Tuesday, May 31, 2005

The Best

Do you know what I adore the most about Ellie?

It's not the way her smile lights up a room and melts my heart.
It's not the way she pats me on the back when she hugs me.
It's not the way she holds my cheeks with her soft little hands, hides her face in my shoulder when she's feeling shy, makes funny noises with her lips, helps "sort" the laundry, or is achieving her developmental milestones at an incredible pace.

No, while I love Ellie's personality with all of my heart, what I adore most of all is her smell. Of course she smells like shampoo after a bath, like her teacher's perfume after school, like garlic after an Italian meal. But underneath it all she still smells like Ellie. And no matter what she's eaten, a few hours later she will have the sweetest smelling mouth in the world. I love to lean in for a kiss and take a big sniff at her sweet, precious mouth. She smells like nothing and no one else in the world. She smells like Ellie.

Monday, May 30, 2005

Boycott Larry the Cable Guy

Tonight I was watching The Comedy Central Roast of Jeff Foxworthy. Larry the Cable Guy was roasting Foxworthy and making fun of his cancelled sitcom. He said that Jeff is an even worse actor than "that waterhead on Life Goes On, Corky." He went on in that vein for a little while, comparing Foxworthy to a "disabled actor," and not in a good way. Even more disturbing, people were laughing and no one seemed to have a problem with this characterization.

If you're so inclined, please tell Larry what you think about him making fun of people with Down syndrome.

Saturday, May 28, 2005

100 pages later

You know what's breaking my heart about this book? Two things:

  1. The image the author keeps evoking of the healthy happy toddler before she gets sick. Somehow the experience and expectation of perfection make the ensuing tragedy far worse. I felt like that. We all expect to have a perfect, healthy child. It never occurred to me that anything would or could be wrong. Remembering the first half of my pregnancy, when my most serious concerns were about eating properly and choosing nursery themes, twists a knife in my heart.
  2. The images of each milestone she reaches. When Kate goes on her first date, Mom finds Dad crying in the kitchen. "I never thought she'd live long enough for me to have this memory," he said. Each milestone is bittersweet not because of a loss of times past but because of a tacit acknowledgement that all is not as it should be, nothing is a given. Adjusted expectations.

Friday, May 27, 2005

My Sister's Keeper

Remember what I said about bookclub? I take it back. If you're a mother who knows mourning, if you're a mother who knows hospitals, don't read this book unless you feel like prodding at the pain, bringing up the thoughts that you stamp stamp stamp down so hard you don't even realize they're there. Don't read it without the Kleenexes and the quiet, empty house. The rest of you - you can read it with that strange fascination with which we all imagine the worst case scenarios in our lives, like imagining your own funeral or the death of your loved ones.

I am over 200 pages along, now, and I have decided that I won't put this one down. I will finish the book, though I don't know if that's a good idea or a bad one. I'm not suggesting that this book is high art, but it does touch on the truth and it awakens the hurt.

Eisbaer wonders about loving her impending second child as much as she loves her first. Everyone smiles patronizingly. Of course you love your children. Parents always love their children.

But that's not true at all, is it?

And even when we do love all of our children, we don't love them all equally or in the same ways.

There's me, and I'm unique because I'm the oldest, the first. There's Grace and she's always striven to be unique, with her hair, her clothes, her nose ring. But then there's Jessica, the green kangaroo, who never strove to be anything - she just was and is. And she could always make my mother's face light up like nothing else on earth, there's no denying it.

Back to the book. I started out crying and thinking that I was Zanne but was given Sara's burden. Then I realized that Zanne and Sara are really the same. And that Sara is doing a really really bad job of it, despite the fact that everyone thinks she is so strong and is doing so well.

And I realized that I am Sara, after all.

Tuesday, May 24, 2005

Dream Job

I want a job where I can work out in the middle of the day. Ride my bicycle in the country mid-morning on a weekday. Be in bed by 10 o'clock every night. Take a month-long vacation in my first year of employment, and spend about 40% of my time away from the office thereafter. (Hey, I'll even take a laptop along and call it a "working vacation!") That daily nap break sounds pretty great too. To top it off, I'll want to make $400,000 per year plus benefits. Throw in all the free shoes I could want, and this is a dream job indeed.

On a related note: In 2000 we all said we believed that Cheney et al were really in charge and GWB was just a figurehead with the right last name. In 2004 we learned that au contraire, George Jr. is a shrewd politician, a brilliant campaigner who feigns ignorance to set the bar low. But really, if that's true, what's up with this?
[T]he White House, which characterized the alert as the most serious since Sept. 11, did not interrupt Bush's bicycle ride at a suburban wildlife research center in nearby Maryland to tell him about it.

Vice President Dick Cheney who was at the White House at the time was quickly evacuated, and Defense Secretary Donald Rumsfeld was told about the incident around the time it happened, his spokesman said, and was ready to make any "necessary decisions."

The Newsweek Fiasco

I'm late to this party, but I'm only just now calm enough to write about it. This whole shitbucket* was something of a straw that broke this camel's back. I only thought I was burned out and cynical before. Even NPR, who I usually trust to report fairly and accurately on controversial news items, jumped on the blame-blame-blame gangpile.

If you haven't already, please check out editor Mark Whitaker's response to the brouhaha. In his interview on NPR he went into even more detail, laying out the timeline by which it was clear that while Defense officials had ample time to review the story (and did so) no one had any problem with what Newsweek published until after the riots started. So now we should decide not to publish news because it might make people mad at us?

Part of what made me so mad was listening to Whitaker's explanation of exactly what happened, then hearing news reports moments later getting the details all wrong and sounding far more sensationalist.

Examining the evidence:
1) Numerous major news organizations publish detainees' reports of Qur'an desecration at Guantanamo Bay.
2) A trustworthy source, who's given reliable information to Newsweek in the past, gives a veteran reporter information that the Pentagon knew about the abuse.
3) Newsweek goes to two senior Pentagon officials to check the veracity of the story. One doesn't comment (tacit acknowledgement?). Another replies and corrects other parts of the piece but doesn't correct anything specifically about the Pentagon report recognizing the abuse.
3) Newsweek publishes a brief report to that effect - about 8 words in a short piece.
4) Rioting ensues. Newsweek is blamed. Administration officials, other news organizations, and The White House blame Newsweek for publishing unfounded reports of Qur'an desecration at Guantanamo Bay.

No! The piece that was so objectionable was not that abuse happened, it was that The Pentagon knew about it. And that's not what people were rioting about, that's not what The White House et al were requesting retractions of. Where's the fury about all the other incorrect shit that has been published? (And I don't for one moment believe that this report was incorrect.) It's only when someone dares to suggest that the U.S. has done something wrong that a hailstorm of bricks falls upon their heads.

Where's the independent media?

Thomas Jefferson: If forced to choose between government without the press and the press without government, I would surely choose the latter.

*Secret Life of Bees reference

Saturday, May 21, 2005


Shortly after 2:00 this morning, the power went out.

I was working out down in the basement and watching Frida. Our basement is as large as the rest of the house. It's mostly finished, but it's a work in progress at the moment. There are tools and 2x4s, equipment and a balance beam, junk and clutter everywhere down there right now. There are several different rooms, but most don't have doors and have wide openings into the large common space where the pool table, elliptical machine, sofas, and TV vie for space with the construction mess.

In the middle of the night, with no electricity, it's dark down there. Very, very dark. I tripped over mops and plungers as I stumbled off the elliptical machine. I knocked into the pool table with my hip before tripping over the balance beam and catching myself with my wrist on the floor. I walked into a wall, and the lights came back on. All the while, I was calling, "Paul, Paul, Paul," like a mewing kitten. I came upstairs to find him sitting in bed, confused. He heard me but wasn't entirely awake.

I finished my workout and the movie, keeping a flashlight within reach at all times. Good movie. Scary basement.

Interesting sidenote. Did you know that Alfred Molina, who played Diego Rivera in Frida, is Bishop Aringarosa in the upcoming film version of The Da Vinci Code? And although he looks like a freaking giant in Frida, he's only 6'2". 2 inches shorter than my Paul! Salma Hayek (Frida) is only 2 inches shorter than me.

Friday, May 20, 2005

Book Club (June)

My book club just finished discussing The Mermaid Chair by Sue Monk Kidd, who wrote The Secret Life of Bees. We were all very angry with selfish, selfish Jessie.

Our next book is My Sister's Keeper: A Novel by Jodi Picoult.
"Kate Fitzgerald has a rare form of leukemia. Her sister, Anna, was conceived to provide a donor match for procedures that become increasingly invasive. At 13, Anna hires a lawyer so that she can sue her parents for the right to make her own decisions about how her body is used when a kidney transplant is planned."

Join us, if you'd like. Discussion date: June 14.

One For You and One for Me

. . . and one for Dicky Dandy

Trot, trot to Boston town
To get a stick of candy-
One for you, one for me,
And one for Dicky Dandy.

Anyone here from Boston?

Wednesday, May 18, 2005

It's Over

My father has realized that the time has come. My grandfather is moving into a nursing home on Friday. Sad tears and joyful hallelujahs.

3 Things Game

Psycho Kitty asked; I must answer:

3 names you go by (that won't give away my
  1. Sarahlynn
  2. Sarah (only men call me this)
  3. Mama (oh, aren't I original!)

3 screennames you've had:
  1. Sarahlynn
  2. Book Addict
  3. Lady Sexy (I was in college. It was a long time ago. I really have no excuse for this.)

3 physical things you like about yourself:
  1. My body did great with childbirth
  2. I'm proportionate
  3. I like my hair, though it could use a good cut

3 physical things you dislike about yourself: (Only 3?!)
  1. Weight
  2. Weight
  3. Post-childbirth hemorrhoids (aren't you glad you asked?)

3 parts of your heritage:
  1. Scots/English
  2. Liberal
  3. Presbyterian (yes! Like Bill Frist!)

3 things you are wearing right now:
  1. Rings from Paul
  2. Glasses
  3. Toenail polish

3 favorite bands / musical artists:
I'm reaching way back to before my life was all toddler tunes and NPR.
  1. Ani Difranco
  2. R.E.M.
  3. Too Short (OK, that's from way, way, way back)

3 favorite songs:
You know, I really suck at listing favorites. I don't even have a favorite color.
  1. Olivia Newton-John - Twist of Fate (When I was 9)
  2. R.E.M. - Drive (When I was 18)
  3. Barenaked Ladies - One Week (When I was 25)

3 things you want in a relationship:
  1. Trust
  2. Laughter
  3. Slow burn

3 physical things about the preferred sex that
appeals to you:
  1. Smell
  2. Skin
  3. Confidence

3 of your favorite hobbies:
  1. Reading and writing
  2. Tivo
  3. Sleeping

3 things you want to do really badly right now:
  1. Get in shape
  2. Travel
  3. Have no debt

3 things that scare you:
  1. Sharks
  2. Spiders
  3. People I love getting hurt

3 of your everyday essentials:
  1. Sleep
  2. Diet Coke
  3. Lotion and chapstick

3 careers you have considered or are
  1. Publishing
  2. Writing
  3. Mom

3 places you want to go on vacation:
  1. Alaska (alas, alas, Alaska)
  2. Yosemite National Park
  3. Great Britain

3 things you want to do before you die:
  1. Ensure that everyone I love is comfortably taken care of
  2. Write fiction and have it published
  3. Raise happy, healthy children

3 ways you are stereotypically a boy:
  1. I'm assertive and direct - skip the chitchat and let's get to work
  2. I direct strong emotion and pain inward
  3. I can belch on cue

3 ways you are stereotypically a chick:
  1. I like to cheep
  2. My mother is a hen
  3. Someday, someone will eat me for dinner

3 celeb crushes:
  1. Kate Jackson from Scarecrow and Mrs. King
  2. Courteney Cox from Family Ties
  3. Orlando Bloom from The Lord of the Rings

3 people to play next:

I'm cheating. These are people who don't blog but should.
  1. My Mom
  2. Lisa
  3. My sisters

But Wait, There's More

Also, Ellie's latest discovery is her sense of self. She's been very into pointing at herself, then pointing at others, and grinning like the Cheshire Cat when we label ourselves appropriately. "Ellie." "Mommy." Etc.

At school, during circle time, the kids take turns getting to stand up with the teacher and held "lead" the activities and songs. "Whose turn is it next? Is it Ellie's turn?" asks the teacher.

Ellie grins and puts her hand to her chest - my turn.

"That's a two-year-old concept!" says Mary the speech therapist.

Tuesday, May 17, 2005

Miracle Child

I never thought this was possible. Most days I don't really believe it. I'm waiting for the other shoe to drop.

1) This morning, at my Bible study end of the year party, the babysitter left early and Ellie and 2-1/2 year old Trevor were left to fend for themselves while their mothers addressed postcards to every member of the church. They played together. Not parallel play - they played together. They rolled a ball back and forth. They fed each other cookies. They climbed over each other.

2) This evening during speech therapy, Ellie had a conversation with her speech therapist. "Mama!" Ellie said when I left to go to my monthly bookclub meeting. She smiled and blew me a kiss. Ellie's speech therapist - let's call her Mary - was trying to get Ellie to say, "Pop bubble."

"Eat," Ellie signed. Paul gave her a cracker. She ate it.

"Bubble pop!" said Mary.

"Eat," signed Ellie after vigorously shaking her head "no." Perhaps I should note that speech therapy falls right during dinner time and Ellie wasn't interested in her afternoon snack this afternoon so it's unsurprising that she might be hungry.

"Are we going to have to stop for some dinner?" Mary asked.

Ellie looked up at her very seriously and signed, "More."

"More what?" asked Mary.

"More Eat," signed Ellie.

3) Paul called me with some news a little later, after he and Ellie had eaten dinner. Ellie just got a new potty and we'd never used it before. She pooped on the potty tonight after dinner. Later, right before her bath, Paul put Ellie on the potty again. She peed. First two tries, two successes on the potty.

Where's that other shoe?

Monday, May 16, 2005


Sunday afternoon, Paul went outside to mow the prairie (our lawn). At first I refused to participate in the mowing of our lawn because Paul really wanted this half acre lot while I wanted a smaller one closer in. And because Paul refused to buy the riding mower from the previous owner (for a mere $400!) instead insisting that mowing the lawn himself would be good exercise. Now, however, I have better reasons for staying inside.

When Paul opened the door to the shed behind the house to get the mower out, a snake fell on his head. He related this to me later and I tried to get him to admit that he jumped around and freaked out a little bit, or at least startled becomingly. "No," he said, "it doesn't really bother me. I'm sure it surprised me the first couple of times it happened to me this year but I'm used to it now. It's just a garden snake."

(!!!) It's OK, I'm told. They don't really live in the shed, they just hang out there. They live under the shed, which happens to also be right under our bedroom window. I am not a nature gal. I would like for my house - and yard! - to be insect, arachnid, rodent, and reptile-free (inquire within for specific exemptions for pets).

Also, there are incredibly large and durable carpenter ants swarming around outside (and occasionally sneaking in through the chinks), giant bumblebees dive-bombing the windows, and I think there are mice in the bedroom wall again. Make yourselves useful, snakes!

Anyway, the house next door is for sale, if you're a herpetologist.

Congratulations Weekend

This weekend we went to Louisville for my sister's graduation. I'd never been to Louisville (for the curious: it's pronounced Lou'-uh-vul). It's a lovely city and not too dissimilar from St. Louis. It's an old, Catholic river town. The city itself is over 500,000 and the metro area is over a million people. Still, despite the huge river bridges, dramatic downtown skyline, and lovely neighborhoods, it feels small and manageable. Probably this is because we were there a week after the Derby.

Now that my youngest sister has 2 Masters degrees, I'm officially the least educated member of my family (with my B.A.). This is humorous because I was the "brainy" one and the one who went to the highest ranked university. It's a surprise to me that I'm not jealous of them; I'm proud of my hyper-achieving kin. I might go back to school someday. I'm not a train-for-a-career type, so I think I'll probably study more liberal arts - someday. Right now, I'm happy. I am jealous of the robes and hoods though. I have a goal of earning my own one day and starting a tradition of an annual family academic dinner where robes and stoles are required.

Anyway, it was a wonderful family weekend and a great graduation, despite being in a rather generic convention center. Ellie loved the ceremony. For the first half, she clapped enthusiastically with the crowd for every award recipient and graduate. Eventually she got tired. Her head would slump against her daddy's chest until the next award was presented, then she'd pop up and clap before falling asleep again. Then she napped heartily though the boring bits. At the end she woke for more clapping and some quiet time playing on the floor. Perfect child.

The speaker was excellent, not least because his address was under 10 minutes long. He opened with a joke:

Q: What's the difference between God and a Social Worker?
A: God doesn't try to be a Social Worker.

then he talked about how far from the truth he finds that characterization of social workers to be, seguing into a discussion of the hubris of claiming to know the mind of God and decrying religious fundamentalism. This was especially significant because Louisville was the site of the recent Justice Sunday event. I don't think anyone in the room missed the connection.

So. We're home and it was a lovely weekend. I hope that yours was too!

Thursday, May 12, 2005


Dear parents of typically developing children,
  1. Please don't feel afraid to talk to us about our children. Just like you, we love our children. Just like you, we love to talk about our children.

  2. But please don't just ask about our children's problems. Think about what you like to talk about with your kids. We're probably not that different.

  3. When you're asking us how our children are doing, please omit the "yet" (e.g. "Is she walking yet?").

  4. Please don't feel sorry for us, and please don't deify us. We're just mothers, just like you. Our kids have some special challenges, but we're dealing with them as best we can, just like you would in our shoes. But our kids' special needs aren't the most important thing about them. First and foremost, they're our beautiful, much-loved children.

One mother of a child with special needs

I had a wonderful talk with a good friend of mine the other day. When Ellie was born, she never asked to hold her. At first I appreciated this. Ellie had a heart defect and we were very worried about her getting sick so I didn't like to let others hold her. After Ellie's heart defect was repaired, I thought that maybe Ellie's Down syndrome made my friend uncomfortable.

Later I learned that she was undergoing painful fertility treatments and dealing with infertility issues. Being around babies made her uncomfortable because it was a constant reminder of her struggle. Her desire not to hold Ellie was nothing about Ellie at all. My friend always wanted to have lots of kids. Others got pregnant so easily, yet still she waited, began the process of pursuing an adoption, and waited some more.

I mentioned something about Ellie's Down syndrome and she was surprised. She doesn't see Down syndrome when she looks at Ellie. She sees a little girl. "9 times out of 10," she said, "I don't even think about that. I just see Ellie."

Oh, that's so nice to hear.

Wednesday, May 11, 2005

After Hours Mother's Day Humor

We were playing Settlers with some friends very early in the morning on Mother's Day (ah, the joys of staying up irresponsibly late, tempered only by the punishment of an adorable little alarm clock that is cribbed in another room and is not equipped with a snooze feature). As the second bottle of wine slowly disappeared, Paul made an inappropriate comment about an available arboreal resource. One of our friends laughed, "I think the Wooster-Dukes* are going to be having some sex tonight!"

Paul, ever at his funniest upon the rare occasions when he's drinking or at church, rejoined with hearty laughter, "No way! It's Mother's Day, not Father's Day!"

So I quipped back, "Christmas, his birthday, Father's Day, what more could man want?"

Hmm. Maybe it was much more hilarious if you were there. And drinking the wine.

*In this case, names changed to protect the guilty.

Parenting Cheatsheet

OK, Sarahlynn, check back here from time to time to remind yourself that everything is a cycle. You're not really experiencing everything for the first time everytime. No, really.
  1. Fussing, clingy, not eating Ellie: check for TEETHING!
  2. Won't sleep at night, won't nap Ellie: Developmental explosion! Learning new things! Look for exciting progress!

In related news, Ellie is getting all 4 of her eye teeth at once. She is such a trooper! She spent the painful moments this afternoon between one dose of Motrin wearing off and the next dose taking effect by morosely pointing at and identifying body parts. This girl knows so much! And she couldn't be any cuter. It's impossible to imagine.

Tuesday, May 10, 2005

Humorous Memories of Pregnancy

I'm starting to get excited about having another child. I want to give myself time to be in better shape first and make sure that I'm really ready and not just experiencing head trauma, so I'm scratching the itch with this new, occasionally recurrent blog series. Now, on to the first installment:

One Sunday, late in my pregnancy, Paul and I went to church. We hadn't been going a lot. Early on, I was so exhausted and loved to sleep waaaay in on Sundays. Later, I was very depressed about Ellie's diagnoses and for some reason just being in church made me want to burst into tears so I continued to sleep in most weeks.

Anyway, we were at church. Naturally, we arrived a little late and tried to slip in from the side. I aimed for an available spot that was in a pew whose entrance was partially obscured by a large stone pillar. I got stuck between the pew and the pillar because my belly was rather larger than I had allowed for. Paul thought this was hilarious.

We finally made it to our seats in time for the first hymn. It was "Come, Labor On." Paul pushed me back down onto the pew. "You sit this one out!" he said. We weren't ready for the baby just yet.

You know, I think he's funniest at church. I guess we should go more often!

Preguntas para Portia

. . . from The Winding Sheet. (Jessica, check her out. I've "known" Portia online for a long, long time. I can't believe it never occured to me to point you two at each other before.)

1) Did you ever think about not having a baby? (And, on a related note, have you read my friend Jessica at Daughter of Opinion?)

2) Do you still game?

3) Are we placing too much emphasis on kids' self esteem? (I couldn't pass up a Christina Hoff Sommers reference.)

4) Winter, Spring, Summer, or Fall?

5) If you came into an income of $100,000/year aside from your job(s), what would change in your life?

Sunday, May 08, 2005

Happy Mother's Day!

Happy Mother's Day to all you mothers out there! A special nod to my own mother who, I've recently learned, pops by here from time to time.

I want to take a moment to thank Paul for an amazing weekend. Two years ago I was pregnant on Mother's Day and we didn't do anything to celebrate. Last year we had a little celebration a week after Mother's Day because Paul's mom was here on Mother's Day and it was sort of her day. This year, Paul set a very high standard to match for next year. And at some point I became a mother. You know, the kind who values things that don't cost any money.

Celebrations started on Friday evening. I'd started dinner (a roast) early in the afternoon. Paul came home from work with an iced chai for me. He took Ellie and Lizzi (the pug) for a long walk, leaving me with my book and my iced chai for half an hour. Then he fed Ellie the roast and ordered a pizza for us.

Saturday we went down to Forest Park for a picnic with my coworkers and their kids. Ellie started running a fever mid-afternoon so we canceled our plans to go to a friend's 30th birthday party and instead had a wonderful, wonderful evening at home eating the roast (now cooked for 2 days and incredibly tender) and playing games with Jessica and her husband. (Thank you for the balloon! It's a big hit.)

Ellie woke up a couple of times during the night, and Paul took care of her both times.

Ellie was much better on Sunday. She and Paul went to Krispy Kreme to bring me doughnuts and a fluffy coffee drink for breakfast. Paul also picked a beautiful bouquet of flowers from our "garden" and put them in a vase on the kitchen table. He and Ellie gave me cards and DVDs. Ellie gave me Lewis Black and Paul gave me A Wrinkle in Time. We went to church and to a reception for our minister, who's moving away this month.

Then we met MyPetRock, Lisa, and Oliver for a picnic at Faust Park. They supplied the food, champagne, and strawberries. It was lovely. After lunch, Paul, Adam, and the babies took off. Lisa and I sat in the park and chatted all afternoon.

When we got thirsty we headed over to the Rocks' house and picked up the rest of the crew. We all went out for dinner, stopped for Bubble Tea, then headed home before anyone dropped from exhaustion.

What a wonderful, wonderful weekend. Now I need a day to recuperate!

Charmed, I'm sure

This one's for Charmed fans.

Today in church an adorable little baby named Piper was baptized. She wore a long, white baptismal gown and looked out at the congregation with bright, curious eyes. After the sacrament, Paul leaned over to me and said, "Now do we bind her powers?"

Hah hah hah hah hah! Witch jokes are funnier in church.

Friday, May 06, 2005

On Your Vocabulary

Hi. When I'm in the room, please try to use people first vocabulary, for example "child with Down syndrome" instead of "Down's baby."

Also, please try very very hard to avoid telling me about "these kids" and what they're like. For example, do not tell me how much you love "these kids" because they're so sweet and cuddly and wait for me to respond like you just said something nice. You didn't. Just for fun, toss the name of another marginalized group in there, like a racial minority for example, and read the sentence again. Offensive, right?

Get this. My child is unique. Being a girl doesn't mean that she'll love to cook. Being white doesn't mean anything about her athletic abilities. And having Down syndrome doesn't mean that she'll be just exactly like every other child with Down syndrome. We like to think that the non-duplicated vast majority of her genes (all of which come from her father and me, by the way) have something to do with who she is too, and that's not to mention the parts of her personality that will develop because of the experience she has and the way she's being raised.

Now go tell all of your friends. Thank you.

Thursday, May 05, 2005

Correlation, Causation, or Coincidence

  • April 2004: We travel to visit my parents. Ellie gets her first cold (it lasts over a month)
  • July 2004: We travel to two family reunions. Ellie gets her second cold (it lasts 2 months)
  • January 2005: Ellie starts school. She's healthy.
  • February 2005: We go to New Orleans. Ellie gets a bad cold.
  • March 2005: We go to Dodge City. Ellie gets a GI bug that lands her in the hospital for rehydration
  • April 2005: We travel to visit Paul's parents. Ellie gets a rash/fever thing that's probably strep throat.
Sure there have been other trips that don't end in illness. But every one of Ellie's illnesses has been proceeded by travel. Often she gets sick while we're still far from home. Hmmm.

Public Service Announcement

Low carb cookies (made for a friend who's on the South Beach Diet but didn't eat them) have much the same effect as sugar free candy. And when they say "excess consumption" they might mean, like 2 cookies. Or maybe 3. Gotta run.

Wednesday, May 04, 2005


Over the last 2 nights I've spent several hours on the phone. I am not a phone person, so being on the phone is a little like work for me. And these were not chatty calls to friends or family; I was talking with two different moms who are preparing for their infants' open heart surgeries. I felt like I needed to be careful of each word I said, because I remember how certain things people said to me when my spiritual wounds were fresh really stuck with me.

I tried to share hope without assuring them that everything will be OK. I hope that everything will be OK, but how can I know? I tried to listen sympathetically and not jump in with my own stories all the time. At the same time, I tried to share Ellie's story to help them know what to expect - I know that I really wanted to hear others' experiences when I was in that dark and scary place. But most of all I wanted to hear that everything was going to be OK. Now, all I can say is that everything is OK for me, for my family. I can't share the (incredibly awesome) survival statistics for this surgery because statistics take on new meaning to mothers of babies with Down syndrome.

As volunteer work goes, this is so easy and I am so glad to do it. It doesn't seem like a burden at all. But it's still draining. Good night.

Tuesday, May 03, 2005

Interview with a – well - with You

Here are your questions:


  1. You wanted to and you didn't. Do you now wish you had?
  2. What do you want for dinner next Wednesday?
  3. Which fictional character would you be, if you could be any fictional character?
  4. What's your least favorite part of being a parent?
  5. When we were in college, what inspired your interest in mentoring young people with developmental disabilities?


  1. If you could wave a wand and get rid of Ellie's Trisomy 21, would you do it?
  2. What is your favorite thing about yourself?
  3. What do you miss most about where you grew up?
  4. What's the monster under your bed?
  5. What's the best book you've ever read?

Princess of Everything (and then some):
First of all, welcome! It's nice to meet you.

  1. What are some of your favorite verses to "Wheels on the Bus?"
  2. You have a tail?
  3. What is the best part about your job?
  4. What's the worst part about living in Texas?
  5. Where have all the cowboys gone?

Zoe (Delany's questions made this harder!):

  1. Why reptiles?
  2. Do you get tired of Dorothy jokes?
  3. As an android, do you have trouble expressing emotions?
  4. You dropped it where?
  5. In what ways might a fish need a bicycle?

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.