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Tuesday, December 22, 2009

Zoe's Happy Birthday


Zoe and Cousin Anna hanging out.


21 things we've learned about Zoe through 21 months:

1. No idea that people sleep at night and are awake during the day.
2. Steadily improving with therapy.
3. Is at a 5-6 month old level in development.
4. She can reach for and pick up a toy.
5. Grasp things longer.
6. Working hard on rolling over.
7. Practicing sitting up.
8. She'll push a button to activate a toy when she figures it out.
9. Intentionally waving hi and bye-bye.
10. Working hard to form her mouth into speaking.
11. Loves Pediasure.
12. Daddy's girl (but loves her momma).
13. Loves loves music. It makes her smile.
14. Likes to use her foot as a feeler.
15. She'll run her feeler foot on people and things to feel texture.
16. She especially likes running her feeler foot on keyboards of laptops.
17. Is still taking Captopril twice daily.
18. Isn't a fan of fruit baby food. Prefers baby food with meat in it.
19. Breaks into a huge this-is-hysterical smile when her face is smushed against something.
20. Still loves looking at her hands.
21. Since Daddy took an hour nap and drank coffee to stay up with her tonight...has fallen asleep.

Sunday, December 20, 2009

The Now And The Not Yet




It struck me driving up to Kohl's Department Store yesterday. It was Saturday at 2 pm and there was a really light snow falling. I pulled up behind the store - back by the dumpsters - and saw...

...cars. And people parking their cars and hustling in. I guess it was the contrarian in me that drove around to the front to see if there was any spaces, and there weren't. At all. Between the snow that has fallen and this, the last Saturday before Christmas, the lot was full.

And inside the store was full. I found some 80% off gifts, but when I saw the line for checking out, I just put my stuff down and left.

And that's in West Bend, which, by last count, is suffering from an almost-historic high unemployment rate of 12 percent.

It was the end of a week where we've been putting together a video for the Dohmen Foundation. Watching the footage from Sudan and Haiti - of the abject poverty, of the huge eyes of children who have seen more than any of us would want them to see - absolutely broke my heart. Goodhearted people like the BloodWater Mission, Dohmen Foundation, IMA World Health, MAP International, Vitamin Angels, are trying their hardest to fight a tide of poverty and sickness and pain.

And as I pulled into the parking lot, I was in tears. Not about the five year old Haitian girl infested with intestinal worms, and not because I had to wait in line with others suffering under this economy. But because perhaps the most vibrant life force I've known, the best athlete I've ever seen, the most demanding and exceptional artist, easily the finest worker in the God's field could no longer lift his cup to his mouth. My Dad was being placed under hospice care.

If anyone can describe to me a circumstance as terrible as watching someone who prided himself on the food he consumed, who worked out with fervor reserved for the elite, to be decimated by this world....keep it to yourself. I've had enough of this place.

This morning has me running low on hope, low on peace. Low on faithfulness.

The problem is I'm so mired in this world as if it's anything but a torn and broken place. And I've spent no time thinking about Heaven. And yet, that's where I'm supposed to be focused. And Dad spent His whole life trying to get me and everyone else to focus our gaze there.

The missing solace for me is Heaven. It's a lesson I should have learned looking at that footage this week. Kids living in squalor, undernourished. Living in huts with no clean water...and yet, singing, beautifully, loudly, dancing for their Savior. A gathering of village people holding hands in a circle praying "...in Jesus' name." What possible reason did these children and adults have to believe? To sing? To have joy or hope? They were not receiving joy from their surroundings or current condition.

"Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated at the right hand of God. Set your minds on things above, not on earthly things." - Colossians 3:1-2

Heaven. When I hug him there, I won't be afraid I'll break him. Where he'll be back to singing loudly, whistling. Heaven, where the artist meets the Artist. Heaven to tell stories of grace, and they'll laugh, and he'll laugh telling them. Heaven, where he'll see the thousands whose lives were changed by God's work through him. Heaven, where he'll experience completion beyond any moment he's had here.

I know what I want. But what I want, I have, and will have again. Just not today.

Wednesday, December 09, 2009

Winter Snow.



Wow this song is incredible. Merry Christmas.

Winter Snow

Could've come like a mighty storm
With all the strength of a hurricane
You could've come like a forest fire
With the power of heaven in Your flame

But You came like a winter snow
Quiet and soft and slow
Falling from the sky in the night
To the earth below

You could've swept in like a tidal wave
Or an ocean to ravish our hearts
You could have come through like a roaring flood
To wipe away the things we've scarred

But You came like a winter snow
(Yes, You did)
You were quiet
You were soft and slow
Falling from the sky in the night
To the earth below

Oh, no, Your voice wasn't in a bush burning
No, Your voice wasn't in a rushing wind
It was still
It was small
It was hidden

You came like a winter snow
Quiet and soft and slow
Falling from the sky in the night
To the earth below

Falling
(Oh, yeah)
To the earth below
You came falling
From the sky in the night
To the earth below

The Weary World Rejoices, Or Why We Are Dangerous




I've spent my share of time these past few blog entries telling you my heart about the trials and travails of this world. It's good, cathartic, it beats a shrink, and to hear that it has struck a chord with you all is nice.

But there's one other thing you have to know: I hope.

Do you?

I hope. This world beats me down, and then maybe I cry or I whine on this blog, and then you get up and you hope. You hope.

There are times that our hope is as preposterous as our sin and failure. To me, it's the thing the devil can do nothing about, except to try and exhaust you and convince you it's gone. But it's not. There is no Godforsaken place.

Our ability to hope is what makes us dangerous to the world and to the Devil. "Let Zoe die gracefully," we were told over a year ago by her pediatrician. If we didn't we were selfish. Letting her die is safe; fighting for her life is dangerous.

I think instead, I will hope Zoe can say "Daddy." There are medical professionals who, based on the data, do not share that hope.

I hope my children are loving and caring husbands, wives, and parents. There are many who, based on their dire predictions of their lives, do not share that hope.

When I act in strength, with the confidence of hope, my soul feels its worth.

Long lay the world In sin and error pining,
'Til He appear'd And the soul felt its worth.
A thrill of hope The weary world rejoices,
For yonder breaks A new and glorious morn.

Below is what Louie Giglio shared at the Chris Tomlin "Glory In The Highest" concert on Sunday in Milwaukee. I know it's long. But if you want God to touch you, if you want God to clean the crap out of your heart this season, find some time and listen.

Love, GB

Part 1:


Part 2:


Part 3:

Monday, December 07, 2009

This Moment




It's the Holidays and that means a lot of emotion for me. I used to sing, and when our group sang best was around now. Our Thanksgiving Eve service was...was just one of those moments when you can't feel your fingertips. There was this one Christmas service once that we did that was the best thing I've ever been a part of. We did so much. So much good for others and each other.

I don't sing anymore, and so this season comes with a deep longing. And now even more longing.

A long time ago, in 2001, I found out my father had cancer over Thanksgiving. And for the postceding months, I believed him to be going or gone. I walked alone at night around the streets of my little town begging God for his life.

And..for the past few years I've been telling my troupe of kids that we should look around the table and be grateful for who's here, because when the kids grow up, who knows where they'll be. Next year, God willing, two will be in college and my heart will miss them. Longing.

I look in the mirror at a tired 41 year old man. If I live as long as my grandfathers, I am more than halfway done. I long for sleep, for health, for a few more moments with my kids - but the kids who giggled in the tub. For my dad - but the dad who plotted out his practical jokes very seriously. For my singing days - but the days when the biggest fight was how long to hold a note.

All this longing. Today we drove by the big Nativity scene outside a church here in Cedarburg and Selah wondered why there was no baby out. I told her it was likely the church wanted people to ask that, to wonder where the baby was, when it would come.

Me too. Come quickly, Lord. Fill my longing with a song again. My father with peace. My children with enough to be strong in you. Fill this season because I need you.

Thursday, December 03, 2009

One eighteen




My dad could throw a knuckleball. Overhand, underhand. If you ever seen someone throw a knuckleball, ever seen one up close, floating by you when you've got a bat in your hand, it's pretty mesmerizing.

When he threw it, his eyes were huge - Mike Singletary-like, for those of you who know the reference. Being a perfectionist, Dad worked hard to conceal the pitch, to keep his motion consistent. But a knuckler looks like a knuckler coming off the pitcher's hand. And knowing the pitch is a knuckler won't help you hit it, anyway.

It made me realize - I think most of us realize - that Dad was letting us hit pitches. That if he wanted to, he could have dug out the huge sweeping curve too and kept us at bay for as long as he wanted.

He's not going to throw a knuckler anymore. It sucks. Kellen will never see it, and I guess it's to me to explain in reverence so he understands what an amazing, dominating athlete Bat was. Ridculously fast. Incredible hands. Mercury quick.

I sat across the table from Dad on Tuesday and told him that we all have to quit wishing. Wishing for the past, for the days of the knuckler, for a batch of waffles prepared while dad was whistling to the stero.

And we have to quit wishing for the future. Today is today and it's all we have. And today is the only place where God is waiting for us. For Bat, all 118 pounds of him.

Tuesday, December 01, 2009

What I'm Talking About

The detractors of Christian music might not have failed on such a grand scale as me. But for me it's the confluence of gifted musicianship, profound lyrics, my sin and God's glory.



You Are On Our Side
by Bethany Dillon

The orphan clings to Your hand
Singing the song of how he was found
The widow rejoices
For her oppressors are silenced now

You sit at the table with the wounded and the poor
You laugh and share stories with the thief and the whore
When You could just be silent and leave us here to die
Still, You sent Your Son for us
You are on our side

The runaway falls at Your feet
You are what he has searched for
The rich man is broken
When he stands beneath a sky full of stars

You sit at the table with the wounded and the poor
You laugh and share stories with the thief and the whore
When You could just be silent and leave us here to die
Still, You sent Your Son for us
You are on our side

You sit at the table with the wounded and the poor
You laugh and share stories with the thief and the whore
When You could just be silent and leave us here to die
Still, You sent Your Son for us
You are on our side

Still, You sent Your Son for us
You are on our side

Because Journalism Is Dead But Jesus Isn't: The "Side-hug" Smear Part II



In Part I, I talked about a video I found through a friend on Facebook.



The video bugged me. I'm kind of a Christian music geek and I can think of two songs that have the word "Christian" in them. Neither are contemporary: The carol "Good Christian Men Rejoice", and "They Will Know We Are Christians By Our Love."

Besides, if the side-hug was a legitimate concern of a group of hard-core Christians, they'd be banging on their pipe organ, not trying to emulate rap.

So I contacted the church that submitted the video. Here's my interview:

1. Let’s legitimize our interview by having you introduce yourself and role at TFH. How did you come to work there?

My name is Tim Bittle. I am not "employed" by TFH but I am an associate youth pastor. I am a bi-vocational pastor (meaning that I work a secular job for income and pastor at the church for free). My wife and I have been working with the youth for about 3 years now.


2. Did you all ever have a clue that this video would get the views its getting?

Not at all! As of last night, we we're over 500k including all sources (youtube, vimeo, and other video websites). We never intended the video to be anything other than a nostalgic memory for those that were in attendance at the 2009 EG conference.


3. Did Huffington Post contact you before it put it on its blog?

Never once! Which makes the claims of the videos legitimacy all that more hilarious!


4. Everyone who watches this video is struck by the high level of organization, sound design and choreography involved in this song. For detractors, it’s proof that it’s a professional group trying to legitimately promote a Christian ideal to Christian youth. For people like me, it’s proof that these are a group that if they’re going to spoof something, they’re going all the way. Which is it?

This video / performance was never intended to be taken seriously. The "rap" was written by myself, an actor and a full time janitor at the church (we are all good friends). We are about as far off from being "rappers" or even aspiring "rappers" as one can be.

When we put on these events, we get tired of standing in front of 1000 people and rattling off a bunch of rules (don't bring food or drink into the sanctuary, turn your cell phones to silent so you don't disrupt the service, etc...). This rap was created to spice things up a bit. At the opening scene, you notice that the screens are all fuzzy. That's because the rules video had just cut out and we came on stage to make the rules a bit more fun.

When we do something like this at our church, we always do it with a ton of energy and what we believe to be excellence! You can see evidence of this in the other videos posted to the TFH account on youtube.



5. There are clues this is a spoof. It’s posted on a Youtube channel that has only rap spoofs. It is tagged under “comedy.” You can hear peals of laughter throughout the video, starting at :40 seconds. Why do you think people didn’t get the clues?

Beat's me. The best answer I can give is that they didn't want to. Much of the response, as you can see, has been negative. It is generally aimed at demeaning Christians and not necessarily us a individuals in the video.

I think much of the controversy has been stirred by peoples desire to share their opinions about how much they despise organized religion and those that would be "shallow minded" enough to believe it. At the end of the day, we are not offended at all but it was a bit of an eye-opener about outsiders views of the church.



6. Are you all going to do anything to address that it is a spoof?

We have purposely not responded online or posted a response video. Partially because we think it's funny that something this hilarious turned into such a big deal but also partially because we have been surprised to see how quickly information gets twisted. Many of the mainstream media websites posted that "we have verified that this is a legitimate rap group".

The fact that none of us had been contacted to verify this information is alarming! How many people are just buying into whatever garbage they are told online, on the news or by what they deem to be reliable sources. It just supports the thought that journalism today is not what it should be. This is one of many interviews we have done with those who want the truth behind the video. I think after a short period of time, the spoof will just sort of address itself.



7. My father’s a pastor and I’ve been a Christian all my life. I honestly have never heard of the “side hug” before the rap. Is it a part of your church’s beliefs? Is it part of any of the “rapper’s” beliefs?

Not at all! We are all totally fine with hugging. This was just some self-depreciating humor working itself in song :).

8. I am amazed that the stories of Christians having an impact on this world are rarely ever told, but slams on Christians like this spread like wildfire. Something tells me you wish a different video, story or website would have gotten as much notice. Is there a story, video or website you would like to tell me about that tells more of who you all are and what you do?

I would love to recommend that anyone interested download the TFH podcast / videocast. We have a great church with an amazing senior pastor. It's a relevant church with amazing worship and practical teaching.

I guess my advice would be "don't knock it till you've tried it". All of us in the video were living pretty colorful lives before we became christians and began attending this church.

I can honestly say that without it, we may have all found ourselves in much less desirable place in life. Any info you would want about our church, our campuses, our internship, our beliefs, etc, can all be found at TFH.org. Thanks!

Monday, November 30, 2009

Because Journalism Is Dead But Jesus Isn't: The "Side-hug" Smear

It started for me when a friend I work with posted this on Facebook:



The link was to a blog post a blog called "The Huffington Post", believed by many to be the most influential, if not the most influential, blog on the internet.

The post, reprinted here in its entirety, was written with a sneering tone that bugged me. Oh, did I tell you that The Huffington Post is a haven for bad reporting and liberals?

The post:
"Christian youth groups finally have an alternative to normal, aka "front," hugs. As we all know, face to face embraces run the horrific risk of a clothed crotch graze. The Christian Side-Hug (or the CSH, as the kids call it) rids us of sin, as the only below the belt contact will be some good old-fashioned hip on hip action.

To help the side-hug fad sweep the nation, let us present this hardcore rap song. Yup, side-hugging has hit the streets. The group has as many emcees as the Wu-Tang Clan and as much power as a barbershop quartet.

Look out for the ominous sirens blasting on the track. Clearly, these are gangsters on the run from the law - probably from side-hugging up a storm! One emcee (wearing his bandanna 2pac-style no less) admits to taking part in the forbidden front-hug. But don't worry, God. He's married.

At the end, they all simulate getting shot and dying. We can only hope there are side-hugs in heaven. "



Honestly, I couldn't make out all of the lyrics, so I googled the name of the video, and got this:


Entry after entry, page after page, of bloggers commenting on the video. And literally all of the entries for the first several pages were people ripping Christians and Christian music.

From "The Sexist":

The Sexist: Sex and Gender in the District
Beyond DC
The Christian Side-Hug: “Front Hugs Be Too Sinful”

Posted by Amanda Hess on Nov. 23, 2009, at 9:56 am

"Attention, Christian kids: If you like not having sex, not speaking the Lord’s name in vain, and not being gay, then you’ll love the newest trend in policing typical adolescent behaviors in the name of God. It’s called the The Christian Side-Hug, and it’s here to help the devout avoid the temptation of full frontal hugging. Don’t worry—it’s cool, because they made a “rap” song about it.

According to Stuff Christians Like, there’s no “exact scripture reference” banning normal hugging. But the Side-Hug does significantly lower the “risk of two crotches touching,” which has got to be in the Bible somewhere. Here’s how you do it:

Instead of face to face, you go side to side, putting your arm around the person and your hip against their’s. Still having a hard time mastering it? Pretend you’re taking a photo and you’re both looking at the camera together. The side hug, or A frame as it is also called, is safe for the whole family, friendly and above all holy.

The Christian Side-Hug strikes me as almost skeezily chaste—I’d much rather have a brief normal embrace with a stranger than a hip-tap from a person who I know sexualizes even the most mundane forms of human contact. But the Side-Hug itself is slightly less offensive than the medium being used to promote it: An appropriated version of “rap music” performed by a bunch of white youth pastors who think that mixing in some gang-ish hand signals, tying on a bandana, and securing some fake bling will bring the youth to God.

The Christian Side-Hug rap comes courtesy of the Encounter Generation Conference, an annual Christian youth gathering which hopes to “bring the power, authenticity, and relevance of Jesus Christ to their culture.” I’m afraid that this potent combination of absurd chastity and mock hip-hop will be more likely to bring the power of a school-yard beat-down to these kids’ faces."

Commenters on blogs like this had about as awful - to significantly worse - things to say. Most ripped Christians and Christianity and Jesus. Some called this "Christian rap."


It was early Thanksgiving Morning. But I was incensed, a little defensive. Christian music has saved my life. And, I think I can comment to some degree as a professional who works in a media industry: the music and the musicians are largely gifted people. The comments were so scathing...and the video itself was too...odd.

I put my headphones on and listened. It was then that I heard the audience laughing pretty much throughout the video.

I decided to commit a FLAGRANT ACT OF JOURNALISM.

Saturday, November 28, 2009

Thanksgiving in Teia's Eyes




Great, amazing pictures.

Thanksgiving 2009

GT




A long, long time - some 30 years ago, I was friends with a guy named GT. George Theodore Ballance, a big kid with a round face. GT played on the offensive line for our flag football team, truly found himself in the play, and knew how to pray with great fervor.

I said goodbye to GT midway through our 8th grade year when I moved away. We reconnected on Facebook a few months ago when I found a "GT Ballance Jr" online. We exchanged pleasantries, and then he told me his dad actually was on Facebook using his wrestling name. Seemed like GT had continued to be an athlete and dynamic performer.

GT and talked and shared via messages about his son and life and beautiful wife. Just a few weeks after we started talking, his wife was killed in a car accident. Age 32. She loved the Lord, and her husband, and now I see him walking a life of faith and tears. Yesterday's trip to the mall with Jr. ended up with some fun and three breakdowns. Pretty good for him, he commented.

GT can mean something to you and me. Give Thanks. For the remarkable blessing we have that we EXPECT - the time spent with those we love. Please don't waste a moment today. Tell those you love you love them. GT.

Thanksgiving

We traveled home this Thanksgiving for the first time in years.

A year ago, Jen and I were holed up in a room in Children's, praying for Zoe. This year, we were able to show her both her mom and Dad's families. At Jen's Thanksgiving, Terry, Josh and Jen acted out scenes from "A Christmas Carol" with great vigor. The food was marvelous and better still was this family, who through it all, has insisted on being a family.

We then drove up north to Bat and Christa's. I don't think it would surprise you to know that there were three floors of activity and conversation, waves of eating. I think the two most interesting dynamics are the huge number of grandchildren who play and talk and interact without thinking of the uniqueness of their relationship; and the fact that we're all old now. I'm not. But Erin is. Also, Heidi just revealed that she is only seven years younger than David Hasselhoff, which set off a chain of comparisons.

Bat and I talked briefly at how impactful the five short years we spent in New Orleans were. All of us recall those years as foundational and a true part of our personality. And the people all recall us and Bat with love. He told me that he's just honored to have been used by God.

To be able to spend time with my dad and to fight Zoe all night. To have beautiful, remarkable young ladies who are kids like Iz and Teia. To see Kellen towering over the group, quietly iTouching. To make a mindless bunch of jokes with my brother. Christa offering 10 pies after dinner. Selah and Elise free to play with cousins. Goofing around and cutting down a 20.00 tree at the ol' tree farm. A very, very Happy Thanksgiving.

Thursday, November 12, 2009

Heroes

I nominate for heroes - true saints - anyone who has turned their life, their dreams, their gifts, their time, their marriage, their relationships, their hobbies, their desires over, abandoned them so that they can care for another person.

For the first time in months I accidentally spied this blog's traffic. It's down a ton, and that's because I'm not writing anything.

There are two reasons: if I write something, that means someone can use it against me. "I thought you said in your blog Ethan had fever," said one reader. "Why don't you just write about this in your blog," sneered another about a year ago.

The other reason is that I'm spent. I'm working and working and working. My work is fighting for survival in a tough economy, and I receive a lot of pressure to succeed, to bill lots of time, to acquire new business. So I do. I left work last night at 8:30 pm and left for work at 5:20 am. My reward for working that hard is that I get to keep my job.

But when I got home last night after stopping at the drugstore for medicine for my poor Aidan who's sick, my sainted wife was exhausted from her long day of holding serve with 8 children, one of whom is a special needs kid which by herself is a 24/7 job. A special needs kid who has an undetermined future, an undetermined group of future needs. Who may or may not talk. Or sign. Or walk. Or live.

The others - the older three, for example - have needs. Kellen has both of his toes worked on and needs a permanent solution applied there somewhere during the hoops season. Isabel just had three teeth removed and next week her final stages of braces. Eventually, she'll need another four teeth removed. Teia wants to get to Green Bay to meet with cousins. Those are typical, average, everyday needs.

And it means that when Jen is concerned about how she's in day 3 of a headache that includes her neck and back, she knows she can't afford a co-pay, not this year. Maybe January. For now, the co-pays go for Kellen's feet, Izzi's teeth, and to the urgent care for little Aidan, who had 103 fever last night.

1:30 Jen begged for three hours of sleep. I tried. At hour 2.5 I had drifted off, and Zoe threw up all over the bed, herself. Everybody up, everybody out. Clean off the bed, lay something on it. I'm looking anxiously at the clock knowing I have to be up at 5.

3:30 Jen's up and angry, emotional. She left the baby wipes in the car and has to go out in the 20 degree weather for them. She's slamming things and flops on the bed and I stir. I'll be up in 1.5 hours.

5:00 Zoe is still up. She's crying. Not sure why, maybe because it's the end of her nocturnal day. Maybe something else. She can't communicate like any other 19 month old so we wonder if she's hungry? Empty stomach from evacuating it hours before? Are we even awake and rational enough to decide?

7:00 I'm here at work and have been for an hour. I have three projects due today. Tonight will be no different, except Jen works, then comes home. This will never end. We hope it doesn't, because if it does, then something happened to Zoe.

We are nothing special. We're just burned out and tired and there's honestly no hope. Date night? Why? We're so tired and broke. We are poorer than we ever have been. I work so many hours I can't take on another job. I will not get a bonus from an employer that's struggling to stay afloat.

And I know I'm not the only parent or child like this. There are so many heroes out there. I wish I could hug you all. Jen and I both wish and hope we'll win a lottery so we can help you all. Your sacrifice, heroes, goes unnoticed, I think, even by yourself. I pray for you. Pray for your strength. A glimmer of hope somewhere, somehow. Maybe some sleep.

Monday, November 09, 2009

Song of Hope



Our whole family had a wonderful time at the concert last night. Robbie was warm and wonderful to everyone. We received some huge, warm hugs from him and he mentioned what we noticed...that when he saw Zoe during the show, he was really moved.

Zoe slept through Caleb and Will Franklin Chapman, and Bethany Dillon. Robbie was last, loudest, and had the most lights, so she woke to a wonderworld of lights and sound. And didn't make a peep. Maybe she recognized the music.

I have a wonderful video of Bethany singing my absolutely favorite Bethany song. I do not have a similar video of Robbie because I was crying during that song.

Sunday, November 08, 2009

Bethany Dillon=amazing. Just brilliant. Video to follow.
Will and Caleb Chapman=real deal. Impressive. Really mature sound.
So excited. Robbie Seay concert! Gave him a hug this morning. Both of Steven Curtis Chapman's sons are here, too.

Tuesday, November 03, 2009

Noodles

The water is raging boiling and I pour a couple of cups of rotini into the bowl. Seven minutes it will be perfect, maybe with a touch of oil. It wasn't until I stirred the pot with my fork in a way I've heard before - hundreds of times. I'm eating my dad's meal.

I'm instantly proud. And longing to call him and tell him that maybe I'm a little like him. I did learn something. First thing tomorrow.

Crystal Clear

Zoe visited the doc today and a chest x-ray showed her lungs clearer than in August. Now we can all take a sigh of relief.

Jen and I are just worried about how quickly the flu can overtake s little one like Z. It makes for sleepless nights and tension...Jen was worried that Z was receiving the correct amount of meds. You wear it all inside and it wears you.

Ding! Sparkly x-rays tend to get you out of the funk.

FLU

Two weeks ago, I stood in 40 degree temperatures with hundreds - by my estimation, over a thousand people - waiting for an H1N1 flu shot. It's that important to our house, to Zoe. Selah, too is considered high risk.

The flu came anyway. Ethan, now Aidan. Izzi was coughing and ill. Zoe had fever on Friday but the doctors told us her respiratory sounded clear. It didn't this morning.

It's a helpless feeling. We've dropped lots of money on the hand gel and lots of the air/surface disinfectant. We quarantined the sick kids to rooms far from the general living area. We're pretty sure that exposure is happening outside our homes - maybe even at the site of the flu shots.

Add that to the list of things - money and health lead the list - of things I'm helpless to correct or heal in my house. It's easy to lose hope.

Thursday, October 29, 2009

Robbie's BAAACK!



Robbie Seay is going to be playing in the area on November 8 free for nothin'. I'm so excited to see him again and he's performing with Bethany Dillon, who is really fun, too.

Please join us out there if you can.

Robbie'd love to see you, too.

"come out..bring friends..help us spread the word..and of course BRING ZOE!!!!! would be a thrill to see friends
blessings
robbie"

Another Round

Bat's fighting hard. Weight gain has dropped off and he's struggling to keep food down since Sunday. Please, God, continue to give him days.

Tuesday, October 27, 2009

oh! happiness


Jen graciously got me tickets to see David Crowder* Band on Saturday. We drove a piece in the noisy mufflermobile but the concert was spectacular.

David Crowder, you see, is equal bits jester and genius. He's odd and profound. His concert was zackly like him.

Best of all, I was able to meet DC after the show and confirm that yes, Robbie Seay's account of him meeting Richard Simmons in the airport was true. Robbie Seay says this was the meeting of the two strangest men in the world.

How To Wake Up On Your Birthday

Hear Zoe crying. Realize she slept for almost 4 hours in a row. Go make her a bottle. Play.

Tuesday, October 20, 2009

Shadow of Death Part II

A friend of Jen's family, TC, an aspiring actor and artist, was shot last week in California. Please keep him in your prayers.

The Shadow of Death

Pray for Little Chloe and her dad. One of the blog readers - and St. Mipps' sister - worked with Chloe's mom.

Monday, October 19, 2009

The Eye of a Needle




We had the rich man/eye of a needle sermon yesterday. I struggle with the sermon because the verse doesn't seem to say it's hard for a rich man to go to heaven - it seems to say it's impossible.

I had heard from my Religion teacher in 11th Grade religion that the "eye of the needle" was a gate in Jerusalem. This apparently is not true. That even seems tougher on me. I had found a nice place where entry to heaven, while hard, was somewhat possible for a rich man.

It sounds like the verse is actually using Hebraic hyperbole to explain the difficulty. And, come to think of it, Christ did say a tree was sticking out of the guy's eye in the previous verse. I was okay with that. Shows my inconsistency.

ZOE (string)BEAN

Zoe had a run in over the last few weeks with a possible infection. I'm sorry, folks...but the last few weeks have rivaled any in my life in terms of being busy but Zoe became very upset and in those instances, our medical position is to treat an infection - even before there is hard evidence of one.

In this case, Zoe received a series of shots in her legs over three days. By the middle of day 2, she was returning from being really uncomfortable. She still has the little scar/bruises on her legs now.

BUT...the big news is that she is up to 12 pounds, 14 ounces. A long, too-skinny, but GROWING stringbean.

Tuesday, October 13, 2009

BEHOLD

In honor of Bat's progress, I present this guy and his incredible range:

Go Bat, Goooooo



Bat has his bad days and his good days. Just recently, he followed up a bad day with a markedly good day. Christa asked him what happened. He told her he had changed his underwear. I think clean underwear therapy is a direction medicine should look into.

...and then there's great days. Yesterday, Bat's doctor said he is cleared to drive. Gentle reader, I know you've heard me explaining Bat's terrible, terrible condition and his "Final Approach": the Pilot has spoken. Landing has been delayed.

Wednesday, October 07, 2009

Don't Call It A Comeback

Talked to Bat on the phone the other day and...I'll call him and get a recording up here soon. He's doing really well. Put on three pounds. He's joking around and back to being one of the smartest guys in the room.

Kirin says he has his off days. I bet. I might have off weeks. But it's wonderful to hear a voice you never thought you'd hear telling you he loves you. Not a bad October Surprise.

Elise's Birthday

Today is Elise's birthday. It's amazing to see kids slowly becoming who they are. Just when you think Elise's big sister Selah is silly, you see Elise pull of a wacky voice or a goofy laugh and dance.

Elise loves being here with her brothers and sisters. It's here she gets to be both a big sister and a little sister, and it's obvious she relishes both.

Aidan will always politely ask, "Dad, tonight, can i sweep wif Lisey?"

Something tells me Lisey and he tell stories and scratch each other's backs like Erin and I did 35 years ago. (Yes Erin, we're that old.)

Happy birthday, sweet girl.

Monday, September 28, 2009

Love Never Fails

Guess why my former church allowed the following song to be sung at a wedding:

1. Because it beautifully proclaims the very words of the oft-used 1 Corinthians 13.
2. Because it reminds us of "whatever is true, noble, right and pure."
3. It wasn't, because it does not point people to the cross. And then, begrudgingly, it was allowed to be sung, but only because some other wedding had errantly been allowed to sing it.

Love is not proud
Love does not boast
Love after all
Matters the most

Love does not run
Love does not hide
Love does not keep
Locked inside

Love is the river that flows through
Love never fails you

Love will sustain
Love will provide
Love will not cease
At the end of time

Love will protect
Love always hopes
Love still believes
When you don’t

Love is the arms that are holding you
Love never fails you

When my heart won’t make a sound
When I can’t turn back around
When the sky is falling down
Nothing is greater than this
Greater than this

Love is right here
Love is alive
Love is the way
The truth the life

Love is the river than flows through
Love is the arms that are holding you
Love is the place you will fly to
Love never fails you

vessel

Maybe we should all stop trying to predict what God is going to do with our life.

Thursday, September 24, 2009

Mo' Missy Black : Interview Part 2




Q: You made a decision to do something to support Trisomy and raise awareness. What did you decide to do, and why?

MBB: After I got home from Ironman Wisconsin 2008 I emailed Michael Hennesy and he gave me his website. I read everything on there and then goggled Trisomy 13 and 18 and read as much as I could. I bookmarked all the blogs I found, all the websites and read as much as I could.

My heart was deeply touched. With each child I read about, each family I read about. A little bit about my history here. I lost a baby sister when she was just 5 days old. She did not have Trisomy, but anencephaly. She was born without her brain. It was the hardest thing I went through as a child. I so wanted a baby sister and finally had one and we lost her 5 days later. This helped me relate to the families who were losing their babies to Trisomy shortly after birth.

I also had a little friend Aimee. She was not "normal" in the world's eyes. Most would have said she was not compatible with life. When we were out people would stare as I pushed her wheel chair. They would stare terribly. Aimee lost her battle with life when she was 14. I knew Aimee almost her whole life and wouldn't trade any of those moments for anything. She touched everyone's life that she came in contact with. She was incredible.

As I read about all Trisomy and these families and all they go through I thought of my sister, Blessing, and my friend Aimee. What would my life had been like if I had never known them? My life was made so much better because of them.

I knew right then and there that I needed to do something to help raise awareness for these Trisomy children and their families. I was very touched by Michael Hennessey and his passion for these children and loved that he was incorporting Ironman into his cause.

At t his point I had been doing sprint triathlons and knew that I wanted to do an Ironman someday. At that point it was just SOMEDAY. I still had well over 100 pounds to lose and really wasn't motivated. I was becoming motivated as I read about these babies. Doctors tell these parents that their children are incompatible with life. My sister was incompatible with life, yet we shared 5 wonderful days with her. My friend Aimee, in the world's eyes was incompatible with life, but we shared 14 wonderful years with her.

My question became who should get to decide who is or isn't compatible with life? I shouldn't get to decide that, the medical profession shouldn't get to decided that, the church shouldn't decide that, America shouldn't decided that. My hope in raising awareness for Trisomy is to help parents have all the options given to them. They should not feel that doctors, nurses, and people have given up on their baby, but should feel that people want to help them bring this baby into the world and do all that they can to help this baby. Even if the baby is only here and hour, a day, a year, or 19 years. These children deserve every chance to live as much as my children did.

I contacted Michael and told him that I would like to join Team Trisomy and do what I could to help raise awareness for these children and their families. I have done 5k's in their honor and triathlons. Every race I have someone's name written on my arm, a picture of them, or something to draw attention to the Trisomy cause.

In 2012 I will do Ironman Wisconsin to not only complete my weight loss journey, but to also raise awareness for Trisomy 13 and 18. If these babies can fight for their lives every day, I can fight for them through my weight loss battle on my way to becoming an Ironman.

It is an honor to be part of Team Trisomy and I look forward to my Ironman journey.

Principal Yurk

[scrippet]

ETHAN
(pushes his head through the door with a big smile)
Hey, Dad...When you grow up, do you want to be a principal?

GREG
(wondering why the boys are still not in the bathtub)
Why would I want to be a principal?

ETHAN
Because principals own the whole church and school.

GREG
Oh, wow.

ETHAN
My friend Aaron's dad is a principal.

GREG
What does he do?

ETHAN
He talks to people when they're bad. And helps them.

GREG
Are you bad at school?

ETHAN
His name is Principal Yurk. He owns the whole school.

[/scrippet]

Honey Breakdown



Dan provides an important graph regarding the honey demo.

Wednesday, September 23, 2009

How Do You Thrive?




While at the hospital, a discharge person was filling out forms for a program for Zoe. There were boxes to check for her "condition" to see if she qualifies. She was quickly filling out the top, "mental delay, check. physical delay, check, medications, check, special food diet, check. failure to thrive, check..."

Wait.

Thrive?

Happy 18 month birthday, Zoe! We're not sure how you got to 18 months without, as Dictionary.com defines: "prospering; being fortunate or successful."

Talk about thriving: my sister has a friend who just had a baby with Trisomy 18 last week. The baby was born at St. Joseph's in Milwaukee. The medical professionals there released mom and baby the day after she was born, telling the parents to hug and hold her, and...thanks for coming. See you.

It's a week later.

The baby's still alive.

Is she thriving? Check the box. What are we going to check for you?

Tuesday, September 22, 2009

An Interview With Melissa Bastian Black




God sends you friends. Melissa Bastian Black and I have talked over the past months trading blog comments and Facebook encouragements. Recently, she sent me this:

Hey Greg and the Batiansila Family. I'm doing a 5k this morning and I'm running in honor of Zoe. I want you to know that I am inspired by your family and your little girl. Right now I am battling my weight and have a goal of doing an Iro...nman in 2012. My battle is nothing compared to your little Zoe's and she and other children keep me going. If they can do it and battle every day of their young lives then I can do it and swim, bike, and run in their honor.

Then, she followed up with this:

Hey Batiansilas. I just ran my best 5k ever. I have never been able to do it in under 50 minutes and I did today. I did it in 47:19. Zoe helped me especially in the last mile. Give that little girl a hug and kiss for me. I couldn't have done it without her.

Which made me think. We all need to know more about Melissa Bastian Black. Here's part one of that interview.

Q: I had never heard of Trisomy before we had Zoe. How did you become aware of Trisomy?

MBB: My trisomy journey started on September 6th, 2008. I have been doing sprint triathlons and had decided that I wanted to eventually do an Ironman, so I decided that I would volunteer at Ironman Wisconsin.

The Saturday before the race I volunteered at gear check. I got to meet so many of the athletes and help them check in their gear. In walks this Cowboy with the biggest grin on his face. I helped him put his gear where it needed to go and noticed his hat. It said, "tri-ing for trisomy." I asked him what trisomy was and that is when I first learned about it.

He told me all about this precious children and their families. He told me that most doctors and medical professionals consider these children non-compatible with life and a lot of couples are encouraged to abort their babies. A lot of these children don't live long after they are born or don't make it to their first birthday, but he told me about kids who are making it past their first birthday and beyond. He was so passionate when he told me these things.

He told me how he was racing his Ironman races to raise awareness and was heading to break a world record. I believe Ironman Wisconsin was his 13th race that year and when I made a comment about that he would not let the conversation turn to him, but rather back to these children and their families. This conversation really touched my heart and I knew that day that my heart had been changed forever.

Q: How long have you known Michael Hennessey and how did you come to know him?

MBB: I met this Cowboy at Ironman Wisconsin 2008. When I asked him his name he told me that it was Michael Hennessey. After we talked I asked him how to get in touch with him after IMWI. I believe he gave me a card. I put that card away, we finished talking, and he left to finish his Ironman journey that weekend.

I got to see Michael on the run of the Ironman the next day. He was smiling as he ran through the aid station and I was able to cheer him on, even got a hug. I was working the finish line when he crossed it. He still had that smile on his face. I don't think he ever stopped smiling. That really left an impression on me. I cheered for him when he crossed the finish line.

I might have even given him his finisher's medal. Then he gave me the BIGGEST HUG ever. I didn't know if he would let go. It was not only the BIGGEST hug, but also the Sweatiest hug. I'll never forget it. I was so happy I had met him the day before, so happy to be part of his race day, and I knew during that hug that I had met someone very special with a wonderful cause.

I stayed and worked the finish line until the race ended at midnight. I cheered in the last runner, headed to my car, and then back to my hotel. I emptied my pockets onto the night stand and there was his business card all crumpled up. Before falling into bed I remember that I knew I had to contact this man. I believe I emailed him the next day.

We have been friends now for a little over a year. I am forever changed for the better from meeting Michael Hennessey.

Q: How did you find out about Zoe?

MBB: Michael Hennessey has a blog on his website www.ironmanforkids.com and he had asked people to pray for this baby named Zoe. I read about her and was very touched by her valiant fight. My kids and I started praying for her. I bookmarked your blog and follow her journey there and on facebook now. I like to call her my Zoe girl or just Zoe girl. She has captured my heart and I love her very much.

Q: How do you think Trisomy is handled and accepted in the U.S. today?


MBB: The fact that I was 34 and had never heard of Trisomy shows me that this is not a priority in this country. I was surprised to learn that Down Syndrome was Trisomy. The only people I have come in contact with that knew what Trisomy was when I talked to them, were families that I know with Down Syndrome children.

The fact that the doctors and nurses, in general, think these children are incompatible with life and never even give these children a chance in their minds shows me that this country is not accepting of children with Trisomy.
These families are not given any hope.

These doctors get to decide who is compatible with life and if it doesn't fit their definition then there is no reason to keep or even give birth to that child. (side note: I know families affected by trisomy that have had great doctors and nurses, so I want to give a shout out to the doctors and nurses who care and who give these little ones a chance.)

It's a shame that in 2009 that there is still so much prejudice in this country. People are prejudice based on race, wealth, and health and so much more. It's time to come together as a country and not judge people just because they are different then you.

Monday, September 21, 2009

The Honey Demographic

[scrippet]

GREG is lying on the bed, watching "Shanghai Knights" with ZOE lying comfortably on his chest. JEN watches more intently. You see, Chan choreographed all of his stunts in this one.

ETHAN enters holding a bottle of HONEY.

ETHAN
Can I have some honey?

GREG
On what?

ETHAN
(not understanding)
Can I have some honey?

GREG
What are you going to eat it with?

ETHAN
Just honey.

GREG
Just honey?

ETHAN
Just honey, in a bowl, with a spoon.

GREG
You want to- no! Who eats honey like that.

ETHAN
I do.

GREG
Who else?

ETHAN
Selah and Lisey.

GREG
No they don't.

ETHAN
(giggles)
Chinese guys.

GREG
Chinese guys eat honey in bowls with spoons?

ETHAN
...and farmers.
(giggles)
...can I?


[/scrippet]

Zoe's Fall Visit To Children's Ends

Apologies. Zoe and Jen made it home around 7 pm on Wednesday night. The delay was centered on a number of issues, not the least of which was the discovery that for the previous week, Zoe had been receiving the wrong amount of blood pressure medication twice a day.

Which explained the high blood pressure they measured while she was in the hospital.

Insert rant here. We continue to be grateful to Children's Hospital - Wisconsin. We are also amazed that they are the third best hospital in the world. What does the seventh best do?

Now that she's home, Zoe receives oxygen while she sleeps, which helps to reduce stress on her heart. Outside of that, the whole "why does she stay up for the majority of the night" issue has gone unresolved. On the other hand, if you've wondered what it might be like to sleep next to Darth Vader, I might be able to answer.

Right back into the maelstrom - I handled a long shoot Thursday followed by a shoot Friday, and Jen out to handle auditions for a few casts at a production in Hartford - which hopefully better explains the digital silence.

...and just home and some level of normal. Maybe some wine.

Special thanks to the Popes and Deirdre, who picked up the picking up while we were down a driver; Chris Pope for the taco stuff, perfect on audition night; Ben and Rebekah, who gave us pizzas and stuff that we're still plowing through; Avicom and everyone for putting up with crazy, Pastor Wendorf, a special reminder that sometimes, churches do care.

Tuesday, September 15, 2009

Zoe's Out

No breathing tube, she saw her mom in the hallway and tried to yell for her mom. She has cotton balls in her ears (team 2 put tiny little tubes in her eardrums). Relocated to the fifth floor. Jen's going to be with her.

First Team Through

First team has found that it is neither Zoe's tonsils or adenoids, but a sagging part of her breathing area. We'll keep you all posted as to what that means.

Monday, September 14, 2009

September 15: Convergence

Tomorrow three teams of doctors will tend to Zoe and hopefully give us some answers as to what's taxing her breathing while she sleeps.

At the same time, Zoe's big sister will get braces put on...and then in the coming weeks, seven teeth extracted.

Later tomorrow, three of Zoe's older brothers and sisters will try out for a play - two of the three for the first time.

It's funny because in years past, the third of these three statements would have led to quite a stressful night before.

Then again, the three who are auditioning did bring you work like "The Life of a Carrot." I think they'll be fine.

The song that's carrying me through is "This Is Our God" performed by Chris Tomlin and David Crowder*. (Alas, all I can find on YouTube is the non-Crowder version). Peace to our madness.



A refuge for the poor, a shelter from the storm
This is our God
He will wipe away your tears and return your
wasted years
This is our God
Oh... this is our God
A father to the orphan, a healer to the broken
This is our God
And he brings peace to our madness and comfort
in our sadness
This is our God
Oh... this is our God
this is the one we have waited for
Oh... this is our God
A fountain for the thirsty, a lover for the lonely
This is our God
He brings glory to the humble and crowns for the
faithful
This is our God

Sunday, September 13, 2009

My Next Breath




Morning breaks before this eleventh floor. It looks like no one is awake, that the city below is lifeless. That it could be me here in room 1105 and everyone else left.

Zoe's sats have been good. Better - while sleeping - when she's got some o2 flowing by her. Heard last night that Bat is wrestling hiccups for 30 hours, battling to breathe. Along with Zoe, Jen and me.

Where is the next dollar going to come from? Or the next breath? For me, where will the next idea come from? Where will the next time when I'm in the same room with my wife come from? When will the next time my family be together come from? Does God see what I'm going through? What I'm carrying? That I can't take another step? And what is he going to do about it?

Louis Giglio talks about Isaiah 40. He says the answer is a question. Have you not heard? The Lord is an everlasting God. His understanding...no one can fathom. He gives strength to the weary. Power to the weak. Those who stand right in the midst of the craziness, in the midst of the pain, dealing in the middle of the chaos, will receive renewed strength.

Saturday, September 12, 2009

Zoe Receives A Threat

A sweet, sweet friend of Zoe's has threatened her:


This Just In...

Scope Tuesday morning. Probably.

Sounds like...whatever presurgical assessments that were not made prior to the last planned procedure will occur on Monday, with an early morning scope Tuesday.

Running Out The Weekend Clock





One thing we've noticed through our time at hospitals is their reluctance to do anything on weekends. We observe that on the weekend, staff tries to keep numbers the same and run out the clock until Monday, when decisions can be made by the weekday staff.

It's the reason Jen and I both were excited about a Wednesday scope, a Thursday scope...and then lost a ton of happiness with a Friday scope. which became a.....

...we don't know. No one knows. It's the weekend! Maybe Monday, but could be mid-week. We've received zero answers.

Why sweat it?

Firstly, they had to stick Zoe repeatedly to put an iv in for surgery. It's still in. Why is it in now? For surgery....whenever that is. Surgery in four days maybe. Or two.

Secondly, there's a bunch of kids who have as-close-as-they-can-get-to-normal lives who are suddenly in code-red living, where you may or may not see a parent or either parent once a day.

Thirdly, there's the whole marriage-in-exile aspect of this mess, which includes gems like me instant messaging my wife "What's wrong?"

Fourthly...this costs money right? As far as I can estimate, these super-nice and dedicated professionals are waiting for surgery, like me and zoe and Jen and our family. It's just that I'm paying those super-nice and dedicated professionals to wait.

Yesterday I was listening to the lead singer of Tenth Avenue North talk about the book of James and his commentary on Job. The lesson is: persevere and cling to the Lord, because this story is about His goodness.

10-11Take the old prophets as your mentors. They put up with anything, went through everything, and never once quit, all the time honoring God. What a gift life is to those who stay the course! You've heard, of course, of Job's staying power, and you know how God brought it all together for him at the end. That's because God cares, cares right down to the last detail. (from a paraphrase called "The Message")

Deep breath.

Look, I know I'm not Job. Not by a long shot. There's an anonymous commenter on this blog who writes gems like the one on the right. He/she is always there to remind me that I'm not Job.

But this sucks. Jen was telling me yesterday that for her, everything is a fight. We both include our work, struggles in and out of the house.

I will openly admit my jealousy of almost everyone's Facebook status today. Gotta find some staying power.

Friday, September 11, 2009

Zoe Just Went In -No She Didn't. REVISED.

For her scope.

Zoe went in and then Jen witnessed a vigorous discussion by the doctors (ENT, anesthesiologists) regarding where (i.e. what bed) Zoe was to go after surgery.

The anesthesiologists refused to operate because there was no PICU bed available. Was this something that could have been determined...oh I don't know...before they carted her off to surgery? Perhaps.

Their disagreement resulted in postponing the surgery until next week. Sometime.

Jen's going to try and find out when next week they plan to have the surgery..

They apologized to Jen.

Thursday, September 10, 2009

SCOPE TOMORROW

Jen just signed the consent form, and the scope's tomorrow. The doctor was very pleased with Zoe's 02 sats last night, and wants the ENT team on hand for the scope because if they do see an obstruction, they can remove it while Z is under.

At this time, the thought is that given her night last night and the observation that her sats are very good when she lies on her side...that we'll have the little bug home soon.

Praying for a good scoping tomorrow.

A Note To Hospitals Everywhere

Dear Hospitals,

If you make changes in your careplan for a child, please consider telling parents your plan has changed.

Thanks,

Greg and Jen

Yeah. That scan for yesterday and today - the one where we couldn't feed Zoe after midnight, all night - was postponed. Until tomorrow. So, Zoe could have eaten. If we were told. But we weren't.

Wednesday, September 09, 2009

Maxin' Waiting For A Scan



Sats are fine now. Pastor Wendorf visited. Waiting on a neck Xray and then the scope. Zoe is relaxin'.

Pray - UPDATED 11:20 AM CST

Zoe was admitted to Children's this morning to try and find out what can be done about her terrible sats when she sleeps. Could be tonsils and adenoids removed, could be a tiny tiny cpap mask...could be even more dramatic measures.

Doctors will be scoping Zoe to find out the level of her obstruction and make decisions about a course of action. She for sure will be at Children's overnight.

some better news: HEY HEY HEY....IT'S FAT ZOE! 12 lbs 2 ounces. that's up 7 ounces since last weigh-in.

Sounds like scope won't take place until either tomorrow or Friday.

Dad has lost five pounds since last week.

These are two good people. I've been contemplating what life would be like without either, without one. It's just stifling.

The sun rose today, and both are with us. So, pray.

Tuesday, September 08, 2009

AE & Zoe Update

Saw my dad this weekend. He had a rough time of things...dealing with nausea, just having trouble performing simple digestive tasks. The big goal is that he eats, gains weight, so that perhaps this newer treatment can be used. All of that is pushed aside if he struggles like he did this weekend.

Pray for Bat. His whole life he's been fighting, and it's hard now sometimes for him to figure who or what to fight against. Maybe everyone. He's a tough guy, and he needs prayers and a hand of gentleness on his soul.

Jen and Zoe went in for Zoe's sleep study, and the initial word is not good. It's likely she'll be admitted tomorrow morning so that the doctors can decide how to deal with Zoe's terrible pulse/ox and co numbers while sleeping.

Thursday, September 03, 2009

A Peek At What I've Been Up To

Here's a video we did for Airstrip Technologies, a company owned by two men who love the Lord. The application was chosen by Apple as one of it's four highlighted iPhone apps this year at its developer's conference, and this video is currently being used around the world as part of Apple's Healthcare Roadshow.

Monday, August 31, 2009

Imagine This

A letter sent out last Friday:

Dearest Family and Friends,

Today, Friday, August 28, Bat had his first appointment with his Green Bay oncologist, Dr. Winkler, since his discharge from Mayo Clinic. Overall, Dr. Winkler is pleased with Bat's improvement. His liver function test (bilirubin) has improved and is now in the normal range. The liver enzymes remain elevated, but they have been for quite some time, and are expected to remain so. This is no surprise and to be expected. The protein in his blood has improved, but is still slightly low. This also indicates improved liver function as well as definitely better nutrition.

Dr. Winkler examined Bat's legs, and he felt that the amount of swelling that is present is acceptable. The swelling is due to a combination of factors, which include compromised liver blood flow due to the the tumor, the aortic stenosis, and the still mildly reduced blood protein levels. He did not feel that the swelling was of any major concern unless it would dramatically increase, in which case a mild water pill (diuretic) would be helpful as needed. Continued walking and exercise will also help minimize the swelling.

Bat was having very mild pain today, but he had not taken any Oxycontin in 3 days. Dr. Winkler explained that the twice daily use of the 12 hour release pain medication (oxycontin) was necessary for satisfactory long term pain control. He stressed that Bat was on a very low dose of oxycontin. Dr. Winkler instructed Bat to resume taking the oxycontin on a regular basis, and to use the oxycodone only on an as needed basis if he had episodes of increased pain.

He examined Bat's gout-afflicted toe, and felt that it was responding nicely to the medication. Hopefully it will continue to improve, but if he has another flare up, then Bat should contact Dr. Winkler for another prescription.

Bat has been taking lactulose to reduce the amount of ammonia in the bloodstream, as well as to prevent constipation, with its accompanying nausea and/or vomiting. This has been working well, but with the improvements in liver function, Dr. Winkler wishes Bat to continue on the lactulose for only one more week. If needed, it can always be restarted in the future.

All of this, of course, was good news, but the best news was yet to come. Dr. Winkler feels that if Bat's general condition continues to improve, there is a fairly new drug which could be tried to slow the tumor growth. Unlike most conventional chemotherapy, this drug is given as a pill, and the side effects are usually quite mild, with diarrhea being the most common side effect. He does plan on discussing this option with Dr. Pitot, and hopefully it may be started in 2-3 weeks. Bat has a follow up appointment with Dr. Winkler in 2 weeks.

The question was raised whether a trip would be possible in the near future, and Dr. Winkler again felt that if Bat continued to gain strength, and to exercise, that traveling would be a very likely possiblilty following his next visit in 2 weeks.

All in all, a very upbeat and positive visit to the doctor. At this point, it certainly seems that Dr. Winkler is anticipating that Bat will have quality time in the future. We can only pray and hope that he is correct.

Once again, thanks for all your prayers and good wishes.

Gary and Fran

Sunday, August 30, 2009

Ethan And Aidan And The Scorpion

Hey everyone, please look out for scorpions in and around your bedroom. They're very dangerous. Scorpions are - wait, I'll just let Ethan and Aidan tell you.

Friday, August 28, 2009

Roller Coasters and Toasting




Big Friday came and is being celebrated in every corner of the Bat Universe.

Big Friday saw Josh, after being diagnosed with coronary artery vasospasm, receive his orders - take around five meds, no more caffiene, better diet - and was released.

Big Friday saw Zoe riding in style in her new stroller - worth more than either of the cars in our driveway - that lets her ride in comfort, support...and lets her see. Thank you, Humana Healthcare.

But the biggest of Fridays goes to....

Bat, who went to see Dr. Winkler, his long-time oncologist. Dr. Winkler was not present while Bat spent his time at the Hospital That Will Not Be Named. Honestly guys...we all thought this was the visit where Dr. Winkler used terms like "being brave" and "hanging on."

Instead, Dr. Winkler said he kept looking and looking for some drug that might help. As in, not help Dad die with dignity, but as in, help him live.

Imagine that.

And he found something. He thinks he found something.

While Doc Winkler was acting like a doctor, Bat was acting like...well, Bat. The physical therapist told him to get up every hour and move, and so he moved. Around the kitchen island. Down the driveway. Working out with a piece of equipment from Val Centanni down South.

And eating. Three pretty squares, and some snacks.

So, Dr. Winkler has announced that the Sutent will begin in the next few weeks.

Look, all of this medical stuff is a roller coaster. We're up, and it very likely could go down again. But you know what you do at the top of those big hills? You point heavenward just like we did at the deepest valley.

So we Bats raise our hands in praise of a God who saw fit to give us a Big Friday.

And, we Bats raise a glass:
to rollercoasters, Sutent, hope, Heaven, Dr. Winkler and Rocky Balboa.

[scrippet]

Ext. NY SIDEWALK - NIGHT

ROCKY

The world ain’t all sunshine and rainbows.
Life will beat you to your knees and keep you there permanently if you let it. You, me or nobody is gonna hit as hard as life.
But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward. How much can you take and keep moving forward? That’s how winning is done!

[/scrippet]

Wednesday, August 26, 2009

Oh My Soul





The Call performed by Josh

Found out today that my brother-in-law Josh is battling some true problems with his heart. He's in the hospital now, and the experts say he's experienced at least two heart attacks. Josh is 22. He's the guy I talked about here, who opened for Robbie when Robbie Seay sang for Zoe last year.

I don't know about anything. If any of you had your money on "Greg" in "person most likely to have a heart attack," turns out you were wrong. And that's with the two or three hours of sleep and the kids and the kid and the exes and the divorces and the agency pressures. Nope. Wasn't me.

If you had "Greg" in the "person most likely to break into tears spontaneously," then you can probably collect. We're all so fragile. We're all so strong. Zoe's lying in her car seat next to me, oblivious to liver cancers, heart attacks and financial strife. I'm thinking the way Zoe sees it, she's got very few problems in her life, except her mom and dad won't stay awake with her. And she can't figure out why. Zoe of the condition incompatible with life. Fragile Strong Zoe.

My father, the one with the ugliest liver at least one doctor has seen, called on the spiritually hungry at Brown County Mental Health Center this Sunday. He talked to me on the phone tonight, because I don't know what I'd do if I couldn't talk to my dad at times like these. "You can't bear this," he warned, "this isn't for you to bear." Fragile Strong Bat.

Fragile? Not sure. Strong...yes. But slightly frazzled. That's Jen. Packing lunches and trying to match socks while she gets her three hours of sleep and operates as the rock-type at the hospital for the Popes.

And then there's Josh. Kellen was telling me tonight that Josh held Selah as a baby, has been friends - a brother, even - longer than his little brothers.

Robbie sang this at Zoe's concert last year. It is, as far as I know...the only recording of Robbie singing this song. Thank you Robbie.



When clouds veil sun
And disaster comes
Oh, my soul
Oh, my soul
When waters rise
And hope takes flight
Oh, my soul
Oh, my soul
Oh, my soul

Ever faithful
Ever true
You I know
You never let go
You never let go
You never let go
You never let go

When clouds brought rain
And disaster came
Oh, my soul
Oh, my soul
When waters rose
And hope had flown
Oh, my soul
Oh, my soul
Oh, my soul

Oh, my soul
Overflows
Oh, what love, oh, what love
Oh, my soul
Fills hope
Perfect love that never lets go

Oh, what love, oh, what love
Oh, what love, oh, what love
In joy and pain
In sun and rain
You?re the same
Oh, You never let go

Wednesday, August 19, 2009

Death Panels And The Extra Chromosome

I'm tired of people spouting off that Sarah Palin is employing hyperbole and political vitriol when she uses a term like "death panel." This one is from renowned health care expert Roger Ebert. Yeah. The guy who gave "Curly Sue" three stars.

"Of course the term is inspired by a lie. There are no conceivable plans to form "death panels" or anything like them. The Obama plan, which has some bipartisan support, doesn't seek or desire to get involved in any decisions about who should live and who should die."

Of course.

Jen and I have experienced medical professionals who find our pursuit of care for our daughter to be selfish and not in Zoe's best interest
. "She'll always be like that," the pediatrician told Jen. I dare someone to explain how this attitude won't simply be more organized under a single-payer system.

Oh, Greg with his Red State scare tactics and pro-Palin rhetoric. If I'm engaging in factless assertions, then explain this article from the UK. "...Carol said she had the impression that Dimavicius(of the NHS Down Syndrome screening programme) was distinctly unsettled by the figures which showed that an increasing number of women were resisting the pressure to abort babies diagnosed with Down's."

Isolated incident? What about this?

No, Greg and Ms. Palin. There will be no death panels. We're not barbarians like the Brits.

Do you expect me to wait and let someone test this on my daughter just so I can be proven right or wrong?

Tuesday, August 18, 2009

Batiansila




Batiansila

by Selah

I am a Batiansila and I am very proud.
I love my family.
My family is like a fire no one can stop us from heading toured the goal.
We are big but that is good more people to love and more to praise God.
We all do believe we all do praise we all do sing for him.
no one can stop us from preaching teaching learning telling sharing the love of him.

I AM A BATIANSILA AND I AM PROUD

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