they better behave themselves. Epstein didn't seem to have much use for that kind of god; I don't either.
It struck me as odd how, on a Sunday morning, I was finding so much to agree with as I listened to an atheist espouse his humanistic beliefs.
Sunday, March 30, 2008
Absolution
A grieved heart pours out her struggle with sin and pain.
The typical Christian response: Try harder to be good. God will help you.
A better response, more typical among Lutherans than the previous line: Jesus forgives you your sin. Go and sin no more.
A very good response: I forgive you all your sin in the name of the Father and of the Son and of the Holy Spirit.
The sweetest response: Jesus says, "I know your sin and your rebellion. That's why I spread out my arms on the cross for you. Your sin is why I came and suffered to save you, because I wanted to make you my own. I chose you. I baptized you. I joined you to Myself. I will hang onto you until I bring you to My heaven."
The typical Christian response: Try harder to be good. God will help you.
A better response, more typical among Lutherans than the previous line: Jesus forgives you your sin. Go and sin no more.
A very good response: I forgive you all your sin in the name of the Father and of the Son and of the Holy Spirit.
The sweetest response: Jesus says, "I know your sin and your rebellion. That's why I spread out my arms on the cross for you. Your sin is why I came and suffered to save you, because I wanted to make you my own. I chose you. I baptized you. I joined you to Myself. I will hang onto you until I bring you to My heaven."
Pondering Time
Sometimes there's so much to do that there's no time to THINK.
But sometimes thinking is important. Sometimes a person has to figure out how she's going to tackle the task of homeschooling her children, and what methods and books and schedules and fieldtrips might serve the family best. Sometimes a person has to figure out what meals she's going to make, and where she's going to focus her nutrition-efforts and where she will make the bulk of her grocery purchases. Sometimes a person has to figure out where she's going to unpack all those moving boxes, and which items should go in which rooms and on what shelves.
But thinking takes time. We can't instantaneously figure those things out.
But when there's so much much much to DO, it's very hard to slow down and allow oneself the time to just "waste" in thinking and figuring out how next to proceed.
But sometimes thinking is important. Sometimes a person has to figure out how she's going to tackle the task of homeschooling her children, and what methods and books and schedules and fieldtrips might serve the family best. Sometimes a person has to figure out what meals she's going to make, and where she's going to focus her nutrition-efforts and where she will make the bulk of her grocery purchases. Sometimes a person has to figure out where she's going to unpack all those moving boxes, and which items should go in which rooms and on what shelves.
But thinking takes time. We can't instantaneously figure those things out.
But when there's so much much much to DO, it's very hard to slow down and allow oneself the time to just "waste" in thinking and figuring out how next to proceed.
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