10 Weeks

Jen tried playing with Zoe a little yesterday, which elicited some crabbiness and a few big smiles.

Where are we going? Where is this 10 week old developmentally? What can she see? What is she thinking? Trisomy 18 babies are prone to hearing and vision problems. We're going to revise the hospital's grave diagnosis of no hearing. Zoe can hear. Ethan cut his knee hurting today and was wailing the wail of the four year old with a skin wound. Zoe woke up.

There are stories of Trisomy18 babies making it past the sixth month. There aren't similar stories about babies with tetralogy of fallot - Zoe's heart condition - making it very long. The cardiologist had told us before Zoe's birth that in studies done on 3rd World countries of children who had tetralogy of fallot, none had survived past the 2nd or third year.

Ever since we ordered the oxygen machine, it has sat in the corner, mostly unused. Zoe hates it. It might have been aversion therapy for her, because as long as its been here, her breathing has been better.

Miracle baby? What is a miracle? Today's miracle was that in the above story, where Ethan was wailing, Zoe was in a bouncy seat. That's right, Jen got to put her down for a few minutes. Maybe Zoe is getting old enough to allow her mom a few minutes of movement without holding her? Maybe.

At ten weeks, we can turn our eyes and thoughts to tonight's meal and Kellen's birthday. A lawnmower grinds a welcome sound and smell into the morning air. Puffy clouds flit across the sky and boats rocket and float outside my back window. Elise is pushing Ethan in a doll baby stroller. He has a tube in his mouth that he says is to help him breathing. I guess our homelife isn't all that normal. But it never was.

Courage In The Face Of Reality

(God) sees as well as you do that courage is not simply one of the virtues, but the form of every virtue at the testing point, which means, at the point of highest reality. A chastity or honesty, or mercy, which yields to danger will be chaste or honest or merciful only on conditions. Pilate was merciful till it became risky.

-C.S. Lewis

Friday Nuggets

Tasty nuggets for blog consumption -

1) Turn your praying eyes north to Luxemburg, where Bat and Christa are encountering their share of trial, stress, and ignorance. It's obvious to me that Zoe is in my life so that I don't start calling area rental places for a flamethrower.

2) Bat and Christa. Married 50 years on June 15. It's a celebration begging for Bat to lead lookers-on in the "Electric Slide."

3) Cale was confirmed a few Sundays back. Cale is Renee's son and Renee sent pictures which will go up here really really soon.

4) Teia, Isabel and Kellen are done with school. Grades to follow, but we're glad we made the finish line.

Tracey Pics

For newcomers, another key plot point in the screenplay-that-is-my-life is/was Jen's sister Tracey. Tracey tried and tried to have a baby...tried so hard she was on Oprah as a guest, to talk about how hard it is to try. Meanwhile her sister had two kids and was pregnant with her third.

Now Tracey's expecting twins and we've got Zoe.

There's some brilliant pics of Tracey here. It's no Sam Provenzano, but very nice.

Zoe! Zoe! Zoe!

At first I was going to name this entry "Diehard V", starring Zoe B.
The last 24 hours have been filled with a lot of wailing on her part,
culminating in a visit to Dr. Estill.

Dr. Estill has told us these facts:
1. Zoe weighs 6 pounds 7 ounces. (I think that puts her up a weight class)
2. She has tummy troubles, which is making her uncomfortable.
We have a strategy for that.
3. Dr. Estill has told us to start setting up regular appointments.

When we first met with her, she told us to hold off on making appointments. (Reason being: No need to book a one and three month if you're not going to be around one or three months.)

But the more I think about it, especially since I just saw the TV edit of
it last night, is Rocky. The underdog's underdog. Rocky is special because he knows the truth. He has realistic goals.

INT. ROCKY'S APARTMENT - DAY

Rocky arrives at his apartment... Adrian is asleep on the couch. He lowers himself beside her. Her eyes open.

ROCKY
... Can't do it.

ADRIAN
... What?

ROCKY
... I can't beat him.

ADRIAN
Apollo?

ROCKY
Yeah, I can't beat him.

Adrian touches his face.

ROCKY
I been watchin' the movies --
studyin' -- He ain't weak
nowhere.

ADRIAN
What're we going to do?

ROCKY
... I dunno.

98.


ADRIAN
Oh, Rocky -- you worked so hard.

ROCKY
It ain't so bad, 'cause I was
a nothin' before --

ADRIAN
Don't say that.

ROCKY
C'mon, it's true -- But that
don't bother me -- I just
wanna prove somethin' -- I
ain't no bum... It don't
matter if I lose... Don't
matter if he opens my head...
The only thing I wanna do is
go the distance -- That's all.
Nobody's ever gone fifteen
rounds with Creed. If I go
them fifteen rounds, an' that
bell rings an' I'm still
standin', I'm gonna know then
I weren't just another bum
from the neighborhood...

The fight is on. We have seen all the facts, and we've heard all of the doctors.
Zoe's blocking 80% of the blows. You're just starting to feel sorry for -

ANOTHER ANGLE

COMMENTATOR #1
The Champ stings the slower
challenger with jabs at
will -- Balboa blocks eighty
percent of the blows with his
face -- Creed doesn't look the
best he's ever been but is
moving smoothly -- Creed snaps
out a triple combination that
backs Balboa into a corner --
oh, a solid hook by Creed, a
master of fist-men.

COMMENTATOR #2
The Champion is smiling and
toying with the man -- trying
to give the fans their money's
worth and make a show of it
with the badly out-classes
challenger -- Another left to
right combination. I feel
sorry for --

COMMENTATOR #1
Creed is down!!!

ANOTHER ANGLE

Rocky suddenly explodes with an upswing hook to the jaw.
Creed is dropped. The arena EXPLODES. Creed's eyes show
disbelief. So do Rocky's.

Rocky backs into his corner... Mickey and Mike yell at him.

MICKEY
You can do it! *&^%$#$#, you
got the power! The body, get
the body!!! Ya got him goin'!

REFEREE
Six!... Seven!... Eight!...

So chant it with me. Zoe. Zoe. Zoe. 66 days in. She's going the distance.
Cuz no one's ever gone the distance.
She knows she can't beat him. She just wants to be standing when the bell rings.

Remember

A day late...with apologies.

from "A Few Good Men"...

SAM and JO stand there uncomfortably for a moment.  JO begins
          packing up her things.

                              SAM
                  Why do you like them so much?

                              JO
                           (pause)
                  'Cause they stand on a wall.
                           (beat)
                  And they say "Nothing's gonna hurt you
                  tonight.  Not on my watch."

Day 64 Of The Stroll

“It is always the simple things that change our lives. And these things never happen when you are looking for them to happen. Life will reveal answers at the pace life wishes to do so. You feel like running, but life is on a stroll. This is how God does things.”

-Donald Miller

update

with apologies to Chris Rice, I changed the song from "Naive" to "Happy Is A Yuppie Word" on a previous post. It's a modern day Ecclesiastes. Its cool video is here.

2 "Meaningless! Meaningless!"
says the Teacher.
"Utterly meaningless!
Everything is meaningless."

3 What does man gain from all his labor
at which he toils under the sun?

4 Generations come and generations go,
but the earth remains forever.

5 The sun rises and the sun sets,
and hurries back to where it rises.

Switchfoot's Jon Foreman on the song: A year ago I had a late night talk with a friend who stated the quote: "Happy is a yuppie word." I stayed up after he left, turned off the TV war and wrote a song about our happy, yuppie world. Turns out, Bob Dylan was the one being quoted.

"In 1991, when Rolling Stone interviewed Dylan on the occasion of his 50th birthday, he gave a curious response when the interviewer asked him if he was happy. He fell silent for a few moments and stared at his hands. 'You know,' he said, 'these are yuppie words, happiness and unhappiness. It's not happiness or unhappiness, it's either blessed or unblessed.'”

In The Last Month

Batblog has been visited by people from Uganda, Costa Rica, Chile, Brazil, Argentina, South Africa, Malaysia, Indonesia, New Zealand, Australia, China, UK, US, Spain, France, Germany, Italy, Greece, Slovakia, Slovenia, Philippines, South Korea, Canada, Switzerland, Bahamas, Slovenia, Singapore, Netherlands, Luxembourg, Bahrain and the Netherlands Antilles.

There's nothing more internationally appealing than to report that Zoe Elizabeth Batiansila is sleeping in my arms today, on her 9 week birthday.

What To Trust

Just got back from my friend Mipps' 40th birthday party and talked to some of you out there who read this. And I listened to you tell me almost ridiculous comments about the things I'm writing. Thank you.

Zoe has blessed me - for this moment - with an ability to see what you can trust. You can't trust the promise of new life. You can't trust that when you have a baby, she'll walk. Ask Steven Curtis - you can't trust that you'll see her go to prom. You can't trust your instincts.

Ask them in Myanmar or China what they can trust. You can't trust the earth. You can't trust the foundations of your home.

Ask my father - or Zoe - or Mipps, on his 40th birthday. You can't trust your body.

You can't trust young love or true love or best friends. Bosses fail you. The best marriage vows unwind.

You can only trust in ever faithful, ever true Jesus. Who loved us while we were still sinners. Who loves you today.

Happy Is A Yuppie Word
by Switchfoot


everyone dies
everyone loves a fight
nothing is sound
nothing is right side right
the evening comes
when the sun goes down in red
nothing is new
when will all the fighting end?
when will all the fighting end?

happy is a yuppie word
nothing in the world could fail me now
as empty as an argument
running down the life that won't cash out...cash out

everything fails
everything'll run its course
a time and a place
[for all of this] nothing war
everything [buys]
[cause] everything's got a price
nothing is new
when will all us failures rise
when will all the failures rise, rise

happy is a yuppie word
nothing in the world can fail me now
as empty as an argument
running down a life that won't cash out
everything is meaningless
i want more than simple cash can buy
happy is a yuppie word, word

i'm looking for an orphanage
i'm looking for a bridge i can't burn down
i don't believe in emptiness
i'm looking for the kingdom coming down
everything is meaningless
i want more than simple cash can buy
everything is meaningless
happy is a yuppie word

nothing is sound!

happy is a yuppie word
happy is a yuppie word
nothing in the world can fail me now
happy is a yuppie word, word.

Cry With Hope

Over 15 years ago my sister was getting married. She wanted to make sure that everyone in her family sang, so she asked me if I'd sing Steven Curtis Chapman's "I Will Be Here." I went through the music a bunch, and then, a few hours before the ceremony, I told Kirin I wasn't going to sing. I just wasn't sure.

After some cajoling and my brother offering to sing with me, I relented and sang for the first time. People loved it. It praised God. It felt awesome. It became the song I'd sing for every one of my sisters' weddings (which was a whole ton). Each time I sang it, it felt more

Years later, I had started singing with a praise team at my church. It was a new service and a young team, and the director was looking for opportunities to sing "anthems" or "special music" during the collection of offering.

Andreas and I sang another Steven Curtis song in church - "His Eyes." We loved the harmony so much that we sang it again for my Oma on her birthday. His eyes are always upon you.

Then the Kara, the director, asked me if I wanted to sing Steven Curtis Chapman's "Speechless."

Did I want to? Wow. That was a BIG song. It was big praise. It was an incredible song. Did I want to? Sure, I'd try. When we practiced it the day before, even with the first run, you could feel it. This was something special. Everyone just was transfixed by what God was doing.

I remember that Sunday now. I remember how my fingers lost all feeling while I was singing. I remember the hushed silence when we were done. I remember that moment as the moment when the praise team and I realized the opportunity we had to bring a special kind of praise to that gymnasium. We had turned a corner.

When some awful people took over 3000 innocent lives in September of 2001, I remember the confusion, the sadness, the anger. The pain. My friend Roger and I assembled some pictures into a slide show. And that Sunday following, I sat down on the ground during church and sang Steven Curtis's "Be Still and Know."

When we were asked to sing for a grief seminar for a funeral home, we decided to sing Steven Curtis's "With Hope." Amidst the intense sadness in the room, we were able to sing a song that said, "We can cry with hope."

I went through some incredibly alone and low times after singing there. At one point, Jen and I sang Steven Curtis's "Out There." " Out there/Someone needs a friend/Who'll walk against the wind/To a place that's strange and unfamiliar..."

I can't go on telling you these stories. There's more. Steven Curtis Chapman's music and his concerts have been with me through my life. His words at his concerts and his encouragement in his lyrics have saved my life. Have kept me from giving up. He is not a Christian artist. He is my friend.

So last night I was up late last night holding Zoe. She was eating quite a bit...and not breathing so great. And I saw that Steven Curtis's daughter had gone home.

So much of this story is hard. It doesn't make me question God. It does make me want to yell "Enough!" I know it's bossy, impudent. I know it's begging for less love, not more. But I'm tired, and weak and I hurt for my friend.

Please God. This young man, son of his father...accidentally harming his sister. Lift his head. Help my friend Steven Curtis, who welcomed three children from China into his home and God's family. I wish we could tell him what he has done for my family and in my life and do the same for him.

The Boys

Ethan walks up to me yesterday. He's got a blue shirt with a "Superman" logo on it. He's got a long sleeve shirt's sleeves tucked into the collar of his shirt. He's got a pair of white socks on his hands. He has a pair of white socks on his feet.

He hands me a belt. "Can you put this on me?," he asks, "Superheroes wear belts."

Amidst this tragedy are the comedic characters - Ethan and Aidan, who everyone calls "The Boys."

In one room, you'll find Jen, cooing to Zoe. In the other, you'll find the boys, jumping from one bed to the other until they break the slats holding the mattresses up.

In one room, in the early morning, you'll find two exhausted parents trying to catch a few hours of sleep. In the other, you'll hear the crunching of an apple. And potato chips. Aidan woke up. He was hungry, so he went foraging for food.

I one room, you'll see Jen trying to feed a fussy baby. In the adjoining bathroom, you'll hear water running. "Ethan!," Jen yells, "what are you doing?"

Ethan is kneeling on the bathroom counter with a handful of hair gel. His hair is dripping wet. "I'm doing my hair like Troy Bolton!," he offers.

Yesterday our dear friend Nancy came by to find the two boys eating popcorn from a big bowl. They decided they needed utensils to eat the popcorn. Ethan had a huge wooden cooking spoon. Aidan went with the wisk.

I am grateful for the boys. There's another story you'll hear sometime about the boys, and how they came along amidst so much trial and tension. But it's so obvious why they're here.

"Jesus," Ethan likes to say with stern instruction, "died on the cross. And now He lives in heaven and in our hearts."

No News

No news is good news. Zoe's breathing is ok. We tried giving her oxygen today.

Bats at GreenLake

Teia captured some pics from this weekend on the water. I taught Selah how to cast and to watch the bobber...and she set the hook and reeled that bad boy in! A little pumpkinseed but she was ELATED!

Prom 2008 Revisited

Teia and Iz went to prom last Friday. They were sporting some fancy dresses and had a great time. Iz went with her the artist formerly known as her boyfriend and Teia went with no one but sat next a guy named Timmy. Teia and Iz will now field your questions.

If You Feel Lost And Tired

Tired? I'm increasingly concerned I'm speaking more of the defeat of death than the triumph of eternal life. I'm sorry.

I blame the sleep pattern. Zoe eats every two hours, and if she cries, you want to assuage it instantly so that she doesn't get too upset. So we hustle to feed her, try to keep her from crying too hard. And I'm not the one getting up for the lion's share of those feedings. I'm the weak one who wouldn't hear her unless I was elbowed.

She's breathing poorly. She has more tet fits than I've seen - which is where she kind of freezes up, stops everything, turns blue, then comes back to us. Jen's seen it enough to push her knees up, coo to her, get her going again. When it happened while Izzi was holding her, Izzi was ill prepared.

She's uncomfortable more now. Yesterday, she was really swept up in something - gas? pain? heart? - we don't know. But after some incredible mothering and cooing and a little Tylenol, she calmed down and conked out. On Friday, the visiting nurse took her pulse - 180 - and then sent us a prescription for morphine. We're not ready for morphine here, but we have the scrip now.

And so, in the midst of this, we find out that Robbie Seay is coming to do a concert for us. I told you guys before that everytime I'm about ready to go hide, when I feel like I could really just let it all out, or just vent like I want to vent...God sends something to remind me of His sovreignty. A reminder to be still.

I'm trying. I feel lost and tired. I - we - Izzi, Jen, Zoe, all of us - we keep holding on.

The Last Word

It's a beautiful Sunday morning. Young leaves are on the trees of the forest across the street, creating a stippled-green aglow with sunlight. The lake is calm. Kellen spent a long afternoon cutting the lawn yesterday, and its beautiful in the golden sun.

I've been cleaning up and cooking breakfast and thinking how close to somewhere else and someone else I am. I'm one friend away, one job away, one decision away from Hollywood and/or prison. From being single for life. From never divorcing. From Zoe never being here.

I thought I was planning, that I was saying something. I thought I saw where this was going. But God has a plan and the last word.

From a study at Bible.org: (and forgive me, I am a sucker for people who translate in front of me)

Proverbs 16:1 The plans of the heart belong to man, But the answer of the tongue is from the LORD.

The overall emphasis of this verse is that man proposes (plans) but God disposes—the results are in His hands, His authority, His power—not ours.

“Plans” is the Hebrew m^u&r*K, which means “preparation.” The verb of this noun is a word of preparation, arranging, planning. It may mean to “arrange in order, to compare.” Though authorities disagree, the hiphil form may mean “to value, estimate.”

Our word, m^u&r~K occurs only here in Proverbs 16:1. It looks at the plans we make based on looking at all the issues, options, responsibilities, and consequences in order to compare them so we can choose the right course.

Our passage asserts this is a legitimate responsibility of man. Literally, “to man are (belong) the plans, preparations of the heart.” We are created in God’s image. God has given us minds and we are to use them wisely, but also submissively, recognizing God’s sovereign authority as the One who sits in the heavens.

So we read next, “But the answer of the tongue is from the Lord.” At first this does not seem to be related, but it is. The tongue is symbolic of our speech and acts by which we seek to carry out our plans. McGee says, “You may plan and I may plan or arrange things, but when the time comes to speak or act, God is the One who is going to have the last word. We may make a great boast, but only God can give the final answer.”¹ It is the Lord who ultimately establishes our plans and allows them to come to fruition.

The meaning of this verse is akin to verse 9, “The mind of man plans his way, But the Lord directs his steps.” This emphasizes that God not only has the last word, but also the soundest and best. And He has the power and authority to do it.

Love Wins
by Robbie Seay Band

It’s a big world, we are hoping
For a big change, we are broken
In the fading light of a dying sun
We cry for redemption

There is hope, there is hope, there is hope
But everyone who’s lost will be coming home
And everything that hurts will be whole again
And love will be the last thing standing

Can’t stop, you can’t stop the seasons
Don’t stop, don’t stop believing
Keep on dreaming of the day when it all will change
Believe in the end, love wins
If you’re waiting for the time when your sun will shine
Oh, look above cause love wins

If it hurts you, just breathe in
When it pains you, just believe in
The radiant light of the morning sun
We can find our redemption

Love is strong, love is strong, love is strong
It's been there holding you all along
Everything thrown away will be new again
And love will be the last thing standing

There is hope, there is hope for my lonely soul
There is hope, there is hope to be made whole
There is life, there is life to be set free
There is life, there is life surrounding me

There is hope, there is hope for my broken heart
There is hope, there is hope for a brand new start
There is life, there is life give me eyes to see
There is life, there is life you have captured me

8th Wasn't The Greatest Week

It's easy for me to count weeks with Zoe. She was born early on a Saturday under a not-quite-full moon.

Zoe struggled at times this week. Back to some pretty bad breathing sporadically. She had a few fits where she stops breathing completely and her face starts to turn blue. When she comes back from those fits, she's exhausted. Yesterday the visiting nurse came and said her pulse was 180.

Prom 2008

Teia & Iz went to Prom last week. I'll get more pics soon....

Jen Turns 30

Jen's 30 today. Zoe gave her a present with a wailing cry for formula at 4 am. Zoe eats 2 ounces at then loses interest, which keeps her hungry a good part of the day.

We're going to take a trip down to Chicago, not pay someone (sorry someone) and go see Wicked. If you know Jen, she spends a good part of her time singing Broadway showtunes or directing people on how to do it. Seems like the thing to do.

God's Response To The Last Post

From today's My Utmost For His Highest:

God is the Master Designer, and He allows adversities into your life to see if you can jump over them properly—"By my God I can leap over a wall" ( Psalm 18:29 ). God will never shield you from the requirements of being His son or daughter. First Peter 4:12 says, "Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you . . . ."

Rise to the occasion—do what the trial demands of you. It does not matter how much it hurts as long as it gives God the opportunity to manifest the life of Jesus in your body.

May God not find complaints in us anymore, but spiritual vitality—a readiness to face anything He brings our way. The only proper goal of life is that we manifest the Son of God; and when this occurs, all of our dictating of our demands to God disappears.

Our Lord never dictated demands to His Father, and neither are we to make demands on God. We are here to submit to His will so that He may work through us what He wants. Once we realize this, He will make us broken bread and poured-out wine with which to feed and nourish others.

Before Zoe

Before Zoe came, I would cry about Selah. Selah is Zoe's big sister. Just a few months before Zoe was born, Selah was diagnosed with type 1 Diabetes. I was devastated. I was broken. I felt like I had let something awful happen to her. I wanted to fight, but you can't fight medical certainty. For the rest of her life, Selah will have to monitor her blood sugar and give herself at least three insulin shots a day.

Selah's fine. I think she's a little frosted when it's brought up at all. I actually did an interview with her here and you can hear her "c'mon, Dad..." tone. But I felt...I feel like even though she doesn't know we lost something, I know we did. We lost something with her condition. So you keep your chin up.

Before Zoe came, I would cry about having to move. I knew it was inevitable. Either it would be because the rent would be too much, or it would be because our landlady was going to sell her home and move into ours.

We knew both were strong possibilities when we moved here, but it was hard to pass up. It's such a place of peace to us. It's kind of our outpost. I would pray...I still pray to God desperate, pretty insolent prayers begging that there be some way for us to stay here. I know I've put the kids through my share through the years. Teia has lived in 12 different places with me in her 17 years. I just want to stay. We are trying to keep our chin up.

Before Zoe came, I'd get upset about a lot of things. About how Jen and I don't sing anymore. About a missing church home. About my Dad's cancer. About the bills. About the lost friends and relatives.

I wish I could tell you that Zoe has made all of those things less, that those things have gone away. Those are some of the things many of you all didn't hear about before Zoe. Or like me, you kinda forgot. I guess the best thing she's done is make it easy to ignore them. I'm more caught up in Jen's words last night as she held Zoe - "...I get more and more attached..."

So my landlord drives up today. My heart sank.

She was just saying hi. But as she got out of the car, I went inside and I stared at the lake and I shook my head. I feel like I don't have many prayers left. I guess through all the trials, God has been preparing me for this one. This is a life held together by a lot of prayer, keeping our chin up and a bad memory.

The Wonderful Sam Provenzano

Sam sent us pictures she took last month, and they're just as wonderful as we noticed in her slideshow. Sam is trying to convince us that Zoe is the angel, when she's the person who drove over 2 hours to take pictures, comments on the blog and even sends emails checking after Jen.

Thank you Sam for showing us such love. I hope you all have a friend in your trial like Sam.

Better Days, Better Color, Better Breathing

Zoe has decided to look pinker. She's doing this by breathing better. She also has decided to keep eating. She's getting very good at flopping her head around looking for her mom. Or the bottle. Or her mom, holding a bottle. As her mom's birthday approaches, Zoe looks to give her mom the same present that she gave for Mother's Day: a hungry cry at 5 am.

Meanwhile, Up North....

Turn your prayers to Bat and Christa, who are being moved from their home to somewhere. Such is the life of parsonages and the Missouri Synod. And, because I know what's good for me, that's all I'll say. Except pray for them.

Zoe's Sleeping Spot

If you hold her in your crooked arms, Zoe might sleep and she might look around. And she'll likely fuss. If you pat her and burp her, she'll calm down a little, but her heart condition doesn't like the vertical position too much.

If you put her down, she'll wail.

But if you lie back and let her lie on her stomach on your chest, she'll fall into deep snoring sleep until she's hungry again.

This of course, immobilizes the person who was thinking they'd hold her but now finds they're an enormous 98.6 degree mattress. But, I've been used for worse by worse people. Prop your head up and find the remote. Listen to her snore.

Mother's Day: Keep It Simple

The Tenth Law of Simplicity
Simplicity is about subtracting the obvious, and adding the meaningful.



I have been perplexed about this entry. All day. Besides it being dreary here, besides spending much of the afternoon with Zoe while Jen was out with her mom, sister and grandmother, I just felt like if I just wrote one phrase, it's all I could say. I have no miraculous C.S. Lewis quotes.

So I stumbled across the above quote, and it made me think I should just remove the obvious and add the meaningful.

Here's the meaningful: There is no love like a mother's. She holds you forever.

Josh's EP

Teia took this picture of Josh for his cd.

Zoe's uncle - Jen's brother, Josh - is the most gifted musician I'll ever meet. A long time ago, I sang with Josh long before I knew his sister. Long ago, he was rollerskating in the basement with Teia, Isabel and Kellen.

Some of Josh's undeniable gifts are here for you to enjoy. I say "some" because whatever you hear here is a fraction of the composer and musical savant he is. He's been blessed to record a number of songs with a recording company in Chicago. Let his label know he's the real deal. And he is. Please support my brother in law and friend, this wonderful talent.

Birthday

I tried to give Jen a break and make it through the night on another floor of the house behind a closed door with Zoe. Jen needs and needed a break for so many reasons, the top two being she's running auditions for an upcoming project this morning and she's been going sleep-deprived for weeks.

Zoe is sticking with us. She has some kind of troubled breathing every once in a while and her color isn't what it was. What that means to us...we don't know. The hardest part of this is trying to imagine what's going to happen tomorrow, or next friday (Mother's Day and Jen's Birthday respectively) and trying to plan is hard to envision without imagining the worst.

Deirdre asked me what I'm doing for Bat and Christa's anniversary next month. It seems an eternity away. Too far away to speak with any clarity.

As Lewis wrote, "Meanwhile the cross comes before the crown and tomorrow is a Monday
morning. A cleft has opened in the pitiless walls of the world, and we are invited to
follow our great Captain inside. The following Him is, of course, the essential
point."

So, my neck is sore and I'm only one cup of coffee into this day. But it's a new day, and I'm holding Zoe in my lap. It's a new day, baby. A week ago, we had friends over and Josh sang us some of his stuff, and then we broke into "New Day." It might just be the prettiest thing you've ever seen.

Zoe Update

Zoe is doing ok. It's a much better week than last week in a lot of respects. Her breathing is worrisome. It's shallow and at times, labored. The visiting nurse said her lungs are clear.

Zoe's color is a little less ruddy than it was. Sometimes when she cries now she has a blue tinge. This was an expected side effect of her heart defect.

She's still eating through the night. We're glad we removed her feeding tube all those weeks ago.

Tomorrow will be day 49.

Hard To Help

Are you hard to help?

I know I am. I know the family is. Part of it is beyond our control. There are so many moving parts in our family that if you said - I will give them X, it's difficult to say that X would serve everyone in our family. Or anyone.

"Do you need help with rides?," someone asked us. Yes. But it changes day to day. It's the kind of answer that might fascinate someone, but we're figuring out rides today for today. And the earliest we'd have known about today is probably last night.

What I'm saying is between Zoe and kids at one school for 1/2 day, kids at another for a full day, practices, jobs, my job, kids at a third school, groceries...sure, we need help with rides. But it doesn't flow into a normal calendar.

Same with food. Jenny likes mushrooms. The rest of us don't. Selah's diabetic, so we need to know the carbs in what she's eating to give her an appropriate shot of insulin. The boys...well, they're the boys. They're not quite catching onto pasta and sauce. They're trying. 9 people is a lot of people for X.

On the other hand, we're hard to help because we don't know why we'd need help. Our pride gets in the way, as does our stubbornness about retracting ourselves out of our own pit. One author I read says, "It's hard to hug stiff people."

It's an tall order. Facing a trial requires a "stiff upper lip" and "backbone." Our natural instinct is to either fight or flee. Being helped is neither. Receiving help requires humility.

This is the Batiansila's longform apology and thank you to everyone. We are not used to getting help but we are grateful for what you've been doing. Your prayers, your dishes. The gas cards. The Y membership! The visits. The earnest wishes of hope and thoughtfulness. You have been the face of Christ to us. Our prayer is to receive his hug with less stiffness.

In Joy And Pain

Never Let Go
by David Crowder Band

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

Ever faithful
Ever true
You I know
You never let go

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

What Jen Prays For - Bargaining Part II

Jen called to ask me if I was saying it was wrong to pray for healing. Which is a good question. I was actually leaving that open to responders.

Jen prays for two things: 1) if this is the way it is, Lord, the way it must be, please let her go to you quickly and painlessly 2) for complete healing.

One of Jen's friends asked her if she should be praying to remove a chromosome or add one? The prayer would be to remove one. From every cell in her body.

I stress I don't doubt God's might. My post was to show how I was trying not to doubt His will.

bargaining

of all the stages of grieving, bargaining is the most deceptively selfish.

On its face, it sounds kind of noble and insightful. We're begging God to rethink what He's done and consider an alternative. Perhaps you could give me a terminal illness. Here's a thought: perhaps Britney Spears' kid could have the terminal illness. Maybe one of those kids I see on those late night commercials in Africa could have the terminal illness.

Anyone who has a newborn knows that by the second or third night of a 3 or 4 am feeding which followed the 11 which followed the 1:30, you've now been broken. You're emotional. That's usually the time of morning/night where I look at Zoe and see her eating from her bottle, her eyes exploring the room's darkness and cry. You could have given this to me. She's just a little kid.

Here's a bargain I offered God this morning: how about you heal her? Think of the people who would be amazed and drawn to you if full Trisomy 18 was removed from her body! Huh? Think about it, God. I think it's what ran through the minds of these parents. They believed strongly that God was mighty, that God was capable, and that their daughter would be healed. Is there anything wrong with their faith?

I take nothing from God's might. If God wanted, He could make a Zoe from nothing, from the dying plant on my desk. If He wanted, He could remove a chromosome and Zoe could pick the music for her own funeral. But I'm hearing His answer, at least for now, and it's that your ideas are only ways for Greg's will to be done. I have a plan.

I Don't Belong Here

Wake up. Blink sleep from your eyes. Try to recount whatever you left in your brain from the night before. Somewhere between the shuffle to the shower and the water splashing and coursing off your skin, it starts to hit you.

I don't belong here. I don't. Our bravest attempts at beauty and attempting to answer God's call are routinely met with distrust, disdain and ignored. There's no such thing as a perfect fit. There's no such thing as a dream job. There's no such thing as home sweet home.

I have proof: a past littered with brokenness and pain; a present with uncertainty and questions. My father's cancer. Zoe. Divorce. A bad cylinder in our car. My boss. Our tenuous rental. Jen and I singing. Diabetes. A bad back. Bills and bills.

2 "Meaningless! Meaningless!"

says the Teacher.
"Utterly meaningless!
Everything is meaningless."

3 What does man gain from all his labor
at which he toils under the sun?

4 Generations come and generations go,
but the earth remains forever.

5 The sun rises and the sun sets,
and hurries back to where it rises.

6 The wind blows to the south
and turns to the north;
round and round it goes,
ever returning on its course.

7 All streams flow into the sea,
yet the sea is never full.
To the place the streams come from,
there they return again.

8 All things are wearisome,
more than one can say.
The eye never has enough of seeing,
nor the ear its fill of hearing.

9 What has been will be again,
what has been done will be done again;
there is nothing new under the sun.

10 Is there anything of which one can say,
"Look! This is something new"?
It was here already, long ago;
it was here before our time.

Sunday Visitors

Heidi and Phil came to church and then spent a sunny Sunday at the Lakehouse. It was wonderful to see my big brother and sister.

Phil and I took the canoe out to tour the lake. As we made it around the bend in the middle of the lake, my paddle snapped in half. So using my splintered paddle, into the wind, we gunned it back to shore. I'm familiar with paddling with something less than a full-sized paddle. Splintered, even.

Zoe's Curlyque

Ever since she's been a newborn, Zoe's had this little black lock of hair longer than the other hair on her head. It continues to grow. So do her bony skinny legs. And her fingernails.

Yesterday she was whining and fussing while her Uncle Phil was holding her. When her mom took her from Phil, she shut up right away.

We press on...on to prom night this weekend, Jen's birthday. We're thinking more about living than dying these days, and that's a gift.

Still Obeys

From C.S. Lewis' masterwork, "The Screwtape Letters." A senior devil is teaching a junior devil how to get a human to go to hell. (so..."The Enemy" is God. And we humans, to a depraved, sinister spirit, are "its.")

...He leaves the creature to stand upon its own two legs - to carry out from the will alone duties which have lost all relish. It is during such trough periods, much more than during the peak periods, that it is growing into the sort of creature He wants it to be.

Hence the prayers offered in the state of dryness are those which please Him best....He cannot 'tempt' to virtue as we do to vice. He wants them to learn to walk and must therefore take away His hand; and if only the will to walk is really there He is pleased even with their stumbles.

Do not be deceived, Wormwood. Our cause is never more in danger than when a human, no longer desiring, but still intending, to do our Enemy's will, looks round upon a universe from which every trace of Him seems to have vanished, and asks why he has been forsaken, and still obeys.

So Proud

Halfback delay, the way Coach Spera drew it up, was an ingenious 7-man flag football play. The wideout would run a deep route up the middle, sucking the safety and corner in. The backs would line up and hold as if to block. But the inside back was only faking a block. He'd slip out and run a bubble route in the zone the wideout had left.

On that day when I was in 7th grade, we played Atonement, and halfback delay ruined them. The safety turned in, and I'm not sure the defense even saw me, the littlest kid in my class, faking a block and then slipping into the flat.

Once I had the ball in my hands, it didn't matter how close they were. At that instant, I was my father, who played football from when he was a kid all the way through college, who told me he'd run a fly pattern and know "no one could catch me." No one was going to catch me. 90 yards. No one was going to catch me. At the endzone, for a flicker of a second, I was something older than me, sharing a moment of electric communion with victors past. I was my father, I was Jesse Owens in Berlin. I was Odysseus triumphantly returning home.

You've seen athletes experience it today, and you wonder why they're so jubilant. If it's a show. Maybe for some, but most are trying to explain that moment of oneness that is older than anything in their experience.

This is what God has given us - a chance to experience something that defies our experience and memory. An idea of more beyond what we can recall or prove. I look at my beloved and I am awed. Smitten. I am Jacob, his eyes fixed on Rachel. Tristan and Romeo. Shakespeare refining a word to a meter only he knows. I am dancing a dance older than me, a love old as time.

And truthfully, it can be a painful dance. I have been Judas. David, murdering to sate a lust. Peter denying his friend and teacher. It's an equally electric moment, and as old as Adam.

My mom wrote me a note when I went off to college. It was just a line. "Greg, we are so proud."

I look at my daughter on her 42nd day. Trisomy 18 babies don't live. She woke up early this morning and decided living was worth fighting for. She has a hole in her heart and an extra chromosome that bludgeon her, weaken her every day. But today, she is her grandfather, fighting cancer, rising and deciding life is worth living for. She is her great grandfather, awake in a prison camp with encephalitis and deciding that life is worth living for.

And I am my mother. I am God, looking down at his child and telling her and anyone who'll listen that I AM WELL PLEASED. Look at her. Look at her. That's my kid. I am so proud.

Zoe's Weight

It may be possible for each to think too much of his own
potential glory hereafter; it is hardly
possible for him to think too often or too
deeply about that of his neighbour.

The load, or weight, or burden of my
neighbour’s glory should be laid daily on
my back, a load so heavy that only
humility can carry it, and the backs of the
proud will be broken.

It is a serious thing
to live in a society of possible gods and
goddesses, to remember that the dullest
and most uninteresting person you talk to
may one day be a creature which, if you
saw it now, you would be strongly tempted
to worship, or else a horror and a
corruption such as you now meet, if at all,
only in a nightmare.

All day long we are,
in some degree, helping each other to one
or other of these destinations. It is in the
light of these overwhelming possibilities, it
is with the awe and the circumspection
proper to them, that we should conduct all
our dealings with one another, all
friendships, all loves, all play, all politics.
There are no ordinary people. You have
never talked to a mere mortal.

One thing i notice about Zoe's life-changing time with me is that her life-changing abilities may have more to do with me than Zoe herself.

I know that Zoe is a gift. That each breath she takes is a victory. That her smiles, her sighs, her eyes are all wonderments.

But can I not attribute the same glory to my other children? To you?

C.S. Lewis in the above "Weight of Glory" addresses our indefensible treatment of each other. How our actions are helping push someone to heaven or hell. Everyone is a Zoe, whose breaths are numbered, whose days are short. Whose frailty, while better hidden, is apparent.

We bear the weight of Zoe's glory. It is a heavy load. But we also should equally bear the weight of our neighbor and our daughter and our boyfriend's glory. What if any of those had days to live? Would you be so cavalier with them? Would you pray for them a little more? Take their words and pains a little more seriously?

Visitors This Weekend

Sister Heidi is planning on coming this way sometime this weekend and a crew of Avicomers hope to drop by.

Applause

Church last night was a festival of music from wave after wave of choirs. The most fascinating part of the night was our congregational response to the choirs. If the singers were kids, we applauded heartily. If the choir was comprised of adults, there was a latent moment of silence followed by an uncomfortable silence as the choir filed back to their pews.

Which instinct was wrong? The one to applaud children or the one to not applaud adults?

Well, some of you might posit, we can't have a service filled with applause. To which I'd answer...why? What are we afraid of? Is God displeased with applause?

Courtesy of Sam Provenzano

Zoe's Eye

Zoe presses her head into mom's chest and turns her head so she has one eye open...and she peers around. Looking, studying. Learning. Living.

Praise You In This Storm

Jen got into the car last night and begged God for a song. Then she turned on the radio and heard this. Pray for Jen.



Praise You In This Storm

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Sent To Try Us?

Lewis grieves the loss of his beloved:

How far have I got? Just as far, I think, as a widower of another sort who would stop, leaning on his spade, and say in answer to our inquiry, 'Thank'ee. Mustn't grumble. I do miss her something dreadful. But they say these things are sent to try us.'

We have come to the same point; he with his spade, and I, who am not now much good at digging, with my own instrument. But of course one must take 'sent to try us' the right way.

God has not been trying an experiment on my faith or love in order to find out their quality. He knew it already. It was I who didn't. In this trial he makes us occupy the dock, the witness box, and the bench all at once. He always knew that my temple was a house of cards. His only way of making me realize the fact was to knock it down.

35 days

after a doctor told us that Zoe had trisomy 18, she looks tired. It could be anything. But she looks tired.