Saturday, April 30, 2005

Jolly Jolly Jessica

When we were little, my mom had songs that she'd sing to my sisters and me in the bathtub. She made the songs up around our names: Silly Silly Sarah, Jolly Jolly Jessica, and Giggly Giggly Grace.

I can't find one for Ellie. Any suggestions?

Interview with a Vampire

Questions from the inimitable Trisha:

1. What shall we do with a drunken sailor?

Tie him to the longboat until he's sober! Pull out the plug and wet him all over! Put him in the bilge and make him drink it! Shave his belly with a rusty razor! Put 'im in bed with the Captain's daughter! That's what we do with the drunken sailor!

2. If you could change one thing about yourself this very second, what would that be?

My weight. Seriously. It's not working for world peace, but if I could have the strong, healthy, in-shape body I had 4 years ago, I'd be very, very happy. And I think everything else would magically become better.

3. What are you always doing?

Reading. And eating and sleeping. And making witty little cutting remarks that amuse only me.

4. Did it hurt?

Yes, but only about as much as getting shampoo in my eyes.

5. Would you do it again?

Well, I didn't cut my eyeball with a razor blade on purpose in the first place, so I wouldn't intentionally do it again. But I am still near-sighted and I do still shave my armpits, so the possibility is there. In my defense, I have learned to shave down, rather than up.

The Official Interview Game Rules

1. If you want to participate, leave a comment below saying "interview me."

2. I will respond by asking you five questions - each person's will be different.

3. You will update your journal/blog with the answers to the questions.

4. You will include this explanation and an offer to interview others in the same post.

5. When others comment asking to be interviewed, you will ask them five questions.


Friday, April 29, 2005

Silly Me

I think it's clear that I have an almost unhealthy love for the TiVo. How oh how did I ever watch TV before TiVo? There were commercials! And it was impossible to pause the show for a moment to talk about what just happened, or jump back 7 seconds to hear something that I missed! What hardships.

The other night, Paul and I were watching Law & Order: Special Victim's Unit. Detective Stabler was questioning a witness and had just asked a very interesting question when Detective Benson's phone rang. She stepped aside to answer the phone, and I paused the TiVo.

Paul looked at me questioningly. I started to laugh. I think I paused the show thinking that I'd still be able to hear Benson's phone conversation, then could hit play to catch up on Stabler's interrogation of the witness. But it's also possible that I paused the show so that Detective Benson didn't miss anything important while she was on the phone. Um, maybe I'm watching too much TV in the evenings.

Thursday, April 28, 2005

Not Just a River in Egypt

The woman who led last week's Down syndrome New Parent Support Network training session has a 27-year-old daughter with Down syndrome. After we discussed the states of grieving parents experience upon learning that their babies have Down syndrome, she shared her family's stories of Denial.

Her story was funny, but her husband's story really struck me. He said, "Our daughter is going to be the Helen Keller of Down syndrome."

Ah hah. Click moment. This confirmed what I had been suspecting – I am still in denial. So far, though, Ellie has been cooperating amazingly well. I am going to continue on in my little cocoon of denial until I can't anymore. It's comfortable here and it blunts the hard edges of the world outside.

I figure that either I'll lose the cocoon one little piece at a time, gently and gradually, or else Ellie really will be the Helen Keller of Down syndrome. In that case, it will turn out that I haven't been living in a cocoon of denial, but rather allowing my denial to carry me to a place where I could confidently set high expectations for Ellie, encouraging her to become all that she really can become.

Wednesday, April 27, 2005

Fried Food

There's a child who lives in my house. I'm sure that she's my daughter, because I watched her be born with my own eyes and I wasn't high - I felt every moment of it. And she has little hooks at the corners of her mouth, just like me. She also likes to sneeze in sets of two, just like me.

But she's blond, blond, blond, with the most beautiful blue eyes in the world, while I have gorgeous chestnut brown hair and deep, mysterious brown eyes. (Ahem.)

More importantly, she does not like fried food. Oh, she shares my love of spinach, all things pasta, spicy salsa, and many baked goodies, but she does not like anything fried or pseudo-fried. Baked soy corndogs or french fries do not fool her. She knows fatty fried-like food when she sees it.

After the Friday from hell, my mom and Paul both suggested that I stop for fast food as a treat. It's been too long since I finished Fast Food Nation, so I decided to do it. And even knowing that Ellie doesn't like fried food, I got her a 4-piece order of chicken nuggets. I figured that I'd probably end up eating them myself, which sounded good to me since I hadn't eaten all day. But she was so, so hungry after her long fast. She was fussing for food in the car, so I passed back a nugget. I glanced in the rearview mirror. She seemed to be eating it. She grunted for another one.

By the time we got home, she'd eaten all 4 nuggets. But when I went to take her out of her carseat, I found a neat little pile of all the fried breading. She'd peeled off the unhealthy bits and eaten the white meat. Amazing. I took her inside and fed her a normal lunch that relied heavily upon broccoli and leftover pasta from the previous night's dinner.

So under duress, Ellie will eat fried food, but only after removing the outside. What child is this?

Bubble Pop!

That's what Ellie said to her speech therapist today when the therapist was - guess! - blowing bubbles for Ellie to pop. Clear as day. "Bubble pop!"

"Kids with Down syndrome usually start developing their first single words at 18 months," the speech therapist said. So while most kids like Ellie are learning to say "Dada," Ellie has said more than 30 words and is starting to string them together in ways that make sense. And she has a few signs that she uses consistently.

At the Down syndrome support meeting I attended last weekend, the parents were in agreement: "These kids don't really start using language or signs to communicate feelings like hunger or anything else until they're about 3."

I stayed quiet. I feel guilty, but I am jubilant. Jubilant! Miraculous child, in so many ways.

Monday, April 25, 2005

More on Choosing

Our families had a large part in our decision to have Ellie, though they don't know it. When Paul and I learned that I was pregnant with a baby with Down syndrome, we were so scared. The horrifying, unending enormity of it was daunting. It seemed so much easier to choose to have an abortion.

I knew that I'd feel guilty afterwards. I knew it would be hard to deal with. But it felt to me that occasional pangs of guilt would be easier to bear than a lifetime of taking care of a child with unknown but serious problems. I couldn't envision my baby with Down syndrome, let alone imaging her grown up, or fitting into my dream family, my dream life.

But I could imagine telling my parents, my sisters, my sister-in-law, and my parents-in-law that we'd chosen to terminate this planned and long-awaited pregnancy because the baby had Down syndrome.

They'd be supportive, I thought, but they'd be disappointed, too. They'd feel judgmental, even if they tried to hide it. They – especially Paul's parents – would feel different about me, about us, forever.

Realizing that I would feel ashamed to tell people that I loved and respected that we'd chosen to have an abortion instead of a baby with Down syndrome helped me to realize that abortion would be the wrong decision for me. If I was ashamed of my decision, I needed to look at it longer and harder. I needed to remember what I'd believed from the beginning – that we'd accept the baby that we were given, regardless of her imperfections.

Imagining about what my family would think reminded me of who I am and who I want to be and helped me to make the right decision: the right decision for me and the right decision for my new family.

The decision was almost moot, anyway. Because by the time I knew that I had a decision to make, I could feel Ellie moving and kicking. I was bonded. She was my baby and I already felt so protective of her, even as I was scared of her. This was way before I knew the range of what people with Down syndrome can accomplish. It was certainly before I knew that one day my daughter's developmental therapist would say, "She's a 2 year old trapped in the body of a 1-1/2 year old."

Sunday, April 24, 2005


To the parents of children with Down syndrome who believe that doctors pressure women to terminate when they learn that they are carrying a fetus with Down syndrome:

I do not doubt that this happens, and if it does it is terribly wrong. It is also not pro-choice. Pro-choice means that the woman chooses what happens to her body, her pregnancy. She is not coerced into having a baby or an abortion.

But it seems that you think that doctors are pressuring women to terminate when they bring up the option, and I think you're flat wrong about that.

We all know how hard it is to learn that your baby has Down syndrome. We all know about the grieving and the ugly feelings that we have and don't like to talk about except with each other. I can assure you, having been there, that women who learn that they're carrying a fetus with Down syndrome have these feelings too.

They're scared and depressed. And some of them might do something desperate. If their doctors don't say to them, as my doctor said to me, "I support you with whatever you choose. But if you do decide to terminate, come to me. Although it's against the law to abort in this state at this point in your pregnancy, you still have options and I will work with you to insure that you're taken care of safely. Do not try to arrange something on your own."

If doctors do not offer the option to their patients, some women will seek out dangerous illegal abortions in their fear and desperation that we understand so well, and these women will die. They will die.

I know that choosing to have my baby, rather than having some doctor make that choice for me, has helped me to cope. I chose this. I chose her. I am invested.

But I think we can all remember those first dark days when we felt and thought ugly things. I think we can sympathize with how women must feel when they're experiencing those emotions without the benefit of a baby to hold. I don't think that those women deserve a death sentence for their grief, do you?

Friday, April 22, 2005

Eh? What? What? – Part II

Today, Ellie was scheduled for a sedated Auditory Brainstem Response test at the Ambulatory Procedures Center at St. Louis Children's Hospital.

Ellie got sick on Monday afternoon. On Tuesday I called Children's Hospital – both the Audiology department and the Ambulatory Procedures Center (APC) – to find out if I needed to cancel her appointment. On Wednesday I spoke with Admitting, Audiology, and a nurse from the Procedure Center, who recommended that I have Ellie checked out by her pediatrician just in case. On Thursday we took Ellie to her pediatrician who said that it should be fine to go ahead with the test.

Friday morning, Ellie was not to eat anything after 5:00 am, so no breakfast after she woke up at 7:00. No clear fluids after 8:00 am. We got to the hospital at 9:30 and checked in through admitting. Then we went up to ENT and waited 45 minutes to see a doctor. We saw a resident who had a hard time seeing in Ellie's ears and cleaning out the wax (oh, how she screamed). He asked me several questions about her recent cold and had me sign a waiver explaining that I understood the risks of the anesthesia. "I'll want to talk to an anesthesiologist beforehand," I said. "Of course, I don't understand the risks yet." He impatiently assured me that I would see an anesthesiologist later and could withdraw consent at any time.

We waited in the ENT/Audiology waiting room for another 20 minutes or so until Audiology was ready to send us down to the APC. By the time we got checked into the APC, it was nearly 11:00, time for the test. Ellie's nurse checked her out, listening carefully to her chest and asking lots of questions about her recent cold. "It's going to be delayed," Ellie's nurse told me. "The anesthesiologist is tied up with another case. I'll keep you posted." She brought me warm blankets and a chair to prop my feet on while Ellie took a little nap in my arms.

A nurse practitioner from Anesthesiology came down to see us. She asked lots of questions about Ellie's cold and medical history and listened to her chest carefully. We waited another 2 hours.

At this point it's after 1:00 pm. I have a 1-year-old who has not eaten since dinner the night before and has not had anything to drink since before 8:00 this morning. She's been amazingly good, waiting patiently in the hospital for nearly 4 hours.

The anesthesiologist's resident came down to see us, assuring us that the anesthesiologist herself would be there shortly. He asked several questions about Ellie's medical history and cold and explained some things about the procedure, including the interesting revelation that Ellie might need to be intubated during the procedure.

Finally the anesthesiologist arrived. She commented on how cute Ellie is and talked in a sing-songy voice with overly simplistic explanations (a.k.a. 'baby talk') so I had a hard time telling when she was talking to Ellie and when she was talking to me.

Eventually she mentioned that we were not going to be doing the procedure today. Oh. Fascinating. First: we need to have a letter from Ellie's cardiologist giving permission for her to undergo the general anesthesia. This is the first I've heard of needing to involve Cardiology at all. Ellie had her heart surgery at this same hospital. Her Cardiologist works in the same building we're in. All of Ellie's records are here. I've given Ellie's complete medical history about 10 times this week alone to various doctors and nurses involved with this ABR and nobody mentioned talking to Cardiology. I'm starting to see red. The Cardiology sign-off is especially critical because of Ellie's "residual ASD" (atrial septal defect). WHAT?! I'm going to shelve my astonishment and confusion until I can call Ellie's cardiologist on Monday. As far as I know, she has no "residual" hole in her heart.

Second, and more importantly, there's the recent upper respiratory infection. She can't undergo general anesthesia within 7 days of having a cold, period. What?! And no one from ENT, Audiology, Ellie's pediatrician, the APC nurses, or the Anesthesiology NP or resident mentioned this? Ellie's dehydrated, starving, and has been waiting here for hours for this?

Oh, it gets better. Using very simplistic language, the anesthesiologist explains why she won't put a kid with a cold under. My adult translation is that colds stress the upper respiratory system. General anesthesia has much the same effect. The two stressors combined have an exponential effect and can cause really serious problems. In her sing-songy voice, the Anesthesiologist said, "Undergoing general anesthesia is the ultimate stress test for anybody, but it's especially dangerous for someone so small, and with a cold on top of it - I wouldn't want you to get home tonight, put her to bed, and then when you go to pick her up in the morning find her lying there like this-" She mimed a dead baby.

I thanked her politely for explaining everything and mentioned my frustration with the procedural snafus. It would have been nice to know ahead of time that we couldn't have the sedated ABR within 7 days of a cold. And that we needed a note from Cardiology. Her response was ridiculous, "Maybe you didn't tell the triage nurses that she had a cold? Well, at least you know now so it won't happen to you again." The she offered to have someone get Ellie something to eat and drink "right away."

"What does she eat? Does she take a bottle?" No, thanks. I had my own snacks and juice (in a cup, natch) for Ellie in anticipation of this moment, when I'd hoped that all this hearing stuff would be behind us.

Remind me. Why are we doing this again? What a terrible situation. I don't want to put my child through unnecessary risk just to satisfy the curiosity of her medical team about whether or not she can hear a full range of sounds. But I don't want to cause persistent developmental delays by letting a hearing problem go untreated at this critical age.

And I'm not thrilled about putting Ellie (and me!) through all this drama and stress again any time soon, either. Maybe I'll just request behavioral hearing screenings every 6 months until Ellie finally complies. At least they're risk-free. (She mimed a dead baby!)

Shout it from the Mountaintop!

We have DSL again! In celebration, here is a beautiful picture Paul took of Ellie and me on our recent trip to Wyoming. She was a fantastic traveler, despite getting sick and needing a trip to the local "Insta Care" facility.

Ellie did great with her Nana and Grandpa (Paul's folks). We had a very nice visit, and I enjoyed some rare guilt-free parenting breaks, lying in bed and reading while Ellie's grandparents played with her, each of us thinking that we were getting the better end of the deal. Priceless.

Tangentially related Public Service Announcement for the confused: Yellowstone National Park is in Wyoming. Not Montana, not Idaho – Wyoming. Tiny slivers of the park spill over into neighboring states, but the bulk of the park itself is in Wyoming. We didn't visit the park this trip, but I hope to do so again soon. If you've never been, it's well worth the trip. I promise.

Thursday, April 21, 2005

Clergy Killers

“The title of Lloyd Rediger's book is shocking, but not as much as the behavior described inside its covers. Clergy killers are people who seek to destroy the credibility, reputation, and career of pastors. Certainly, many unhappy separations of pastor and people occur without clergy killers being involved. But Rediger's clinical experience as a pastorial psychotherapist confirms what I have seen happen again and again to friends and acquaintances in the pastorate, especially in the last 20 years.... His knife sometimes cuts close to the bone. If we submit to his surgery now, however, we will be better prepared to deal with the problem of genuinely malicious attacks against pastors.
Everett L. Wilson, Christianity Today

My sister's brain tumor wasn't the first bad thing that happened in my family. The first bad thing started happening a few years earlier. My father is a Presbyterian minister (PCUSA). He felt that he'd accomplished his mission at the church where I grew up and began the search for a new home. He was called to a church in an affluent community near his favorite large city, and would be overseeing a long-awaited building campaign. This would be a pleasant change of pace from the rural community where we'd been living for 11 years.

After we moved to the new town, it became apparent that the pastoral search committee had sugar-coated some things. The church had a serious problem with giving, so the building project was stalled. People would come to Christmas Eve service in their mink coats and leave nothing in the offering tray. They did not tithe and refused to pay the annual per capita fee to the denomination. Worse, the church was deeply divided between the conservative old guard - mostly choir members, who wanted things to go on as they always had, preferably under their control - and the conservative new guard who felt no allegiance to the denomination and wanted to attract newer, younger members with evangelical-style teachings and worship.

My father angered both groups and slowly, over time, they came together in opposition against him. The choir resented being told what to sing. They felt that they should be allowed to sing whatever they wanted, rather than singing hymns, selected by the minister, that accompanied the week's lectionary readings and sermon. They didn't like variety in the worship service. The evangelicals resented the per capita offering and my father's allegiance to the denomination.

They consulted together in secret meetings. They made up lies about my father and the church, printed them on fliers, and passed them out in the parking lot. They secretly contacted the Presbytery Exec and told her lies about my father.

They said that he was a horrible head of staff, forcing out the last two associate ministers by being a terrible boss, when my father is still in touch with his last two associate ministers, who felt pushed out of the church by this conservative congregation's treatment of them as single mothers. They made allegations of financial misconduct, completely unsupported by the records. Meetings were held in secret, no evidence was produced, and no opportunity was provided for parishioners to speak in his defense.

My father ignored it all. He took the high road. He continued working 15 hour days, 6 or 7 days a week. He didn't tattle. He didn't confront. He just did his job the way he'd always done it. He officiated at weddings and funerals. He visited at the hospital and at the homes of sick and homebound members. He was involved in the community.

But eventually it was too much. Things got too ugly. There was - and still is - a deep schism within that church. Many people left when my father was forced out. The church is still not whole, not united, not well. My parents still live in the same community. Every day, they drive past the church as they run errands. They run into former parishioners at the grocery store, the gas station. They can't join the gym because it's too awkward. The woman who orchestrated the uprising lives less than a block from my parents' house.

It must always be cripplingly awful to be rejected by those you've worked hard for, but I think it is somehow worst when it's the church. My dad didn't just lose his job. We all lost our church home. We lost some of the faith we'd had in community. The ministry is more than a full time job for a good pastor, and his whole family is part of the package.

Now my father has a second doctoral degree and a second career that he loves very much. He's also still an ordained minister part-time, well-loved in his current church despite efforts by some of his former parishioners and a very power-hungry church executive who tried to follow him from church to church to keep him from supplying a pulpit anywhere in the area. Even though he never fought back, the fight became very personal for some of these people.

Christians are supposed to be above petty politics in the church. Church leaders are not supposed to be in it for power and glory. If the church is your career as well as your religious home and the center of your involvement in your community, and the church attacks you, where do you go?

It changes your whole life. It changes everything. This was the first bad thing that happened to my family, and in small painful ways every day, it's still happening.

I'm thinking about this tonight because this week my current church is voting to dissolve the pastoral relationship with our current minister, whom I like very much.

Wednesday, April 20, 2005

Pot of Gold

When I trip and fall into a big pot of money, this is what I want to buy:
  • the lot behind my in-laws' house, so that no one can build there, blocking the amazing mountain view from their deck.
  • a red Mustang convertible for my mother-in-law
  • a professional digital camera for my father-in-law
  • all the infertility treatments that my sister-in-law wants
  • pay off my sisters' student loans
  • professional financial advice for my parents, and a bit of something toward their nest egg. And maybe a professional organization consultant and/or housekeeper while I'm at it. Not to mention a great nearby "skilled care facility" for my grandfather.

After getting out of debt, of course. And buying lots of cool things for Ellie from Magic Cabin and Back to Basics Toys. And hiring someone to come watch Ellie sometimes so that I can write, or Paul and I can go out and do fun stuff on our own. And paying for something that Paul needs but won't do for himself. Nudge, nudge, honey.

Friday, April 15, 2005

Where Oh Where Am I?

We should have DSL at home again in less than a week. Tune in for more blogging goodness then! I cannot believe that I have become so reliant upon DSL. I can't bear to spend much time online with the crappy, slow, unreliable, intermittent dial-up access we've had for the past week+.

Ellie had her 18-month checkup yesterday. I am glad that her pediatrician is so awesome, and didn't seem to think that I was nuts because I couldn't stop gushing about how great Ellie's doing and how this is "the best age yet" (as I have said of every age so far).

The other day, Ellie woke up cranky from her afternoon nap. She wanted me to read Brown Bear Brown Bear, What Do You See? aloud over and over and over. She was also hungry and I was trying to throw together a quick soup for dinner, so I left her in the family room and went to the kitchen to cook. She was moving in her unique Ellie way, bringing me the book, when she decided to stop off in front of the fish tank.

She opened the book to the picture of the fish ("Gold fish, gold fish, what do you see?") and started "reading" aloud to the fish in the tank. Isn't that amazing?

Lately, Ellie's also all about:
  • Gimme Five
  • Shake hands?
  • Blowing kisses
  • Kisses and hugs
  • Smiling and laughing
This is the most fun ever.

Sunday, April 10, 2005

Toddler Friends

My daughter is too young to have real friends, despite the fact that her teacher, aides, and therapists all refer to Ellie's classmates as her "friends." Like most 1-year-olds, Ellie is fascinated by other little kids. But at this age, kids are more into what they call "parallel play" than any kind of mutual camaraderie.

Oh yes indeed, this is the easy part.

A little girl from the other toddler class at school recently transferred into Ellie's class. The teacher was making her feel at home by showing her the pictures on the wall of all the other 1-year-olds in the class.

"Ellie! Ellie! Ellie!" the little girl cried excitedly, pointing at Ellie's picture. Swoon.

Someday this will be so hard. Someday Ellie will be in elementary, middle, and high school, and she'll want to be friends with her classmates. Her classmates will not want to be friends with her, because she's different.

Oh sure, they might be nice to her, help her out with a math problem, possibly even invite her to their lunch table once. But she won't be the one they hang out with every Friday night. She won't be at all the sleepovers.

I pray that she won't be the butt of all the jokes.

Pro-Choice Men

Pro-choice men can be creepy. Some of the men who are most vocal about being pro-choice are really just anti-responsibility. They don't want to bother with a condom yet don't want to be called "Dad," either. Or they want to control women's fertility, just like priests and other anti-abortion activist men, but from a different angle.

The best thing for a man to say when questioned about his stance on the abortion issue is:
If I'm ever in that situation, I hope that my wife or girlfriend will talk about it with me. Ultimately, though, it's her decision.

See, I don't care so much about what a man's opinion about abortion is, because I don't think it's an issue that men should be legally involved in at all. Sure it would be nice if all pregnant women talked with their sex partners before aborting or deciding to carry a pregnancy to term. But in the end, that's a courtesy. No matter how much the man does or does not want to have the baby, he's not the one who's pregnant.

  • Her pregnancy does not cause his risk of death to increase significantly.
  • Her pregnancy does not cause him to become incontinent or develop hemorrhoids.
  • Her pregnancy does not change the way he's treated by nearly everyone he encounters.
  • Her pregnancy does not require a hospital stay for him.
  • Her pregnancy does not cause his body to undergo serious and often unpleasant changes that may be irreversible.

Women get pregnant. Women give birth. This is not an egalitarian process.

Friday, April 08, 2005

Bad Mother Dream

In response to my friend Andi, who recently blogged about a terrible and real-seeming dream, I want to share a dream I had this week.

Due to my chronic inability to go to bed at a reasonable time and Ellie's natural ability to rise with the sun, I got something like 3-1/2 hours of sleep the other night and was exhausted the next morning. After I'd been up with Ellie for a couple of hours, I was so tired that I could hardly see straight. She still takes a morning nap most days, so I sat her in her crib with a few toys and books and lay down on my bed.

I told myself that I'd just rest my eyes for a few moments and I'd get Ellie right away if she started crying. I occupied my brain thinking about all the things we could do to pass the day today: when this nap fails, I'll change Ellie's diaper, pack a snack, and head out. We'll drop by Michael's on the way to the church, then after Bible study we'll stop off at the grocery. I hope the list is still in my pocket. It is. Good. Then we'll go home, I'll nurse Ellie, we'll have lunch . . .

10 minutes later, I jolted awake in a panic to silence. Ellie had stopped playing and at some level I noticed. I ran to her room and saw her peacefully asleep. Nirvana! I collapsed on my bed.

I dreamed that I woke up and decided to get a start on my chore list. Ellie was still sleeping peacefully – I checked! – and I decided to try a new grocery store in south county, and to take a bus to get there – how environmentally friendly! While I was shopping – and I really was picking out things from the grocery list in my pocket – I suddenly realized that I'd left Ellie at home asleep in her crib.

I checked my watch. It had been over an hour since I left home! She was sure to be awake by now! And hungry/thirsty/angry/confused at being left in her crib while she screamed. But I was trapped in south county! I had to wait for the bus to take me back home! Misery.

I woke up before Ellie did and didn't try to go back to sleep. That sort of nap is in no way restful. I've got to start getting to bed earlier!

Yeah, right. The next day I had another disturbing and hyper-realistic dream. I dreamt that Ellie learned to crawl and walk in the same day! Now, Ellie is mobile and has been for a long time. But she doesn't really crawl like most kids. She does this very unusual crawl/scoot maneuver that I've never seen another kid do. She wants to walk and loves practicing, but her legs just aren't quite strong enough to hold her yet without some support. In my dream, we were out somewhere fun with lots of other little kids, and she was suddenly able to crawl through the tubes and then a little later, to walk around with the other toddlers. I was so afraid that I was dreaming that I checked myself and asked my friends and was ecstatic to learn that it had really happened. It hadn't, and eventually I woke up.

I think Ellie's making great progress and am thrilled with how well she's doing. Still, it was a little disappointing to wake up and expect Ellie to be able to walk. For about an hour I was confused and trying to remember what was real and what was the dream.

Thursday, April 07, 2005

The Parable of the Lamb

I'm sorry I've been so quiet lately. I've been writing quite a lot, but our ISP has disappeared into the ether, leaving us with no internet connection (and no website or email) for days. We now have a temporary dial up connection, and hope to have DSL within two weeks. Then you'll be able to see all the adorable pictures of Ellie again!

This is another story about my buddy L, the conservative from my Bible study group. Actually, I can't get comfortable with the whole first initial thing, so let's just call her Lexus.

Tuesday we discussed Luke, Chapter 15. The first parable in the chapter is the one about the shepherd who leaves his flock of 99 sheep to search for the 1 that was missing.

"Is it reckless of the shepherd to risk the entire flock to search for one lost sheep? What does this mean to you?" the informal group leader asked us.

"How long are we supposed to search?" asked a mom in the group. "It's heart-breaking to think about losing a child, but if she's missing and never found, how long are we supposed to focus our energy on looking for the lost child rather than caring for the children we have left at home?" Good question.

"The introduction explains that this is a parable about sinners," I said. "It's a lot easier to bear when I think of it as an explanation of how important each of us is (to God) – even if we're sinners - rather than a parent looking for a lost child."

We went around in a circle talking about how we read the parable and what we thought it meant.

"I think it's a constant process," said one tired mom. "You gather up one lost sheep and bring him back into the fold, and then you go in search of the 3 others that slipped off while you were away."

"My version says that the shepherd left the flock "in an open space," said another woman. "That phrase is the key for me – the flock was not in any danger there."

A few more women shared their thoughts. Lexus was last. "It is about economics," she said. "That lost sheep is valuable, and it might reproduce. He's got to protect his investment. Besides, he's surely not working alone. The other shepherds - or at least his dogs - can watch the flock while he searches for the lost sheep.

Well, OK then. I've had it wrong all this time. Jesus was a capitalist.

Tuesday, April 05, 2005

Blogging Beyond the Men's Club

I know, I know. Everyone talks about this. But Steven Levy (I'm now caught up to the current issue of Newsweek!) addresses a different angle. I'm sick of the men who talk to people just like them about what they want to hear, then have the audacity to ask where all the women are. Um, why don't you lift up your head and look around, jackass?

But Newsweek is addressing the idea of inclusion, and it's an interesting topic to explore:
"It has taken 'mainstream media' a very long time to get to [the] point of inclusion," Jenkins wrote. "My fear is that the overwhelmingly white and male American blogosphere ... will return us to a day where the dialogue about issues was a predominantly white-only one."
And all male, too.
The top-down mainstream media have to some degree found the will and the means to administer such care. But is there a way to promote diversity online, given the built-in decentralization of the blog world? Jenkins, whose comment started the discussion, says that any approach is fine—except inaction. "You can't wait for it to just happen," he says. Appropriately enough, the best ideas rely on individual choices. MacKinnon is involved in a project called Global Voices, to highlight bloggers from around the world. And at the Harvard conference, Suitt challenged people to each find 10 bloggers who weren't male, white or English-speaking—and link to them. "Don't you think," she says, "that out of 8 million blogs, there could be 50 new voices worth hearing?" Definitely. Now let's see if the blogosphere can self-organize itself to find them.
I think that this is a great idea.

The only place Levy missteps is when he suggests that female bloggers didn't notice that they are in the vast minority until a black man (Jenkins) pointed out the lack of diversity in the room at a Harvard conference on bloggers. There's no way they didn't notice being the only 2 women in a convention hall. We notice. We always notice. It's part of the charming culture of power and fear in which we live.

Monday, April 04, 2005

Applause for Anna Quindlen

In honor of Women's History Month in March, Quindlen wrote about the UN Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) signed by President Carter in 1980 and never ratified.
Like other international treaties, CEDAW amounts to a bill of rights, rights that may too often be honored in the breach, not so very different from "life, liberty and the pursuit of happiness." We may not need those rights in exactly the same way as women facing honor killings or genital mutilation. But, as we are so quick to note on other fronts, when the United States stands up for a principle it sends a message to the world about how that principle ought to be valued. Yet while America signs off on trade treaties and refugee treaties, it refuses to join the world community in standing up for the rights of women. Today some nations in Africa and Asia far outstrip us in female political representation. Even Iraq, under our tutelage, has written into its Constitution a guarantee that 25 percent of its legislators will be women. By my count, that means someone owes me 11 senators.
Sing it.

Genetics! Where do We Stand As Christians?

I am Presbyterian (PCUSA) rather than Lutheran (ELCA) but I happened upon this amazing article and wanted to share it.

This - this - this is what reformed theology is all about. This is intelligent, thoughtful, moral, caring, and nuanced. This is why I still call myself Christian, even with all of the evil done in the name of Christianity in the world today.

Here are some of my favorite quotes from the article:

Couples like Allen and Sarah fear that their burdens are too great, too ambiguous, or too disagreeable for their friends to bear. They fear that disclosure will weaken their ties with the community of the congregation, and so they hide their situation from the friends who are most important to them.
Oh, yes, we felt like that. Paul and I have received such incredible support from our families, our church, and our friends over the past 2 years. A big thank you to everyone who has been here for us.

Moving on from supporting families, the article discusses genetic testing and screening:
Genetic testing adds increasing pressures to have a "perfectly healthy" baby. If testing is easy, abortion available, and social pressure strong, will that result in social discrimination against even mildly "imperfect" children? To take a specific case, could governmental and charitable dollars disappear for families raising children with Down’s Syndrome? [sic] Will, or should, insurance companies refuse to provide coverage for those with pre-existing "expensive genes?" Such cases of refusal have been reported.
I fear this very much. Please vote to strengthen IDEA and similar legislation whenever possible to avoid turning our society into Gattaca. Please don't use "sped" or "tard" as insults. Please raise your kids to be sensitive to people with differences.

The article goes on to explain why prenatal screening and testing can be useful for other decisions than the decision to terminate, countering the claims of many anti-abortion and disability rights activists that to avoid the above nightmare scenario, prenatal screening and testing should be eliminated:
Dr. Robert Lebel, a medical geneticist writing in an Evangelical Lutheran Church in America (ELCA) publication, notes the following: "We should combat the naive assumption that these testing methods are useful only for identifying pregnancies to be targeted for termination [abortion]. Such an assumption is a grave error because it overlooks the opportunity some families appreciate—to prepare themselves psychologically, financially, spiritually, and socially for the birth of a child with a handicap. In some few instances, it also allows for specific prenatal therapeutic efforts to be undertaken. In severe conditions, with survival impossible, it may provide the basis for "do not resuscitate" plans when delivery occurs."
Oh yes. But another Lutheran thinker quoted in the article, Hans Tiefel, is full of shit:

He asks whether it could ever be loving to abort a seriously ill pre-born, and concludes that it could not. . . . Tiefel recognizes that this view is painful, and possibly cruel for parents of genetically affected children. The medical costs and emotional burdens can seem like more than flesh and blood can bear. Nevertheless, he argues that love may well require this of both parents and the church community.

Easy for him to say. I don't see any evidence that he's ever been in this position, or has kids at all. He's also against stem cell research.

Anyway, this was an incredible article. A big thanks to the Evangelical Lutheran Church in America for publishing such a thoughtful resource for their clergy and lay community.

Friday, April 01, 2005

Child-Directed Play

I wrote this yesterday for Postcards from Holland, "a group blog for families of children with chronic or life-threatening illnesses, or any physical or mental disability, and those that have lost children." But I can't post it there now, not right after Carol's Memories of Holland. I know that my feelings are valid, but they're small potatoes, a phrase which here means that they seem insignificant and petty, next to what she's been through over the past year. *

One of the reasons that infancy is so precious is that it's such a short period of time. There are only a few months when your little bundle of joy is a snuggly round ball of (mostly!) sweet-smelling baby, content to be carried around all day.

By 18 months, kids are so independent. They run around, they talk, they let you know what they want. And the play, the play - it's child-directed. Child-directed play. Walking around. Talking.

I wonder if other parents ever think about how much easier it is when you can occasionally put your child down in the store or outside without sitting her on the filthy floor or ground. I wonder if other parents cherish each time their children run up to them with a toy, saying, "show me!" I don't know, because they all seem to talk about how exhausting it is to have to run after a toddler all the time, listen to her asking "Dat?! Dat?!" (What's that?) over and over, go to the park again and again.

Ellie is 17 months old. She's a great little babbler and mimic, but she doesn't use language (that I can understand) spontaneously on her own much. She doesn't stand unassisted. She doesn't walk. Things could be so much worse. There are so many things that she does do, and does incredibly, unbelievably well. But -

On days when it's just the two of us at home alone all day, like this week when she's had a cold and we haven't done much, it's so exhausting. I'm exhausted by not running after a toddler. I'm exhausted by mommy-directed play, where I entertain, entertain, entertain, and hope that I happen upon what she wants. It's hard work and it's emotionally exhausting.

Infancy was unbelievably precious, yes. And now, ungrateful me, I am ready for the next phase, please.

*(Note the Lemony Snicket reference!)