November thanksgiving 21b: first amendment, flip side

Yesterday the New York Times weighed in on the ramifications of earlier prenatal testing for Down syndrome, with The Problem With an Almost-Perfect Genetic World:

"Where do you draw the line?" said Mark A. Rothstein, director of the Bioethics Institute at the University of Louisville School of Medicine. "On the one hand we have to view this as a positive in terms of preventing disability and illness. But at what point are we engaging in eugenics and not accepting the normal diversity within a population?"

Dear Mr. Rothstein,
You're engaging in eugenics when you remove the patients from their families, load them onto trains, unload them into camps, line them up, and herd them into gas ovens en masse. As long as you kill them one at a time, in a sanitary medical setting, in the presence of one or more family members, and they don't look afraid, and you can't hear them cry out, you can get away with referring to killing the patient as preventing a disability.*
* * * * * * *
Freedom of speech gives people the freedom to say unpleasant things, and to misrepresent the truth. I'm still thankful for it.

Further reading:
Rethinking Fetal Anomalies, Christianity Today
An extra chromosome isn't awful, Boston Globe
Down Syndrome Now Detectable In 1st Trimester, Washington Post
Screening for Abnormal Embryos Offers Couples Hope After Heartbreak, New York Times
The Down Dilemma, Time Magazine
The Abortion Debate No One Wants to Have, Washington Post
One Woman's Choice, Washington Post

*Note: This is one reason people first language continues to be so important. People with Down syndrome are not Down syndrome people. Even a big blogger like Evangelical Outpost still isn't getting this one right.

November thanksgiving 21a: first amendment to the U.S. Constitution

Amendment I
Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.

This week I (inadvertently) angered someone in a newsgroup by quoting our bumpersticker:

It is a poverty to decide that a child must die so that you may live as you wish.
Mother Teresa 1910-1997

I am thankful the First Amendment protects freedom of speech, along with freedom of religion, the press, and assembly.

November thanksgiving 19: neighbors

I have to mention neighbors among things to be thankful for, with both Allthings2all and Wittingshire posting on the topic lately.

The first neighbors I remember were Joe and Ethel, an elderly couple who lived at the bottom of our hill, just to the west. One of them, maybe Ethel, had Parkinson's. Joe kept bee hives and sold us the best honey, some still in the comb. One of my earliest memories is running as fast as I could from one of their hens, after I tried to pet its little yellow chicks. It pecked the back of my legs. (Ye-e-ow-w! The terror was worse than the nip.) Joe and Ethel taught me that the world outside my family and our church could be a friendly place.

Later, for most of our growing up years, our closest neighbors were a large family on the other side of a big lot. One daughter was bright-eyed and temperamental, with a sense of humor. She wore a brace on her leg, and was difficult to understand and a little slow, mentally. I still think of her once in awhile, and wonder how she's doing-- hope she's happy. This family, who had another child in special ed, provided a benchmark for me to be grateful for the advances that have been made in serving children with special needs in the public school system, over the past 30 years.

The neighbors across the valley on the other side were Amish and raised hogs. When the wind was from the north, you could smell Money.
* * * * * *
I'm thankful our current neighborhood is safe and quiet. We are rather newly come to it. Getting to know people takes time, effort, and intention. I am still simmering these ideas on the back burner of my mind.

The duty towards humanity may often take the form of some choice which is personal or even pleasurable. . . .

But we have to love our neighbour because he is there — a much more alarming reason for a much more serious operation. He is the sample of humanity which is actually given us. Precisely because he may be anybody he is everybody. He is a symbol because he is an accident.
---G.K. Chesterton (HT: Read the entire quote at Wittingshire.)

(I just noticed the parallel to "chosen" and "given" I noted in November thanksgiving 9: family.)

November thanksgiving 18: Tim Horton's coffee

We are thankful for Tim Horton's coffee year round, but especially so when the weather turns cold, as it did yesterday. Dave Thomas started Wendy's in our town, and when Wendy's bought Tim Horton's, it was a happy marriage for us. We got a taste of what those Canadians (Kim, Violet, Rebecca) have been drinking all these years. What is it with Starbucks? I like Tim Horton's, and so do most of the adults I know.

November thanksgiving 16: refining fire

(secular version)
Here is an excerpt from an interview with Greg Palmer, author of Adventures in the Mainstream, and father of a young man with Down syndrome.

If you could give advice to new parents of kids with Down syndrome, what would you say to them?
The first thing I would say is what a very great lady said to me on the day we learned Ned had Down syndrome: “It’s not the end of the world.” Or to paraphrase what Emily Perl Kingsley once said: “You thought you were flying to Italy. You were set for Italy, you’d studied the language, knew the sights you wanted to see. And then you landed in Holland.* Not Italy. A different place. Not necessarily a bad place, just not what you were expecting.” And I would add, “So learn some Dutch, and get on with it.”

I would also say this: If you let it happen—and that’s a big but crucial if—there will be joy, and laughter, and sorrow, there will be tragedies but also triumphs. As quickly as you can, get over your self-pitying belief that the gods have screwed you. Embrace people who embrace your child, and ignore the others. Especially ignore those who want to show you how compassionate they are by sharing your tragedy. You don’t have a tragedy, you have a child, and you can get as much satisfaction from that child as you’d get from any child. But there’s no question you’ll have to give more; give more of your life, of your time, of your energy, of everything you have, if you want to make that child’s life a success. In other words, you’re about to find out just what kind of person you really are.

*For some reason, my husband is always a little miffed at this analogy. :-)

November thanksgiving 15: Jan Karon's Mitford books

Steeple, Episcopal Church, Blowing Rock, NC

I enjoy Jan Karon's Mitford series. The new one, Light from Heaven, hit the shelves last week. Two years ago we spent a week of November in Charleston, SC, and stopped in Blowing Rock, NC, on the way home. Karon lived in Blowing Rock while writing the books, and you can see some of her inspirations in the town.












Entrance, Episcopal Church, Blowing Rock, NC

November thanksgiving 14: Ohio weather

November sky
We have a saying here: "If you don't like the weather, just wait ten minutes."

Yesterday afternoon, on the way home from speech, we stopped by the river, under skeleton trees sporting a few last leaves, and threw a blanket on the cushy green carpet overlaid in yellow. The Boy laughed at the wind and played in the leaves. Pouffy clouds scudded north, shifting the sky from mostly blue to three-quarters gray and white within half an hour. Last night, I took a walk after dark in a balmy, breezy 70 degrees.

During the night, a cold front rolled in, pushing rain before it. Today, the high will be 45.
* * * * * * *
ADDED:

"Don't you like a rather foggy day in a wood in autumn? You'll find we shall be perfectly warm sitting in the car."

Jane said she'd never heard of anyone liking fogs before but she didn't mind trying. All three got in.

"That's why Camilla and I got married, " said Denniston as they drove off. "We both like Weather. Not this or that kind of weather, but just Weather. It's a useful taste if one lives in England."

"How ever did you learn to do that, Mr. Denniston?" said Jane. "I don't think I should ever learn to like rain and snow."

"It's the other way around," said Denniston. "Everyone begins as a child by liking Weather. You learn the art of disliking it as you grow up.

Noticed it on a snowy day? The grown-ups are all going about with long faces, but look at the children - and the dogs? They know what snow's made for.

-C.S. Lewis, That Hideous Strength, Chapter 5. (HT: The Window in the Garden Wall. I couldn't find our copy this morning. :-)

November thanksgiving 13: advocates

An advocate . . . speaks on behalf of another . . . . Implicit in the concept is the notion that the represented lacks the knowledge, skill, ability, or standing to speak for themselves. (Wikipedia)

1. This past Saturday I heard several advocates for people with disabilities speak. I appreciate improvements they have made over the years in the lives of people with handicaps, though they have sometimes been more radical in their demands than I would have been.

2. I recently picked up Art Gish's* Hebron Journal from the "Middle East" table at our annual International Festival. Gish recounts his experiences as part of a Christian Peacemaker team in the Hebron area, 1995-2001. The team advocated for Palestinians: listening to those on each side of the conflict; reporting to those outside the area; taking meaningful, nonviolent action; and working with other local nonviolent groups.

3. Last week, as part of the Narnia film hoopla, our local paper printed an article on C.S. Lewis, under the headline "C.S. Lewis: Christ's Advocate." (The title seemed backward. See definition above.) Christ is our Advocate, for which we are thankful.

My little children, these things write I unto you, that ye sin not. And if any man sin, we have an advocate with the Father, Jesus Christ the righteous. . . .
I John 2:1, KJV

Speaking up for those less powerful is a risk; it takes time, effort, and courage. I'm thankful for advocates, people who speak for the weak.

*Gish is part of New Covenant Fellowship, a Christian commune affiliated with the Church of the Brethren.

Additional reading: Lisa, blogging at Ability Not Disability, shares a story of advocating for her daughter (which ended up with her picture on the front of NY Newsday!).

November thanksgiving 8: lactation consultant

Yesterday I noticed again, in passing, that Beloved Life is a lactation consultant. I had frequently thought of dropping her an email expressing my gratitude for the role our lactation consultant played in the early days of our son's life. So yesterday, I did:

I just have to tell you how important our lactation counselor was in helping me through the early days of our son's life. I was in shock for awhile. His immediate success at nursing was such a boon. It gave me something to work on; it gave me a vision of him being successful; it created that bond from the physical intimacy of nursing. I will never forget that woman: Diane. I am so grateful to her.

When I was pregnant, I learned that Earth Mothers were not the only women nursing. I took infant care classes at the hospital and read a number of books. I learned the nutritional and emotional benefits of nursing, and decided to give it a try. The Lamaze teacher warned* we would have to be aggressive about getting the help of a lactation consultant, in the maternity ward. The other hospital staff would not make it their priority.

I am so thankful to God that I was prepared to do this, before entering the hospital. Once our son was born, bathed, and awake, the lactation consultant came in to assist. He latched on and was able to nurse right away. She said that he was doing better than some of the babies in the nursery. (He spent two and half days in the NICU, to stabilize body temperature, blood sugar, and bilirubin levels.) This was where my connection to my child began. He was not summed up by the label "Down syndrome." He was a learner. He was successful. There was something I could give him that he needed.

I went to the NICU every three to five hours around the clock for the first three days, to nurse. I had one or two terrible experiences during the night when the lactation consultant was off-duty. The nurse on duty had no patience; she inserted a tube in our son's nose and gave me a bottle to squeeze formula in. By the third day, I raised a fuss and had a staff person from Patient Relations in my room.** Our son was moved out of the NICU and into my room, for his last night in the hospital.

Because I was nursing, this (Catholic) hospital allowed me to stay on in my room, at no cost, after my insurance quit paying for it. They stopped the meals and the regular checkups by the nursing staff, but I got the bed and the shower. If another mother had needed the bed, I would have had to leave. God blessed us, and there was room in that inn, at that time--because I was a nursing mother.
* * * * * * *
Beloved Life noted that another benefit of nursing, for her, was the feeling of control it can give the mother of a newborn with special needs. I hadn't thought about this experience for a long time. I think nursing also gave me a feeling of personal competence: I am successful at nursing this child; I can meet his needs in the future. And the feeling radiated out from there to the hospital staff. I can feed this child; I can take care of him; he is my child, even though you are poking him with needles every three hours, isolating him in boxes of glass and karyotypes, and subjecting him to rock music and conversation about Julia Roberts' latest during the night. We belong to each other.

*This was probably my firstclue to my impending role as an advocate for my child.
**His vitals were in the safe range and stable; he was hooked up to a heart monitor for no reason.

November thanksgiving 6: the things they've handed down 1

When our son was an infant, Art Garfunkel's From A Parent to A Child album was recommended on an email list of new moms. I picked up a copy and purely enjoyed it. One song I found especially poignant was "The Things We've Handed Down." The lyrics refer to specific physical traits, but the underlying subtext suggests deeper layers of meaning, related to family and culture, beliefs and values.

I'm thankful for the people who've handed so many things down to me. Last night I re-read the history of Turkey Run* (the oldest continuing Mennonite Church in Ohio), founded in 1803, the year Ohio became a state. The church has never been large, but the people have been steadily faithful. Stories were collated stories for the church's bicentennial celebration two years ago. This one was included to emphasize an aspect of the church's Anabaptist heritage:

During the Civil War both the North and the South attempted to draft Mennonites and Dunkards into the army to fight for their respective causes. Abraham [Good, my great-great grandfather] was one of those who helped people having a conscience against enlisting to escape from the Shenandoah Valley of Virginia. One account is given of a group who refused to take up arms. Some ninety Dunkard Brethren and Mennonites met at Weaver's church late one night in the spring of 1862. They were about to be drafted. Their plan was to flee through West Virginia toward freedom into the Ohio Territory, where many of their brethren had already gone.

These men chose as their guide, the mountain hunter, Abraham Good. This capable backwoods man knew the ridges of the Shenandoah Mountains like the back of his hand. Some called him "Sawmill Abe"; others called him "Bear Abe," because he had sometimes shot bears at close range in their dens or, if no bear was in evidence when he arrived at a den, had holed up there himself for the night.

Abraham led this group heading north-west over steep mountains to the Potomac River, where they were stopped by Confederate scouts who demanded they dismount and hand over their horses and guns. One of the men in the gorup insturcted his men "Oh, brethren, pay mightily to God, He will deliver us." Reluctantly the men gave up their mounts, but they carried no guns.

This group was escorted back to Staunton, Virginia, herded on a train and sent to Richmond, Virginia to be imprisoned. As they were called before the examiner of the War Department and stated the reasons why they would not take up arms, the officer became impressed and commanded the Dunkard and Mennonite brethren to be set free. In October of 1862 exemption for conscientious objectors** was enacted. This law provided for hiring substitutes for service by paying conscription fees of $500.00 into the public treasury, of which many families took advantage.*

Following this incident, Good suffered harrassment and narrowly escaped execution, after being accused of carrying war news during trips to Ohio. As a result, he moved his family to northern Ohio. One of his sons, my great-grandfather, settled southeast, near Turkey Run. The church went through many changes over the years, deaths from smallpox, tensions related to language change (from German), migrations for cheaper farmland, etc.

A few years later, a traveling bishop visited. Concerned about retaining the young people, he prayed,

"May God grant that the glorious doctrine of our church, the doctrine for which our forefathers fled from one city to another, and from one country to another, for which thousands laid down their lives at the stake, on the cross and at the block, may still have its divine influence on the hearts and souls of many and lead them to be faithful followers of the meek and lowly Jesus." Grant M. Stoltsfus, Mennonites of the Ohio and Eastern Conference, 1969, p. 94.

Since then, the church has sent a disproportionately large number of its members to serve on the missionfield, in countries including: Somalia, Kenya, Central America, Turkey, Egypt, Saudi Arabia, and Canada.

But there were also many who faithfully served at home, teaching Sunday School classes, cleaning the church, mowing the cemetery and the multitude of other jobs that needed to be done, and without which the service abroad would also not have been accomplished, and which so often are overlooked and unheralded.*

I look back at these people, and at my own grandparents, and am so thankful for the faith and values they handed down, and for the vessels of tradition it was carried in. I wonder how well I am doing at preserving the essentials I received. To whom am I responsible to pass them? In what forms should I carry them?

*All quotes are from The History of Turkey Run Mennonite Church, researched and recorded by C. and L. Wesselhoeft, 2003.
**Law at state and Confederate levels related to conscientious objectors varied over time. Not sure which this is referring to.

November thanksgiving 5: public libraries

I am thankful for the public library system in this country. We owe much of the credit for it to Andrew Carnegie.

In our town, we are especially blessed. Our library is ranked number one in the U.S. this year, in its category.*

*Serving a population of 500,000 or more.

November thanksgiving 1: financial stability

Rebecca at Rebecca Writes has declared November "gratitude month" on her blog, and invited readers to follow suit.* I am going to take her up on it. (It is good for one's character, and might reduce blogging time a little, and give me time to work on my lengthy to-do list.)

With the advent of cooler weather, the furnace goes on, and the humidity in the house goes down. The dry air causes our son to have sinus problems, resulting in difficulty getting to sleep, and late nights all around. We had a humidifier put on the furnace of our old house, but our current house (since last February) doesn't have one. I just called a relative, who owns a heating and cooling business, to arrange for the installation of a humidifier on our furnace. I am thankful we are able to afford to have this done. I know that financial stability is not something to take for granted; we could lose it tomorrow. We have it today, and I am thankful.

*Her choice is intriguing. She lives in the Yukon, where Thanksgiving is in October. She is originally from the U.S., and just recently became a citizen of Canada. I'm wondering if she's homesick a little homesick for her old November holiday. We'll share. :-)

Homing, October 2005
(for Rosa Louise McCauley Parks
February 4, 1913- October 24, 2005)

Interview with Douglas Gresham

Check out Christianity Today's web site for an interview with Douglas Gresham, C.S. Lewis's stepson. Gresham has been working as a consultant on Disney's filming of The Lion, the Witch, and the Wardrobe, and has just finished another book on Lewis, Jack's Life.

CT: You've said, "Jack was the finest man and the best Christian I've ever known." Why do you feel that way?
Gresham: Jack was a man who was always available, and I think this is the crux of Christianity. We all tend to read complex Christian books analyzing the Scriptures, analyzing the various doctrines. And all that does is complicate the issues. God sent down all his rules and regulations; they were ignored. He sent the prophets; they were ignored. Jesus came down himself to tell us how to live real human lives, and he was ignored. Since then, scholars have written critical and analytical things about the Scriptures. But C. S. Lewis wrote in his books, This is how to do what Jesus taught. His message is, "Stop talking about it, stop studying it, just get out there and do Christianity." Jack did it.

ADDED: Don't miss part two: Narnia Comes to Life.

Tree in October, Holmes County, 2005

South side hitman 2: Joy in the Windy City!

Yahoo! Hope Shoeless Joe Jackson was watching. After 88 years of waiting, it tasted good.

Recent visitors by world map

Has site meter always had the world map feature, or is it new? If you use site meter, you can go into it, look under the recent visitors options, can click on "by world map," and see a photographic view of the continents, with little bullets locating your visitors. Most of mine are from the United States, but a few days ago, I had dots on Spain and the eastern side of central Africa. (I think some of these people must cruise through clicking that "next blog" feature in the upper right hand corner of Blogger.) Now I see two from Western Europe and one from Australia have been here; that might be Scotwise. It's a small world, after all.

South Side Hitmen

Kenneth Dickerman for the New York Times
A bronze lion flanking the entrance to the Art Institute in downtown Chicago now sports a White Sox cap.

The Chicago White Sox are two games away from their first World Series championship in 88 years.

Several weeks ago, when we were in south Chicago on a Sunday, my husband's aunt taught a children's Sunday School class. The lesson was part of a series on the Ten Commandments. That day's study focused on "You shall have no other gods before me." To get the idea across to the children, she told them that they should not worship the Chicago White Sox above God.

These children of Dutch immigrants* take their baseball seriously. It's more than a sport. It's about class and identity. From the New York Times:

The last time the Sox went to a World Series was 1959, and they have not won since 1917. Across town, the Cubs made it to the series in 1945, and they won it most recently almost a century ago, in 1908.

. . . .this rivalry, like most, is about more than baseball. It is about perceptions of class and race and heritage on the two sides of Madison Street, the line that splits the city into North and South.

"In truth, I'd say there's no difference between the people that root at either park," said Rob Levoy, a White Sox fan who has moved to the North Side. "But the perception is that the North Side owns the city and the South Side built it."

The hatred," he said, "is real."

And so, South Siders have gone right on moaning that elites crowd into the ivied Wrigley Field caring more about getting tan, talking on cellphones and planning their post-game, North Side bar-hopping than about baseball.

North Siders, meanwhile, gripe that the fans at U.S. Cellular Field (the White Sox park that many here still call Comiskey) are too rough, too wild and inhabit a dismally ugly stadium, whatever its name, in a neighborhood with little to do.

I wouldn't go so far as to use the word "hatred," but emotions run high. My father-in-law has been waiting for the Sox to play in the World Series since their last berth in 1959--my husband, all his life.

I hope the White Sox win, if only to give joy to the children of generations of tall, stoic, frugal, stubborn, work-proud, frequently blonde men hauling garbage --north and south-- day after smelly day, year after year, fueled by bland food, unbending faith, and a sharp and steady sense of humor.

*Many of whom made their living hauling the city's garbage.

Unreached people group

If you have time, check out Christianity Today's Fear Not the Disabled.

In the debate over human embryonic stem cells, Christians are right to defend the humanity and dignity of the embryo. But our well-reasoned words are unlikely to convince people who fear disease and incapacitation if we do not also demonstrate real pro-life compassion for a whole class already here—people with disabilities.
* * * * * *
Whether the law mandates it or not, we should make every reasonable effort, especially as we build new facilities, to remove the physical barriers that keep the disabled from our houses of worship. This means providing curb cuts, ramps, adequate handicapped parking spaces, and doors and aisles wide enough for a wheelchair.* If we don't, they won't come. The disabled and the family members who care for them constitute one of the great unreached groups of our time.**
Just as important as physical accommodation is an attitude that welcomes the physically and mentally challenged with open arms. A church that welcomes the disabled is great, but a bolder step forward is for churches to be inclusive. When people with disabilities are recognized as participants, not as "the needy," we all benefit. Paul reminded the Corinthians that "the parts of the body that seem to be weaker are indispensable." The disabled need the church—almost as much as the church needs the disabled.

Many of us over here in the "parallel universe" know this. As a friend who has pushed disability ministry in the church uphill for years says, "The public schools are doing a better job of including people with disabilities than the churches are." Sleepers, awake.

How many times have you seen a person with a significant handicap performing a meaningful task/function in a church?

Relevant link: Christian Council on Persons with Disabilities

*Don't forget those with poor vision and the hearing-impaired.
**Don't forget the doctors, nurses, therapists, aides, social workers, and educators who watch.

Disability Hierarchy

Last week, a discussion arose on the nation e-list (for parents of children with Down syndrome) expressing irritation over the use of words such as "high functioning" and "low functioning" being used to describe/compare children. I am also uncomfortable with the language, but understand professionals use it as a shorthand in some contexts, to save time. However, it undoubtedly causes lowered expectations in many cases. And it is discriminatory. I've never heard a nondisabled person being described as low-functioning. The language has a de-humanizing element. People should be specific about what a person can and cannot do, if they are in a situation where knowing another person's acquired skills is relevant to their job.

For further reading, Tara Marie referred parents to The Disability Hierarchy article in the lastest issue of Disability Is Natural. I don't remember seeing this website before. It links to a number of insightful and thought-provoking articles, including:
Halloween and the Mask of Disability
Disability Awareness vs. Similarity Awareness
When Is a Disability Not a Disability
Community Leadership for Inclusion
The Magic (and Lessons) of Movies
When Less Is More
Why Do We Have Parallel Worlds?
* * * * * * *
Walking the walk: Kim at Upward Call has posted Loving the Hard Ones, on relating to an adult with autism, who is greatly impaired in his ability to form healthy relationships. Kim draws a picture of the practical working out of welcoming people with certain types of disabilities into the church. I applaud her for staying in the game.

Between two worlds

Today The Abortion Debate No One Wants to Have (Prenatal testing is making your right to abort a disabled child more like "your duty" to abort a disabled child)* was mailed out on the national Down syndrome e-list. The mother who shared it used the heading, "Finally, someone is speaking my heart." I responded, "Mine, too." Patricia E. Bauer, the author, writes:

What I don't understand is how we as a society can tacitly write off a whole group of people as having no value. I'd like to think that it's time to put that particular piece of baggage on the table and talk about it, but I'm not optimistic. People want what they want: a perfect baby, a perfect life. To which I say: Good luck. Or maybe, dream on.

And here's one more piece of un-discussable baggage: This question is a small but nonetheless significant part of what's driving the abortion discussion in this country. I have to think that there are many pro-choicers who, while paying obeisance to the rights of people with disabilities, want at the same time to preserve their right to ensure that no one with disabilities will be born into their own families. The abortion debate is not just about a woman's right to choose whether to have a baby; it's also about a woman's right to choose which baby she wants to have.

* * * * * * *
Last week, Mel of Actual Unretouched Photo linked to a Harvard Gazette article about a study by Brian Skotko, a med school student. Skotko, who has a sister with Down syndrome researched the manner in which physicians tell parents their baby has Down syndrome, and made recommendations for improvement.

Doctors continue to find it very challenging to deliver a diagnosis like Down syndrome to an otherwise happy expectant mom," says Skotko, who has a 24-year-old sister with Down syndrome and co-authored the award-winning book "Common Threads: Celebrating Life With Down Syndrome" (Band of Angels Press). "But the results of this study are conclusive: Delivering a prenatal diagnosis of Down syndrome does not have to be a gloomy affair. In fact, mothers in this study have now written the prescription on how best to explain the diagnosis in a loving manner."

* * * * * * *
Yesterday, Dan from Cerulean Sanctum referred me to a Wall Street Journal article about a young woman with Down syndrome planning her wedding:

But then, Ms. Bergeron said something that quieted the room. Despite her many successes and a level of integration that once seemed impossible to imagine for someone with her disability, Ms. Bergeron said she still didn't have many close friends. Often, she added, "I felt lonely."

Ms. Bergeron's dilemma is especially poignant because people with Down syndrome and other developmental disabilities increasingly find themselves succeeding in mainstream society. They go to public schools, taking classes, joining sports teams and singing in the choir with classmates. They work at jobs in the community. But still, like Ms. Bergeron, they often find themselves caught between two worlds.

Many people with disabilities, and sometimes their families, do feel they live between two worlds. Sometimes they feel invisible in our culture. I am glad when attention is paid.

From WSJ: A Brother's Survey Touches a Nerve In Abortion Fight (also covers the Skotko study)
A Young Woman With Disabilities Plans Her Wedding
(I think the National Down Syndrome Society is paying to make these available online. Generally, Wall Street Journal articles are available only to subscribers.)

*Justin Taylor, who blogs at Between Two Worlds, also links to additional, related articles. (HT: Adrian Warnock)

Forgiveness

Joan Medlin, mother of a son with a dual diagnosis (Down syndrome and autism), recently posted An Effective Complement: Advocacy & Forgiveness,* on the Disability Solutions web site. She writes:

Over the years, I’ve had to advocate staunchly for my son . . . . In those early years I was devastated after every meeting. I felt exhausted—like one of the “Dementors” from Harry Potter had sucked all but a last breath from me. In just a short time, “advocacy” became synonymous with anger and frustration.

She validates the feelings of parents:

I agree that more often than not parents have a lot to be frustrated and angry about. Constantly maneuvering to find someone who sees your child as a great kid (rather than being told all the things he can’t do) is not easy. Living under the microscope of special education without feeling judged at some point is impossible. The evaluation” is not limited to academics, school situations, or your child’s strengths. Folks tend to want to know just what it is we’re doing at home to teach our children.

I’ve been doing some reading on forgiveness over the past year. I am increasingly convinced it is the missing link in advocacy efforts.

She describes what forgiveness is, and what it is not, then goes on to say:

I believe forgiveness strengthens my ability to advocate effectively. By letting go of resentment and anger, people are more willing to talk and problem-solve. They are less likely to worry the discussion will become a battle with an angry parent. Remember, forgiving someone does not mean they are not accountable for their actions. No one loses their rights by forgiving an injustice.

This is a timely article. Like Joan, I have experienced frustration in dealing with educators, medical professionals, and social service providers. Joan is bringing a gift to this "field of discourse" by introducing the issue of forgiveness. We need the healing and empowerment it can bring, for both ourselves and our children.

Joan, who is also editor of Disability Solutions, is a nutritionist and author of The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles.

*This article was posted October 12, and will eventually disappear from this web site and be linked by date at the bottom of it.

Rearview mirror

Several years ago I got a tape of Philip Yancey's presentation at a Calvin College Festival of Faith and Writing. He made several statements about the limitations of writing, one of which was that it reduces. We experienced great hospitality on our recent trip to Chicago, and I will not reduce it to a blog post. However, I will share a few things I learned.

Aurelio's has the best pizza in Chicago, and the best Aurelio's is the original one, in the suburb of Homewood. The first few bites of thin crust pepperoni had me thinking, "This is as good as chocolate!"

You can bake bacon evenly in the oven, on a jelly roll pan, at 375 degrees, until it's done.

Stores are closed in observance of the Sabbath, in South Holland, a Chicago suburb.

Sand Ridge Nature Center, a 235-acre nature preserve in South Holland, is part of 21,000+ acres set aside by the Cook County Commissioners in the early part of the 20th century. They foresaw the future growth of the city and the need for natural preservation. Chicago magazine designated Sand Ridge "Best Family Outing" in 2003. Its butterfly garden contained plants which are also native to our area. It fights some of the same non-native aggressors we do: garlic mustard, Japanese honeysuckle, purple loosestrife.

You may eat shrimp on the sidewalk at the Navy Pier Bubba Gump Shrimp Company one hot summer day. Six years later, you may return in autumn; it's cooler. You get the "best table in the house," with windows on two sides, and a couple signs hanging over your son's head.*

Speaking of whom, he made it clear during the trip that he appreciates a king-size bed and McDonald's hot apple pies. Either of which is preferable to pizza, chocolate, or shrimp.

*And the very cool waiter at the next table will stop to tell you he has an 18-year-old brother with Down syndrome, who is ornery, like your son.

Past Watchful Dragons

C.S. Lewis fans will converge on Belmont University in Nashville, TN, November 3-5, 2005:

Inspired by the forthcoming film . . . of The Lion, the Witch, and the Wardrobe, this conference celebrates C.S. Lewis's contribution to literature, theology, apologetics, scholarship, popular culture, myth, and imagination. 'Past Watchful Dragons' will also consider the work of the constellation of writers associated with Lewis such as J.R.R. Tolkien, Charles Williams, Owen Barfield, and Dorothy Sayers.

Speakers include:
Doug Gresham, C.S. Lewis's stepson and film consultant for The Lion, the Witch, and the Wardrobe
Christopher Mitchell, Director of the Marion E. Wade Center at Wheaton College
David Payne of Rising Image Productions, which specializes in dramatizations of the works of Lewis
Music:
The Glass Hammer, a literary progressive rock band which specializes in music based on the writings of Lewis.
The Nashville Symphony, performing Howard Shore's The Lord of the Rings Symphony.

In Time of Sorrow

May you see God’s light on the path ahead
When the road you walk is dark.
May you always hear,
Even in your hour of sorrow,
The gentle singing of the lark.
When times are hard may hardness
Not turn your heart to stone,
And may you always remember
You do not walk alone.

This is an old Celtic blessing, shared by Being Barbara on her blog. She is requesting prayer for her pastors and their families.

Autumn in Ohio

I once had an English instructor who told the class she found October the most beautiful season of the year in Ohio. Until then, I had always taken our autumns for granted, and liked earth's wakening in spring best. Now, I take neither for granted, and find both beautiful.

This picture was taken in late October, 2002, in the Japanese Garden area of Dawes Arboretum, near Newark, Ohio.

Homesick, September 1982 - June 1984

“Twilight is stealing over the Sea,
Shadows are falling dark on the lea;
Borne on the night winds, voices of yore,
Come from the far-off shore.

Chorus:
Far away beyond the starlit skies,
Where the love-light never, never dies,
Gleameth a mansion filled with delight,
Sweet happy home so bright!

Voices of loved ones! Songs of the past!
Still linger round me, while life shall last
Sadly I wander, lonely I roam,
Seeking that far-off home.

Come in the Twilight, come, come to me!
Bringing some message, over the sea;
Cheering my pathway, while here I roam,
Seeking that far-off home.
--Aldine S. Kieffer

I heard this sung several times in western Ontario, by the five daughters of the director of the mission I served under. I was three days from home, as a car travels, and still seven hours south of my final destination. The rules of the mission had left me in a hairstyle to which I was unaccustomed and the inability to wear a large part of my wardrobe.

Wildflower: goldenrod

Bringing in the sheaves

Elise at Simply Recipes is hosting a round-up of custard recipes this weekend. I wish had had these several years ago, when our son's chewing skills regressed for three years, as a result of enlarged tonsils.* Custard may sound like an indulgence , but people who cook for those with chewing problems-- the very young, people with oral motor issues, and some elderly people-- may find the recipes particularly useful.

If people with Down syndrome ruled the world:

Check out this article by Dennis McGuire, of the Adult Down Syndrome Center of Lutheran General Hospital, Park Ridge, Illinois. McGuire posits a world ruled by people with Down syndrome:

The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.

If you have, or have ever had, someone with Down syndrome in your life, you will enjoy this article! And smile. :-) (HT: Chewy Mom, via Between the Rinse and Spin Cycle.)

Saints

"Precious in the sight of the Lord is the death of his saints." Psalm 116:15

Yesterday on NPR's Fresh Air, Terry Gross interviewed singer/actor Vernel Bagneris who has just sold his apartment, and has been planning to move home to New Orleans. Half his belongings are already there. He had a difficult time speaking, toward the end. His sister is enroute to be with him in New York. His brother-in-law and nephew stayed home to ride out the hurricane, and have not been heard from.

Bagneris wrote the text for Rejoice When You Die, a book of photographs of New Orleans funeral processions.*

Terry asked him for a good example of New Orleans' music to close the program with. He, with tears in his voice, recommended "When the Saints Go Marching In," because "a lot of saints went marching home this week."

WHEN THE SAINTS GO MARCHING IN

Oh when the saints go marching in,
Oh when the saints go marching in,
Oh Lord I want to be in that number,
Oh when the saints go marching in.

Oh when the sun refuses to shine,
Oh when the sun refuses to shine,
Oh Lord I want to be in that number,
When the sun refuses to shine.

Oh when the dead, in Christ shall rise,
Oh when the dead, in Christ shall rise,
Oh Lord I want to be in that number
When the dead, in Christ shall rise.

I have to say, amid the all the coverage of Hurricane Katrina this week, I had not thought of the deaths in this way: saints marching in.** When food and help finally arrived at the Superdome, I read reports of cries of "Thank you, Jesus," and praising God. Many of these survivors are fellow Christians.

*New Orleans created its own spin on the old tradition of military brass band funerals; traditional New Orleans funerals with music feature sad music (mostly dirges and hymns) on the way to the cemetery and happy music (hot jazz) on the way back. -- from Wikipedia

**I had forgotten the New Orleans' football team are the Saints.

Summer Joy 12: Merry-go-round

Longing

This merry-go-round included Onward, Christian Soldiers and Jesus Loves the Little Children in its repertoire. Visions of Narnian animals going forth to battle danced in my head, during the first.

Summer Joy 11: Vacation

Father and son

". . . . the time cannot be long, . . . number. . . every moment, charging it with meaning. Love in ignorance squanders what love, informed, crowds and overfills with tokens of eternity."
--from Ellis Peters' An Excellent Mystery: The Eleventh Chronicle of Brother Cadfael, 1985

(Thanks to the Lean Librarian for recommending Cadfael, and to Sparrow, for passing along Circle of Quiet and Wittingshire's appreciation of him.)

Once more to the lake

For the past few months, I've read of your travels: to the sea, to Texas heat and tornadoes, to Disney World, Italy, Yosemite, a writing seminar in New Mexico, England's New Wine conference of caravans, the family farm in Iowa, the Florida sister, CBA in Denver, romance in New York City, the Norwegian fjords, historical and scenic sites of western Canada, the RWA conference in Reno. (Sorry if I missed anyone. :-)

(Here I sit in the flat Midwest, where we slowly grow wheat, corn, soybeans, beef, chickens, and dairy cows to feed you all.)

Tomorrow we take off for a few days.

I will take along "Learning the Ancient Rhythms of Prayer: Why charismatics and evangelicals, among others, are flocking to communities famous for set prayers and worshipping by the clock," an article originally published December 9, 2000. Paul Boers, the author, is pastor of Bloomingdale Mennonite church in Ontario. Christianity Today has linked it on their website as part of their observance of the passing of Brother Roger, the founder of Taize.

If you have time to surf, Barbara of Being Barbara, Being Mum, Being Me has a thoughtful post about letting go of one's children, a theme that has also recently surfaced on Circle of Quiet and Wittingshire. Barbara's post is especially interesting because she lives in Great Britain, and she reflects on changes in family life over several generations there.

Mel of Actual Unretouched Photo also has a beautiful post on taking her son to visit her aged grandmother, who is about to pass the century mark.

Enjoy.

The Cases of the Disappearing Dentist, the Lean Librarian, and the Man Who Saw Purple

There be three things which are too wonderful for me, yea, four which I know not: The way of an eagle in the air; the way of a serpent upon a rock; the way of a ship in the midst of the sea; and the way of a man with a maid. Proverbs 30:18-19

1. Last week I inquired about the curious absence of the female dentist from the practice we have been frequenting for several years. I hadn't seen her for months; her name had disappeared from the sign outside the office door. "She took a year off to write a murder mystery, and now she's trying to market it."

What was she thinking, as she worked on our teeth?!

2. Librarians are scarce, since the advent of online catalogs and self-checkouts (scanners) at our local library. Last week, unexpectedly, one asked if she could help. I was perusing the classics, but told her I liked mysteries. I liked good writing, had read most of the old mysteries, and the new ones were either cutesy or had too much violence and psychological darkness. She nodded, referring to several writers who had started well, and gone off track. "That's what sells." She shook her head over Patricia Cornwell, Michael Connelly and Ruth Rendell.

Suddenly, the librarian became animated: she had liked Rendell's Judgement in Stone. The murder was because of illiteracy! The woman killed people because she couldn't read! That was a good one!*

3. Friday, my son and I toured a local mall (wheelchair-assisted) to search for school clothes. We ran into a friend in the domestics section of Kaufmans's. I bemoaned the difficulty of choosing paint colors. She said she and her husband find it difficult to agree on colors. He's colorblind in the blue/green part of the spectrum. They're having trouble leaving their white walls behind.

A royal blue couch she liked appeared to be Barney purple to him.

*The librarian recommended the historical mysteries of Lindsey Davis (particularly Silver Pigs) and Ellis Peters. I prefer to read historical fiction only if written at the time in which it is set. I once heard Niall Ferguson, a Harvard history professor, voice this preference during a C-span interview, and realized I shared it.
I did follow the librarian's recommendation and try Silver Pigs. I did not enjoy it enough to continue beyond the first 30 pages or so. I will give Ellis Peters another try. I think I read that Madeleine L'Engle enjoys her.
Note: If you follow the Ferguson link, you will find it is an off-topic, but fascinating, article (by an atheist): Heaven knows how we'll rekindle our religion, but I believe we must (HT: Mere Comments).

Summer Joy 10: Bulb catalogs

Burgundy Lace (actual color deeper than appears here) with muscari

This week we received the first bulb catalog of the year from Breck's, "direct to you from Holland since 1818."

At our previous house, knowing crocuses, tulips, daffodils, grape hyacinths, Dutch irises, and lilies were asleep beneath the snow gave me a sense of anticipation from New Year's Day through the month of March.

The previous owners had left large purple crocuses, yellow daffodils, orange Asiatic lilies, and a few stray tulips. Partly inspired by the glorious array of color put forth during Tulip Time in Holland, Michigan, I added a few more bulbs every year. By the time we moved, there were not yet the masses of color recommended in Mrs. Greenthumbs, but there was something new coming into bloom continually during spring and early summer.* I was sorry to leave it. (The subsequent owner has apparently torn out most of the landscaping and replaced it with the ubiquitous yew.)

Now we start anew, with a yard which, until now, has had no time for spring-flowering bulbs. Where to start.

Breck's has a good coupon included in its catalog. Bluestone Perennials, here in Ohio, is a trusted source of plants. I will also check out the bulbs at Free Trees and Plants, which employs workers with disabilities.**

I have learned from my sister-in-law in Florida, and our own experience living in Georgia, that gardeners in the south cannot grow most spring-flowering bulbs; the cold season down there is not long enough for their hibernation period. Tulip bulbs would need to be kept in the refrigerator several months, in Florida, for them to bloom.

Tulips and daffodils are one compensation for our long, cold winters.

*I see Bookish Gardener is able to keep this progression going during spring, summer, and probably fall.
**Thanks to Dawn at Frugal for Life, for adding them to her site.

Dutch iris

Facing reality: precursor to grace

Last month, I read J. Mark Bertrand's account of Andy Crouch's speech to the Christian Booksellers Association about the need for more realism in Christian fiction. Crouch speaks:

And this is the most basic test for quality in fiction, it seems to me: is it absolutely faithful to the real, and absolutely faithful to what is strange and extraordinary within the real? For the Christian this is another way of saying, is it about grace? Because grace is the interruption of the unexpected in the real. Cheap stories barely touch reality—they present a simplified simulacrum of reality, a version that is easier for the storyteller and for the reader alike.

This week, I read Catez Steven's review of the movie City of God, which depicts life in a slum in Rio de Janeiro. She realizes some Christians would have problems with the language and violence depicted in the film.

The film has an R rating, so I'm not giving a blanket recommendation to see it. I know some people will have a different criteria than mine. But it has me thinking too. So much of the popular visual Christian media is tailored to our Western comfort zone. To be frank, some of it seems to be about "bless me and don't portray the harder aspects of others lives".

I have to say that related questions arise in the minds of some parents of children with special needs. We sometimes limit sharing about our experience with those outside the disability community because we are afraid they couldn't handle the truth of how hard it is. They are too weak. Or they would condemn us as complaining or tell us to get a Prozac prescription. Or it would increase the prejudices they already have against those with disabilities. They may just not care. It takes time to listen.

1. When you are not open to hearing about the pain and struggle of a person's history, you are closing off an avenue to hear of the grace that accompanied it.

2. Accompanying someone along a difficult journey is a risk. Will grace happen?

Reading: Peanut's Story, Just Thinking
Cheap Hope (HT: Mere Comments)

Summer Joy 9: State fair

Yesterday at the State fair, my husband sent me off to the Arts and Crafts building to look at quilts. I detoured into an air conditioned auditorium and found the Ghirardelli Chocolate baking contest. No free samples, but we got baking tips from the moderator, who took questions while the judges tasted.*

She asserted that baking, unlike cooking, is a science. Exact measurements are much more important in baking. Is this arguable?

Parchment paper: She uses it for almost everything except cakes. Don't use it if you want a cookie to spread and flatten out.
Ganache: Use cream and chocolate. Cut chocolate into equal-sized small pieces. Heat the milk until steaming, then add to chocolate. Wait five minutes. Stir with whisk, starting in middle, moving toward outer edges. (The questioner asked how to avoid separation of particles in a ganache.)
Baking time: The moderator never times her baking. When you can smell a creation, it's almost ready to take out. Then you start using a toothpick to check for inner dryness. She said baking times vary greatly because of differences in ingredients and ovens. Most baking times given on cake mix boxes are too long.**
Fudge: The recipes using marshmallow creme are popular and no-fail.
Flour: Don't buy more than you will use in a month or so. (!) Store in airtight container rather than original package.
I have already forgotten how to obtain gritty sugar or crispier cookies. Overcook the first, adjust fat or flour on the second?

This year, Ruth Cahill became the first Arts and Crafts contestant ever to be inducted into the State Fair Hall of Fame. She has been exhibiting food at the fair since the late 1950's. This culture overuses the word "awesome," but I could almost attribute it to this woman.

*The moderator shared that there were many requests for this job.
**I once had a roommate whose boyfriend baked. He never used a timer. He claimed he waited to remove them from the oven until the Holy Spirit told him to take them out.

Wildflower: Queen Anne's Lace

Wildflower: Ironweed

Summer joy 8: surprises in the garden

This week Early Girl lived up to her name, as she pulled into second, behind the cherry tomatoes. Yesterday I found what I thought were sloooowly ripening red tomatoes (when I checked several days ago) had turned golden yellow, and I picked 20 in one day! Eleven red tomatoes were ready on the three other plants, which had yielded a grand total of four or five, so far.
If you are a gardener, you know these little surprises are among gardening's choice rewards.

"We are protecting our children from the wrong things!"

Last week our Beth Moore video covered goodness and kindness, in her series on fruit of the spirit. Goodness, not passive, does (acts).

She had recently spoken with a woman who was pregnant with a baby with Down syndrome. The mother had come to terms with the diagnosis, and believed the baby would be a blessing to their family. However, she was worried about the effect the baby would have on her other children, concerned about the sacrifices they would have to make. Beth exclaimed, "We are protecting our children from the wrong things!"

She shared about how much her daughters had learned about selflessness during the years they had had a child with special needs in their house.* The little boy had cost time and money, but she felt the blessings he brought were well worth the sacrifice.

She knew a family who had a child with Down syndrome. The siblings had to help with things like riding on the bus and finding the way into the school in the morning. Beth asserted that helping was good for those children. It taught them to think of others. The expectant mother need not worry about a child with special needs depriving her other children. "We are protecting our children from the wrong things."

*I'm not sure whether he was fostered or adopted. Eventually, after five to seven years (I think) he left.

Risk (?) 2

For it is a dreadful truth that the state of (as you say) "having to depend solely on God" is what we all dread most. And of course that just shows how very much, how almost exclusively, we have been depending on things. But trouble goes so far back in our lives and is now so deeply ingrained, we will not turn to Him as long as He leaves us anything else to turn to. I suppose all one can say is that it was bound to come. In the hour of death and the day of judgment, what else shall we have? Perhaps when those moments come, they will feel happiest who have been forced (however unwittingly) to begin practising it here on earth. It is good of Him to force us; but dear me, how hard to feel that it is good at the time.
C.S. Lewis, Letters to an American Lady, 1967, p. 47.

When it comes to children, parents so often have to depend on God for help. We race against time to help our son develop skills that make him as independent as possible, to increase the probability that he will not be put into an institution when we are gone, but that a good family will welcome him into their home. We have to depend on God for his continuing development and his future home life.

(I have to add I am continually inspired by hearing stories of people, bloggers among them, who have adopted children with special needs into their homes. I know there is a similar program for adults in a nearby state, which I would like to look into, when I get time.)

*C. S. Lewis. The Lion, the Witch, and the Wardrobe.

Summer joy 7: harvest

While the earth remains, seedtime and harvest, cold and heat, summer and winter, and day and night shall not cease.
Genesis 8:22 (Amplified)

Summer joy 6: rain

Tuesday night, after days of sweltering temperatures, our heat wave finally broke. The heat index had been reaching the low 100's F for a couple of days. Off and on yesterday, rain, sweet rain.
(Thanks to Actual Unretouched Photo, from the ever mild and rainy Northwest, for asking.)

This is just to say

(with apologies to William Carlos Williams)

I have eaten
the first cherry tomatoes
that were ripe on
the vine

and which
I wanted
to save
for a picture for you

Forgive me
they were delicious
so sweet
and sun warm

Summer joy 5: green fields

Soybeans (neighboring field)

July 25 addition:

. . . . the drive from here to the hospital is so pretty. I steer clear of the interstate and take Highway 61, known to southeast Missourians as “the old highway,” through a couple of dozen miles of rolling farmland. The trees along Highway 61 are so green this week that Technicolor couldn't begin to capture their intensely saturated hue, . . . . Art, I'm sure, means more to city dwellers who live far from such natural pleasures, and when I return home to the city, mine will mean more to me. At present, though, I'm happy to revel in the world around me as I drive to and from my temporary job as a caregiver. That seems to be all the beauty I need.
(from About Last Night, where arts critic Terry Teachout is blogging about leaving New York to spend some time caring for his aging, ailing mother, in his southeast Missouri hometown.)

(Apologies to aggregators and rss feeds, if this repeated. Blogger is not wysiwyg with text wrapping photos.)

Why is this night different from all other nights?

Because tonight I am thankful my son survived this morning's fall down the stairs. (He has survived two falls off the bed, one down a few steps held by mom, one down a few steps held by dad.)

He usually scoots down safely "in sitting," unless assisted to walk down. This morning I left him half way down, and went to start breakfast. He evidently started down, and decided to pull his knees up inside his t-shirt, which he does when cold (in the a/c). I heard three thumps. He was curled on the floor, silent, face contorted in pain, bleeding from the mouth. Then he started crying quietly. (Was he holding his head oddly?*) The emergency squad was here in a few minutes, and found he was in no apparent, immediate danger. So I took him down to the emergency room. He smiled at me, right upper lip swelling, in the hospital parking lot, and I thought he was probably going to be ok. We went in, and he was checked over and out in a record one hour, 45 minutes. (When he had a concussion, 19 months ago, the visit lasted close to five hours.)

If the worst had happened, I would not cry because we lost our son with Down syndrome, but because we lost our son. I would cry because he had not yet learned to talk, and I had not gotten to know him like I wanted to.

This night, like all other nights, is a night to be thankful.

*Like about 15% of children with Down syndrome, our son has atlanto-axial instability. One of the cervical vertabrae in his neck is weak. He is cleared for horseback riding and the trampoline, but not for somersaults or anything that places pressure on the head or neck.

Summer Joy 4: family reunion

My grandmother birthed 19 children (including two sets of twins) in 24.5 years, according to my aunt. The 14 who survived early childhood attended today's reunion, along with many of their children, grandchildren, and great-grandchildren.

When I entered the cafeteria, the crowd was a blur, so I focused on the food: chicken; meatballs; dressing made with homemade bread; slow cookers of noodles, mashed potatoes, gravy, green beans, mixed vegetables, and sloppy joe filling; taco salad; fruit salads; vegetable salads; watermelon; cheese plates; a vegetable platter; and about 14 kinds of dessert.

On tables to the side sat water, lemonade, sweet mint tea, unsweetened iced tea, and coffee. One aunt asked another, "Do you think other family reunions have this much food?"

Summer Joy 3 : reading

I am bringing this to the surface from a behind-the-scenes email follow-up to Summer Joy 1, in which I recommended Expecting Adam, by Martha Beck. (Beck is a contributor to Oprah's O magazine.)

Expecting Adam is an entertaining book. Warning: Beck is pro-choice, a lapsed Mormon, and sometimes lets her imagination run away with her. As a married mother of one and a Harvard student, she finds herself carrying a child with Down syndrome. She attends a disturbing class in which abortion for children with disabilities is endorsed, but decides to allow her son to live. Adam brings the Beck family a lot of joy, while radically transforming their perspective on the value of an IQ. Their journey will make you laugh; it will make you cry.

Mitchell Zuckoff's Choosing Naia tells a story along similar lines, but with a more serious tone. It carries additional layers; the child will be bi-racial. The father is black, and doesn't want his daughter to have a double stigma to deal with. It has been awhile since I read this, but I felt for the man in his struggle. If you believe God makes the choice to give a child life, you do not face this particular turmoil. The wife did give birth to the little girl, and the family learned to love her. If I remember correctly, the paternal grandparents were firmly pro-life, and gave the couple moral support. I believe the couple was visiting churches, looking for a good fit, toward the end of the story. (The book is based on a series of articles Zuckoff wrote for the Boston Globe, as he followed the family's journey.)

Michael Berube's Life As We Know It: A Father, A Family, and an Exceptional Child is another account by a pro-choice intellectual. This couple didn't know their son had Down syndrome before he was born. Both parents were professors, and here again, love for child with a disability causes a deep shift in the way his parents view intellectual ability. Berube gets wordy and political. It is fascinating to watch a pro-choice pragmatist trying to argue against aborting children with Down syndrome. I respect this man for loving his son and for his disability advocacy, in spite of his ideology.

I am not recommended these books as uplifting Christian reading, but as a path to insight into the way some families deal with having a child with a disability. They are well-written and interesting. Mourning is changed to joy; what parents greeted with dread turns into a blessing. They are inwardly transformed by their children.

I found the discussions of choice disturbing, but waded through them (1) for the sake of the rest of the story, and (2) because I thought it valuable to understand how people think in these situations. They are a part of the reality in which we find ourselves. (Our local Down syndrome association gets calls from people who are making murder an option when their unborn child is diagnosed with Down syndrome.) I did not understand how these parents could remain pro-choice after having their children. I felt they were blinded by the culture.

For encouragement, try Gene Stallings' Another Season. Stallings is former University of Alabama football coach, and father of Johnny, who has Down syndrome. One of the pediatricians in the group we use attended U. of Alabama, and knows who Johnny is, which makes me feel connected. If I remember correctly, this was a Christian family.

Recommended reading: Changed by a Child: Companion Notes for Parents of a Child with a Disability, by Barbara Gill.

Summer Joy 2: fruit of the vine

Two years ago, our son was approaching school age. We put our house up for sale and moved seven miles north, into an apartment in a school district better suited to his needs. I said "goodby" to my flowers and the tomato patch around the corner of the house.

We spent last summer in an apartment.

This summer's crop will be especially sweet.

View from the road 2

Mother and foal, Holmes County, July '05

This foal is probably destined to pull a plow and/or a buggy. Eventually, it will be separated from its mother, through death or auction.

Thoughts expressed in the previous post, combined with sentiments generated by this picture, bring to the forefront the area of my greatest concern, and that of many parents of children with significant handicaps: what will happen to our child when we are gone? Can I give God "free range" of that time and space? Believe His love will be practically there, for our son?

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39 KJV

Recommended reading: Friendship Ministries
Laying Community Foundations for Your Child With a Disability: How to Establish Relationships That Will Support Your Child After You're Gone, Linda Stengle
Recommended by a friend: A Good Life, Al Etmanski

View from the road 1

Cheerful chicken eggs for sale, Holmes County, July 2005

Yesterday we traveled several hours northwest to visit relatives. When chickens in their area are cheerful, it is because they are free-range (not caged).

Today, in church, a singer sang his view of God had been too small. He had not thought God would be able to help him. In the chorus of the song, he came to see that God had free range across reality. Free range.

If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there. If I take the wings of the morning, and dwell in the uttermost parts of the sea; Even there shall thy hand lead me, and thy right hand shall hold me. If I say, Surely the darkness shall cover me; even the night shall be light about me. Yea, the darkness hideth not from thee; but the night shineth as the day: the darkness and the light are both alike to thee. Psalm 139:8-12 KJV

Five things I miss about my childhood

Catez, of Allthings2all, has tagged me to describe five things I miss about my childhood. (Catez, incidentally, is one of the best Christian writers on the internet, in my opinion. She is a gifted wordsmith, who combines remarkable clarity of thought with an orthodox belief system and a compassionate social conscience.)

1. My grandmother passed away just before the turn of the century. I miss the smell of her house, the creak of its floors, her open arms at the door. I miss her appreciation of the simple joys in life: African violets in the window, the tiny-patterned cloth she chose for her cape dresses, piecing quilt-tops from fabric scraps for each grandchild. I miss her quickness to see humor in human foibles, and her ready hospitality. She always had food waiting in the wings, and the coffee pot was always whisked to the stove, soon as comp'ny came in the door. Grandma had time to visit.

I miss Grandma's church, with a capella singing (real tenors), kneeling for prayer, and hard wood benches lined with relatives. Men sat on one side, women on the other, and there were two Sunday school rooms for children in the back. The church was at the bottom of a hill, on a gravel road. Two outhouses stood behind it. Those who had gone before rested in the cemetery on the hill. Summers, Grandpa mowed their graves every week.

2. I grew up in the country, and my mind does not breathe away from it. I miss sunrises from the living room window, and sunsets from the kitchen window. I miss red and white Herefords chewing their cud across the back fence, the smell of the neighbors' hogs when the wind was from the north, and the burble of the creek through the window on hot summer nights. I miss having a yard big enough for a baseball infield. I miss walking a half-mile to the general store and filling my pockets with penny candy, for 35 cents. I miss fresh vegetables, each in their own time, from onions through tomatoes, all summer long.

3. I miss family reunions, with large tables of food, women gossiping in the kitchen, and men discussing the meaning of Revelation in the living room. Cousins played hide-n-seek in nooks and crannies of the old house, the barn, and outbuildings. This happened on both sides of the family. People grew up, married, and stayed close to home, back then. I miss having my brothers, sisters, and cousins, in close geographic proximity.

4. I miss my mother's cooking. She was the best cook I have ever known, "back in the day," when she cooked. My dad was a minister, and we had company every Sunday that he wasn't filling in at his hospital x-ray job. Saturday's, my sisters and I baked cookies. Sometimes, my mother made pie. Sunday morning before church, my mother got the meat or casserole into the oven, the salad vegetables into ice water, and we set the table. She and we girls rushed home after church to heat side dishes, make iced tea, unload the oven, make the salad, and load the table. All that rushing gained her a reputation as an outstanding cook, in a church of good cooks, and she deserved it. Roast beef, ham and potato casserole, fried-then-baked chicken: it was all mouth-watering.

We had home-made meals every weeknight, almost as good as Sunday's. My favorite was chicken and strawberry shortcake (Mennonite Community Cookbook). Saturday nights were Chef Boyardee pizza, pop, and ice cream. Sunday nights were popcorn.

5. **I miss relative scarcity. We didn't have a lot of things; we valued what we had. My mother made some of the girls' dresses, and some we bought at the Salvation Army. Our only new store-bought things were underwear and shoes. My brothers did get some new clothes, theirs being too difficult to make.

We got new toys and books only at birthdays and Christmas. We saved our hard-earned cash for visits to the big used bookstore downtown. A few times, my parents bought a stash of used books to keep under their bed. Once a week, they would spread them out on the bed, and we would each get to pick one to keep.

Our indoor electronics were limited to the washer and dryer, the mixer, the blender, the radio, and the record player. (We children would sometimes see Leave It to Beaver at the neighbors, or Jim Nabors when we were out visiting on the rare Sunday nights there was no church.) We did not get a television until Neil Armstrong and his crew landed on the moon. I was eleven. After that, we got to watch I Love Lucy for half an hour weekdays, and some Wide World of Sports on Saturdays.

My dad never bought a new car, and did most of his own car repairs, having grown up around machines on a farm. We always had the oldest car in the church parking lot.

We were not targets of advertisers. We bought things when we needed them. Life back then was more about relationships than things, and you did not have to work hard to keep it that way. I miss that.

* She used The Mennonite Community Cookbook and the Mary Margaret McBride Encyclopedia of Cooking.
** For some reason, #5 reminded me of Tolkien's On Fairy-Stories and Leaf by Niggle, which I once owned, and gave away. Maybe because things were unique, and were able to stand for other things, back then. You didn't have to have one of everything.
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This meme"Five things I miss from my childhood," is a great opportunity for you to appreciate the good things from your past and share them with others.
I'm supposed to offer it to four people. I'll try:
Barbara at Mommylife
Violet at Promptings
Amanda at Wittingshire
Dawn at Frugal for Life (will check to see if can fit her theme)
If you're memed out or too busy, let me know, and I'll pass it to someone else.

Remove the blog at No.1 from the following list and bump every one up one place; add your blog’s name in the No.5 spot. Blog names are linked to their posts on childhood, with the URLs for you as well:
1. Just Ask Judy
2. Loose Leaf
3. Black Currant Jam
4. Allthings2all
5. Life In the Slow Lane

And then you pick four people. Thank you.

Summer Joy 1: water

Recommended reading: Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic, by Martha Beck (Oprah magazine contributor)

Happy Father's Day

Father and son

To the former stewards 2

We saw your burgandy van glide past a few Saturdays ago, homesick eyes above out-of-state plates. The stella d'oros (lilies) and the floribundas (roses) were just buds then. Now they, along with the shasta daisies, are in full bloom. The wiegela, past its prime, nevertheless continues to flower. The Asiatic lilies are budding; the lilacs and dianthus are memories.

The only print you left on the deck was the hook for a hanging basket. I have filled two rectangular planters and four large pots with red geraniums, purple petunias, and annual blue lobelia.

Around the tomatoes, I planted orange-yellow marigolds to repel pests, and blue ageratum to complement them. The marigolds have turned yellow-orange against my wishes. The five tomato plants sport yellow flowers; why does Early Girl run in third place?

Lastly, I put six coleus in the shade by the garage, and two pink begonia bulbs in pots on the front porch.

You did not leave directions on the level of care to which your plants are accustomed. So I will spend the summer watching for signs, hoping to accurately diagnose problems and provide necessary treatment in time.

Spring Chicks

Spring Chick

Spring Chicks
A friend of my father's ordered 25 chicks for his children to raise this summer. They were scheduled to arrive this week while the family was on vacation, so spent a few days in my parents' garage. (less crowded than they appear, from camera angle)

Kentucky Caverns

Kentucky Caverns, Kentucky Down Under
Enroute to National Down Syndrome Society Conference, 2002