Delight in utter trust.

Pancakes!

2007-02-09T19:00:00.000-05:00

My favorite, favorite song. It just makes me dance around with my pots and pans.

Ashley's treatment

2007-01-17T19:11:00.000-05:00

WALK A MILE IN OUR SHOES

When I first heard the story of the young girl whose parents took steps to keep her smaller so they could manage her, I was appalled and perhaps quick to judge. I read more and found out both their reasons and the path they took through an ethics committee to have it approved. I am once again reminded that things are never as black or white, or good or bad as we make them.

I too have a child with profound disabilities. Dan is now 23 with the mental and physical abilities of an infant. He is also about 60 lbs and leggy but not very tall. He may be smaller than he would have been because he was not a good eater and he did not get a g-tube until he was 20. Maybe it is his condition or a combination. I know we are lucky because he could not live with us if we could not individually handle him. It’s rare to meet anyone even at TASH with a child like ours. This last conference was the first time some of us sat together and talked because our path is truly different.

Just reflecting on this past month may give you some idea of what life is like for us.

December 1^st, I took Dan to the doctor because he had a cough and we act immediately as he is prone to pneumonia. At the doctors’ office he suddenly started gasping for breath and the doctor called the EMT who whisked us off in an ambulance to the hospital. The doctor later said it was a mucus plug that got caught but we still had 9 days in the hospital. We had plans to fly to my folks for Christmas and the doctor said there is no way he is going to fly. He got out of the hospital and returned to our house with oxygen and a visiting nurse. At that point I was trying to work, deal with a bunch of new people in my house, and provide the same medication and breathing treatments done in the hospital.

We decided to continue with our plans to fly for Christmas, and I found we could take a small oxygen machine on the plane but it turned out he didn’t need it. We were lucky.

The first leg of the trip my husband had to carry Dan up the steps of the plane. We cannot use the device they have for people with disabilities because Dan is too twisted and it is dangerous. When we got to our destination he had diarrhea because of the antibiotics he had been on. Changing a young adult in the airport bathrooms is an interesting experience. Dan barely fits on the changing shelf. It is not private and I have no help as it is in the ladies’ room. We have tried some of the family bathrooms but they often have just a pull down shelf, which is not enough support.

Next, we took Dan out of his chair into my parent’s small car with his sister for support as his Dad lifted the very heavy wheelchair into a friend’s van. At my folks’ house we have to lift both Dan and the chair up steps. (Renting an accessible van costs more than the plane tickets.) My husband hurt his back later that same day playing tennis and since we had plans to see boats decorated with lights, we borrowed one of those old fashioned wheelchairs that someone else could lift in and out of a car.

Going back on the plane we discovered just as we got to the door of the plane to board that Dan needed to be changed. The flight people were great. We waited till everyone pre-boarded and laid him on the jet way with plastic bags and a pillow for his head. The wheelchair was long gone by this time so we couldn’t take him out. Mostly we laugh about this stuff but it can be tiring. Realistically if he was larger we could not do most of it.

Would it be nice to have help? Sure, but who is going to pay for plane and out of state travel? Who would go at Christmas? Where would that person stay? Having more supports would help some but is not the whole answer.

Dan has always been included in all we do including out of country travel. We could never have done many of the things we have done if he was a full size young man. Even now my back is not so good and I have to make decisions about what I can do so that I don’t put more strain on it than it daily gets. We have not had much respite for the past 8 years. He is on the Medicaid waiver so there is money just no one we’ve found to provide the help. We just found an agency that provided a person when he came home from the hospital. We had some respite a couple of afternoons and I arranged for some just recently as we were in involved in a church production. The respite worker never showed up, so we had to take Dan with us.

I don’t see that the system has changed much in the last 23 years and I think it’s realistic to think that we are not going to see any significant change in the near future. Even with changes there will not be the support people needed. We have to deal with what is currently available -- now -- while we continue our work to make things better for people with disabilities and their families.

In the meantime I love my son and enjoy being with him. He is truly a delightful person. We are trying to find our way to having an adult relationship with really no guideposts to go by. We are exploring residential options as has been our plan since he was younger. We will still want to have him involved in our family outings and travels and know that his small size makes it more likely that we can continue this.

TASH has not done a good job addressing this population of people with such profound disabilities. We need to have more conversations with families and learn to listen to each other. As a long time TASH member I fight for the dignity and rights of people with disabilities. As parent who lives it every day I know that sometimes we make hard decisions out of love for our children and not to satisfy any else’s agenda.

(From my good friend, Leslie Lederer, Kentucky TASH)

Kim Edwards is still Number 1

2007-01-10T21:32:00.000-05:00

As of the January 7 NYT Review of Books paperback best-sellers list, the Memory Keeper's Daughter is still Number 1.

Hard to believe this - still NO review from the NYT.

Are they just being snotty about this?

Christmas with the pioneers

2006-12-27T11:45:00.000-05:00

I love the Christmas holidays, the excitement leading up to Christmas Eve, celebrating Christ's birth, lighting the Christmas candle, Santa Claus, the special foods. It is all joy.

But this year, things got a little complicated. Oh, not the normal complications, although we did forget forgot to send letters to Santa by smoke mail. Still, that turned out just fine since Santa called to ask the kids what they wanted for Christmas. Nor was the major complication the fact that I roasted the hen at 275 instead of 350. Apparently I'm roaster oven dial-impaired. No, the chicken got done and I learned a new cooking technique called butterflying. And the presents got delivered after Santa left Peru, according to the internet Santa tracker.

No, the big complication was that after I finished my shower on Christmas Eve morning, we lost hot water. Completely. No hot water. Not even a trickle. A holiday is never the best time for a major plumbing disaster, but think about Christmas cooking and all the pots and pans and dishes! We pulled our our plumbing book, but couldn't figure out the problem. Our neighbor came over. He pronounced possible doom: a leak in the pipes under the concrete slab of our home.

But there was nothing really to be done because it was Christmas. So boil water is what I did. Water for baths. Water for dishes. Water to clean the floor. I started fantasizing about having one of those giant 18th century hearths with the huge kettle that kept the water boiling all the time. (Okay, I'm a realist. I know someone had to tend that hearth!)

Yet Christmas is a time if sharing. My friend Kari brought a housewarming gift, a corked bottle of the latest Wilmore 06, pleasingly hot. (It made a terrific rinse for the silveware.) And amazingly, even with boil, wash, boil, rinse, the dishes all got done and the kitchen looks rather neater than it usually does. Oxyclean helped with the laundry and cold water always works fine for the rinse cycle.

But best of all is how the hot water got fixed. I've had a hard time finding plumbers in the past who were honest and reasonably priced. Our neighbor recommended a friend who works with him, who plumbs. The friend gave us some helpful diagnostic tips, but does not do plumbing on the side. He gave us the name of a local plumber, who was booked. The local plumber gave us the name of his cousin, who was also booked. But the cousin asked some of the guys who worked for him whether they could do the job and one thought he could. This man found a little bearing inside the tubing in the hot water heater had come loose and he took it out. He also fixed my faucet and snaked my drain. All for about $80.

Needless to say, we have a new plumber!

Hmm, back to the old drawing board

2006-12-20T16:47:00.000-05:00

I seem to have been thinking about writing a lot lately, but not actually putting fingers to the keyboard (pen to paper, hand to plow) . . .

So it is time to begin.

Again.

This is probably fairly common, but I'm amused nonetheless. My son has figured out that he wants to celebrate Hannukah (special food and presents every night), Christmas (special food and presents one day, but lots of them) and Kwanzaa (special food, special projects, and zawadi (a/k/a gifts)).

Holiday spirit, anyone?

Bill Penland died

2006-09-19T21:07:00.000-04:00

Sweet prayer warriors, Bill Penland died yesterday morning just shortly before noon. I am so sad for his family, but happy for him. Many people came to follow God because of the way he lived, knowing that he was dying. Thanks for all your prayers.

Update on Bill Penland

2006-09-12T10:18:00.000-04:00

Just wanted to let everyone know that Bill is comotose now. He was able to ride a bike on Saturday, tell his wife and kids how much he loves them, then he fell asleep and hasn't worken up. Bobbie asks that we ask God for the angels to come.

Mickey Mouse Club House

2006-09-02T20:25:00.000-04:00

Son: Mom, you're never to old to play Mickey Mouse Club House, right?

Quick update on Bill and Bobbie

2006-08-18T09:17:00.000-04:00

Just a quick update. First, I just want to say that y'all are awesome. Thanks for all the prayer! Bill is doing pretty well at home. The family is taking it one day at a time and trying to enjoy their time together. They are really enjoying the cards that folks have sent. Bill's prognosis has not changed, but Bobbie seems more at peace. The children are more accepting of the situation. Continue to keep them in your thoughts and prayers. And keep praying for Bill to regain some mental clarity. He can be very clear one moment and quite wild the next!

Memory Keeper's Daughter number 1 for 7 weeks!

2006-08-18T09:09:00.000-04:00

Just in case you haven't been watching, The Memory Keeper's Daughter has been number 1 on the NYT paperback fiction list for seven weeks! But has the NYT reviewed it yet? NO! What is up with that?

2006-07-29T21:29:00.000-04:00

Well, I just didn't feel right about praying that way last night, so I kept asking God to heal Bill and to hold Bobbie in his mighty wings. My husband talked with Bobbie today and she said she prayed all last night, spiritual warfare. She realized that she was under attack. She prayed until dawn and God relieved her. Today, Bill is on the 7th floor, in the neurological unit. There is still some small hope, but it is very small. Doctors are assessing brain damage due to oxygen deprivation that occurred before Billy was resuscitated. Bobby told Billy that she wasn't ready to let him go, but she wouldn't be mad at him if he did go. He said he did not want her to be mad at him. The nurses were having a hard time getting a pic line in; if he doesn't get one in he can't get hydration and meds. It is likely that unless God intervenes, Billy could die within 72 hours.

Please keep praying for the whole family. They have been through medical trauma after medical trauma. Each of the kids has had medical issues from a brain tumor to heart failure. Three of the kids are under age 7 and they are really scared. Just keep them covered, guys.

Bill is critically ill

2006-07-28T20:26:00.000-04:00

Judy Harrison had a chance to visit with Bill and Bobbie this afternoon at UK. She said that he is in a private room at his request, on oxygen and morphine. He told her that he is tired and says he wants to go home to Heaven. Bobbie asks that we pray for her, that she can do as Bill asks, and let him go. Judy said the children do not understand and are struggling, as you can imagine. The doctors will be in this evening to discuss how far to take treatment. I am still praying for healing for all.

Keep praying for Bill and Bobby Penland

2006-07-27T22:20:00.000-04:00

Bill Penland, one of our medically fragile foster dads, is in UK 6^th floor ICU, in critical condition. As many of you know, Bill has been a Hospice patient for over a year. Bill and Bobbie have six children. Bobbie, his wife, has requested that you keep the Penland family in your prayers. Pray for the children. They were able to visit with their dad today. Bill was a very healthy young man until November of 2004. Every day is a gift. I don’t know about you, but I need to remember that more often. If you would like to send cards, the address is Bill and Bobbie Penland – 201 Winding Way – Wilmore, Ky. 40390. It would be wonderful for this family to get lots of mail supporting them and their dad.

The Memory Keeper's Daughter - New York Times Best Seller List

2006-07-27T14:38:00.000-04:00

The Memory Keepers Daughter is No. 2 on the New York Time's Best Seller List for paperback fiction.

PAPERBACK FICTION

Top 5 at a Glance
1. THE DEVIL WEARS PRADA, by Lauren Weisberger
2. THE MEMORY KEEPER'S DAUGHTER, by Kim Edwards
3. THE LINCOLN LAWYER, by Michael Connelly
4. THE DA VINCI CODE, by Dan Brown
5. ON THE WAY TO THE WEDDING, by Julia Quinn

Check out the New York Times article from July 13:

A novel by an unknown author who never cracked a hardcover best-seller list, appeared on a morning television show or cut a lucrative movie deal appears on its way to becoming a paperback hit of the summer.

“The Memory Keeper’s Daughter,” a debut novel by Kim Edwards, is about a doctor who delivers his wife’s twins in 1964 and sends away their Down-syndrome-afflicted daughter at birth. Over the next 25 years, the family suffers the consequences of the doctor’s secret, while his daughter is reared far away by the nurse who attended the birth.

The book sold about 30,000 copies in hardcover when it was published last year by Viking. But since it came out in paperback in late May, it has been climbing best-seller lists and enjoying rapid sales at places like K-Mart, Barnes & Noble and independent bookstores across the country, inspiring comparisons to previous paperback sensations like “The Kite Runner,” “The Secret Life of Bees ” and “Bel Canto.”

…

Last Sunday it entered the New York Times paperback fiction best-seller list at No. 11, and when the July 23 list is published, it will rise to No. 5. Yesterday it rose to No. 1 on the Barnes & Noble trade paperback best-seller list.

Now, when is the New York Times gonna review the book! Come on already!

The Memory Keeper's Daughter (SPOILERS AHEAD)

2006-07-25T13:59:00.000-04:00

I read The Memory Keeper's Daughter by Kim Edwards not too long ago, and thought I'd post a review. Publisher's Weekly summarizes the story as hinging on the "birth of fraternal twins, a healthy boy and a girl with Down syndrome, resulting in the father's disavowal of his newborn daughter. A snowstorm immobilizes Lexington, Ky., in 1964, and when young Norah Henry goes into labor, her husband, orthopedic surgeon Dr. David Henry, must deliver their babies himself, aided only by a nurse. Seeing his daughter's handicap, he instructs the nurse, Caroline Gill, to take her to a home and later tells Norah, who was drugged during labor, that their son Paul's twin died at birth. Instead of institutionalizing Phoebe, Caroline absconds with her to Pittsburgh. David's deception becomes the defining moment of the main characters' lives, and Phoebe's absence corrodes her birth family's core over the course of the next 25 years. David's undetected lie warps his marriage; he grapples with guilt; Norah mourns her lost child; and Paul not only deals with his parents' icy relationship but with his own yearnings for his sister as well." Publishers' Weekly goes on to say that the redundant handling of the plot device and the overly "moist" tone of the book rob it of credibility. (As in moist with compassion.)

I'm interested in other's opinions who've read the book. I think that Edwards did a pretty good job of showing the internal lives of the families involved. And parts of the story were inspiring (Phoebe grasps the medallion!) as well as extremely chilling. The scene I find so deeply, grievously sad is when Caroline (holding newborn Phoebe) watches as an unnamed woman in the institution has her beautiful, long hair cut off against her will. The staff destroy her beauty and her humanity all in one hair cut, then say it just had to be done. I also thought that Kim did a good job of reinforcing that most folks with Down Syndrome will be able to do most things, just at a different pace perhaps than their typical peers.

On the other hand, I found Norah to be a very unsympathetic character, all throughout the book. David was more interesting to me and I empathized with his pain (even though I kept wanting him to snap out of it and make things right!) I liked the way Edwards explored the idea of David seeking redemption and solace through art, but not really finding it there. He did begin to find redemption by going home, confronting the ghost of his sister, through taking care of Rosemary, and through the birth of her son, but then - wham! - he died, unable to make amends for the harm he'd caused, with his story unresolved (often the way real people do).

The two weakest parts of the book for me were the ending and part of the characterization of Phoebe. I thought the ending just seemed too abrupt and contrived. Why would Caroline suddenly decide to head back down to Kentucky to tell Norah and Paul about Phoebe? It came out of nowhere, I thought. Personally, I didn't like the way that the adults sort of pushed Phoebe into going where she didn't really want to go (for example, to the wedding, to France, even for a visit). I also thought it a bit sad that Caroline, Phoebe's champion in educational matters, sort of drew the line at helping Phoebe figure out how to get married. But mainly I was a disappointed that we didn't hear more of Phoebe's internal perspective on what was happening. (Kim did allow us to observe Paul's thoughts and emotions.) All in all, though, I really enjoyed the book and would definitely recommend it to friends.

Put on your fighting panties!

2006-07-25T09:44:00.000-04:00

Hiromu Arakawa - my hero! See Full Metal Alchemist or read the scanlation of the very bizarre Stray Dogs, Arakawa's first foray into manga. Or Demons of Shanghai. Yay!

Vacuum Vixen!!

2006-07-24T17:05:00.000-04:00

Create your own super hero! Hey, what can I say - it's fun. Here's mine.

Neat!!!!!!!!!! It looks like you, too. What are your powers as Black Fire??? I’ve gotta give this a try!

I fry people to a crisp.

I like it! I like it! Can I be your faithful sidekick??.

Sure. And your superpower would be . . . smirking?

Smirking? SMIRKING?!!?!?!? Ummmmmmm, okay, maybe. But I need a main power, too. I want to be able to kick butt like you.

Well, you are a side-kick. What do you want your superpowers to be?

Well, as your side-kick, I could clean up the burning embers of the people you have fried to a crisp. I’ll be … I’ll be … the Hoover Hottie!! Or, umm … Vacuum Vixen!!

Here's my super hero. Check it out!

Just checking - did you mean to go shirtless and shoeless? (Although the tights look very Vixenish.)

D’oh! See, it’s a good thing I’m only a sidekick! (Heading off at warp speed to go put some clothes on . . .) Now I do have clothes on, woman!!!! My shirt is red and my boots are blue! I know, you were just overpowered by the “V”, right? My Vixenny powers are already at work!!! Mwah hah hah hah!!!

Oh wait … I’m a good guy, aren’t I? Wait, are we????? Black Fire who fries people to a crisp. I never considered … Are we villains??!?

See, these are the kinds of things I need to know if I’m going to be your sidekick.

My DH's current big pet peeve is moral ambiguity in super heroes . . . so I' guess we'll just have to be villains . . . MWAH HAH HAH HAH . . . or as Jack Chick would say HAR HAR HAR!

Yes!!!!!!!!!!!!!!! HAR HAR HAR!!!! Total world domination, at last shall be ours!!!!!!!! HAR HAR HAR!!! (Well, okay yours. I am just the sidekick, after all. Can I have a continent of my own, though?)

Hey, send me your new link.

It’s the same one as before. Unless you’re seeing something that I’m not, I think I’m wearing a red turtlenecky thing and have blue boots on. If I’m still sem-nekkid you need to tell me. (Course if you’re evil, you might withhold that kind of information.) P.S., yes, I realize I wrote, "sem-nekkid." I'm a sidekick. I don't have to know how to spell. Or type. Or do grammar. Any of that stuff.

Vacuum Vixen!

Talk is cheap

2006-07-20T08:21:00.000-04:00

Daughter: Guess what, talk is cheap.
Son: No it isn't, talk is free.
Dad: What do you mean, talk is cheap?
Daughter: Talk is cheap until you talk to a lawyer.
Dad: Oh, you're reading an ad.
Son: Talk is cheap until you talk to a liar.

Ballet Cards

2006-07-19T19:24:00.000-04:00

Funny thing: My older son got a baseball card that was included in a bag of oranges (Sunkist). My daughter wanted to know when they were going to put in ballet cards because she wants one. Let's see, I'll trade you a Nuryev for a Margot Fonteyn . . .

Life so sweet or dead meat?

2006-06-28T21:30:00.000-04:00

Harry Potter: Wanted dead or alive
Vote now!

Do you believe in magic?

2006-06-02T16:36:00.000-04:00

The strange thing about magical powers is that the people who possess them tend to dismiss them, while the people who claim them tend to be charlatans. Whenever you meet someone who makes a lot of mystical claims for himself, you can just about bet he's running on empty. But sometimes there are those quiet people in the corner who are a little too quick to be modest. Those are the ones to keep your eye on.

ROGER EBERT / August 19, 1988

What is really going to happen on "Lost" - courtesy of Greg Willson

2006-05-24T13:52:00.000-04:00

Holy crap I’m getting excited- Here’s what’s totally going to happen:

Hurley will go buck wild and slap around Michael, who’s only response is, “Waaalllt!”

Claire’s baby dies. Come on, a baby on a deserted island?

Hurley then finds the observation hatch and an aerobic exercise video. He goes nutty and loses 200 lbs in 2 hours. The other Losties don’t recognize him, and think he’s an other. Naturally, they beat within an inch of his life for the next 10 episodes.

Locke loses faith, gets is back, loses it again…

Charlie is sad because he has no one to play “deserted island” with. He goes off to “find himself” and discovers a Hilton on the other side of the island.

Unfortunately, no one has ever heard of the band Driveshaft, and Charlie overdoses on dinner mints.

Kate, Sun, and the grief-stricken Claire team up and lobby the islanders for equal rationing of food and water for women. Most of the islanders look disinterested/apathetic, so they form a girl band: Freckles. They play the cave Friday nights and the beach Saturday nights.

Jack and Sawyer will realize that their hatred towards each other is really just a coverup for their gender-transcendent love- Brokeback Island.

I mean, that’s got to be at least 90% right…

greg

G.K. was right

2006-05-17T10:31:00.000-04:00

Man is more himself, man is more manlike, when joy is the fundamental thing in him, and grief the superficial. Melancholy should be an innocent interlude, a tender and fugitive frame of mind; praise should be the permanent pulsation of the soul. Pessimism is at best an emotional half-holiday; joy is the uproarious labour by which all things live ... Joy ... is the gigantic secret of the Christian.

Completely Lost

2006-05-11T21:19:00.000-04:00

Hey, Damon Lindelof & Carlton Cruse, believe it or not, we've kind of figured out that the person whose story line suddenly gets developed is the one who's gonna die. Or in Libby and Ana's case, the two.

An early M.C. Escher

2006-04-30T00:54:00.000-04:00

Wheelchair Unbound by Harriet McBryde Johnson

2006-04-27T14:26:00.000-04:00

I'm at the United States Holocaust Memorial Museum in Washington,
touring an exhibition: "Deadly Medicine: Creating the Master Race."
Tomorrow evening I will be interviewed onstage by a museum official. In
a sense, that will make me a temporary display, an object of
interpretation, a body in a wheelchair, a body so pared down and twisted
up by a genetic neuromuscular disability that it doesn't need a nearby
Nazi to get a reaction. In another sense, I will be an interpreter,
talking from experience as a disability rights lawyer and activist.

The exhibit tells of a eugenics movement that sought to apply principles
from Darwin and animal husbandry to humans. In Germany, it proceeded
step by step from voluntary "healthy baby" campaigns to forced
sterilization and the murder of some 200,000 disabled children and
adults.

Looking at the photos of doomed children, I see my old crowd.
They could be us. In "special" schools and camps for children with
physical and mental disabilities, we grew up knowing we were a category
of person that the world did not want. Most of us had a story of some
doctor advising our parents to put us away or to let us die. We owed our
survival to parents who had irrationally bonded with us, who held
old-fashioned notions of right and wrong. We knew we were lucky and
hoped our luck would hold. To increase the odds, we tended to be
charming. We developed thick skins.

My skin is thick enough now to let me wind through the exhibit without
weeping, almost without trembling. I roll onto the tile floor meant to
resemble those in the gas chambers that the Nazis designed for the
"humane" killing of disabled patients. I see a photo of a girl who was
once held dear by someone who put a bow in her hair but could not
protect her.

Then I see the wheelchair. It's similar to other prewar wheelchairs I've
seen, but there's something unusual about the frame. Is this a tilting
mechanism? A fancy suspension system?
Looks like fine German engineering. I like vintage wheelchairs.
An obsolete Everest & Jennings drive belt hangs in my office as a bit of
nostalgia, like an old wagon wheel in a barbecue shack. I have an urge
to jostle the chair, to see what that frame does. The sign mentions a
German institution. So, no single owner. But even in institutions,
people manage to bond with chairs. A state-owned chair may be occupied
by the same person every day, parked beside that person's bed at night.
Maybe the chair was used by someone with cerebral palsy until he died,
then someone with a stroke until he died, and on down the line, until .
. . until they all died?

The people who used this wood-and-metal survivor probably loved it,
liked to move about even as they were sucked into the nightmare. The
nightmare began when the state removed them from their families,
concentrated them in institutions. The same state provided them with
beautifully engineered chairs and then killed them for eating up the
resources of the "fit."

I pull myself away and try to absorb the rest of the exhibit.
It tells how the eugenics dragnet widened, of the way concentration
strategies, gas-chamber technology and sterilization techniques first
designed for disabled people were applied against whole populations
defined as genetically undesirable.

By the time I roll onto the stage the next night, I've thought a lot
about there and here, then and now. When the first question comes, I
tell them about my fascination with the wheelchair, and somehow it
sounds funny, and laughter fills the room. We shuttle between the
tragedy of Germany then to the comedy of here now, from the horror of
bureaucratic killing to a funny confession that I, too, tend to stare at
disabled people on the street. Before I know it, I'm giving them a real
show.

What has come over me? Part of it is surely the tendency to
compartmentalize. But there's more. In this room, people with
disabilities in thrilling variety make me feel at home. It's like the
disability ghetto of my childhood, but so much better.
That was a community of exclusion, created by nondisabled people who
considered us unfit. This is a community of inclusion. Here people,
disabled and not, are gathered by choice.

I haven't forgotten that two million people remain in U.S.
disability institutions, that some disabled children still cannot attend
mainstream schools, that too many of us live in poverty. But I can't
hold onto anger and sorrow in this room.
It is too full of life. Behind the laughs I keep getting, I feel a
shared sense of possibility, a drive for a world that will embrace both
the fit and the unfit and hold them so dear that the categories die.

Does God speak through fortune cookies?

2006-04-26T13:56:00.000-04:00

You are filled up with a sense of urgency. Be patient or you may end up confused.

Update on Bill Penland

2006-04-25T23:06:00.000-04:00

Bill is still hanging in there. It is an amazing God thing that he is alive and I am still praying for his complete healing. He hasn't eaten anything by mouth in two years. Still, he strongly wants to live. But he wants the pain to stop. Last week he had surgery to put in a catheter for a pump for pain medication. The surgery took about an hour and a half, then he was in recovery for an hour. The first night he had a really big spinal headache. So he could not raise up at all. Then Thursday morning he felt better and his pain was controlled with the meds. The stuff they are able to give him this way is seven times stronger than the morphine he's been taking. But he got another headache and was really sick again. His docs had to remove the first temporary pump, but Bill will get the permanent pump in two weeks. Unforunately, the headaches come from the spinal fluid leaking out after the procedure. So keep praying! After Bill's had the permanent catheter and pump for about a week, he shouldn't have headaches any more. Pray that he'll be able to get it soon. His family says that it did help the pain alot and it would be great if he did not have to hurt so bad.

What if God were one of us?

2006-04-25T22:13:00.000-04:00

I've been reading and praying through Phillipians lately. It was really encouraging to read Phillipians 2:13: God is working in you to make you willing and able to obey him. I've been discouraged about some areas of my life that I just haven't seemed to be able to give over to him to change, but this verse reminded me that even though it doesn't seem like anything is different, God is still working in me. I don't have to force myself to change because he will help me become willing and able to obey him at the right time. Cool isn't it?

I also realized I could pray the first few verses of Chapter 2: Lord, you encourage me and your love comforts me! Help me live in harmony by showing love for others. Help my husband and I to be united in what we think, as if we were only one person. Help me not to be jealous or proud, but help me to be humble and consider others more important than myself. Help me care about them as much as I care about myself and think about them in the same way that you thought: Because you were truly God, but you didn't try to remain equal with God. You gave up everything and became a slave when you became like one of us.

David Sedaris ruined Billie Holliday for me

2006-04-20T14:49:00.000-04:00

Last night I tuned in to Napster to listen to Billie Holliday's version of "Do Nothing 'til You Hear from Me" . . . but all I could hear was David Sedaris chanelling Billie Holliday singing, "My bologny has a first name, it's O-S-C-A-R . . .."

The bottom line

2006-04-06T16:14:00.000-04:00

We always want to be better than what we are, and we compare ourselves to others. I guess we need to stop comparing ourselves to others and just be who God made each of us to be; enjoying the ride as we find out who we are. -- TrigunX89

Cooler Ranch Doritos

2006-04-04T20:47:00.000-04:00

Okay, TrigunX89 has inspired me to start blogging again. The most pressing question of the moment is: What's up with Cooler Ranch Doritos? Why are they now called Cool Ranch Doritos? But I love the new bag. Actually, I love the new name. No one ever called them Cooler Ranch anyway. Cool Ranch is cooler.

Urgently pray for Bill Penland

2005-06-29T21:37:00.000-04:00

Some of you have been praying for Bill Penland, a former firefighter and Asbury employee who has been crippled by pancreatitis. He is having surgery tomorrow and I am writing you to ask the God protect him, give his surgeons wisdom to help him, and that God would heal him.

To give you a short update, over the last ten months or so since Bill got pancreatitis, he has lost a tremendous amount of weight (I would guess 70 pounds or more, and he has never been a heavy person). The pancreatitis has attacked many of his organs and he has been fighting infection as his body keeps shutting down. He never regained the ability to eat, his lungs have been damaged and he now must use oxygen, he is in constant pain, and he is receiving Hospice Services for palliative care. The Mayo Clinic and St. Joe's have been treating him, but no one has been able to help him.

Recently, he has had more blood work and tests. His doctor found a mass of some sort near his pancreas. Tomorrow, Bill has surgery at 10:30 so that doctors can biopsy the mass. The procedure is very risky because Bill is in such poor health. Originally, the doctors would not operate on him, but after they found the mass they thought they had no choice but to proceed. If the mass is a cyst, the doctors will remove it. If it is pancreatic cancer, the doctors will treat Bill with chemotherapy.

Bill's family has been attacked with a variety of serious illnesses during the past two years. He has five wonderful children, three of whom still have ongoing medical issues. He is also the guardian of a young man with Down Syndrome. His wife, Bobbie, has been ill, too, and is under a tremendous amount of pressure right now. Recently, Asbury College terminated his position, so he is now trying to support his family on disability payments and pay huge medical bills at the same time.

So here is the prayer request, again. Prayer for Bill to come through the surgery successfully tomorrow. Pray for God to encourage his spirit. Pray for his protection and complete healing.

Woo woo credo

2005-06-25T22:42:00.000-04:00

Well, I was gonna post the Woo Woo Credo, here, but although it is marvelous, it is quite lengthy. So if you want to learn how to be an Internet Woo Woo, just read the Credo, courtsey of WatchingYou.com. Of course, this really has nothing to do directly with The Three Stooges (yes, I am a woman, yes I do love the Stooges), although Lou Minatti's website and blog do capture the essence of "Woo woo woo woo woo woo!"

I've got some joyful "woo woos" of my own. Unless I hear otherwise on Monday, my foster son's order of termination of parental rights was final yesterday. That means adoption. Mommy. Daddy. Woo woo! (or as soom would say Woot!)

June in Nashville

2005-06-18T00:31:00.000-04:00

I can't believe it is June in Nashville and I'm sitting here with the heater on wide awake because I drank too much sweet tea. I'm missing home and thinking about termination of parental rights final orders and adoption hearings and pondering Republicans who profess God but seem to serve money. Today was the first public hearing on the new federal special education regulations. The spoken passion of people with disabilities and parents and advocates was evident. But the agency folks worked hard, too, trying to be fair, yet trying to walk the line. I just keep thinking about the law, the statute, and what a close call it was that more harm wasn't done to children with disabilities as a result of it. I have to thank God that Sen. Kennedy and Sen. Grassely kept at it so hard; otherwise, the Republican House bill would have become law and we would have headed back, back into the days of much less inclusion for kids with disabilities.

It is so sad to me that we, as Christians, talk all this talk about respect and diversity and strive to be mission-minded, but we live in little ghettos filled with people who are just like us. Christians should be the people with the most radically different families of friends, but how many churches have you ever attended where there was a sizeable group of folk with disabilities included in the regular life of the church (not in some segregated program)? I can think one local body in the urban area in which I live that sets this example. I wonder why are there so few L'Arches? Why is it that there has to be a disability prom night at a local mega-church (with adults attending who are way too old for the prom) in order for folks to be able to feel at home, not on stage, where they can let their hair down and just be? There is so much seeker-emergent-blahblah talk of radical love and servanthood, but it doesn't really extend to anyone different. Or older, I believe.

Okay, the cramps are getting to me. I'm going to escape and read some Harry Potter fanfic.

Dreaming of summer

2005-05-16T14:54:00.000-04:00

Laputa Narnia Hogwarts. Nuff said.

2005-04-21T18:33:00.000-04:00

Never eat a cookie bigger than your head.

So tired, but wide awake

2005-04-18T22:59:00.000-04:00

My body is tired yet my mind is awake. It isn't very late (only around eleven) so I could read a bit, but I've got to get up extra early in the morning. It is a visit day for my sweet foster son, and there is breakfast to make, bottles to fill, diaper bags to pack, lunch to prepare, kids to dress, a husband and kidlets to kiss before I drive this little one to his visit. And it is doctor day for my baby girl: she seems to be breaking out with something that, according to our family physician, isn't chicken pox and isn't impetigo. So off to the dermatologist we go.

Everything seems alive tonight. The windows are open and I can hear a crowd of college students whooping, yelling, cheering over a soccer game. The air is cool, not muggy, just a little damp. Something large buzzes against the screen. Earlier, the faint bark of my neighbor's golden retriever sounded the "Midnight Bark." Buddy and Digory took it quite seriously and sought me out several times. But I couldn't see what they obviously heard. They are all but sleeping now.

The gospel according to Constantine

2005-03-04T10:07:00.000-05:00

The review of Constantine by Decent Films was thought-provoking and it made me laugh out loud. For your enjoyment, the theology of the film.

Here’s a rundown of the gospel according to Constantine, by the numbers:

Good and evil are real.
Good and evil exist in a dualistic “balance”; God and the devil are for all intents and purposes equal rivals. (The notion of the primacy of good and evil as fallenness and twistedness is largely absent here; unlike Peter Jackson’s Lord of the Rings, which made it clear that orcs were once elves, it’s not at all clear here that demons are fallen angels.)
God has a plan for all of us (though Constantine thinks otherwise, calling God “a kid with an ant farm”).
You can’t earn salvation. God expects self-sacrifice and belief. Selfishness is the way to hell.
Smoking is bad, too.
By the way, you can’t be absolved unless you repent. (Maybe, kinda, sorta. More on this later.)
Angels and demons can help nudge us toward good or evil, but the potential for good or evil is in us, and we are responsible for our own acts and our eternal fate.
In practice, you only ever see demons fighting for evil — never angels fighting for good. (Actually, the same could be said of The Passion of the Christ… though at least there on the side of good you do have Jesus and Mary, as opposed to a profane freelance exorcist.)
Demons are very, very bad. But angels aren’t necessarily very, very good. They might be freaking wackos.
Smoking is also very, very bad.
God and the devil have a wager for human souls, and neither is supposed to directly intervene in mortal affairs.
So if a demon tries to cross over out of hell into physical space, or if, hypothetically, the devil as well as God had a son and the devil’s son were going to be born of a woman with no human father, well, that would be a violation of the rules, and might just precipitate the Apocalypse.
Jesus was the Son of God on earth, and died on a cross and was stabbed with a Roman spear. (Don’t ask me how this jives with the previous idea. After all the writers who worked on this script, you expect it to make sense?)
Hell is a very, very, very bad place.
Smoking, too, is very, very, very bad.
Sacramentals are good. At least, they repel demons.
This includes cross-engraved brass knuckles and crucifix-shaped firearms. Yeah!
Suicide is a mortal sin.
Have I mentioned how bad smoking is?

To read the review in full, check out http://www.decentfilms.com/reviews/constantine.html.

Pray for Penlands

2005-03-03T22:59:00.000-05:00

There is a beautiful family who lives nearby, the family of Bill and Bobbie Penland. Though they've struggled through an amazing amount of life threatening illnesses, they still hope, love, wait for God. They are guardians to Stevie, who has Down Syndrome and a heart defect that was recently repaired. They are birth parents to Samantha and BJ. Improper medical care from Samantha's appendicitis caused infection to set into her bones and she has lost the bones of her foot. Their son had a brain tumor several years ago, but is now a healthy, growing young man. Their three adopted children, Chaz, Robert and Elizabeth, have many emotional and health issues. And Bobbie was hospitalized for quite a while last year with a massive internal infection. Now Bill is sick. Very sick. He's had peritonitis for about eight months and his body isn't healing. He has abnormal cells and the doctors can't figure out what is wrong. On top of all that, he just lost his job. Please pray for God's healing mercy to pour out over Bill. Pray that his body begins to repair itself. The kids need their daddy. Bobbie needs her husband. Pray for a miracle. Pray for complete healing.

Surviving Christian Too-Cool

2005-02-28T20:19:00.000-05:00

Today the most recent copy of 850 Words of Relevant arrived in my in-box. (Thought I'd unsubscribed.) What did I find? Irony, irony, irony. Well, it seems Relevant is launching its own clothing line to go with its magazine, books, music and sweatshirts. This from the magazine that brought you The Christian Culture Survival Guide, which takes "a hilarious look at the peculiarities and churchisms that have been added to this thing called Christianity," leaving "you with a knowing smile and the reassurance that true faith is only found in Jesus, not in the gift aisle at the Heaven Sent Christian Bookstore." Hmm . . . thank goodness Relevant would never stoop to creating its own $$-generating Christian chatchkeys. It is so reassuring to know that Relevant is fighting trendiness to bring us "its own line of RELEVANT Apparel—a full-on, high-end clothing line. Not only do the pieces carry conversation-starting messages and concepts, but the designs are dope." As Cameron Strang says, "Seriously, this is quality stuff you’ll want to wear." Oh wait . . . I forgot, Relevant is cool, so everything Relevant is dope. That's not ANYTHING like you'd find in the Heaven Sent Christan Bookstore, is it? Et tu, WWJD?

2005-02-24T20:16:00.000-05:00

Peace.

Her face, her heart, her hands and feet

2005-02-24T16:15:00.000-05:00

A friend wrote me that 9 out of 10 preterm babies diagnosed with Down syndrome don't get a chance to live. I consider this, looking at my baby girl's sweet face as she reaches out to touch her reflection in the mirror, and I am so glad that her birth parents chose life.