The Waiting Room

We are now - with Kirin - the only remaining non-Spanish speakers. That zodiac show on Telemundo ended at 7:04. Shows ending at 7:04? Is this a Spanish thing?

I'm going with coffee, for better or worse. Holly's news from 45 minutes ago has buoyed our spirits. You can do it fighter. You can do it.

Another Hour?

Holly says that she thinks it might be another hour.

C'mon Z.

Jen

If you know Jen, you know sometimes, Jen needs to sit. She really didn't want anyone else in the room with us. She just wants to sit and think. It's a lot like Jen in labor. She really doesn't need you whispering in her ear or going through breathing with her. She just needs you to leave her the heck alone.

Kirin just arrived and Jen was updating Kirin. And she just called her dad to update him.

But I'm the perpetual motion person. And Jen, isn't. I tried holding her hand but I'm not a big sitter arounder. Maybe they need to install batting cages here.

Good Girl

They're sewing the shunt in now. It's a piece of Gortex that according to Dr. Tweddell is likely to not be exactly the right size.

The nurse said they had a delayed start. Zoe is doing perfectly great.

Come back to us Zoe.

waiting room anxiety blues

it's cold in here. we're back to telemundo. some game show with different zodiac signs. it's very long. i think the show is an hour. everyone in this waiting room except for one lady speaks spanish. the lady has been here longer than me. the doc just came out and said her son was asking for dad. so dad went in and she's here on the bench.

no sign of anyone yet.

light of the world

Light of the World
by Jennifer Knapp

hold me, light of the world
love me
say you love me
and i will be free

sing me a lullaby soft as you can, i'm alright
i'm alright
sing me the melody strong as you can
i'm alright
i'm alright

hold me, light of the world
love me
say you love me
and i will be free

hold me, light of the world
love me
say you love me
and i will be free
i will be free

Ted Calls

Ted called. He's the guy I mentioned earlier who had emergency eye surgery. He brought some of his loony humor, offering to sell me gutters for my car. It broke my truly uneasy calm.

Jen's been sitting here holding the blanket, mostly quiet.

Come back to us, Zoe.

Just Say The Word

The Faith of the Centurion

5When Jesus had entered Capernaum, a centurion came to him, asking for help. 6"Lord," he said, "my servant lies at home paralyzed and in terrible suffering."

7Jesus said to him, "I will go and heal him."

8The centurion replied, "Lord, I do not deserve to have you come under my roof. But just say the word, and my servant will be healed. 9For I myself am a man under authority, with soldiers under me. I tell this one, 'Go,' and he goes; and that one, 'Come,' and he comes. I say to my servant, 'Do this,' and he does it."

10When Jesus heard this, he was astonished and said to those following him, "I tell you the truth, I have not found anyone in Israel with such great faith. 11I say to you that many will come from the east and the west, and will take their places at the feast with Abraham, Isaac and Jacob in the kingdom of heaven. 12But the subjects of the kingdom will be thrown outside, into the darkness, where there will be weeping and gnashing of teeth."

13Then Jesus said to the centurion, "Go! It will be done just as you believed it would." And his servant was healed at that very hour.

i have to admit

i am not sure i can do this. i'm just about ready to break down. please be ok zoe. i pray that God is just holding her in His palm and rewarding all of her stubborn fighting.

The Last Five Minutes

are being sent to NASA and the Atomic Clock people and Guinness as the slowest five minutes ever. I have no idea what to do with myself and no idea how i'm supposed to make it through 18 more five minute periods like the last.

Then again, I hope it's a great hour and a half, and then Holly comes and says Zoe is ok.

A kid is out in the hallway in a crib gurney. His family is going out to meet him and he is calling and talking to them. And now I'm crying a little.

Another surgeon in to talk to a family. It went well for them.

What They're Doing

The surgery being performed is called the Blalock-Taussig shunt procedure.

Cut'n'pasting from Wikidocuments:

The original procedure was named for Alfred Blalock, surgeon, Baltimore, (1899–1964) and Helen B. Taussig, cardiologist, Baltimore/Boston, (1898–1986) who, along with Blalock's African American laboratory technician Vivien Thomas (1910–1985), developed the procedure. Taussig, who treated hundreds of infants and children with this disorder, had observed that children with a cyanotic heart defect and a patent ductus arteriosus (PDA) lived longer than those without the PDA. It therefore seemed to her that a shunt which mimicked the function of a PDA might relieve the tetralogy patients' poor oxygenation. In 1943, having broached the possibility of a surgical solution to Dr. Robert Gross of Boston without success, Dr. Taussig approached Blalock and Thomas in their Hopkins laboratory in 1943.

According to the account of the original consultation between the three provided in Vivien Thomas' 1985 autobiography Partners of the Heart, Taussig carefully described the anomaly of Tetralogy of Fallot, but made no suggestion about the specific surgical correction required, observing merely that it should be possible to get more blood to the lungs, "as a plumber changes pipes around."

Although Dr. Taussig was not aware of it at that time, Blalock and Thomas had already experimented with such an anastomosis, one that Blalock had conceived years earlier for a different purpose but which had the unanticipated effect of re-routing blood to the lungs. The operation involved the joining of the subclavian artery to the pulmonary artery.

After meeting with Taussig, the two men set about perfecting the operation in the animal lab, with Thomas performing the subclavian-to-pulmonary anastomosis alone in some 200 laboratory dogs, then adapting the instruments for the first human surgery from those used on the experimental animals and coaching Blalock through the first 100 operations on infants.

The procedure is featured in a movie called Something The Lord Made, starring Mos Def and Alan Rickman. Rickman was the bad guy in "Robin Hood." "AND CANCEL CHRISTMAS!"

Telemundo Mystery Solved

More than half of the people in here are speaking Spanish. I heard someone say "como" which I know to be a Spanish word meaning something.

We've moved Blogger central to a different wall. Jen and I were both surprised that a mural of dolphins and fish and stuff was painted on the wall behind us. We would have failed some observational test.

Holly Back To Say

They are about ready to get started. Her lines are in and they have had no problems. She said she'll be back 6:30 or 7ish.

We/they were worried about getting Z under...so far, that's not an issue.

Might have to plug this computer in somewhere. Jen still hugging Zoe's blanket and me trying to fill this time up with something.

Come back to us, Zoe.

Keep praying...

Aim At Heaven

From C.S. Lewis:

Hope is one of the Theological virtues. This means that a continual looking forward to the eternal world is not (as some modern people think) a form of escapism or wishful thinking, but one of the things a Christian is meant to do. It does not mean that we are to leave the present world as it is. If you read history you will find that the Christians of the Roman Emnpire, the great men who built up the Middle Ages, the English Evangelicals who abolished the Slave Trade, all left their mark on Earth, precisely because their minds were occupied with Heaven.

It is since Christians have largely ceased to think of the other world that they have become so ineffective in this. Aim at Heaven and you will get earth "thrown in": aim at earth and you will get neither. It seems a strange rule, but something like it can be seen at work in other matters.

The Door Opens

And you look over and hope no one is there. Too early for good news. This guy in surgical garb is telling a family that things went perfectly.

Surgery Day Random Thought 3

I was walking through Children's yesterday and I heard...around the corner...a familiar sound. A rattle of a tin that I know intimately.

Eclipse mints.

The nurse turned the corner and she even had the appropriate flavor of Eclipse mints, the mints that are my crack/heroin. Someone quick write the people at Eclipse mints and have them sponsor the blog.

I've got my tin right here. It's the mint I swear by. Eclipse Mints. Winterfrost. Have two in my mouth right now.

A Quiet Waiting Room

Jen and I sitting on a bench. There's a guy texting who doesn't know he can turn the beep sound with every keystroke off. Someone turned the tv from Telemundo to Oprah.

Please come back to us, Zoe.

The Concern

For surgery has always been putting Zoe under and bringing her back. The anesthesiologist said that she the configuration of her face will be challenging - her jaw is recessed somewhat - and that she may be on a breathing tube after surgery.

Thank you so much for looking after us...all of you. I'm not sure what people like me do in situations like this, so I've taken to texting.

The Next Door

Waiting Room at Children's Hospital Wisconsin. Tired people waiting anxiously. The People's Court is on the TV. I am not making this up. Holly - a nurse I think I remember from yesterday - says she'll meet us here at 5.

Wait it's not People's Court. It's Caso Cerrado on Telemundo.

Come Back To Me

Met the anesthesiologist and then after twenty minutes they took her. And I told her to come back to me.

On The Surgical Floor

Nurse Deb says maybe 20 minutes at the most in this purgatory. She's back on oxygen and pissed. I have to admit i think i missed a class or something. no idea why we're here.

Down To Surgery

We carried her but the bed went with her. waiting for the doctor.

Still Waiting

Zoe is back to crabby. Too long...this is the longest amount of time she's gone without food in her life. Not fond of this. Still waiting for surgery.

SHH

For the first time since we arrived, Zoe isn't crying. She's looking at her hand and sucking on her fingers. Thank you for praying her through.

DNR

We talked to the nurse to confirm that we're not going to hold the medical people to a DNR we created and signed when Zoe was 3 days old. We are just making sure. At this point, we want everyone to do everything they can until further notice.

How She Got This Far

Zoe is fuming. Hungry. Stupid oxygen. Stupid Nuk the stupid nurse gave her. She's swinging, flushed. That's how she got this far. Stubborn fighter.

Random Thought 2

Zoe's wrapped up in a quilty blanket thing Aliisa Klahn made for her. Very cozy. Talk about being wrapped and bathed in all your love.

Pink Baby

Zoe on oxygen - pulse/ox 94. Pink and pissed off. She is trying to pull the oxygen thing off of her face. She finally just relaxed a little but can't believe that a) no one is feeding her and b) people are insisting on the oxygen thing.

Surgery Day Random Thought 1

Walked into the little presurgery room and Shrek II was playing on the screen. Did you know the guy who directed the first and came up with the stories for all Shreks is Andrew Adamson, the director of the Chronicles of Narnia movies? And that his parents are missionaries? Yep. See? We're all going to learn today

About An Hour

Dr. Frommelt dropped by to ask if we have any questions. We're kind of frozen on that one. Zoe's a little crabby so Jen's singing to her. Frommelt checked and said they hope to be operating in about an hour.

At The Hospital

Zoe's not doing great. It is God's way of telling us this is absolutely the only option. We're here and in the preoperative surgical clinic and they're taking pulse/ox - 63.

Got a text from Your Favorite Baseball Player and his family. Even more well wishes from all of you and I'm so humbled.

Many of you know how I celebrate Thanksgiving. I make thank you cards and give them to everyone I can. It makes more sense to me than a Christmas card. I am so grateful. I can't tell you. I don't understand you. I will try so hard to get something to all of you, but there's so many. Too many. What can I say?

Pray

It's ON...

No Phone call from the doc...meaning we're on for 2 pm.

Last night was a tough one for Zoe. She was very blue and fidgety. Just couldn't get comfortable. She didn't sleep much. This morning we gave her oxygen and we're trying to get her to relax.

We need this surgery. I feel different today. It's time for this. And we go in, we go in blessed, with all of you praying. We go in confident, with all of your hearts thinking of Zoe.

Whom then shall I fear?

Since You're Praying...

Toss one up for my dad. He was diagnosed in 2001 with a rare form of cancer, and some days, it gets the best of him. Today is one of those days.

Daybefore Blog II

Just had a very good meeting with Martha and Elliot in the pre-op clinic and Dr. Tweddell. Some interesting notes:

1. In the strange world we live in - one where certain words can't be said at work- Martha said that we are blessed to have Dr. Tweddell. And Elliot says that this is in God's hands. I know. FIRE THEM!

2. Children's Hospital is under such an enormous bed crunch that surgery might not happen at all. Every morning at 6:30, there's a meeting and the doctors decide who gets help and who doesn't. If we don't get help tomorrow, we'll have to reschedule but Dr. Tweddell's December is very booked. So turn your prayers to that.

3. It's likely we'll just rescind the DNR and let them treat Zoe like she's a kid.

4. Elliott and we had a great discussion about my thoughts on Trisomy 18. He says that he keeps encountering situations where medicine has given grave prognostications that weren't accurate. He just isn't sure if this is one of them. He did agree that because the sample of live Trisomy 18 babies is "thinned," it's tough to truly theorize on mortality or treatment.

5. At the end of our conversation, we got a call. Aidan (Superman above) ran into the corner of a table and is getting a few stitches. The fun never ends.

All in all, stitches and snow aside, this day is going well. I truly hope we have surgery tomorrow. Blood oxygenization was lower than usual - less than 70 - when they checked.

Daybefore Blog

The snow was thick and wet and slowed everyone down. My cellphone alarm somehow didn't get us going. But we're here, in the waiting room and Zoe's snoozing.

I'm seeing four little darling kids in this waiting room. One in his surgical robe sprinting away from his dad. What are they doing Thanksgiving?

Ted Update

Ted must be reading the blog because he commented back. I was told he would be lying face down, so I have visions of some special computer configuration. My mind wanders. Could he be wheeled around on a dolly with one of those masks like Hannibal Lector? I think even if the doctor doesn't require it, it'd be a cool way to be moved around.

thanks for the prayers Greg
I met with the surgeon yesterday and he said things went well during the surgery and that my eye is healing well, I have an air bubble in my eye and have to keep my head down for three weeks to ensure that the retina heals properly then another week upright. Anyway thanks again for the thoughts and prayers. And no matter what happens, I still believe we have all been incredibly blessed by God. I hope the move goes well. Talk to you soon,

Ted

what's coming

In a few hours i'll wake up and we'll take zoe through what the weathermen predict to be 1-2 inches of snow to Children's Hospital. We'll meet with the surgical team, the anesthesiologist, Zoe will get tests, and we'll have to revise our DNR to reflect our wishes for Zoe and this surgery.

Then, early in the morning on Tuesday, we'll go in for Zoe's surgery. We're told it will take around 3 hours.

I've run the gamut of emotions this weekend. Fear - I can't think past Tuesday to the rest of the week. Bargaining - why can't someone who has proven over and over again to fail like me take her place?

I'm so grateful to all of you for staying on for the ride. I'll keep you posted through the coming hours as to what's coming.

Hennessey Sets The World Record

Michael Hennessey has done it. Today at about 8:30 CST he crossed the finish line with his traditional two-step and now owns the world record for most Ironman finishes in a year.

I am so proud of Michael for his dedication and care for kids - one of whom is snoring behind me. I pray that God blesses Zoe with his physical determination in the coming 48 hours.

A Different Theory Part II

Sorry about the delay on the video below. We had...some issues. But it is up and available for you to view. Something I wrote and created along with Longhair, Nightman, St. Beneficencia, Mandi and Katefunk. It received a standing ovation at the F. Dohmen Company's 150 year Anniversary Celebration.

FYI...What I do. I write and think of video for people and companies, and then shoot and oversee the shooting and post production.

Tuesday

I've received a bunch of well-meaning, thoughtful questions about Wednesday, Thanksgiving, meals, rides. Will I need help moving? About where people will be or stay. For me right now, there are no days past Tuesday. I dread its approach. I need it to come.

She's Not Just Anyone

This song wrecked me today. I guess I've stayed clear of emotions and inner thoughts for weeks for a host of reasons. But you're going to get what's running through me for the next days.

He's My Son
by Mark Schultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Can You see him?
Please don't leave him
He's my son

Pray For Ted

Iain's dad and my brother at work, Ted, was rushed to the hospital today for emergency surgery on his eye. Ted is out of surgery and will be lying on his stomach for a number of weeks while he recuperates.

I don't know much more but please pray for our friend and brother, who has been a light to many.

A Different Theory

Here's something I worked on with a host of people for the F. Dohmen Company Foundation. It features some magical shots, Josh's music and Selah's voice!

Chapter 40

So I drove up to my landlord's mailbox and put our notice into an envelope. "You ready?," I asked my oldest three kids, "ready for the next chapter?"

It's here. We've given notice and we're moving back to Cedarburg. God has found a place for us back where we used to live, closer to our support network, closer to my work. Closer to the blondie girls' school. Closer to the waterfalls and the five candies for a dollar store.

The trick will be moving while there's a heart surgery planned on the 25th of November. If God gives us Zoe past that date, it might likely be the big kids and me pulling it off. We can get into our new home on December 15.

Chapter 40. I never guessed that 39 would change like it did. I never saw it all coming.

Eyes On Things Above

"2Set your minds on things above, not on earthly things" - Colossians 3:2

Well, HELLLOOO!

Hi everyone.

Lightyears of time and space have transpired since I've written here free of the weight of some major projects at work.

So much has happened. I'll try my hardest to catch you all up.

Firstly, as I near the holiday, I want to thank all of you for your love, support, prayers. Thank you for thinking of me and asking after me.

God has been so good to me and this family.

I'll give you a quick Zoe update:

Name: Zoe
AKA: Zoe Bean
Weight 9 lbs, 9 ounces
Height: 24 inches

Likes: light, late nights, attention, her dad and her mom
Dislikes: darkness, daytime, cold, Kellen

Favorite words: goo, agoo, and sometimes, Dada

Eats: a special blend of formulas (Alimentum and A Lactose-Free sensitive), rice cereal, some apple juice

Late Night At Avicom

It's 11:55.
Last night I left at 11:30.
I don't think I'm leaving tonight.
Too much to do, too much riding on this. We're attempting to make a feature-length production in six weeks. Someone has to pay and it's been the few souls at Avicom.

I'm trying not to think of the Blalock-Taussig Shunt Placement on November 25, of the upcoming changes to our home and location. Just this job, due in 39 hours. A huge task before us.

Ted's Son Iain

On October 27th - my birthday - my friend Ted (featured in this interview on the blog) and his wife gave birth to their son, Iain.

Please read the above interview and then you'll understand why I am welled with emotion sharing this news. I'm so happy for Ted and his family. I'm so happy that God has been so good to them.

Lots of News

Hi everyone...I can't spill the news officially yet, but it appears we'll be doing a lot of things in the upcoming weeks beyond praying and hoping for our Zoe. As soon as everything is finalized, I'll let you know about another HUGE change about to hit our family.

Just keep us in your prayers..

November 25

Surgery has been set for Baby Z on November 25th. As mentioned before, we chose the shunt surgery and will be meeting with Zoe's doctor preoperatively on the 24th.

The days are flying by, everyone! The above is a post I didn't think I'd ever write. NOVEMBER 25TH. As in 8 months after she's born.

Pray for Zoe and the doctor and whatever this gift you and I have been given - to watch God fostering and securing a life beyond the experts' expectations.

Pray for Marcia

My friend Marcia wrote me today to announce that her baby, Makayla, was born on October 21. Makayla wasn't alive when she was born.

Pray for Marcia, who has some peace with her daughter being called home, but wonders if her daughter is at peace.

Pray because if you never face what Marcia faced or faces, you'll be blissfully ignorant. Sometimes there isn't a place in your heart for all the pain and questions.

I wish I could give Marcia a hug and I wish she could hold the life given me these 227 days. I am grateful to all of you for helping me hold her. I am humbled, I am confused why I am blessed to listen to a baby's cry and Marcia seeks peace in the stillness of each night.

A Vampire Sees The Light

As my big sister says, God's a funny guy. And He will do what He will do. In your life, in Zoe's life, and in Anne Rice's life.

Ignorance The World Around

In Australia, they're not that welcoming if you have an extra chromosome. Too much work. Too much money.

MORE OPRAH GOODNESS

FROM THE TRISOMY 18 GUYS:

Oprah Show Features Eliot’s Story
and Raises Awareness of Trisomy 18!


BREAKING NEWS: Trisomy 18 and Eliot's parents on Oprah Show again!
Tune into Friday's show.

On October 28th, in a show featuring Miracle Children with Celine Dion, Oprah shares the incredible story of Eliot Mooney, the precious baby son of Matt and Ginny Mooney of Arkansas and the 99 days of life they treasured with him.

We're thrilled to see Oprah share the story of Trisomy 18 as lived by a family in our Community with her vast audiences around the world. Today's segment will reach many millions that will be inspired to learn more about Trisomy 18 for the first time and how they can help the families we work for everyday here at the Foundation. Oprah's viewers will have access to learn more about Trisomy 18 and many families' stories at trisomy18.org/eliot.

Miss Me? Everyone Does

Sorry guys...I miss talking to you all. I wish I could explain how insane this work life is. So much is riding on me, and I'm working long long stressful hours and not seeing anyone at my home for days and days.

Can't wait to see you again.

Surgery

Jen and I have decided to have the doctors at Children's Hospital - Wisconsin perform the shunt surgery. It's the surgery that does not stop the heart, and when we told the Doctor Frommelt of our choice she lauded it. We're now waiting on when the surgery would take place, but it's time to get this done. Zoe's color isn't great and it's time to help her.

Please pray with us and for us and for Zoe.

Oprah Features A Trisomy 18 Family!

On October 28th, in a show featuring Miracle Children with Celine Dion, Oprah shares the incredible story of Eliot Mooney, the precious baby son of Matt and Ginny Mooney of Arkansas and the 99 days of life they treasured with him.

We're thrilled to see Oprah share the story of Trisomy 18 as lived by a family in our Community with her vast audiences around the world. Today's segment will reach many millions that will be inspired to learn more about Trisomy 18 for the first time and how they can help the families we work for everyday here at the Foundation. Oprah's viewers will have access to learn more about Trisomy 18 and many families' stories at trisomy18.org/eliot.

Things I Forgot To Share With You Part III

Elise, Kid 5, turned 7 on the 7th. Her golden birthday. We had a really fun time by going to what has kind of become a Batiansila family birthday haunt - the Mineshaft. It's good pizza and a pretty good deal so kids can shove tokens into machines and then get tickets and then trade them for fake teeth, little plastic rings, stuff like that. Believe me, a good time.

Elise has a penchant for sometimes being completely silent - mute almost. You can ask her a question and she'll kinda stare at you without much to say. This is largely because she suffers from the older sibling syndrome - where your older sib will act as your agent. Ask a younger kid his/her name, and the older kid will leap on scene: "Her name is Elise!," answering any question you got for her. "She doesn't like melted cheese!" "She's just tired!"

But when Elise gets wound up, she's as loopy a kid as there is. Loud, even. And she dances and can't stop turning cartwheels. This is what I see when I see her playing with her two younger brothers, this giddy, effervescent kid.

Elise was born just a few weeks after 9/11. I remember being so scared then, scared of what was to come. Scared for the life she'd have. Her presence in my life and in the life of her family - particularly her little brothers - has been about joy, and a smile with big eyes. And cartwheels.

Things I Forgot To Share With You Part II: Renee's Golden Birthday X 2

I think it goes gold for the Golden Birthday, Glass for the 2x Golden Birthday, and then some kind of nuclear isotope for the 3x.

Renee's at glass.

Renee's the kind of person who is proof positive that when you find yourself and find the person you were made for, you've found a pretty blessed life. She's raising a tribe of strong, gifted boys in Wausau, Wisconsin and growing old with her lifepartner , Jim. Ok, they're married, but they are life partners, right?

Happy Glass Birthday, Renee. As C.S. Lewis said, "You are never too old to set another goal or to dream a new dream. "

Things I Forgot To Share With You Part I: Charis Turns 30

Charis turned 30 on the 21st of October. She's the youngest of my family, which means...my family is kind of old. How did we get so old?

Not like Charis is. She's had the great advantage of watching all of her older siblings screw up and stumble, learn what she can, know what to avoid or sidestep, and end up with a pretty cool life.

Charis has two kids - Kalla and Payton - and a loving husband, Bryan. They are living anyone's dream life just outside Milwaukee and are in the process of building their house.

I stumbled across the 30 mark in my life, but Charis is showing how a faithful life lived wisely is a life of blessing and peace.

The Zoe Effect

So yesterday I got an voicemail from Michael Hennessey, the gentleman who is trying to set the world record for competing in the most Ironman competitions. He calls me and I call him and I owe him a call.

I know him because of Zoe. She's changed it all, connecting a guy in Milwaukee with a guy in San Antonio. (P.S. We have 14 kids between the two of us - another weird connection)

Here's another example of the Zoe effect, an email from the Batiansila Family Patron Saint, Mark Natzke: "So on your blog, Barb read about a family that had reached out to Robbie Seay that needed help. It was a huge family that took in foster children and orphans and lost everything in the hurricane.

Barb's efforts allowed her to donate 4 boxes of clothes and $200 in Wal Mart gift cards.

Zoe wins another one..."

Happy Birthday, Brother

Yesterday my brother turned 33. I can't think of a time when we both seemed so old and so young at the same time. We have nothing in common and sometimes, too much.

He's on the precipice of having baby 2. I just had baby 8. He's having problems going to sleep. I'm having problems being allowed to sleep. His sleeplessness involves physical struggles and a sleep study...mine involves a 9 lb, 9 ounce ball of pepper named Zoe.

Andreas is wearing a sleeve around his elbow as a part of his sleep study. He says it has lights and stuff on it, which he says makes him look like a robot. I asked if he used it as a line to seduce his wife. He said he already tried. No dice.

I guess I would have thought the robot line would have been golden.

For a few minutes of talking loopy and at least one joke about flatulence, it was good to have him near. Men are solitary figures, sometimes by choice. Brothers and best friends are the closest you can get to feeling someone near.

Heavenly

On Saturday evening, a few of my friends held a benefit for Zoe at a ridiculously beautiful house in Milwaukee.

The house was like the night which was like my life. You think you had it sized up, and then you turn a corner, and realize there's another room, not like any of the previous rooms you've seen. And it was decorated in a different style than the others. And populated by different people.

So while Josh played from one room, I met people I would never have met who before this event never had heard of Trisomy 18. And, some ridiculously open-hearted people who I see all the time, giving of themselves all night to make sure all of the activities went well.

I have to admit I didn't walk through the room where all the different items were shown for silent auction. I'm not quite at a point of peace and humility with the goodness of God or my friends. But I was surprised and pleased to find people wanted to talk about Zoe and Trisomy and our battle.

Zoe was all dressed up and made it through most of the night. She likes lights, and there were so many different lights and candles, no matter what room. I'm sure it was heavenly for her.

And for me. A disparate group of people joined together in one place because of one person, one cause. Some of the kindest, most outgoing love I've ever seen or experienced being exhibited from the hearts of so many people.

God has been telling me that He will show me what He can do. In Zoe, in my life, in events like this. I think we think of God in terms of lightning bolts and thunder. But God's more of an artist than that.

Day 210

Zoe is lying on the bed looking at her hands. We had a long night, but the days look like this. Zoe awake, pretty at ease.

I haven't seen her much the past days, outside of hearing her snore as I'm leaving in the morning.

Tonight a bunch of friends are doing another remarkable thing for Zoe - an incredible auction at an amazing house. I'm humbled and amazed. I know my friend Mipps wrote in his evite that Zoe would be at the event. It scared me a little because we just haven't talked like that. After 30 weeks of life, can we now? Could I tell you she'll have her first Thanksgiving or Christmas?

Thanks to you all for your wonderful supportive comments. Ironman wrote to tell me to hold out my hand while sinking and call out for the Master's help. With friends like all of you who have reached out hands of kindness, care and even prayer and financial support, I see so many hand extended, all in love.

After The Last Tear Falls
by Andrew Peterson

After the last tear falls
After the last secret's told
After the last bullet tears through flesh and bone
After the last child starves
And the last girl walks the boulevard
After the last year that's just too hard

There is love
Love, love, love
There is love
Love, love, love
There is love

After the last disgrace
After the last lie to save some face
After the last brutal jab from a poison tongue
After the last dirty politician
After the last meal down at the mission
After the last lonely night in prison

There is love
Love, love, love
There is love
Love, love, love
There is love

And in the end, the end is
Oceans and oceans
Of love and love again
We'll see how the tears that have fallen
Were caught in the palms
Of the Giver of love and the Lover of all
And we'll look back on these tears as old tales

'Cause after the last plan fails
After the last siren wails
After the last young husband sails off to join the war
After the last "this marriage is over"
After the last young girl's innocence is stolen
After the last years of silence that won't let a heart open

There is love
Love, love, love
There is love

And in the end, the end is
Oceans and oceans
Of love and love again
We'll see how the tears that have fallen
Were caught in the palms
Of the Giver of love and the Lover of all
And we'll look back on these tears as old tales

'Cause after the last tear falls
There is love

quality of life

I'm not sure whether I should write this chronologically, because that's not how anything occurs to you at 3:41 am.

But if I did I'd start by writing that I was talking to a friend two nights ago and telling him the gist (that's all Jen will share) of Zoe's former pediatrician's enthused words to Jen. That Jen's quality of life and the other 7 kids' quality of life and my quality of life and Zoe's quality of life all suffer as we try our hardest to extend Zoe's life.

And my friend told me that he's pretty sure that's what everyone thinks.

It stuck in my craw a little and made me want to fight my way out of that corner. So I did and told him that I doubt anyone can willfully let a plant die in their house, let alone a puppy, let alone a baby who smiles and coos and sometimes talks to her hands. And no one has given us an expiration date of our daughter. No one knows if its tomorrow, 3 years, 3 months, or 3 minutes.

But the response has stuck with me like the perfect counterpunch in a fight, especially now. It stings. Maybe everyone thinks that.

Right now, at 3:41, I am less full of fight and more full of questions and tears and doubt. Did I do this all wrong? What if everyone is thinking how I did this wrong. And your thoughts are of pity and camaraderie, but rarely empathy.

Would you have had an eighth kid? Probably not, even if you felt like God was telling you to. And would you have taken the signs I did to mean God was telling you anything? What if Zoe was more a manifestation of my will instead of God's?

Quality of life. Zoe's last seven nights have been horrid. She cries and wails and we don't know what to do. We'd ask our pediatrician but - yeah. Yeah our pediatrician may or may not give us the advice Zoe needs. Depends who you ask.

Jen's convinced the last nights have been because Zoe's heart is getting worse and we need to make a decision. She says we need to talk more about that.

Which would mean talking. Which we do, off and on, but mostly about heart surgery and bills. But maybe Dr. So and So was right. Quality of life of the marriage? Of Jen, or me, who are sleepless beyond anything we can express? Can we really keep doing this for another six months? A year or two? At 3:41 - now 3:50 - I don't know.

We ran out of water. And Zoe can't have tap water so it's 2 something and I have to get to Walmart. And all of these questions - my friend's comments - Dr. So and So's quality of life argument - it's a flurry of blows to the head, to the body. It's resonating now that I feel angrily unprepared to feed my daughter, let alone rule on her health. I don't know.

I'm working 12 and 15 and sometimes more hours at work through an incredibly demanding season. Hoping they'll accept whatever I give them with whatever sleep I'm given. Not exactly the quality of life my work's expecting.

Quality of life, when you factor in the current bills and a heart surgery and school tuitions and gasoline and feeding the tribe. Last night I laid into Izzi and Kellen about doing their chores and told them so what if you don't want to do them? In the real world, no one gives a - care. No one cares if you don't want to do something. That's not life.

Or maybe it's not mine. Maybe you're looking in and reading this and still kinda shaking your head about our nonsensical position - fight for extra days with someone who may or may not have extra days. Is this brave?

3:59. I still don't have answers. But my alarm will go off in two hours, and it doesn't give a - care. No one cares if you don't want to do something. That's not life.

A Really Cool Event For You. For Zoe.

Mark, patron saint of the Greg Batiansila family, has set up an event this weekend that you might like. It's at a really incredible mansion/house with A TON of very cool things to bid on- like restaurant gift certificates, jewelry, bottles of fine wine, a cooking class, an overnight stay at Chula Vista waterpark, a Lexus jacket, an Ipod shuffle, an autographed Michael Buble' CD and prize pack, a house cleaning by the Maids and a gift basket/certificate to Halloween Express...plus some other late additions that will knock your socks off.

Here's his invite:

Host: Mark Natzke
Location: The home of Andy Nunemaker
2239 N Terrace Drive, Milwaukee, WI 53202 US

When: Saturday, October 18, 7:00PM
Phone: 414 405 7895

My best friend Greg Batiansila and his wife Jen had their daughter Zoe on March 22 and she was diagnosed with Trisomy 18 three days later.

Despite having been given only a few days to live, she is still fighting for life on a daily basis and has beaten all odds by making it this far. She's provided joy and hope to numerous friends and family members who have met her.

She has also touched people around the globe who have read about her short yet impactful life on Greg's blog http://batiansila.blogspot.com/. Because of mounting medical bills and Jen being out of work to care for Zoe, the Batiansilas are struggling financially.

Right now they need our help and ultimately they want to establish a fund or scholarship in Zoe's name to help other families affected by this disorder. We are inviting you to come celebrate Zoe's life and to help raise money for this wonderful family.

For only $30 per person, we will provide food and drinks in an amazing house that a good friend is allowing us to use for this special event. We will also have a silent auction featuring some very cool items (bid on the chance to be a Packers QB for a game - just kidding) that are still being gathered and catalogued.

If possible I'll update the list on Evite or on http://zoemeanslifefor.us every few days. If you work for or know of anyone who would be willing to donate an item to this auction, please contact me and I'll email you the donation form.

Please join us for a night of celebration as we raise a toast to Zoe and gather for a good fall party. Mark, Mandi, Erika, Andrea and Ron

Ironman Interview

I'm pretty sure you have to hear Ironman talking to understand how truly dedicated, and how truly insane he is. I mean that in the nicest way possible. Ironman can't stop thinking about his quest. There is no doubt that he has been given a calling by God.

Here's a really cool interview with Ironman.

Zoe's Got Something To Say

Last Saturday was an incredible display of the chaos that is our life. Jen worked. Kellen had to be at the game. Teia had to go to work, then wanted to go to the game. Kellen needed a flower for the dance. Izzi and Kellen needed money from their bank accounts.

Izzi was having 6 people over to eat Homecoming dinner. I was making prime rib for them. I had my little sis Charis coming over to monitor the dinner so I could leave with Jen, who was doing some intense cleaning, to go to high school to pick up Teia and Kellen so we could get Kellen's flower and take him to meet his date so that we could then go to see Matthew West.

A friend of mine knows Matthew and had offered some meet and greet passes to the show. Yeah, it was busy, but...Matthew West! It was what caused Teia to decide to forgo her senior homecoming and go.

So, we're trying to set a landspeed record on Highway 83, trying to get to the concert.

And we got there late. 12 minutes late.

And the guy said we were too late to meet Matthew West.

Which made me just stop and want to cry. Our day had begun at 5:30 that morning and almost everything had been done almost well. Everyone had gotten where they needed to go pretty close to on time. The food was done and the table set. We just missed the part where we met Matthew West.

So I sank into a chair at the show and started to go to my sad sad place. Matthew West came onstage and played some warm up music for us. He asked us if we were having a bad day. A bad week. A bad year. I really started to cry. The song he played next was one of several he has about living in grace. About yesterday being history. About how our story of grace is being formed as we live today. It was the perfect antidote to the poison in my soul.

The title track from his album talks about our lives of grace giving us something to say, and that we all have something to say. Unintentionally, Matthew had stumbled across a Trisomy anthem whose words would trump any medical professional with a anti-life attitude.

If you're living, if you're breathing...you've got something to say.

Oh, and after the concert, we got to corner Matthew and he met my oldest daughter, who picked him over homecoming, and my youngest daughter, who picked to live another day and keep telling her story.

Something To Say

Wake up, 7:32 AM
Can’t believe it’s time to do it over again
Yesterday, it took all that you had
And you’re wonderin’ if you’ll ever get it back
But the whole wide world is waiting for
Waiting for you to step out that door
Come on and let your life be heard today

You got something to say
If you’re livin’, if you’re breathin’
You got something to say
And you know if your heart is beatin’
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say

Listen up, I got a question here
Would anybody miss you if you disappeared?
Well your life is the song that you sing
And the whole wide world is listening
Well the answer to the question is
You were created, your life is a gift and
The lights are shining on you today, ‘cause

You got something to say
If you’re livin’, if you’re breathin’
You got something to say
And you know if your heart is beatin’
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say

And the world is listening now
And the lights are shining down
Shining down on you today, ‘cause
You got something to say

So just say it

Ironman Speaketh

Continue to pray for Michael Hennessey in his quest to break the world's record for most Ironman races completed in a year. His knee is painful, but he's slowly trying to get himself back to competing.

Here, he speaks about the progress of his quest on another blog.

The It Factor

Jen spent a good amount of time at the pediatrician yesterday, getting an earful about quality of life. Jen won't share the details of the conversation with me because she knows I'll be knocking on this particular Cedarburg pediatrician's door, but Jen describes the conversation with words like "terrible," "awful," and "disgusting."

Apparently the conversation was elevated beyond conversation to the point where the pediatrician pensively, emotionally repeated herself, like she was involved in some kind of fight. It talked about Zoe's quality of life and Jen's quality of life and the quality of life of my family.

Moral debates happen. I'd love to get in one about life. But with your doctor? At the doctor's office? About my family? About Jen's quality of life?

For this particular doctor, Zoe has a death sentence. She has the "it" factor. Just like what happened on "The View" yesterday. Commentator Liz Trotta had a comment about Governor Palin's boy, Trig: "the image of dragging that handicapped infant around and having IT on stage has caused consternation in some quarters as to how tasteful this is"

Putting the best possible construction on Ms. Trotta's statements, it's likely it was a mishandled article. Or, she's single and never been around kids, and the kid is closer to a puppy than a human.

There. I tried.

But honestly, I wonder if Trig's an it. Not quite human because he's not like you and me. Zoe, too, according to the pediatrician. What is her quality of life? She's never going to ride a bike. Heck, she's- I mean it's - probably not going to live.

And if I've misquoted the pediatrician from Cedarburg, I welcome said pediatrician a wide open forum here. Perhaps here is a better forum for your condescension than in your clinic.

Zoe's Appointment

Jen and I met with the doctor today and were given the two options we had hoped for: two different kinds of surgery.

One is to essentially add a man-made blood passage for Zoe's heart called a shunt. It's a surgery highlighted in the movie "Something The Lord Made."

The shunt is a beating heart surgery that will take less out of Zoe to perform. It's not a perfect surgery - being manmade, it might push too much blood through. Medicine might be needed and the surgery isn't permanent.

The other surgery is the open heart surgery we discussed last November before Zoe was born. It requires a stopped heart and a heart/lung machine. It's obviously more invasive, more intense with a longer, harder recovery. Once completed, Zoe wouldn't need heart surgery for her Tetralogy any more.

Jen and I will have to make a decision by month's end and then, after a review of her other organs and body functions and some meetings, it sounds like they'll operate.

Dr. Frommelt will not be performing the surgery, but has offered to be present while it's taking place to act as a conduit to what's going on. There will be many moments of concern, whatever direction we choose. The surgeon who has offered to do the surgery realizes the high risk involved and will perform it nonetheless.

One big concern to Dr. Frommelt is Zoe's thickened heart. At this time, medicine doesn't know much about what triggers a thickened heart. It can be a side effect of Trisomy. One of the side effects of thickened heart is sudden death, which happens with no warning. Sometimes people who have the condition die before it is known that they have a thickened heart.

So there you have it: a lot to pray about. A decision to make. A thickened heart. A surgeon willing to try. A little girl who is alive today because of God's will and your prayers.

Playing Life Hurt

Kellen asked me a few days ago if I thought it was alright if he tried playing the JV game on Tuesday. He's limping but if he wants to try and play, I say go for it.

This is life. We play hurt. I'm sitting in a shoot and thinking of the appointment I just had with Zoe's heart doctor and I wish I had a few moments to think my way through it.

Your Favorite Baseball Player Chris Sampson signed over a hundred autographs with a full cast on his arm to raise money for Zoe Means Life.

Ironman's knee is painful. He'll just keep running those marathons and riding the 100 plus miles and swimming over 2 miles.

Zoe...well Zoe's doing more than surviving. She's breathing and eating and begging for affection. Playing. Smiling. A remarkable, beautiful life growing in - in spite of - this broken world. We play hurt. This is life.

Homecoming 2008

It's homecoming tonight, and there's a pretty big hustle and bustle as we get ready. Izzi and Michael are eating their meal here with several friends. Kellen's limp is keeping him from playing today (although it is getting better and he's shooting for a return on Tuesday). Teia is forgoing the dance altogether - she got a better offer.

From her dad.

I was offered four meet and greet tickets to Matthew West tonight. For those of you who don't know who Matthew West is...you could argue effectively that he saved my life a few times over the past years. And I know he has lifted Teia's spirits and helped bring her to peace in Christ through some of our trials.

So, we're going to be cooking/cleaning/playing/putting on corsages/getting corsages put on/bobbing in the crowd/introducing Matthew West to Zoe. And then home for the bonfire.

Zoe Says Hi. Pray For Me

So Monday is the big appointment with Dr. Frommelt, some other surgeon, and us. We are praying for some kind of news, although we are figuring that it might be one of those meetings where we're told something less than what we want or thought. I'm leaving it at that because I don't want anyone...like say a Doctor...to think that I've spoken dismissively or added any commentary.

So pray for Zoe. And us. Big meeting.

Want A Signed Picture Of Your Favorite Baseball Player?

Down in Houston, Your Favorite Baseball Player Chris Sampson is signing 8"x10'' pictures of himself to help support Zoe. He's asking that people interested donate 20.00 to Zoe's foundation.

I guess I hope that if any of you want to support an athlete that is doing something good with the celebrity God has given him...and if you want your kid to have a picture of a athlete walking the walk, maybe you'd want one.

If you're interested, you can let me know through a comment on this blog.

SMIIIILE (picture taken by Teia)

The Strength To Keep Going

Matt Bryant did what he could. I know the feeling.

I think Matt wishes he was a geneticist or some kind of faith healer instead of a guy who kicks a ball. I think it's close to me right now, sitting and trying my hardest to think of what kind of video I'm going to make tomorrow.

Isn't there something I can do? God has seen it fit to wear out all my mind, all my spirit on work. Probably because if I didn't, I'd be doing what I do the other few waking minutes I get: cry and beg God for my girl's life.

It was some field goals. And I make some videos. But it was his gift. I think, on Matt's behalf, I think we both hope that the gift is good enough.

Your Favorite Baseball Player

Your Favorite Baseball Player, Chris Sampson of the Houston Astros, continues to show his heart of giving and service. Here's a link to an article at MLB.com about his plan.

I still struggle with the love and care people show to us. But I'm convinced I can't stop people who are being guided by God to do His work. I can only be a grateful recipient who wishes you all knew how wonderful it is to be lifted by God's hand.

What To Pray For

A new friend asked me what I'm praying for and I confessed what I've kind of confessed to you all - praying for complete healing for my daughter is so hard for me.

I think Zoe has been about me absolutely submitting my will to God's, absolutely seeking His will.

Much like when the phone rang tonight at 7:49. A coach from Kellen's school, Living Word, called to tell me that Kellen had a bad injury. He said Kellen was refusing to get into the ambulance. I talked to Kellen. He said he wanted me to come and get him. I spoke to the Fire Department representative and he said he was pretty sure Kellen had broken his leg.

My thought process: 1) guilt (should have been there) 2) I can do nothing to protect my children 3) not his leg. please. not his leg.

I drove my car onto the field and they helped me carry my giant son into the car. Guess where our next stop was?

Children's Hospital Wisconsin.

I wish I could explain to you how tied up into knots I get going by the EXIT to Children's. But, there we were, pulling up to the emergency room.

Almost 5 hours later, after X-Rays, we were heading back out to the car. Bad contusion. Crutches.

But no broken leg.

To pray for Kellen's health and his leg was natural. It's just as easy for me to pray for Zoe's health and heart.

It's just that complete healing is so inconceivable to me. Perhaps that makes me Sarah, laughing at God's limitations. And by no means follow my lead here. Pray hard, pray without ceasing. Pray for Zoe however you are led.

I wish it was as easily resolved as Kellen's broken leg.

Toughing it out

Hi everyone. I talked to the Ironman, Michael Hennessey. His knee is really hurting him, but he just wants to know if the pain he's experiencing will result in permanent damage. He's trying to get some help to get an MRI - since right now, he's between insurances.

I asked him what this meant for his quest, and he said it was really a matter of dealing with pain and just working through it.

So, if the Ironman can tough it through a marathon and 140 miles of biking and 2.5 miles of swimming with a painful knee, I'll tough it through my stuff, too. How about you all?

I talked to my friend once when she was upset. She was in tears and she just said it was so frustrating to be a pawn at work. She told me how it hurt, how it was a big mess.

I told her that she's got to get up. Right? You got to get up. You fall down, you get up. That's what we do. Right Michael? Right, Zoe? Get up.

thanks, but

So somebody read this here blog and wrote an overzealous email to Zoe's doctor, who is upset after reading the blog.

And responded by calling Jen and telling her she has been more than fair, and some other comments regarding the thoughts I've posted here.

Makes me want to stop writing here. But i'll keep on going. I have looked at what I wrote about Dr. Frommelt in my blog. I don't see a mischaracterization. I see me being impatient, and human. I thank you all for your care. I wish you would have let us know when you want to help.

Here's what I wrote:

1. Zoe visited the cardiologist today for an ultrasound. The ultrasound confirmed that her heart isn't working as well as it did. This regression was predicted before Zoe was born.

Dr. Frommelt also noticed her heart is thicker - an unexpected observation. They're not sure why the thickness has occurred.

Dr. Frommelt is going to present Zoe's case to her peers tomorrow and will let us know Friday what the next steps are.

2. Dr. Frommelt didn't call today. I don't like that one bit.

When she looked at Zoe's ultrasound this week, she said that Zoe's heart was thicker. Does that mean it's a thickened heart? It's a good question, given the grave characteristics of thickened heart.

3. Dr. Frommelt, renowned pediatric cardiologist, might have called today. we don't know because it was after Jen had called begging for news. Whoever it was didn't leave a message.

Maybe everything's great and she has no news. (denial) I just have an inkling that there is news, and I wish that I could somehow trade some of my wasted heartbeats to Zoe. (bargaining)

I guess you could get me for mentioning the Doc's name? I've mentioned other doctors.

Jen is deeply, deeply saddened. She says she's going up to her room with her daughter, whose heart is failing her, and whose heart doctor is upset with me.

Meaning

"meaningless, meaningless, utterly meaningless..."

I try to fit all of my expectations, all of my hopes and desires into a frail little girl whose heart is slowly failing her. Why did I think she could hold all of those things?

Perhaps its the knowledge that God made her, no matter how frail or little. An innate knowledge that she - and we - were constructed for a purpose, for something more than a consistent pulse and to exhale CO2. There's something more.

The world we've constructed is pretty meaningless. It's a world where someone named Lindsay Lohan is well known. Where Don Rickles, it was breathlessly announced, finally won an Emmy.

But that's not to say that WE are meaningless. We, like Zoe, were built for more.

"Atheism turns out to be too simple. If the whole universe has no meaning, we should never have found out that it has no meaning..."

--Mere Christianity

Zoe At 6 Months

Zoe turned 6 months today. When the doctors broke their news to us 183 days ago, we were sure we wouldn't have 6 days. Or 6 weeks. We are truly blessed to have 6 months.

We sang happy birthday to her and had a candle on some brownies that Teia made. The boys wore hats (Aidan ripped Ethan's off and stepped on it).

Here's my sin - through it, I've somehow shifted from grateful thanks to "Now what?" (anger)

Dr. Frommelt, renowned pediatric cardiologist, might have called today. we don't know because it was after Jen had called begging for news. Whoever it was didn't leave a message.

Maybe everything's great and she has no news. (denial) I just have an inkling that there is news, and I wish that I could somehow trade some of my wasted heartbeats to Zoe. (bargaining)

Thank you everyone for all your wonderful prayers and wishes. This is a day filled with so much pride and emotion for all of us. We're truly humbled by what we've been given.

When You're Smilin'

In case you thought the banner picture was a fluke...here's a bunch of pictures of Zoe smiling. Posted by popular demand.

No Word? No Word.

Dr. Frommelt didn't call today. I don't like that one bit.

When she looked at Zoe's ultrasound this week, she said that Zoe's heart was thicker. Does that mean it's a thickened heart? It's a good question, given the grave characteristics of thickened heart.

I almost typed that Zoe turns 6 months on Monday, which would have been assuming i get the two days in between.

Pray for my daughter's heart. And her dad and mom's.

Zoe Update

Zoe visited the cardiologist today for an ultrasound. The ultrasound confirmed that her heart isn't working as well as it did. This regression was predicted before Zoe was born.

Dr. Frommelt also noticed her heart is thicker - an unexpected observation. They're not sure why the thickness has occurred.

Dr. Frommelt is going to present Zoe's case to her peers tomorrow and will let us know Friday what the next steps are.

CW's "One Tree Hill" Showing A Little Robbie Seay Love

Tonight's episode of One Tree Hill - that bastion of Christian ideals - features Robbie's "Shine Your Light On Us."

It's playing right now...how cool! Under the dialogue, you hear Robbie singing "if you feel lost, sing along..."

Houston Friends

Before Zoe was born, I think I thought I knew a few people in Houston. Now I'm praying for and thinking of Robbie and his family, Your Favorite Baseball Player Chris Sampson and his family and then the other million and a half people ravaged by the storm.

I'll let you know if I hear from anyone.

keep praying for marcia

I was able to communicate with Marcia. She's 5 weeks from having her baby and is very concerned. The baby's current weight is under three pounds. Please keep her in your thoughts and prayers.

I did cut and paste all of your comments and send them to her - Thank you all.

My 4 AM Friend

You've heard me talk about Zoe and me at 4 am. And how she just wants to be awake and kind of stare and make weird noises as if she's talking. I'm sure she thinks she's talking.

She likes interacting this way with me more than her mom. I'm not sure why. Some mornings, this whole interacting is beyond me and I doze off - that's when I get the Zoe punch. Some mornings, I'm actually pretty awake and lucid. And, as I've written before, some mornings, I'm just swept away by the reality of losing her.

I don't belong here. In this world, little kids die because they have an extra chromosome and its no one's fault. There is no logical or even emotional way to explain why this truth even exists. This is direct evidence that I was not made for this world.

C.S. Lewis says, "If we discover a desire within us that nothing in this world can satisfy, also we should begin to wonder if perhaps we were created for another world."

beautiful letdown
by switchfoot

It was a beautiful letdown
When I crashed and burned
When I found myself alone, unknown and hurt
It was a beautiful letdown
The day I knew,
That all the riches this world had to offer me will never do.

In a world full of bitter pain,
and bitter doubts,
I was trying so hard to fit in,
Fit in, until I found out

I don't belong here (I don't belong)
I don't belong here (I don't belong)
I will carry a cross and a song
Where I don't belong
I don't belong

It was a beautiful letdown
When you found me here
Yeah, for once in a rare blue moon
I see everything clear
I'll be a beautiful letdown
That's what I'll forever be
And though it may cost my soul
I'll sing for free

We're still chasing our tails
In the rising sun
In our dark water planet still spinning
In a direction no one wins
No one's won.

See, I don't belong here (I don't belong)
Well, I don't belong here, I don't belong
I will carry a cross
With a song where I don't belong
I don't belong
I don't belong here (I don't belong)
No, I don't belong here, I don't belong
I'm gonna set side
And set sail
For the kingdom come, kingdom come
Your kingdom come
Won't you let me down, yeah
Let my foolish pride forever let me down

Ah, Easy living, you're not much like the name
Easy dying, you look just about the same
Would you please take me off your list
Easy living please c'mon and let me down

We are a beautiful letdown
Painfully uncool
The church of the dropouts
The losers, the sinners, the failures, and the fools
What a beautiful letdown
Are we salt in the wound
Hey, let us sing one true tune

I don't belong here (I don't belong)
It feels like I don't belong here, yeah
It goes like I don't belong here
I don't belong (I don't belong)
Won't you let me down (I don't belong)
C'mon and let me down (I don't belong)
You always let me down (I don't belong)
So glad that I'm let down (I don't belong)
C'mon and let me down (I don't belong)
Cuz I don't belong here
Won't you let me down!

Tracking Rare Incidence Syndromes

I had the honor to email interview Dr. Debbie Bruns who works for the TRIS project. I introduced myself but she had already found the blog.

It's interesting to me to talk to people who spend time talking and thinking through what is happening today. Here's an excerpt of our talk:

before my Ph.D., I was an Educational Therapist in a Skilled Nursing Facility in NYC. I had two girls with t18 in my class. They were three years old at the time and this was in the early 1990's. I looked for information to help me adapt materials and activities for them and found nothing. No, I did find something, literature telling me children with t18 don't survive to their first birthday.

Read her entire interview here.

these carbon shells

i got an email from the ironman. his knee is hurting him so he's going to sit the next race out. it won't deter his quest, but it's time to pray for him and his mission and his call. and his knee and his wife and six kids in their little house.

pray for zoe. we met with her cardiologist today and her blood oxygenization is now between 70-80%. she goes in for an ultrasound next week so they can get a better view of her heart, and then big decisions need to be made about what to do next.

i don't know about you, but i hate begging. i hate it. i hate feeling abject, i hate needing you all and needing help. recently i thought God had blessed me in a special way that would have made me feel a little less dependent, but that's been taken away. back to being a poor and begging man. i think in another stage of my life, i'd be angry. but i'm too tired to be angry. i turn myself back to the scars that mark His skin. and lose myself.

the economy of mercy
by switchfoot

There's just two ways to lose yourself in this life
And neither way is safe
In my dreams I see visions of the future
But today we have today
And where will I find You?

In the economy of mercy
I am a poor and begging man
In the currency of Grace
Is where my song begins
In the colors of Your goodness
In the scars that mark your skin
In the currency of Grace
Is where my song begins

These carbon shells
These fragile dusty frames
House canvases of souls
We are bruised and broken masterpieces
But we did not paint ourselves
And where will I find You?

Where was I when the world was made?
Where was I?

I'm lost without You here
Yes, I'm lost without You near me
I'm lost without You here
You knew my name when the world was made

Vaccinations

As an additional "take that" to those who find Trisomy 18 "incompatible with life" - Zoe received 3 vaccinations today. She's crabby and working through. Just adding a little fight to the fighter's world. Seemslike she's got more than enough.

Zoe Update Day 171

Zoe spent a good part of this morning - from 4-6ish - uncomfortable. We're pretty sure it was her reflux because after receiving medication, she conked out. Or else she just ran out of gas.

But outside of that episode, she's been really doing well. She sat quietly at the waterpark (held, of course) and did...ok in the car.

It's easy to see where she is in her interpersonal development. She's definitely trying to say something to us when she's awake and animated.

For those of you keeping track, we were told that 90% of babies diagnosed with Trisomy 18 die before 6 months of age. In days, that'd be in 9 days. In months, that would be in 14.

Pray For Marcia

A commenter asked me if I'd talk to Marcia, a young woman who is dealing with a pregnancy - and a diagnosis that her child has Trisomy 18 - alone.

All of the love and goodness and prayers you all have offered me have really been part of my solace. The other part is kids like Aidan, who in the pictures in the previous post, thought he'd put some suntan lotion on. I guess what I'm saying is it takes a lot to make it through. Marcia needs our prayers.

Ironman Weekend

Here's some pics...we had a chance to spend a night in an incredible suite at a resort and then goof around at some waterparks, and then go see Ironman finish his race. Now, that's a weekend. I'll youtube the video when youtube comes back up. Keep praying for our Ironman.

The Ironman Twosteppeth

We just got back from a weekend of water slidin' and hanging with the Ironman. So many good stories and better pictures. We're currently working on getting the pictures and a video of the Ironman doing his race-closing twostep for you.

In the meantime, we're brainstorming a whole bunch of ways to help the Ironman on his quest. First job is for you all to get on your knees. The incredible web of prayer you've built for Zoe can include this man of God.

As he finished his race, a volunteer went to him immediately. She did a bunch of talking and he listening and they were sharing. And they both cried.

Her neighbor has a Trisomy 13 child who is 18. And she wanted to share it with him. And I will with you. He's touching lives and hopefully changing a few. Pray for him and his quest.

Cookies by the Ironman

I'm eating some great cookies made by our favorite cyborg, Michael Hennessey. He guaranteed they'd be the best cookies I've had, and that's what happened.

And trying to figure out how this very kind and pretty laid-back guy does it. I have no idea. He mentioned today that the families of kids with Trisomy don't have the time to work on awareness - that's why he's working so hard.

Yeah, that's right. Michael isn't driven because he has or lost a child to Trisomy. He is driven because he has heard God's call and he's doing everything he can to bring awareness about the lives of children with Trisomy and their parents.

Please go to Michael's site, and donate. In hearing God's call, he and his six kids and his dear wife are stretching themselves out to their limit for kids and families everywhere. For Zoe. As he strives for the record, he's getting chances to talk to media (tonight he did a phone interview with WTMJ) (thanks, Erika and Chris) about Trisomy. In his pursuit, he sometimes eats less than he should or wants so that he can achieve his goal.

Politics and Life

1) abortion is not the government's choice. "My body, My choice". Let's take care of the millions of starving BORN children in the world first. Obama '08

2) http://www.dailykos.com/storyonly/

I guess we've hit the big time.

I'm getting comments from people talking politics. The first comment quotes...something and I think the writer thought by quoting that something they had authority.

I have no idea what the quote has to do with Zoe. Zoe's body? Zoe's choice? Her choice is to live. Her mom also chose to let her live because God has seen it fit to let her live. I think all three of them have made that choice.

You can throw me and my body in, too. Both of us choose to let Zoe live.

If anyone and their body would like to weigh in on their choice, let me know. I'm open to hearing from all of you.

The second comment I didn't reprint fully because it's just sinister. The fact that it is up on this blog is part sad/sick and part...awesome. The fact someone thought a good idea would be a post a link to an article insinuating that Sarah Palin faked her pregnancy because her daughter was truly pregnant...wow. Way to go. The article included statistics about what demographics deliver children with Down's Syndrome as PROOF.

Thanks to all you kooks. And your bodies. And your quotes. Keep them coming.