Tuesday, June 30, 2009

Zoe Means Life At St. Paul's

8:30 came early Sunday morning. Zoe had finally fallen asleep at 7. I made some coffee and looked back in the room at the snoring mom and bean. Maybe I'll just get the boys ready and go with the big kids.

Then I heard Jen staggering out of the bedroom, her MOMBRAIN 2000 whirring into imperfect motion. She began giving orders about people's clothes and shoes and who should get some bottles...

We made it to church at 9:33, making the tail end of one of the pre-service anthems. Pastor Navurskis tapped me on the shoulder. "Can I talk to you a minute?," he asked, "the Spirit is moving me to ask you something..."

I followed him out and he asked me if I would bring Zoe up during the sermon. It was Life Sunday, he explained, and he had seen Zoe's big blues catch his eyes as he peeked into the sanctuary.

Of course. If I can tell anyone about Zoe and Trisomy 18 and Life...let me at 'em. We ended up sharing a bit of a story at the 9:30, the 10:45 and the 7 on Monday night.

1 Corinthians 2:9

9However, as it is written:
"No eye has seen,
no ear has heard,
no mind has conceived
what God has prepared for those who love him"



GREG is pushing a CART with ETHAN scrunched in the back. AIDAN is seated in the kiddie seat in the front.

Dad, can we get some waterlimon?

MMMM Waterlimon!

I don't know boys. Maybe not this time.


Maybe when we get food for July 4th. With the parade. Watermelon's aren't on sale yet.

I love Waterlimon. Have you had waterlimon?
(before GREG can respond)
You take water...

...and then you cut up the limons into pieces...

..and put them inna water. With sugar.
(smacks lips)


Oooh. Lemonade?

No. Waterlimon.

GREG shakes his head, picks up two lemons and tosses them at ETHAN.





Friday, June 26, 2009


Phase 1 - AE feels nautious, which is GOOD. The worse he feels, the more this procedure is working. The doctor found three vessels that have a possibility of being blocked. So he's going to going to block one vessel at a time. One was blocked. AE is on his back...

and maybe they'll try doing Phase 2, the second vessel.

Battle Begins

AE is getting a massage to relax him before he undergoes round one of the painful, sickening healing called embolization. ,

Christa and Kirin are there at Mayo, along with the Millers...all waiting for the procedure to begin.

All I can pray is that AE does what he taught me: fight. Set your jaw and draw your line and fight.

He fights and we pray. Pray hard.

Tuesday, June 23, 2009

Thank You DCB

Been waiting for this song and I didn't know it. Listen.

How He Loves
by David Crowder Band

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us so,
Oh how He loves us,
How He loves us all

Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves.

We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
So Heaven meets earth like a sloppy wet kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…

He loves us,
Whoa! how He loves us,
Oh how He loves.
Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves.

Well, I thought about You the day Stephen died,
And You met me between my breaking.
I know that I still love You, God, despite the agony.
...They want to tell me You're cruel,
But if Stephen could sing, he'd say it's not true, cause...

Cause He loves us,
Whoa! how He loves us.
Whoa! how He loves us.
Whoa! how He loves.
Yeah, He loves us,


AE's Cancer Update

From an email sent to a huge list of people, so I feel okay sharing with you all:

Dear Loved Ones,

As most of you are aware, Bat had a follow-up appointment at Mayo Clinic on Monday, June 22nd. In the morning, there were the usual blood tests followed by an MRI scan. Late in the afternoon, Bat and Christa saw Dr. Pitot, who reviewed the tests and MRI scan. The blood tests were generally good and revealed no appreciable changes. The MRI scan was compared to the MRI scan taken at Mayo Clinic 6 months ago, and the MRI scan taken at St. Vincent Hospital in Green Bay approximately 5 weeks ago. The scan showed no change from 1 month ago, but there has been definite progression of the tumor in the liver compared to 6 months ago.

At this point, it appears that the monthly injections Bat has been receiving are no longer sufficiently effective at slowing the tumor growth. Dr. Pitot feels that Bat is definitely a candidate for further treatment, and has explained 2 possible treatment options.

The first option would be to re-embolize the liver in an attempt to cut off the blood supply to the tumor and thereby temporarily stop or slow it's growth. It would require 2 or possibly 3 trips to Mayo Clinic, each spaced about a month apart, and would require hospitalization for 2 to 4 days, maybe slightly longer, at each session. Bat had this done 7 years ago and had good results. Dr. Pitot did emphasize that repeat embolizations are usually not as effective as the first embolizations, but he felt it was definitely worth considering. He believed that the risk of serious complications, such as liver or renal failure, to be maybe 5 to 10 percent, which he thought to be acceptable in view of the serious nature of Bat's disease.

The second therapeutic option would be to start chemotherapy, which could be administered here in Green Bay by the local oncologist, Dr. Winkler, in collaboration with Dr. Pitot. This would require intravenous administration of probably 1 or 2 chemotherapeutic drugs on 5 successive days as an outpatient, followed by a 3 to 6 week rest period. The cycle would then be repeated for as long as the regimen was effective. Bat would probably experience the usual side effects such as nausea, vomiting, hair loss, loss of appetite, sores in the mouth, and diarrhea, and these would occur following every successive round of drug administration. Dr. Pitot believed that the risk of serious side effects requiring stopping chemotherapy completely would again be approximately 5 to 10 percent.

Dr. Pitot was unaware of any investigational drugs or therapeutic trials for which Bat would qualify.

Overall, Dr. Pitot believes that either therapeutic option would have the same probable effectiveness in controlling the growth of the tumor. Bat and Christa were urged to consider the options, and make a decision as quickly as possible.

After much prayer, and with God’s guidance, Bat and Christa have decided to proceed with re-embolization as soon as possible. Hopefully, they will have a date scheduled for the procedure by the end of tomorrow.

If anyone has a question about the medical and/or technical aspects of the above information, please feel free to email Gary Miller at:

Please pray for Bat .

EEG Says...

Doctor Kovnar says he's thinking Zoe isn't experiencing seizures. Jen had noticed that her "episodes" happen only when she's asleep, and his review of the EEG doesn't seem to indicate seizures.

Things he did notice:

Zoe doesn't have too many stages of sleep. She really goes from drowsy to deep sleep.

Zoe may be affected by obstructive apnea.

Zoe may be affected by night terrors, which do accompany the lack of stages of sleep.

While her fontanel still exists, there is evidence of it bridging.

Here's what he didn't notice: Anything containing the words "incompatible with life."

I am blessed, and you are witnesses to this blessing. I am triumphant, and you are witnesses to it. My daughter turned 15 months old yesterday. And the doctor and you and I didn't even notice it.

Monday, June 22, 2009

Big Day: Pray

Zoe's in right now receiving an EEG. She had another "episode" that resembles a seizure a few weeks ago and the current opinion is it's related to apnea.

The doctor seeing Zoe is the same doctor who met with Selah, all those days ago. Back when Selah's health trials were the worst thing that had ever happened to me as a Dad.

I'm praying for good news there, hoping that God will give us insight into Zoe's health as we learn about her and her condition.

I'm also praying for Josh, Jen's brother, who is trying out for American Idol. My pretty close to objective assessment, having seen his gifts, is that he's a shoo-in for California.

I re-refer you to the devotion I found and mentioned in yesterday's post. My worst-handled duty as a Christian has been acting as an intercessor for those around me. Let's pray for others, watch with them, lift them up.

**Updates: Zoe was very upset with the whole EEG process, but is through. We'll talk to the doctor about results tomorrow.

Josh sang twice today and they lauded his great voice and look, and then told him he's not what they're after this year.

Sunday, June 21, 2009

What Dads Do

Over the last day or two, I've been pondering what to write in this space. The more I thought of fathers, the more I thought of my Dad, people like my friend Ted. And our Father God.

But I wasn't sure what the quality is we all share. Pride, for sure. God sending down a dove and a loud voice when His son was baptized. I know this past basketball season I celebrated my son's play at the end of the game to the point that people thought it was a bit much. God, could you have just done the voice? Did you need to send the dove, too?

Maybe it's being a fool. That, I've done plenty. I know people have seen me at the aforementioned basketball games, jawing at refs and overall being a blithering fool. I know you can catch me most nights or days talking in voices, making up stories, singing songs that are foolish - but they're for my kids. It's what you do. Sometimes you're a monster, sometimes you're a tickle monster, sometimes you're a storyteller. Sometimes you're an opera singer. It's for the kids.

Trust me, God knows this too. Being a fool for His children. Showing love or mercy at all to a failure like me. Sending an idyllic morning and a snoring daughter who is incompatible with life my way on Father's Day is a foolish show of love for an undeserving child.

Then I read this devotion, which helped me focus on the true fathering trait. It's reckless care for those given for you. How'd you like to be Adam, first father, father of the first murderer? Do you think Adam lifted his son up in prayer recklessly? How'd you like to be God or my father, looking at my jagged life?

It's not our job to lay claim to the successes or failures of our children. It's our job to stretch ourselves out for them as shepherds and advocates, to get less sleep and to have no money, to weep for their losses and be fools for them in their success, to sometimes be the opera singer and sometimes the coach. Recklessly.

Saturday, June 20, 2009

Sometimes, They're Wrong Part III

Mom and Dad took Grace off life support and held her tightly, one last time. They took the picture above. Then...

Sunday, June 14, 2009


Bat and Zoe continue to work at gaining weight. Right now, Bat has taken an early lead, adding a pound. Zoe added 7 ounces in a month, up to 11 pounds, 11 ounces.

A Scene



Int. AE Batiansila House - Late Afternoon.

Almost all 32 grandchildren and 9 of ten kids are in the house. DREW is asleep on a sofa. ALEXIS is snoozing on the floor. Every one of the kids is in the kitchen/breakfast room. MARTINA hands out little chocolate cups of licquor for a toast. A hush falls over the room.

I'd like to toast Daddy, and just pray that God takes him - takes him and just -

(HEIDI turns to GREG. Did she just ask God to take him?)

-on wings of an eagle. And just lift him up with this retirement!

(to Greg)
When we pour the champagne, think you could say some other kind of toast?

I thought that one was really good. Think we could pray that God kind of puts a hold on taking him?



Tuesday, June 09, 2009

Insert Meaning Here

Sitting in church this Sunday, I knew something that most everyone else didn't know. So, when the sermon was about change, and dealing with change...I'm sure a good percentage of the group assembled there settled into their "listening" setting - partial attention, while you kind of plot out the rest of the day. I wonder if I RSVP'ed that party?

Change, and dealing with change. The Church year changes, life changes. We have to be ready for the change, my father said.

If only they knew it was my father's last sermon. And that change was coming, and they better be ready. A vacancy, a new pastor, a new shepherd.

I'm not writing to warn us all about being more attentive. I don't know if we could. I am just noticing that meaning is actually applied by us. My dad isn't the first retiree, or the last. His cancer is rare, but he's not the only one to have it. His career was stellar and received all kinds of recognition. But a lot of careers do.

And if you asked some people at church that Sunday, his career was too long, and not stellar enough. They had inserted their own meaning into his career.

We apply the meaning. How much did he touch you? Your parents? How many hands did he hold that went lifeless? How many eternal bonds of love did he help to forge? How many drunks did he counsel? How many times did he arrive at the scene of an accident before the EMT's? How many people at the mental health center consider him to be the only Jesus they know?

There's a story about one of Dad's confirmands from his old parish in Indiana who, some twenty years later, was lying on his deathbed. What can we get you? His parents asked. Pastor Bat, the man told them. So they called Pastor Bat.

He means something to some. He means a lot to many of us.

My Zoe isn't the only survivor of Trisomy 18 - although a ridiculous rarity. If God takes her, she won't be the only tragic little one called Home.

But we apply the meaning. How much did she change me? Teach me about the value of this moment, this day? Did Zoe help you stop and listen to your kid tell you about their day? What does the toothless smile you see up there mean? Maybe it means that fighters come in all shapes in sizes, and Zoe probably didn't want to wake up and fight today either. But she did, and she found some joy in it.

Zoe surprised the speech therapist today. I should create a template for use and reuse that begins "Zoe surprised _____" Today it was the therapist. What the therapist knew about Trisomy was that Zoe wasn't going to be able to communicate well or at all.

Trouble is, Zoe inserts her own meaning. She tries each night to talk to me, contorting her face so intently her eyes cross. She makes shards of sounds, gasps, clicks. She's got something to say. She means it.

I can't possibly end by giving you a trite thought of applying meaning to what you thought meaningless...even though that guy who cut you off was rushing away from getting fired. Even though that dollar you didn't give in offering was for a family struggling to pay their medical bills.

I guess all I'm offering is that if you took a moment, you'd find beauty in a moment. If you let it, the meaning might become clear. And if let God meet you where you are, that intersection, that point, that place becomes holy and meaningful. "Take off your sandals, for the place where you are standing is holy ground." Don't get caught missing the meaning.

Saturday, June 06, 2009

AE's New Call

Bat is closing the door on his call as Pastor at St. Paul's Lutheran Church - Luxemburg, Wisconsin today. He ends a 44-year career of distinguished service at five parishes, touching thousands of lives with God's love. I hope you have a little time to listen to Bat talk about his decision and plans for the future.

I had a chance to interview Bat about his decision, and I admit - it's a really good interview. I didn't expect him to talk about his goals for his artistic style, or talk about some of the travails of parish ministry. Good stuff. Apologies in advance for the length, but if you have a chance, give it a listen. My Dad's a great man.

For those of you unfamiliar with the Lutheran Church - Missouri Synod, their tenets hold that pastors don't have jobs and employers; rather that God himself moves a congregation to call someone and God himself moves that man to answer that call. Terms and conditions of that call are subject to God's will on both the congregation and the pastor.

God is moving Bat to walk away today.

Thursday, June 04, 2009

Trisomy 18 on CNN

A mom who gave birth to a baby with Trisomy 18 was interviewed by Anderson Cooper on CNN.

It's nice to hear a woman speaking about the truth of valuing life. It's also creepy to read Anderson Cooper being a toad. "...even though she had every right to." and, my favorite: "You named her?"

Yes, Anderson, we named the baby.

Tuesday, June 02, 2009


Aidan to his mom as she feeds Zoe: "Mom, can we keep that baby all day and all night?"
Jen: "Yes. We can keep her all day and all night."

Monday, June 01, 2009

Death and Majesty

Dear friends of our family just faced a terrible tragedy. Their healthy son, just one month before he was to be born, was called home. So their entire family is struggling with life and death, hope and expectations, the wisdom of God's plan and just how terrible this place is. Lord, lift their heads.

...and I think of a little button who I stayed up til 4:30 with. I had a cup of coffee at 1 am and she just wanted to talk. To look and make some noises, touch. She does this thing where she feels things with her foot. She'll click keys on this keyboard. she'll run her toes on the texture of your arm. on the sheet.

Feeling vacant and lost. Survivor's guilt? Trying to make sense of death in a sinful world? One thing I know - something that's innate - is that we aren't supposed to die. We all know that we're not supposed to die. That's why we all agree on the tragedy of it. There's something terrible about an eternal being breaking.

...and there's something majestic about a life with a death sentence, living. And great peace in knowing that there is a time for everything, and a loving God doing the right thing all the time.


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