Interesting article

My comments in bold

When a baby is destined to die (what baby isn't?)
Perinatal hospices support families with a terminal prenatal diagnosis
By Linda Dahlstrom
MSNBC.com Health editor
MSNBC
updated 8:24 a.m. ET, Mon., March. 24, 2008

Jeanne Deibert knew as soon as she saw the ultrasound.

It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.

She was his mother. And she felt certain that something was wrong.

As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.

The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.

As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.

As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.

But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.

Two choices, both heartbreaking
In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.

“Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact.”

Studies don't specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld's experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.

However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.

Both options — to terminate or continue the pregnancy — are heartbreaking.

“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. ... For many families it's their first real parenting decision.”

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering? (Um, ALL Children suffer. Every person suffers. This is not unique.)

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”

Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.

“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”

Meeting Robbie
As Jeanne’s pregnancy continued, she and Steve created a specialized birth plan. It had Robbie’s name at the top and the funeral home’s phone number at the bottom. In the middle they detailed three scenarios: what to do if Robbie was born breathing, what to do if he was not breathing and what to do if his heart wasn’t working. No extreme measures, they decided. And in each scenario, they wanted him in their arms as soon as possible.

“Robbie’s life will be lived with love and honor,” the birth plan stated. (I love that.)

The Deiberts worked with Stepping Stones Pediatric Program to help fulfill that goal. The Seattle perinatal hospice supports families during pregnancy and can help make it possible to bring the baby home after birth if that's what the parents want, says Maureen Horgan, a social worker and the program's coordinator.

When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby's hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.

Robbie was barely breathing when he was born on May 18, 2005 at Seattle’s Northwest Hospital. Doctors worked on him for minutes that seemed to stretch on into forever before finally deciding to give him to his parents to hold as he died.

Jeanne, then 40, exhausted from a long labor, drank in the feel of her son in her arms, memorizing every detail. She took in his tiny hands, wide-set eyes and his perfectly shaped ears that she knew probably couldn’t hear.

Then Steve, 43, cradled him and started introducing his youngest son to the crowd of friends and family who had gathered in their hospital room.

“It was clear I was taking him around to say hello and goodbye,” he remembers.

Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.

Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.

“My big hope was that his life, however long it was going to be, would be full and not painful,” says Steve. “I would have gladly accepted a miracle, but I didn’t have hopes for him to go to college. We thought, ‘What’s the most we can do for him?’”

‘Things could have been done differently’
The precious hours the Deiberts spent with Robbie in their arms immediately after his birth would have been unheard of in most hospitals only a few decades ago. Doctors and nurses often wouldn’t let parents see their child if they knew the baby was going to die or was stillborn, believing it would be less searing for parents to let go if they’d never said hello.


In 1982, Annette Klein’s daughter was born dead. The staff allowed her to hold Courtney for a few minutes, unusual for the time, but then a doctor brusquely told her, “Well, this has got to end sometime. It’s going to be hard. We may as well just get it over with now.”

But even that brief time was everything. “When I saw her I was filled with this immense mother’s love. … And holding her after her death meant for me that that denial was gone.”


As a nurse herself, she thought about all the other families who didn’t get even the few precious moments she’d had — and wondered what it would have been like if she’d had more time with her daughter.

“I look back and think of all the things that could have been done differently. That was really the impetus,” she says.

Today, Klein, a nurse who specializes in parent education and support at the Birth Center at United Hospital in Minnesota, estimates she’s worked with about 200 families with a terminal prenatal diagnosis, providing one-on-one birthing classes so grieving parents don’t have to sit surrounded by giddy mothers- and fathers-to be. She also offers them their own private tours of the birthing wing and encourages them to start parenting their child in utero since that might be the only time they have with their baby.

“I tell them, ‘You are already a mother and have an amazing opportunity to love them, parent them, sing them their little lullabies,’” she says.


‘Born perfect, except for his heart’
Not all medical caregivers are supportive. Schoonveld, the genetic counselor, has a friend who was told by her doctor that the pregnancy would be so stressful for her that she should terminate. When she decided to continue her pregnancy, “the response she got was, well you might as well not even show up for your appointments because this baby isn’t going to live.” Maureen Horgan, of Stepping Stones, has talked with women whose doctors didn’t see the point in weighing them at their prenatal checkups.

Kuebelbeck hopes to help change that kind of reaction. She is often asked to speak at medical conferences around the United States about perinatal hospice, encouraging doctors and geneticists to support those families who do choose to continue and sharing the story of her son, Gabriel.

Three and a half months before he was born, Kuebelbeck found out that Gabriel had an incurable heart condition and would die soon after he was born. She and her husband decided to fill their pregnancy with things they once hoped to introduce Gabriel to in the years following his birth.

“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”

He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.

Some have wondered why she’d put herself through a pregnancy and birth when she knew she’d go home with empty arms. “It isn’t all for nothing,” she says. “You can still love that baby, protect that baby and give that baby a peaceful goodbye. That’s not nothing.”

Living life fast
Like Kuebelbeck, the Deiberts wanted to make whatever time Robbie had as rich and loving as possible.

In the days that followed after they went home from the hospital, Steve and Jeanne took him to the beach, to church and to visit friends. When he turned 1 week old, they celebrated with a brownie and candle, knowing he wouldn’t be alive to see his first birthday.

“We had the sense we needed to live life fast,” says Jeanne.

When the family wanted to take Robbie on a car trip across the state to visit relatives, Stepping Stones helped put them in touch with a hospice in another city in case Robbie died on the way.

Jeanne wasn’t sure exactly how much Robbie was aware of. A nurse told her he was probably deaf. She doesn't know how much he could see and wonders about his brain function. But her goals for his life were simple.

“I wanted people to experience him,” she says. “And I think he was experiencing being held.”

Jeanne and Steve traded off caring for Robbie in three-hour shifts around the clock. Both of them were terrified each time he dislodged the feeding tube from his nose; if they reinserted it incorrectly it could go into his lungs, which would kill him.

A nurse from Stepping Stones came over nearly every day to see the family and check on Robbie.

“They’d say, ‘Oh, he looks beautiful. You’re doing great. He seems happy.’ It was so reassuring that we were doing the right thing. It helped us to relax because every day we were wondering ‘Is this the day?’ ‘Is this the moment?’ And we knew that they were going to come (when he died). We weren’t going to be alone,” Jeanne says.

At night, Jeanne slept with Robbie cuddled against her chest. She’d heard about other parents of terminally ill children who woke in the morning to find their child dead in the bassinet and she wanted to make sure that didn’t happen. She needed to know the moment her child died, to be with him and see it through.

‘Hold on tight … and let go’
At about 8:15 a.m. on June 16, 2005, Jeanne was in the kitchen with her mother making breakfast. Nestled into a carrier against her chest, Robbie’s breathing began to change. He took a breath … and then a long pause. Then he took another, followed by stillness. Then at last another breath.

Jeanne ran into the bedroom to wake Steve. As she started to describe his breathing pattern, they realized Robbie wasn’t breathing. Jeanne laid him down on the bed beside Steve. “No, no, not yet,” she pleaded over and over as she rubbed Robbie’s cheeks, hoping to prompt him to inhale.

He never took another breath. He had lived for 29 days.

“I think he just turned off,” remembers Steve.

The Deiberts called Stepping Stones and a nurse came over to help prepare Robbie’s body and notify the funeral home.

“It was one of those things you don’t learn in normal parenting manuals — who do you call when your baby has died?” says Jeanne.

Soon friends, family and their priest were filling their home, holding Robbie’s body and loving him, just as they had the day he was born.

“The whole experience was very serene,” she says. “I don’t think we put him down once during that time.”

That morning as Jeanne and Steve sat on the sofa cradling Robbie’s body, their son Stevie walked over and placed his beloved stuffed dog gently on Robbie’s chest, a big brother’s last gift.


The night before Robbie’s funeral, Jeanne hand-lined the small wooden casket a friend had made. While she worked, she envisioned parallel worlds — the real one where Robbie died, but also a glorious imagined one of what it would be like if he’d lived.

As she carved padding from the mattress that had once lined Robbie’s crib and covered it with soft fabric for his coffin, she pretended she was making a Halloween costume for him. While deciding the details of his service, she imagined what it would have been like to plan instead for his wedding years down the road.


Today, the Deiberts first son, Stevie, is now almost 5 and loves trains and puzzles. Sixteen months ago, they had another baby, a little girl named Adele. Jeanne stays home with her kids, and the family still lives in the house where Robbie spent his life. His photos adorn table tops along with pictures of his brother and sister. Jeanne is tenderly keeping mementos from his life, like a hand-made blanket, Robbie's birth announcement and the outfit he wore home from the hospital, so Stevie and Adele can have them when they're older. Robbie’s footprints, forever tiny, hang on the wall.

"Robbie taught us to love what we have, when we have it, because time is measured," Steve said in the eulogy he delivered at his son's funeral. "Robbie has taught us to hold on tight — and to let go."

© 2008 MSNBC Interactive
URL: http://www.msnbc.msn.com/id/23682263/

Happy Easter!

The self-imposed Holy Week Blog Hiatus is over....so stay tuned for new things. :)

Happy happy!

My cousin Julie gave birth to twin girls yesterday, Lucy and Natasha. I believe they are all doing well.
I can't wait to see them! :)

Forbidden love

This piece from the NY Times beautifully expresses the loneliness CF patients feel, and how some of us deal with it--by breaking the rules.

Plug

Hey, y'all please go vote for me (Journeys of a Catholic Poster Girl) here.

Thanks!

Beads

I was at the "resort" today, and noticed a pamphlet for a new program Children's is starting, called "Stinger's Bravery Beads", which is named after the Blue Jackets' mascot and is funded through the Jacket's Foundation, which helps fight pediatric cancer.
As I looked at it, I though, "wow, this is great! I would love this!" Then I noticed something--it's for cancer kids only.

Why is that?

I looked at the list of things that you could earn beads for. The list is long, but here's what I've done:

--Birthdays (since diagnosis)
--BM Transplant (I'd replace with lung, but you say tomato)
--Clinic Visit
--Dressing change (let's see...where do we start? PICCS? Ports? The dressings from the burn post-surgery?)
--ER visits (ha! Ha! I'd have half a million)
--Fever
--Holidays (since diagnosis? In hospital? Either way, we'd have this covered)
--Hospital Admission (no comment)
--Line In (PICCS? Peripherals? Port access? Does this count ones that went bad, too?)
--Line Out
--Major Surgery (the transplant, the CI)
--Medical Exam (oh, the thousands upon thousands)
--New Diagnosis
--Off TPN (yup, done that! Several times!)
--OT/PT
--PCA/Morphine (ahhh, the Lovely PCA pump!!)
--Pokes (millions. I kid you not.)
--Scans/Tests (MRI, Bone scans, VQ Scans)
--School (in house)--did that with my first diagnosis
--School re-entry (many, many times)
--Spirituality (a lot! Thanks Fr. Mark!)
--Terrible, Horrible, Very Bad Day! (um, lots)
--TPN
--Transfer to PICU (one, or two, if you count post-tx)
--Transfusion
--Tube insertion (Chest, Catheter)
--Very Good Day (A few of these)

But there's one on the cancer list that you will NEVER see on the CF list:

--End of treatment

Because CF treatment only ends when youdo. There's no remission, no recovery, no "Five years and we think you're cured" status. Sure, I don't do Chest PT anymore. Other things have taken its place. But that doesn't mean that it's over.

I think we deserve some beads.

CF genetics 101

I was talking about lung tx and CF with a colleague today, so here is a brief genetic explanation from our discussion

CF is the most common fatal genetic disease in the US, mainly affecting caucasians and certain other ethnic groups. To determine the presence of CF, the following genetic diagram may be helpful.


A= dominant gene a= recessive gene

Most of the time, a dominant gene wins out (obviously) and is seen in the child. Dark hair is a dominant gene, for example.

So, two parents that are Aa and Aa for CF will yield the following chances for each kid:

--AA: Child does not have CF and is NOT a carrier (he has both dominant genes)
--Aa: Child does NOT have CF, but is a CARRIER of CF, meaning that if that person marries another Aa person, they have a 1 in 4 (25%) chance of having a child with CF.
--Aa (same as above)
--aa: Child HAS CF (this would be me).

A family note: recessive genes seem to take the cake in my family. My dad is a dark haired Italian. My mom is a blond German-Irish/Scots. The three of us? See below.

Blizzard Food: Shrimp with Tomato-Feta compote

This is so easy--it takes less than 10 minutes to prepare, and will remind you of summer. A very good thing to be reminded of when you're sitting in 16" of snow.

The Activity Report

Cooking:
--Shrimp with Tomato and Feta compote
--Chicken Piccata
--Brioche (mmmmmm)

Reading:
--Portrait of a Lady
--various cookbooks

Watching (oh, what a list):
--Michael Clayton
--The Interpreter
--Mystic River
--Cinderella Man
--The Passion
--Million Dollar Baby

(Yeah, I didn't go for the light movies...ha ha).

I think it might have finally stopped snowing.

The weather outside is frightful

Some pictures. ...

Last night, 'round 5:00:






This AM, around 11:00:




And around 4:15:

Blizzard Food: Egg Drop Soup and brioche

From Thirty Minute Meals


Stracciatelle: Italian Egg Drop Soup

For every two bowls:
--2 cans (14 oz. each) no-fat, low-sodium chicken broth
--2 eggs
--3 tbsp. grated parmesan cheese
--ground nutmeg (to taste)
--fresh-ground black pepper (to taste--the more pepper, the more heat)
--Handful chopped parsley (I used dried)

Heat broth over medium-high heat. Scramble eggs with cheese, nutmeg and black pepper. As broth comes to a boil, drop broth to a simmer and drizzle the eggs into the pot in a slow stream by scooping eggs into brother with a fork. Drizzle in a circular motion. The result will be rags of eggs in the broth. When the eggs are all incorporated into the broth, add parsley and turn off the heat. Ladle out soup and serve with crusty bread.

(This is also in some Chinese cookbooks, with a few variations, and can be called "egg flower", since the egg pieces seem to "bloom" when they hit the pot.)

The brioche is being made now--for finishing tomorrow.

A blizzard? Really?

Apparently we in Ohio are getting a REAL blizzard. So I figure, if it pans out, I should document it.
Therefore, I will be posting snow pics, snow recipes, snow reads, snow movies...ha ha. Well, OK, basically documenting what happens during a "blizzard."

This may or may not be interesting. But we'll see.

First NOTE: TRAVEL--PLEASE, for the Love of All Things Holy, TURN YOUR LIGHTS ON on the roads! Yes, at 4:00 pm you didn't need light to see your dash. But with blowing snow, other drivers need to see you. Unless you want to be hit.

Some randoms for your Wednesday

Quick add: vote for me!

Ballet class: Is really going well. My second class was on Monday, and I held my releves longer than two of the other girls in class. Go me! (And they were the thin type, which makes you think--healthy, right? At least my abs are stronger. Ha ha!)

Weather: Monday--61 degrees. All the windows open, my sunroof down for the first time this year! Today? Snow. Grossness. It's about 30 something. Ew.

Books: I just finished Oliver Twist. Descriptions: fantastic. Oliver and his plot: excellent. Fleshing out of secondary characters: good. Subplots: too many. Oliver "disappears for the length of a Bible" in some places. We do not need to hear about the Beadle, Mr. Brownlow and Charlotte, etc., etc. once Oliver is done with them. They took up waaay too much time. And did anyone else think the whole Mr. Monk is Oliver's half-brother thing was sort of--random?

Um...

Adele Stan [Ramesh Ponnuru]
makes the feminist case for Obama. A sample:

The feminist rationale for an Obama vote is really quite simple: My grand-niece. Your daughter, if you have one. All the little girls who are growing up at a rather grim hour in American history.

Our nation is sinking deeper into recession. We are mired in a bloody, intractable conflict in Iraq, and may be losing the war in Afghanistan.Our beloved Constitution has been raped and pillaged. Instability and the specter of war threaten every continent. Climate change is hard upon us.

As Lizzie says, "Thank you for my share of the favor, but I don't particularly like your way of getting [presidents]."

Yay!

It's ballet class night!

Since it's an Election Year...

Go vote for me!

Wow, thanks guys!

Catholic Poster Girl (my other blog) has been nominated in the Catholic Blog Awards.

Voting starts on Monday...so, um, vote for me. :)

Meme time!

1) What is the last movie you saw in a theater? Was it good? I am going to see The Other Boleyn Girl tonight, so maybe I should wait on this. BUT the last movie I saw in the theater was Juno, and yes, it was good.

2) What is your favorite tv show? Desperate Housewives

3) What is the last album you bought (or stole from the internet, or burned from a friend) that you loved? Idina Menzel's I Stand.

4) If you were in charge of People Magazine’s Sexiest Person Alive, who would win? Colin Firth. No Questions. :)

5) Who is your favorite artist? (Like art artist) Oh, this is hard. Painting: Monet, Renoir...the Impressionists in general. Singing: Renee Fleming, Josh Groban and most musical theater kids :)

6) What is your favorite musical/opera/play? Musical: Phantom, of course! Opera: La Traviata Play: The Miracle Worker/A Man for All Seasons

7) What do you think is the worst song ever recorded? There are Simply Too Many.

A brief rant on movie reviews

As we know, I like movies. So when a movie I've been anxious to see comes out, I gobble up the reviews so that I can either 1) prepare myself for a good time or 2) shout that the critics don't know what they're talking about.

Case in Point: The Other Boleyn Girl, one of my favorite novels, opens today in its film adaptation. Almost every review I read (except for the one in the Plain Dealer), questioned the historicity of the plot and then reduced the complex emotions of Gregory's characters to that of a "bodice-ripper" (that seems to be the phrase en vogue for describing this film).

Is it too much to ask that reviewers READ the novels the books are taken from? Really. I know a ton of movies come out every year that are based on books, so this might be difficult, next to impossible, or impossible. But in the case where the book is a huge hit (It's sold millions of copies), and is based on historical evidence (and Gregory provides a list of sources she used at the end of her book), then I think, in the interest of a good review, you need to at least glance at the book. If you had, then you would know that Anne and George's alleged sexual relationship is, in fact, not just a random plot twist. The homosexual ring around Anne as Queen is not invented for pique. This is Henry VIII we're talking about--truth is better than fiction.

From the reviews I've read, it does seem like the movie takes a few liberties with the book; namely, the girls' mother, Lady Rochester, is nice in the movie, whereas in the book she is just as interested in grabbing power as her husband and uncle. Mary, apparently, does not have a baby boy in the film, whereas in the book, and actuality, she had two children by Henry VIII, Catherine Knoylls and Henry, Lord Hudson, who became one of Queen Elizabeth I's (his cousin) advisors. The omission of Henry from the plot would weaken the hatred Mary feels for Anne later in the story, since Anne's "adoption" of Henry, without Mary's consent, becomes a key point in their relationship.

Oh, and note to reviewers--you're supposed to like Mary. It's not a failure of the plot to make her not as conniving as her sister. That's the whole POINT.

I'm seeing the movie tomorrow, so I can give a better impression then. But seriously, folks, if you're going to get on a movie for not being historical or messing with facts, or throwing ludicrous things in because they would make the story better, it would behoove you to read the book and the source material. Thank you.

Bloggy Book Club: The Christmas Box

Queen of the Castle has a brief summary up, if you haven't read this and want to know what the heck I'm talking about. :)

This is probably one of the first books I read that I counted as a "If the house was burning down, I would save this book." I first read it when I was 12, after having ordered it from our 7th grade book order. It's a thin, little green novella, with the title in raised gold print and a tiny white snowflake underneath. It is also looking a bit dog-eared by now.

Since the book is very short (under 70 pages), I tore through it on the bus ride home. And then I read it again. And again. And then one more time. And then I discovered he'd written more books. So since then, I have read them all: The Timepiece, The Letter, The Locket, the Looking Glass, the Carousel, The Last Promise, The Sunflower, Finding Noel and The Gift.

In short, I'm addicted to this author.

As both Nutmeg and Queen of the Castle say, if you are a parent, this book has a message for you--to cherish your children's childhood. To, as Richard says in one of his books, "wake up one morning and know that [they'll] be gone." But even if you don't have children, this applies to everyone--to stop and savor each moment, because you're not going to get it again. Every minute is so unique and precious and we need to realize that, instead of constantly thinking "oh when will this be over?" or "I can't wait until I'm________" (fill in with whatever you're waiting for).

I read this book every year at Christmas, and his other books all year round. It's simple message is inspiring.

For more on how R. P. Evans wrote the book, I recommend his autobiographical work, The Christmas Box Miracle.

Call Congress

I take steroids. And yes, I can tell when baseball players lie about taking steroids, because you can clearly see they have "moonface" (Steroid related swelling, which so far I have managed to avoid, unless Dr. A really ramps them up, as he likes to do on rare occasion).

However, I have not yet developed Phenomenal Skills with any sort of Sporting Equipment. But that doesn't mean that I haven't enjoyed other particularly wonderful side effects.

Most of really unpleasant ones--losing or growing excess hair, for example--I have not had to deal with. Thank God. And I am actually on a fairly low maintenance dose of 10 mg/day. And it does make my joints super-happy. Pre-transplant, my joints were Highly Cranky all the time. (I was totally perturbed when Vioxx went off the market. That was a Miracle Drug. I would have gladly dealt with potential cardiac complications 30 years from now if I could take the Blessed Yellow Pill that got me through today.) So there is something good about it. But they do make one area of life sadly complicated.

This is Shopping For Clothes. Now, while my face is normal size (I think), my stomach is not. Weight gain there is especially prominent when you take steroids, and it's sort of out-of-proportion with the rest of your body. Some girls can look like they are six or seven months pregnant while taking these.

So shopping for jeans, skirts, hose, etc. becomes very interesting. You can get things over your hips, but they don't buckle/zipper/close in any way. I actually look at hose sizes now, and wonder, Hmmm, do I go by what my crazy stomach's size is, or the size of my legs? Do I want them to be too big or too small?

With jeans, if it fits the waist, the butt is huge. So I feel like I am swimming in my jeans.

Yes, I am glad I weight more than the 85 pounds I clocked in at pre-transplant. But geez, I do miss having a proportinate body.

I'm a colon

You Are a Colon

You are very orderly and fact driven. You aren't concerned much with theories or dreams... only what's true or untrue. You are brilliant and incredibly learned. Anything you know is well researched. You like to make lists and sort through things step by step. You aren't subject to whim or emotions. Your friends see you as a constant source of knowledge and advice. (But they are a little sick of you being right all of the time!) You excel in: Leadership positions You get along best with: The Semi-Colon

What Punctuation Mark Are You?

Cruisin'

A recent Ohio flap has been about the number of handicapped parking placards that are distributed around the state. Complaining about handicapped parking is isn't new--it tends to surface around Thanksgiving and Christmas, when people see (or think they see--an important distinction) the handicapped spots being abused by people who do not "deserve" a placard.

Now the argument has turned from this to deciding that the state distributes too many handicapped placards, i.e., multiple ones for a single person (if multiple people have to drive that person).

Handicapped parking complaints raise my hackles awfully quick. Pre-transplant, I got a placard. I was commuting to school, and Capital's parking situation was (and is) abhorrent. Without that placard I would have been parking in the hinterlands, lugging about 20 pounds of books on my back to my classes. It would not have flown. And I still have the placard. It's good until October of this year (in Ohio they're four year things). To look at me, both pre- and post-transplant, you would not think I "needed" a spot. I'd be one of those young people that the letters to the editor complain about. Well, I wasn't. I had 23% lung function. I needed that spot, damn it. Even after the transplant, there are times when I've been in the hospital and during the recovery period, I've needed to use it.

I hate the looks I got (and still get, if I use it), from people. A note to the general public: STOP IT. The next time I get one of those looks, I swear I'm going to show that person the surgery scars.

A person who is young can very easily have a heart or lung condition that requires the placard. You don't need to be in a wheelchair or have a broken leg, or whatever. I would even say that they should get FEWER looks, because I never had a wheelchair, so it was just me and my beaten-up lungs trudging toward an entrance. It wasn't like I could push myself there.

I don't know where the debate is currently headed, and I know that there are people who misuse the placards. But can we please get over the idea that only people in wheelchairs or on crutches need these placards? It's outdated and untrue.

Oscarzzzzzz.....

I am a movie nut. I think, at last count, I owned somewhere in the neighborhood of 250 DVDs. (This was not helped by the DVD buying binge I went on this weekend. Hey, Dumbo was $12. I couldn't resist.)

But this has not been a Year for Movies--at least Oscar-wise.

I am generally an Oscar nut, dating back to 1998 when I correctly predicted that Shakespeare In Love would win Best Picture over Saving Private Ryan. Since they, I have assiduously watched the Oscar films, read the latest predictions, and lived for Entertainment Weekly's Oscar issue. From 1998-2004 was really a Golden Time for film. As I look at the films that were nominated in that period, we have movies like Life Is Beautiful, Chocolat, Gladiator, the Lord of the Rings movies, A Beautiful Mind, Chicago, Cold Mountain, Mystic River, Seabiscuit, the Incredibles, Finding Neverland, and Finding Nemo. Some really great movies are in that tally.

2005 was a so-so year. We had Little Miss Sunshine and The Queen in the running, but the Big Prize (finally, I suppose) went to Martin Scorcese's The Departed. I am glad he won after years of "Pick me! Pick me!" yelping with lackluster movies like The Aviator and Gangs of New York (which is the only movie I have ever walked out of). At least we're spared his stuff for awhile. (Can you tell I'm not a fan?)

But this year, I have had interest in 2 movies--Juno, which I saw and enjoyed, and Michael Clayton, which is sitting on the DVD-to-watch pile. And, of course, Ratatouille, which just got relegated to the Best Animated Feature pile, when, as the best reviewed movie of the year, it should've been up for Best Picture. I am not alone in that thought.

And it's not just in the Best Picture category. Russell Crowe and Christian Bale should've received nominations for 3:10 to Yuma. Keri Russell was excellent in Waitress. I loved Becoming Jane, but maybe that's just my Jane fanaticism.

I also saw La Vie En Rose, which has a Best Actress nomination going for it.

So, even though I will not be watching tonight (Faith Sharing and the P&P!!! YES!), I am voting for all things Juno and Ratatouille. Oh, and Enchanted in the song category!

Verdict

CXR--clear
lab work--OK
PFTs--"very consistent" (Dr. A)--yes, they are. They are about 60%. I am nothing if not consistent. :)
NiOx--good.

So everything's fine. I am tired as the devil. So what does that mean? Probably a virus. We did another nasal wash so we'll see what comes of that. Meanwhile, we're just trying to hang tight here.

Time with Todd

So I wasn't supposed to go back to clinic until April.
Ha. Ha.
Going in bright and early tomorrow to have more labs, CXR, the whole shebang, so that we can figure out why I have just enough energy to go to work, but then crash at home and sleep like the dead. And don't want to wake up.
This is not good, especially given that Easter is coming and I need to be at rehearsal, not being a zombie on my couch.

Spontaneous mutation-random thoughts

I've been reading about eugenics lately. No, this is not one of my new fields of study, but it has been prominent (or mentioned) in two books I've read, and it got me thinking.

The idea behind eugenics is that you can "breed out" certain undesirable things by controlling how people procreate. That way you could eliminate obvious things, like genetic disease, but you may be able to prevent things like "anti-social behaviors" (excessive violence, alcoholism, etc.) by sterilizing people or passing sterilization laws. This actually happened in the US in the 20s and 30s--almost half the states had some sort of "voluntary" sterilization laws.

Here's the problem. It doesn't work. Genetics aren't something you can breed out, because the genetic code is always changing. Scientists call it "spontaneous mutation." We adapt. (See Jurassic Park. Remember when they made the dinosaurs all girls so they couldn't breed, and then some changed sex? Human genetic code modifies, too.)

My CF is a case of spontaneous mutation. There is no history on either side of the family, and we looked. No one, that we know of, died early or of anything that could have been CF, but was missed back in the day.

What does this have to do with anything? I'm not sure. But it's something I've been thinking about. In one of the books I read (Second Glance, by Jodi Picoult, which was really good), a character is a genetic counselor, and her clients don't want to pass on things like CF and hemophilia to their kids. So they have embryos tested, and Meredith (the counselor), tells them what embryos are good for implantation. (aka, the "normal" ones) You can bet how I feel about this. There's this idea that a life with a genetic disorder isn't worth having. I hope through my writing I've done my best to show that, even though it's not always a picnic, life is a good thing. If we all wanted a perfect, pain-free life, we'd never get out of our cradles.

The Triumph of the bread :)

After one and a half days...voila! La Brioche!

For the initial bread post, go here.

New L&A!

Up over at Clusters of Crocus.

Book Binge Update

Finished:
--The Interior Castle
--Is Heathcliff a Murderer? (It's essays about different novels, so I only read the ones on novels I had read, which made up about 50% the book. The novels I haven't read? Well, I dealt with that...)

Begun:
--Mysteries of Udolpho (two chapters)
--Jane Austen's letters (the first 10, with a few Tom Lefroy mentions...wink, wink)

And, finally, the madness continues:
Bought:

--Wuthering Heights (OUP--yes I'm giving Emily B. another whirl)
--Oliver Twist
--Measure for Measure (OUP Shakespeare)
--Much Ado About Nothing (Pelican Shakespeare)
--As You Like It (Pelican Shakespeare)

Arriving this week:
--Mrs. Beeton's Book of Household Management (OUP--abridged)

Yup, it's official. My name is Emily, and I'm a book addict.

du Pain

Bread is the most satisfying thing for me to make, in any incarnation--corn bread, loaves of bread, biscuits. It's such a basic food, but so vital to out everyday lives. There's a reason the "Our Father" says "Give Us This Day Our Daily Bread."
So this weekend I have taken to indulging my bread making side, and am currently making some brioche (my first try!) courtsey of Barefoot In Paris. You can find the recipe here.

Another favorite is Irish Soda bread (here), which is an easy to make bread (no yeast or rising)--great for St. Patrick's Day! (Also great for breakfast, spread with a nice thick jam.)

Total Book Binge

I am insane for books. As we know. But this weekend has been truly insane.
So far I have read (in total):

--A Year In Provence
--Toujours Provence
--Little House on the Prairie (again)

I am starting right now:

--The Mysteries of Udolpho (the heroine is named Emily! Yay!), of Northanger Abbey fame. (yes, more Jane!)

I am currently reading:
--Searching for Jane Austen (probably more of this tomorrow)
--Confessions
--Orthodoxy
--The Interior Castle

To begin:
--Jane Austen's letters (is it HUGE, and Cassandra even burned some of them. It's amazing.)
--Little Men
--Was Heathcliff a Murderer? And other questions in 19th Century fiction. I got this and Udolpho today via Amazon, and I flipped through this book to see it has essays on Emma, Mansfield Park, Wuthering Heights, Jane Eyre, Portrait of a Lady, and other novels. This looks AWESOME and like a quick read, so I will probably start it tomorrow.

I also went shopping and bought some new work clothes, AND made scones and blondies, with some cleaning and music on the side.
I am very proud of my productivity. :)

New hobby!

I am going to start knitting. Yup. Because I need something else to do.
Actually I was inspired by my friend Christine, who made this little buddy for a friend's baby. I want to make him. Ergo, I have to learn to knit.
So to Jo Ann's I go tomorrow, for supplies and more scrapbook stuff. It's a long weekend for me, and I think it will involve baking, reading, and being crafty. :) And movies, while I'm being crafty. And possibly more writing.

A(nother) Meme

(because it's Friday and I need some fun)

1. WERE YOU NAMED AFTER ANYONE? Auntie Em in the Wizard of Oz. Do Not Laugh. The fact that it is a Seminal Movie In My Life is incidental.
11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? Nope. But only my pumas have laces, anyway.

12. DO YOU THINK YOU ARE STRONG? Yes.

13. WHAT IS YOUR FAVORITE ICE CREAM? Ice cream in ANY incarnation, but I love dark chocolate peppermint that I mix up at Coldstone Creamery. And yes, that's my sugar allocation for about a week.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE? hair/clothes

15. RED OR PINK? Pink.

16. WHAT IS THE LEAST FAVORITE THING YOU LIKE ABOUT YOURSELF? What, I'm not allowed to like everything? (kidding)

17. WHO DO YOU MISS THE MOST? My family, my godbaby (OK yes he's 10, but give me a break)
18. What shoes and bottoms are you wearing now? My blue and pink pj pants and socks.

19. WHAT WAS THE LAST THING YOU ATE? A Buckeye. :)

20. WHAT ARE YOU LISTENING TO RIGHT NOW? Nothin'. But Idina Menzel is in the car.

21. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? blue.

22. FAVORITE SMELLS? things cooking in the over, garlic sizzling in the skillet, roses, flowers in general, the air by the ocean, my Coco Mademoiselle perfum.

23. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? My mom.

24. FAVORITE SPORTS TO WATCH? Football (high school, college, and pro), college b-ball, hockey, and occasionally golf and tennis. And I love the Olympics!

25. HAIR COLOR? blonde.

26. EYE COLOR? blue.

27. DO YOU WEAR CONTACTS? Yup.

28. FAVORITE FOOD? Pasta. Pasta. More pasta.

29. SCARY MOVIES OR HAPPY ENDINGS? To quote Fauna, "I just love happy endings."

30. LAST MOVIE YOU WATCHED? Becoming Jane (bien sur!)

31. WHAT COLOR SHIRT ARE YOU WEARING? pink

32. SUMMER OR WINTER? Summer.

33. HUGS OR KISSES? Hugs.

34. FAVORITE DESSERT? You put chocolate in it, I'll eat it.

35. WHAT BOOK ARE YOU READING NOW? Let's make that books. "A Year in Provence", "Searching for Jane Austen", "Confessions" (St. Augustine), "The Interior Castle", "Orthodoxy"

36. WHAT IS ON YOUR MOUSE PAD? I got myself an iBook, therefore no mouse pad.

37. WHAT DID YOU WATCH ON T.V. LAST NIGHT? Fox News with Brit Hume.

38. FAVORITE SOUNDS? great music. Babies laughing, cooing, whatever. Kids playing in the swimming pool.

39. ROLLING STONES OR BEATLES? I have no opinion.

40. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME? Orlando.

41. DO YOU HAVE A SPECIAL TALENT? Besides being obsessive about movie quotes? (:-)) my music--singing, especially. My piano playing is about par, but I think it's special given that I mostly taught myself. :)

42. WHERE WERE YOU BORN? Columbus, OH.

Happy Valentine's Day!

OK, so even though I have no love life to speak of, I did get Becoming Jane from my parents for V-Day. So that makes me happy. :)

Wow

OK class was awesome. Really. Seriously.
Because the local weather guys are predicting gloom and doom, there were only three of us at class (and one observer). Normally, the receptionist told me, you get a pretty good turnout. I was in the middle, age-wise. One girl looked to be in high school and the other seemed to be in her early 30s.
Julia (our teacher) was great. We started with a quick mat warm -up, then we did barre, which, amazingly, had not totally deserted me. The teacher liked my ronde de jambs (for you non-French people, those are leg circles). So go me. :) After that we did some more stretching (which is important when you're older), and then center work. OK center work was not quite as cool, given my sense of balance is a bit, um, wobbly. BUT I didn't do too bad on some of the combinations that didn't involve balancing on one leg.
I could not believe how hard I worked. I mean, seriously, treadmill has NOTHING on ballet class. I am going to need some new leotards or I'll be doing laundry every day, especially if I take class twice a week. (They offer Ballet Intro M and Th at the Gahanna school, but this Thursday I've got other meetings.)
Anyway, I didn't fall down and I didn't totally embarrass myself. I bought 12 classes, so I have 11 more to go. And after that, I am going to look awesome. :-D Seriously.
I cannot WAIT for my next class.
(Oh, and tx note--I would NEVER have been able to do this class pre-tx. NEVER.)

Spreading the word

Organ donation seems to be getting a lot of press/notice lately. A few things I've seen:
--Two "Donate Life" stickers on cars (if you want one, email me! I have them!)
--the man next to me at the ballet on Friday was wearing a "donate life" wrist band.
--Organ donation was highlighted in a special section of the Dispatch over the weekend. Buckeye football coach Jim Tressel had an event with three athletes who happen to be organ recipients. One of them said that the 98,000 people currently waiting for a donor represent roughly the capacity of Ohio Stadium. So if everyone in the 'shoe on a Saturday watching the Buckeyes was http://www.blogger.com/img/gl.link.gifan organ donor...we might be doing better in the numbers race.
--And my mug has been plastered around Columbus TV and internet sites are part of Lifeline's new awareness campaign. It's an old picture, though. :)

Of course, if you are NOT yet a donor--you know what to do. Or go here.

Tonight, tonight

won't be just any night. (A little West Side Story for your edification)
I am going to my first ballet class in, oh, many, many moons.
I am a bit nervous. I am going to BalletMet's open teen/adult Ballet Intro class. It's taught by honest to God professionals, not the nice "Miss Robin" I had when I took ballet before! So gulp.
I went out on Saturday and bought a leotard, pants (apparently adults can wear dance pants in class) and ballet flats. I was ridiculously excited to purchase those.
Hopefully it goes well, because I am excited. :)

Culture Cat: Lovestruck

Last night I saw BalletMet's Valentine-themed show, "Lovestruck", which was a bunch of different pieces in three acts.
The first act consisted of a few pieces from their "30x30" performances in August, which involved 30 different choreographers creating a 30 different dances over 30 days (1 per choreographer) to kick off BalletMet's 30th Anniversary Season. "Maquillage" (French for Make-up), a woman's ensemble piece, was the "30x30" selection for the first act. This was followed by Adam Hunt's (a BalletMet dancer and budding choreographer's) piece "Bang, Bang (My Baby Shot Me Down)", a pas de deux set to a Nancy Sinatra song, which I thought was quite well-done. "Everyday people", a solo danced by Jeff Wolfe, was next. It's nice to see male solos every once in awhile, and this was was well-executed.

The highlight of the evening for me was the "Sinatra Suite", a pas de deux by Twyla Thwarp that was originally choreographed for Mikhail Baryshnikov and Elaine Kudo. Tonight Jaime Dee and Jimmy Orrante (two of my favorite dancers) danced to this set of five Sinatra numbers, which included "Strangers In The Night", "All The Way", "That's Life", and "My Way." It concludes with another male solo, set to "One for my baby" (I think). Dee and Orrante were pitch-perfect. Both are wonderfully expressive dancers, and this piece gave them the opportunity to showcase those talents, especially in "That's Life". I could watch them all day.

The second act was a world premiere--"A Different Drummer." Well, different certainly applies here. The entire company was involved in this piece, which I think ran about 15-20 minutes, and was based on the poem of the same name by Thoreau. Vastly different in tone and style than the previous pieces, it grew on me as the dance progressed. Carrie West and Jackson Sarver, in particular, were my favorites.

The third act consisted of three pieces: "Two of Us" and "Sweet", pieces from "30x30", which I had seen being created back in August. "Sweet", danced by Annie Mallonee and Justin Gibbs, is one of my favorite pieces in BalletMet's repertoire and I'm always excited to see it performed, especially by these dancers.

The program wrapped with "Bolero", set to music by Ravel, which had Indian undertones. Emily Ramirez, as the solo dancer, did a fantastic job. She was wonderfully captivating. The sensual nature of this number was a perfect fit for the program.

Fighting the sandman...

This whole flu recovery thing, to use some slang, sucks. OK, yes, it's been worse (duh!), but this constant feeling of "I could close my eyes and sack out for about 12 hours right now" is not the most productive thing in the world.

ON the plus side--I did over a mile on the treadmill today (25 minutes) doing intervals. Woohoo! Laura could hardly believe I'd been sick. So that was awesome.

And yes, my boy Mitt is out of the race. :( Tear. There's always '12. (Is it just me, or does that look really funny?)


And Lent is here, hence the Lenten colors...bring it on!

This weekend: Another Culture Cat--the ballet! And Richelle's 25th birthday party at Martini's (one word: YUM).

Work

Back to work today--woohoo! :)

:-D

I am full of schaeudenfreude right now. It's awesome. :)
Go Giants!

Gee, guys, I'm speechless

Nutmeg says I'm



I concur about everyone on my blogroll. So give yourself a button!

The Huge Culture Post

So when you're barred from interacting with humanity for almost a week, you have a lot of time to read, watch, and listen to things. So I give you my massive review round-up (inspired by Amy Welborn).

BOOKS:

--Liberal Fascism: I cannot say enough good things about it. Get thee a copy immediately.
--Wives and Daughters: Still working on this one, but I love Molly and Roger.
--Orthodoxy (still)
--The Interior Castle (again, still)
--The Big Stone Gap series (re-reads)
--Spe Salvi (the Pope's new encyclical)

MOVIES:
--Northanger Abbey (Yes, Jane obsession is in FULL SWING)
--La Vie En Rose: I finished it. I liked Marian Cottilard's portrayal of Edith Piaf, but the film itself I found rather episodic and disjointed. If you are already familiar with her life and career, you will probably find it less disjointed than I did (I knew nothing about her when I started watching it, other than she was a French singer in the 1940s and 50s). But as this movie is in French, and made for a French audience who is (presumably) much more familiar with "The Sparrow's" life and career,
it was not necessary for the filmmakers to give us a truly exhaustive bio-pic.

CDs:
--Idina Menzel, I Stand. I Love her voice, and it's in wonderful form on this new CD. So far "My Own Worst Enemy" is my favorite track.
--Renee Fleming, I Want Magic! (With James Levine and the Metropolitan Opera orchestra): American opera arias (read: it's in English!) with Fleming's glorious voice backed by a phenomenal orchestra.

PSA

A thought--
if you're one of those people who don't get flu shots for WHATEVER reason, can you, please, get them for the rest of humanity? If this week has been any indication for me, the flu without the shot must be infinitely worse than getting it with the shot.
Thank you. :)

YAY!

Over at CF Husband:
Tricia is on a "regular" floor and out of the ICU! HUZZAH! :)

I'm "normal"

Well apparently it's just a normal virus that everyone gets--nothing special for me! So Dr. A says that in a few days it will work itself out.
Whew.

BLAH

So I think I got the bug that's going around--oh the joy. Which means bonding time with Todd tomorrow. Even MORE joy.
But it's Oscar season. And every Oscar season I end up at the Resort. Seriously. So we'll see what happens.

From the Corner--too funny.

Perfect.
From the Derb--

Gas Attack [John Derbyshire]


I dunno, I must be missing a gene or two. Everybody, including even some conservatives, is telling me what a fine uplifting orator Barack Obama is. All I see is great gusts of hot air. When he says something that actually has any semantic content, either it is just false, or else it is naked socialism.

I was just looking through Obama's latest oratorical masterpiece. It strikes me as obnoxious, where it is not just flatulent.

… we've got young people all across this country who have never had a reason to participate until now.

The "reason to participate," for people of any age, is the sense of citizenly duty. This sense didn't exist before Obama showed up?

We're up against the belief that it's all right for lobbyists to dominate our government, that they are just part of the system in Washington.

But lobbyists are part of the system in Washington. It says so in the First Amendment: "… to petition the Government for a redress of grievances." Obama wants to repeal the First Amendment?

We're up against the conventional thinking that says your ability to lead as president comes from longevity in Washington or proximity to the White House.

That's the conventional thinking? So how did Ronald Reagan, Bill Clinton, and George W. Bush get elected President? None of them had any "longevity in Washington" — not even as much as you, Senator. Sure, I understand, this is throwing some of Hillary's stuff back at her, but it's still nonsense.

… real leadership is about … the ability to rally Americans from all walks of life around a common purpose, a higher purpose.

Not just cant, but Leninist cant. We are a republic of free people, not the tools of some "leader" pursuing a historical "purpose." What is your "higher purpose," Senator? And what happens to those of us who decline to rally around it?

… there are people all across this great nation who … can't afford another four years without health care, that can't afford another four years without good schools, that can't afford another four years without decent wages because our leaders couldn't come together and get it done.

A doctor visit costs no more than a name-brand pair of sneakers — less, probably, in relation to average earnings, than ever in our history. Hospital emergency rooms treat anyone. The theory that spending a ton of money gets you "good schools" was tested to destruction in Kansas City, 1985-97. All that KC got out of it was the most bloated and corrupt educational bureaucracy since Imperial China's (and increased dropout rates to boot!) And why should employers pay "decent wages" to Americans, when they can pay in-decent wages to illegal immigrants? — those illegal immigrants whose unlawful presence in our country you are just fine with, Senator?

And where we are met with cynicism and doubt and fear and those who tell us that we can't, we will respond with that timeless creed that sums up the spirit of the American people in three simple words: Yes, we can.

Cynicism towards the kind of vaporous flapdoodle Obama trades in is fully justified, and ought to be encouraged. Doubt that an Obama administration will be able to do any better with the nation's issues than a Clinton, McCain, Romney, or Paul administration, is likewise fully justified, given Obama's lack of executive experience, or of experience in any real job; as is doubt that the things Obama says he wants to do, are desirable. Fear that an Obama administration will just take more of our money to sluice away on bureaucratic extravaganzas, ditto.

The man's a hard-left socialist, for Heaven's sake. Anyone falling for this stuff learned nothing from the later 20th century.

And still...more Jane :)

So I watched Mansfield Park last night. Did you???

Popcorn: Juno

If you've been reading my blogs since the beginning (i.e., college) you know I love the Oscars. Love them. Am sort of obsessed with them. :) And this year, even if there may not be a "show", is no different, so I have begun the annual trek to see all of the nominated pictures, but this year I am also going to try to see all the nominees for the acting awards as well, which makes the list substantially longer.

I have already seen Ratatouille (up for Best Animated Feature), and I am watching La Vie En Rose at home, which has netted Marian Cottilard a nomination for Best Actress. Yesterday I saw my first Best Picture Nominee--Juno--with my parents.

Ellen Page (Hard Candy) stars as Juno MacGuff, a 17 year old Minnesota teenager who gets pregnant after sleeping with her boyfriend, Paulie (Michael Cera). At first, sh visits an abortion clinic, but the attitude of the receptionist, along with running into a classmate protesting outside the clinic, makes her consider adoption. She and her best friend Leah (Olivia Thirlby) scan the papers for parents, finally settling on Vanessa and Mark Loring, a young, wealthy couple. After Juno breaks the news to her parents (JK Simmons and a superb Allison Janney), she and her father go to meet the family and arrange fro an open adoption.

As the pregnancy progresses, Juno spends more time hanging out with Mark and sharing their mutual love of music. She also becomes closer to Vanessa, whose desperation to be a mother touches Juno. She wants a "perfect" family for her baby, but as the film progresses, we see that Mark and Vanessa may not be this family after all.

Ellen Page gives an authentic, nuanced and extremely funny portrayal of a teenager who wants to the do the right thing by her baby but is also trying to be a "normal" high school kid. Oliva Thirlby and Michael Cera hit just the right notes are her bubbly best friend and the somewhat shy, bumbling boyfriend. Page's nomination for best actress is truly deserved.

Director Jason Reitman (Thank You For Smoking) directs another ensemble cast in a quirky take on modern America with an indie guitar soundtrack, unusual cinematography, and a fantastic cast.

One nitpicky note: Mark asks Juno how she got her name, and she says her father named her after Zeus' wife. Zeus' wife is Hera, and they are from Greek mythology. Juno is Jove's wife, in Roman mythology. Yes, a picky English Major note. :)

Bien Sur!

You Are New York

Cosmopolitan and sophisticated, you enjoy the newest in food, art, and culture. You also appreciate a good amount of grit - and very little shocks you. You're competitive, driven, and very likely to succeed. Famous people from New York: Sarah Michelle Gellar, Tupac Shakur, Woody Allen

What American City Are You?

Happy Happies!

Happy birthday to:
--Alex
--Sarah
--Matt

who became one year older today.
Since I promised not to serenade you, you get a virtual shout-out here. :) :)



Alex and Sarah at my August Apples to Apples Tournament.

The iPod meme

Put you iPod on shuffle and write down the first 10 songs that come up:

1) "My White Knight" from The Music Man (Rebecca Luker)
2) "Crusin'" from the movie Duets
3) "Losing My Religion" REM
4) "Mary's Boy Child" Charlotte Church
5) "I'm All Alone" from Spamalot (Tim Curry and Michael McGrath)
6) "On This Night of A Thousand Stars" from Evita (Madonna and Antonio Banderas)
7) "Dear Old Shiz" from Wicked
8) "He Was Despised" from The Messiah
9) "Traditions of Christmas", Mannheim Steamroller (A Fresh Aire Christmas)
10) "Sun and Moon" from Miss Saigon (Lea Salonga and Simon Bowman)

Now, write the meaning/associations (if any) these songs have for you:

1) The first musical we did in high school. And the lyrics fit what I want in a man so perfectly:

My White Knight/ Not a Lancelot/ Nor an angel with wings/ Just someone to love me/ Who is not ashamed of a few nice things/ My white knight/ What my heart would say if it only knew how/ Please, dear Venus/ Show me now./ All I want is a plain man/ All I want is an honest man/ A quiet man, a gentleman/ A straightforwrad and honest man to sit with me/ in a cottage/ somewhere in the state of Iowa/ And I would like him to be/ More interested in me/ than he is in himself/ and more interested in us/ than in me./ And if occasionally he'd ponder/ what makes Shakespeare and Beethoven great/ him I could love till I die./ Him I could love till I die./ My white knight/ not a Lancelot/ nor an angel with wings/ Just someone to love me/ who is not ashamed of a few nice things./ My white knight/ Let me walk with him while the others ride by/ Walk and love him/ Till I die/ Till I die.

2) This is a great driving song. I love to play this one in the summer with my moonroof open. :)

3) LOVE this song. My college boyfriend and I would play it all the time. Still love it.

4)At the 8:00 Christmas Vigil Mass at my parish, the cantor always sings this piece before the Mass. Reminds me of being a kid again.

5)This is just too funny. Saw this musical with Cindy and cracked up the whole time!

6)I went through a massive "Evita" phase where I memorized both discs and got all the lyrics down. This is one of my favorites, when Eva is trying to convince one of her lovers to take her to Buenos Aires.

7) Wicked is my second favorite musical (it is very close on the heels of Phantom), and this is the song that opens the story after the scene-setting "No One Mourns the Wicked." I love the choral harmonies. Reminds me of college and see this with my best friends during my first transplant anniversary trip to Chicago in'06.

8) This is one of the Alto arias from Part II of The Messiah. I absolutely love it; it quotes some of my favorite passages from Isaiah 51-53. It's gorgeous.

9) Reminds me of driving to Midnight Mass with my family, the air crisp and cold and the stars shimmering. We always listen to this CD on the way to Mass, and now I do the same thing, since I drive separately to prepare for the choral pieces ahead of time.

10) I got this CD for my high school graduation and immediately began to memorize it. Kim is a great Alto/Mezzo (although much more Alto) role and I fell in love with the score quickly. This is a wonderful duet from Act I, after Chris and Kim realize they are in love.

I tag--anyone with an iPod. :) So I better see lots of responses!

I Am

I am the baby born in Columbus, Ohio to Carmen and Michele,
Who took me home to Red Coach Lane, where I had a Bambi-themed nursery and scribbled on wall paper.

I am the child who played Little League and princess dress-up and took ballet classes.
Who loved The Wizard of Oz and reading and Barbies.
Who stored art projects in my treasure box
Who dreamed of being a ballerina and never thought she would lock herself in her closet. :)

I am the teenager who sang,
Who wore jeans and sweaters and loved musicals and English class and hated math.
Who skipped class (once!) and then graduated with honors.
Who dreamed of music and knew she would succeed in college.

I am the woman who got engaged (and then not).
Who loves God and my family and my friends (highest priorities in life)
and whose moments of perfect bliss come when hearing good music.
I am the writer who loves writing about ideas and avoids too much filing.

I am the woman who is optimistic and wry and conservative.
I am the person who had a lung transplant and then pulled out all the stops. :)
I am the woman who still loves music and books, but never math.
Who still longs to learn Italian and Latin.
I am the person who dreams of traveling to Europe and writing the Great American Novel and is grateful for every single day
and who hopes to do everything with joy.

As promised

More L&A--installments 19 and 20.
Go here.

Wahoo!

Great news on the tx front--Todd doesn't want to see me for another two months! I don't have to go see them until March. :) :) :)
I am very happy about this. :) :)
And--Pulm Rehab continues apace. Last week Laura started me on interval training, which is awesome, but hard! Today we did a minute for 2.5, then a minute at 3.5, and back and forth for 17 minutes (20 minutes total with the warm-up and cool down). That's longer than we did last week. We're also continuing the weight training (today we did chest lifts, which were cool). So whew.

Book Club: In This House of Brede

It is long-awaited book club day! :)

(If you have written your own response on your blog, leave the address in the comments and I'll post it.)


I love this book (well, no surprise, since I picked it!). It speaks to me on a variety of levels, first being it's a good story about a group of people you wouldn't normally thing to write a story about--cloistered nuns. The novel vividly illustrates the fact that even though they're nuns, they are still human, with all our faults, failings, and petty jealousies that go along with that. The characters of Mother Hester, Dame Veronica, and Sister Julian bring out these qualities in all of the sisters; they are touchstones, so to speak, of their humanity. While everyone loved Mother Hester, she made mistakes. Dame Veronica just aggravates me to no end (I share that with Dame Agnes!).

Sister Cecily is my favorite character. I just adored her--first for her single-minded commitment to God, and, of course, her music. But her evolution as a character is so strong. She goes from her desperate entrance (her desire is to "come in") to the mature Dame we see at the end of the novel. She has realized what she is giving up by being a nun--husband, family, all those things she thought she didn't want, or were secondary to her calling. She finds, instead, that a vocation--any vocation--requires sacrifice.

I do like Phillipa, our protagonist. Her background is a lot like mine (although my job doesn't require nearly the amount of responsibility hers does!). As I was re-reading the novel in preparation for our discussion over Thanksgiving, it was her journey, and her (eventual) openness to whatever she was called to do, that lead me to re-consider my own vocation and begin the inquiry process into becoming a sister (which has led to a vocational retreat next month). She is "of the world" in the beginning. She has known great loss and has closed off part of herself. By the end of the novel, she is open to God's call, even submissive to it, as she never thought she could be. She lives more deeply.

The novel is rich in wonderful incidents and episodes; it's one of those books that could've gone on forever, in a sense. What happened to Phillipa and the Japanese postulants? (Anyone want to write a sequel? :)) Did they ever get back to Brede? The novel carries you along with its wonderful writing and characterizations. Even though there are many characters, Rumer Gooding brings each of them to life, so that you feel you know them and could go talk to them at Brede today.

I also enjoyed the nuns' solidarity with one another, and I think that's portrayed the best in the episode where Phillipa asks the nuns to pray for Penny. The author notes that Dames Maura and Agnes, who are rivals, are in the chapel at the same time, praying for the same thing, together. No matter what the nuns' personal differences (and there are many), they join around the common causes--prayer, life in Christ, and devotion to His church. It is an excellent lesson for all of us.

Big plans. HUGE.

I've got a three day weekend ahead of me. That means BIG PLANS!
Tonight:
--making proscuitto and lamb burgers and chocolate espresso cups, courtesy of Everyday Italian. Giada says it's her movie night menu, so, since it is movie night, I'm making it!

--Movies:
Waitress
3:10 to Yuma
La Vie En Rose
Persuasion (yes, again!)
**What is not watched tonight will be watched tomorrow. Or Sunday. Or Monday!

--Baking! A "Dark and Stormy" Pear Crisp, cookies (perhaps, we'll have to check). If I can find lemon extract I'm making some lemon chocolate cupcakes (Lemon with chocolate icing).

--Working on L&A, so check that blog.

--Reading:
The Agony and the Ecstasy
Liberal Fascism
Orthodoxy
**All of these are AWESOME so far.

--Music practice
--Faith Sharing Group on Sunday night
--THE NEXT JA INSTALLMENT! Northanger Abbey on PBS Sunday at 9:00!

Read it!

Continue to read Nate, Tricia and baby Gwyneth's story over at CF husband...
It's so great!

Updated thought:
Some of the reasons I really like this blog:
1) Nate is great--the kind of man I think every CF girl (or girl, period) would want to marry. :)
2) Their story is life-affirming: They decided to "keep" baby Gwyneth. They chose life. That is truly inspiring. And what a beautiful girl she is!
3) Tricia sounds a lot like me--so I like that. :)
4) It reminds me of what it's like on the "other" side of CF--the side of the people who have to watch. I was in a drug-induced coma (like it sounds like Tricia's in now) to recover from the MAC bug in '01 (there's a post about it in the archives). And it is truly beyond bizarre if you're the one experiencing it. But if you're watching it....wow. Can't imagine. Glad I can't. Because, y'know, I thought I was in California, and that was pretty awesome. :)
5) I love babies. :)

BOOK CLUB!

Book club! Here! Next Monday!

I'm going to adapt the format slightly from last time--instead of mostly having reviews and summaries, I'm going to post my thoughts and then have a few questions. While it is important to have a bit of summary so that those of you who didn't read, but want to know what the book was about, are in the loop, I'd like to see if we can get more discussion going, especially since this book has so many varied and interesting characters--including some that drive you MAD! :) (OK, well at least me)

So get the book. Read it. Link on the sidebar...

Watchin' Jane

Persuasion on PBS right now! And until April....all 6 novels, including THE Pride and Prejudice (COLIN!) and 1997's Emma from A&E.
Andrew Davies, who wrote the P&P screenplay, as well the one for as Bridget Jones's Diary, did the adaptations.
Watch them!

UPDATE: Watching Persuasion, which is a highly excellent adaption (I am totally buying these on DVD. Totally.). It just reminds me even more why I love Anne Elliot as a character. Of course, Lizzie (P&P) is my favorite, but Anne is older, more thoughtful, and so in love in Wentworth but despairs of ever again receiving his attentions. And she has one of my favorite lines in Austen: "The only privilege I claim for my own sex...is that of loving longest...when existence of when hope is gone." Her family neglects and abuses her (except for her sister's husband's family), but she is so steady and lovely.

UPDATE 2: And just to make Anne more perfect in this adaptation, she plays Beethoven's "Moonlight Sonata" as Wenthworth is listening in the doorway. It is the perfect piece to express lost love and melancholy (and was, in fact, written by Beethoven to express just those upon the loss of the Countess Julia, to whom the piece is dedicated).

UPDATE 3: Andrew Davies is the man for writing Jane Austen adaptations. The sense of romantic tension he puts between his characters is amazing. The scene in the rain in the shop between Anne and Wentworth--I totally wanted to see them make out. Totally. (I hear that's coming, though...)

UPDATE 4: Wow this should be really good....Lady Russell just got totally dissed by Anne. :)

UPDATE 5: Not really like the whole Harriet in the street thing, since she's supposed to be an invalid, but I guess we can let that go since this is the entire point upon which the plot turns...and courting Mrs. Clay at the same time!!! GRRR!

UPDATE 6: Ahhh the running through the streets motif.

UPDATE 7: Oooh the note!
Love this: "Are you quite well Miss Elliot?" ANNE: "Thank you. "
What Anne should have said, "Well, buddy, I just ran through London's streets like a madwoman looking for my man...NO I'm not all right!"

UPDATE 8: More running through the streets--market this time....(Man I love Wentworth)

UPDATE 9: AAAHHH! Now he's going in the opposite direction!!!!! So back trough the Market Anne goes (if she doesn't collapse first...)

UPDATE 10: Again: Charles: Anne, is anything the matter? Anne: (panting and about to die) I'm quite well.

UPDATE 11: OK now she's breathing normally again. And his hat's office....and wow he wants her. She is "minded to accept the proposal." Wow. Nice. "Are you quite certain?" "I am. I am determined. I will. And nothing, you may be sure, will ever persuade me otherwise." Oh, kiss time! (OH GET ON WITH IT!!!) Finally! (WAY too short, as usual)

UPDATE 12: Anne and Wentworth in a carriage, her eyes are blindfolded....ahhh, back at the family stomping grounds. Her "wedding present". And a much better kiss. A few of them. And a few more. OK 12 years apart, I'd be doing that too. Dancing on the lawn. Ending titles. :)

Now I am off to re-read Persuasion. Ha! :) First installment: Excellent. :) And only 85 minutes, if that!
Oh, and if you want more on Jane, go here.

CF stair climb in Columbus!

The Winter fundraiser for the CFF/ Columbus CFF is coming up! Here are details:

January 11, 2008

We're off and "Climbing" to new heights for CF research funding in 2008. But we need your help to get the right participants for our upcoming 27th Annual Climb for a Cure fundraiser scheduled for Saturday, February, 23, 2008 at the Rhodes State Office Tower in downtown Columbus. Climbing 40 flights of stairs isn't for everyone....but I'm counting on the fact that YOU know a lot of different people and maybe there are a few that just might take the "VERTICAL" challenge for CF research! Just as important is the fact that these special people know of your commitment to funding CF research and your personal "ASK" is what I am counting on. Here are a few details:

From 8:30 - 11:30 AM on Saturday, February 23, participants can climb the 40+ flights of the Rhodes State Office Building (the tallest building in Central Ohio) as many times as they want. The stairwell closes at 11:30 AM for the commencement of timed events.

All Participants are encouraged to bring additional pledges on the day of the event OR to use the CFF web-site to get on-line donations.

Timed events categories include 4-person relay, Timed single ascent, Heroes Division, and Firefighters Challenge. Relay Teams registration for 4 persons starts at $200.

The Challenge to fund all of the promising research to unlock the many mysteries of CF is upon us. We invest your donations quickly to fund the research that will answer the mystery of CF and help us "Add Tomorrows Everyday."

Registration and fundraising is just a click or phone call away:

Option 1 - Participants Register and pay your $50 Participant fee online at www.cff.org/chapters/central/ohio/ . Online fundraising ideas and capabilities are right at your fingertips!

Option 2 - Call our chapter office at (614) 846-2440 and ask our staff to register you over the phone. We can then note that you'll pay the registration fee by check or cash by event day. However, you will now be able to utilize the web site to fundraise for additional pledges from your family, friends, and other e-mail contacts.

We are busily planning for the food, fun and festivities that await our terrific climbers. We are working towards having many new climbers and appreciate any help that you can give us. Thank you for supporting our life changing mission. Your enthusiasm and dedication to maintaining health for those with CF inspires us to help "add tomorrows everyday" for those with CF.

Please call, e-mail or Morse code me with any questions that you may have. Please e-mail my contact info to any contacts that you may have. We already have Fire Department teams coming from throughout Ohio. We would certainly enjoy having any new fitness enthusiasts take the CF Vertical Challenge!

Best Wishes for 2008!

I am not the world's best stair climber, even 29 months post tx (yes, it is 29 months today! Ha ha!) But if you would like more info, let me know! I know plenty of folks (my dad included) who have done this before, so if it's your thing...

The Great Strides Walk (the BIG CF fundraiser) is coming in May--I will post as I get more info. That one I can probably handle... :)

It's Q&A time!!!

So I've been writing this blog for over two years now, and I've covered a lot of different aspects of transplantation and CF life.
But are there still the Great Unanswered Questions? Things you've just been dying to know?
If so, shoot me an email at capchoirgirl@aim.com and I will answer any and all questions (within family-friendly boundaries, of course!) here.
Or, you can just post something in the comments.

You MUST read this

(Or I'll know and track you down. ha ha)

Seriously.
This blog, and the story it tells, is just amazing.
I want to clone this man--ha ha.
Please pray for this family. They are simply amazing.

A long meme :)

That I was tagged for by Adoro, since I have a cell phone AND an iPod. :)

1. Do you wear a name tag at work? No, but I keep my badge clipped to my keys, since it opens doors. :)
2. What kind of car do you drive? '01 black Honda Civic EX (AKA "Lilo")
3. What do you order when you go to Taco Bell? Chili cheese burritos, baby.
4. Have you ever had a garage sale? Ha! No!
5. What color is your iPod? blue. :)
6. What kind of dog do you have? stuffed ones.
7. What's for dinner tonight? ham and cheese sandwich on asiago peppercorn bread :)
8. What is the last alcoholic beverage you had? hard cider at Fado. Yummy.
9. Stupidest thing you ever did with your cell phone? Lost it. :(
10. Last time you were sick? That's sort of an odd question for this blog, eh??? :)
11. How long is your hair? Below my shoulders.
12. Are you happy right now? Yup.
13. What did you say last? "argh!" (yelling at the TV)
14. Who came over last? My parents on Saturday
15. Do you drink beer? No
16. Have your brothers or sisters ever told you that you were adopted? Nope. Bryan and I told Mel that, though. We also told her that other cities were actually states in their own right.
17. What is your favorite key chain on your keys? My CR bottle opener. :)
18. What did you get for graduation? College? A ruby ring from my parents and a Cap afghan from my siblings. High school--pearls, I think; my Miss Saigon album; lotsa cash; "O, The Places You'll Go!"; my first scrapbook kit.
19. Whats in your pocket? lip balm
20. Who introduced you to Dane Cook? Who?
21. Has someone ever made you a Build-A-Bear? YES! I love them! I have a whole bunch! My favorite is my bear dressed as Dorothy, with Toto, ruby slippers, wig and all!
22. What DVD is in your DVD player? Chronicles of Narnia
23. What's something fun you did today? Read "Miss Spitfire."
24. Who is/was the principal of your high school? Mr. Smith
25. Has your house ever been TP'd? Well, my parents' house. Not my apt. (I imagine that might be tricky)
26.What do you think of when you hear the word "meow"? Catfight. (My friend Branden does this all the time when he thinks us girls are being mean)
27. What are you listening to right now? The OSU game.
28. Drinking? Chocolate milk
29. What is your favorite aisle at Wal-Mart? photo developing.
30. When is your mom's birthday? June 22
31. When is your birthday? April 9
32. What's the area code for your cell phone? Like I"m going to tell you that! :)
33. Where did you buy the shirt you're wearing now? Victoria's Secret--it's a PJ top. (Boys, don't get any ideas!)
34. Is there anything hanging from your rear view mirror? my Yankee Candle car jar.
35. How many states in the US have you been to? Pennsylvania, Maryland, New York, Delaware, New Jersey, Illinois, Indiana, Michigan, Kentucky, Missouri, Tennessee, Georgia, Florida, West Virginia, Virginia. --15 (not counting the home state, all)
36. What kind of milk do you drink? 1%
37. What are you going to do after this? Watch OSU, read magazines/Salt of the Earth and eat my tostitos. :)
38. Who was the last person you went shopping with? Richelle and Christine--OnPaper in the Short North on Saturday.
39. What is your favorite fruit? strawberries
40. What about your favorite dessert? Does it have sugar in it? I'll eat it.
41. What is something you need to go shopping for? Dress pants...storage bins...what is this "Need" coupled with "shopping" ? :-D
42. Do you have the same name as one of your relatives? Nope.
43. What kind of car does one of your siblings drive? '96 Honda Accord (which he and I learned to drive on!)
44. Do you like pickles? Yuppers
45. How about olives? Black ones.
46. What is your favorite kind of gum? I prefer mints or, even better, Altoids cinnamon mints dipped in dark chocolate.
47. What is your favorite kind of juice? Lemonade or Pomegranate
48. Do you have any tan lines? No. I avoid the sun like the plague (ha cliche alert). I don't need skin cancer on top of everything else, and I'm at a higher risk (thank you, immunosuppresants)
49. What hospital were you born in? Old St. Ann's


And I tag...anyone who likes football.

This is great!

The Recovering Dissident Catholic: The Basics: A Post for A Dissident Catholic Friend

ARGH!!!

Mike Huckabee is really, really naive about our health care system.

I"m watching the GOP debate (well, was; now it's Steeler playoff time!) and the last topic before the commercial break was about health care, which I'm just a tiny bity interested in.

Mike Huckabee gave some of the worst answers I have EVER HEARD. First, he says that 80% of health care costs in America are caused by chronic illness, so we should do things to "prevent" these illness.

Well, OK.For things like type II diabetes, what are you going to do? Eliminate all McDonald's? Have exercise squads policing our physical activity? Exactly how are we going to enforce these things?

Second of all, things like CF and MS come under this 80% umbrella. So short of killing people, we can't prevent these, Mike. Sorry. (I bet Ann Romney just LOVED Huckabee's answers throughout this.)

Then he says we need to have a health care system that "prevents visits to the hospital." OK, again, nice idea. But what about those of us who, um, need hospitals? Who sort of live there, but not by our own volition?

I know that there's some substance to what he says (that yes, many of our health care problems,--obesity, etc.--come about by personal choices). But really, everything with cancer or CF or MS or anything genetic, etc. gets ignored by Huckabee. It's classical Protestant "The Lord helps those who help themselves" stuff.

And we all know what I think about that.

My boy Mitt did better. Talked about MA's plan, where you can buy private health insurance. Deductibles went from $300 to $180 a month. If you don't want to buy in, you don't have to. But then you're paying if you get sick.

Oh, and drug companies aren't the devil. Thanks for that, Mitt. :)