Sunday, January 31, 2010

One Bright Morning

Today let's sing. Let's lift the roof of this place and let my beautiful Zoe Bean fly away.

I'll fly away, oh glory, I'll fly away (oh glory)
When I die, hallelujah by and by, I'll fly away

Some bright morning when this life is o'er, I'll fly away
To a land on God's celestial shore, I'll fly away

When the shadows of this life have gone, I'll fly away
Like a bird from these prison walls, I’ll fly, I'll fly away

I'll fly away, oh glory, I'll fly away
When I die, hallelujah by and by, I'll fly away

Oh how glad and happy when we meet, I'll fly away
No more cold, iron shackles on my feet, I'll fly away

I'll fly away, oh glory, I'll fly away
When I die, hallelujah by and by, I'll fly away

Just a few more weary days and then, I'll fly away
To a land where joy will never end, I'll fly away

I'll fly away, oh glory, I'll fly away (oh glory)
When I die, hallelujah by and by, I'll fly away

I'll fly away, oh glory, I'll fly away (oh glory)
When I die, hallelujah by and by, I'll fly away

I'll fly away.... I'll fly away..... I'll fly away

Saturday, January 30, 2010

The Zoe Effect

From Iceland to Saudi Arabia to Chile and 37 other countries, people are visiting this blog. I'm honored.

Lift up your head. That's what your prayers, properly funneled through the Maker of the Universe and into my often-dull head, have said. So, I'm stumbling along and trying.

Do not be fooled - your prayers do more than bless me. They bless you, too, as you become part of this story. They lift our heads. They give US strength.

Tomorrow I hope to see as many of you as I can, and to feel the light and heat and warmth of your presence as we honor my beautiful Zoe.

Thank you everyone. See you tomorrow.

Friday, January 29, 2010

one more time

I know that I personally do not want to read a blog about mourning. I never could identify with it, there's no way I could. And so I never tried, and I didn't.

But we're mourning.

Kirin, Caleb, and Allana are here, and boys playing Wii. Jen asked, "How can the house be so busy and noisy and be so quiet?"

Gosh, just one more time to feel her cheek against mine. To hold her in the air and watch her smile as I threw (yes, I threw her and mommy worried) her in the air and caught her. Big smile. Flying. Awesome. One more time and then you can have her. Maybe i can tickle her and listen to her gurgle and coo.

Where's my little girl? I will meet you 50 years? sigh.

I was going through music for the service tonight with Josh - I can't call it a funeral - and I just lost it. At a weird time, not where you think. Lost it. Josh hugged me and then Teia hugged me. "I just want this to be good enough for her," I whispered.

Father, let me find a place for Zoe where she is still my prize but where I can breathe. Let Jen find a place for her where she is still her pickles but where Jen can still lift her head.

after the last tear falls

by andrew peterson

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

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

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

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

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

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

There is love
Love, love, love
There is love

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

'Cause after the last tear falls
There is love

Zoe's Memorial Service

We're going to celebrate Zoe's life at a service on Sunday, January 31.
There will be visitation at 4:00, the service at 5:00, and a luncheon to follow.

St. Pauls Lutheran Church
701 Washington Street
Grafton, WI 53024


Our home address is W64N447 westlawn ave, Cedarburg, WI 53012.

Thursday, January 28, 2010

Zoe Goes Home

I was sitting in a restaurant in Pascagoula, Mississippi and Jen called. Zoe had taken a turn for the worse, she said. Heart rate was till 200 and they couldn't calm her down. I went out into the night and talked and started to pray and cry.

We went back to the hotel and I sat there kind of dumbfounded. My dear friends at the shoot and their spouses came up with a plan - drive to Mobile, bus to Atlanta, plane to Milwaukee, car to Children's, to Zoe.

We drove to the Mobile bus station for the 1135 bus. I hugged my friends - generous and kind beyond measure - and waited the hour for the bus. I talked to my sister and Pastor Rafferty and Pastor Navurskis. Then I boarded the bus.

As the driver was just closing the door, Jen called and told me that Zoe had gone home. She said her little body couldn't handle this world anymore and she didn't suffer. I yelped and yelled. I asked to get off the bus. I fell to my knees on the lot outside and begged them for my luggage. I needed to go to Milwaukee now, not after five hours of driving. The driver told me it was 1130...this was the only way. Get back on the bus.

My little snoopy. No. No. No.

No. Jenny - who God gave in that moment so much rich wisdom and peace and a friend in Pastor Navurskis - kept telling me that Zoe wasn't hurting and she was home.

I called Pastor Rafferty, broke the news to him and then asked him to share the news with my oldest three kids. He called from outside the door. I talked to them on the phone.

One hour or so into the trip my phone went dead. The battery keeps dying. I was able to call most of my family and friends and talk to Jen a few times.

I wish I could tell you that I came to some deep spiritual or wise truth on the bus, in the silence, at the squalid Montgomery bus station at 330 am. That the fierce red lights in the predawn traffic at Atlanta that matched the glorious sunrise taught me a truth.

Nothing new. Nothing new that you haven't heard me say on this blog over and over. There is a God who loves us and He has a plan. And the plan is that we end up in His arms. We don't end up in a walker or hospital bed. We don't end up 12 pounds and 12 ounces. We end up in His arms.

And to begrudge Zoe that ending or God for calling her to His arms is selfish. Zoe's Home.

It turns out this blog was not about my dear sweet girl. It's been about an often frustrated, ever-confused, always-confident-and-mostly-wrong man. With deep flaws and great riches.

In the economy of friendship, I am the richest man you know. There is no one with friends touched by the Spirit (whether they know truly His voice or not) who are, have, and will minister to me. In the economy of family, I am wildly rich. A saint of a wife who has loved me when it didn't make sense to love me. Children, sisters, my brother. A stately father who is a man of God. A sweet, dear, talented mom who loves Jesus.

In the economy of grace, I am rich to have known my daughter, my Snoopy, my daddy's girl who would move her huge blue eyes to find my voice.

You did not leave without teaching us all a thing or two. You did not leave without changing our lives. And, even as you left this wretched place, you touched me. All of us. Goodbye my sweet baby girl. I will see you soon. At the end.

Wednesday, January 27, 2010

please pray

for my little snoopy, zoe.


Zoe has been admitted to Children's because her pneumonia is worse. Please pray. This has to turn around, and doctors are hoping intravenous meds will turn the tide.

Tuesday, January 26, 2010

Color's Back

Zoe went to the doctor today and she couldn't get her sat levels up. Usually the trying time is when she sleeps. But today, while awake she was in the 70's with oxygen. Jen brought her home and later last night - just a few hours ago - she actually woke up instead of a slit-eyed consciousness. Not her silly smiley self, but we did get the hand held high in the light.

Now she's snoring with 02 on....just pray hard, folks. If she's not better by Wednesday, they're going to find a place at Children's for her and try to find out why her sat levels are so miserable.

Monday, January 25, 2010


My dad is doing worse and the only way I've found peace with it is to stop asking God why it has to go this way. Because God has an answer: this part of our life - the end - is much less important than we think it is.

I went to the emergency room yesterday with Zoe. She's got pneumonia and an ear infection, and was feverish and dehydrated. And I cried the whole way down to the hospital, a pathetic cry because I just didn't want to go. I don't want to go to Children's Hospital any more and I don't want my little girl to die.

Zoe is so much more a daddy's girl than ever before. Right now she's whining because I'm ignoring her. And I don't want her to die when she's not even 2. Or 2. Or 3. She cried when I leave and she knows my voice. And I want a vote in how or when she dies. And I want it to be better than an infection at 22 months.

And I want my dad to get the Enoch treatment, not this.

But God wants me and you to know that whether you were in a Space Shuttle accident, climbing on to Normandy, shooting a 3 and telling people you were feeling great, or I guess just waking every day to fight until there is no more fight - whether you're 2 or 77, God has his eyes on it all -that moment and eternity. That pain and the unspeakable love. And one is a blink, and the other is forever. We are too easily pleased...we are too easily disappointed.

If we consider the unblushing promises of
reward and the staggering nature of the
rewards promised in the Gospels, it seem
that our Lord finds our desires not too
strong, but too more weak. We are
half-hearted creatures, fooling about with
drink and sex and ambition when infinite joy
is offered us, like an ignorant child who wants
to go on making mud pies in a slum because he
cannot imagine what is meant by the offer of a
holiday at the sea. We are far too easily pleased.

Monday, January 11, 2010


Most nights when I'm up with Zoe late I hold her tight and I beg God to heal her. I know it's ridiculous to think that every cell could be reconfigured and healed. But He can. And He won't.

Friday, January 08, 2010

Aging Gracefully

ETHAN has just finished practice and GREG is driving home. It's one of those winter nights when it feels like 2 in the morning to every human but it's only 8:30.

(from the recesses of the van)
Dad, they're working all day and all night on the apartments by school.

Yeah. I think they're almost done building them. They're going to be for older people.

Yeah. Aaron can go but I can't. He's seven. I'm six.

No I think they're for old grammas and grandpas.

...oh. Like you. How old are you?


That's almost very old. That's very old.

(nods as he comes to a stoplight. Tired.)

Because after 41, it's 42. Then it's 43.

The van pulls away from the stoplight. GREG contemplates stopping for beer.

...Then it's 44. Then 45, 46, 47. Then 48. 49. 50....then 60.

GREG realizes he has no money for beer.

...Then 70. Then 80. Then 90. Then you turn 100 and you blow up and go to heaven.

GREG smiles and checks back into the rearview mirror.


What, E?

I'm going to miss you when you're in Heaven.



A God Is Great Zoe Home Makeover

My mother is world-famous for making connections. She's savant-level at connecting people to people and their moms. And their churches. And their pastors. And the seminaries the pastor went to. And perhaps a professor at that seminary.

Mom: Oh, so you go to St. Paul Lutheran? That was Pastor Keefe's old church.
Target: Yes. Pastor Keefe. He baptized my Linda.
Mom: Keefe baptized my Erin's second grade teacher. Good man. Went to St. Louis Seminary, I think. The Holy City.

That's how it works.

So Mom will appreciate this:
Warning - deep history to ensue:

I was going to drive to Chicago for a shoot and decided that, despite how broke we were, I'd download an album and listen to it. I went to and downloaded a single mp3 of a song I had heard part of on the radio. Loved the guy's voice.

I downloaded the wrong song so I went to download the right song while listening to the wrong song. I loved them both. Decided to download the whole album.

A week or so later, I'm addicted and listening to it as I go to get my pregnant wife's sonogram. They told us my daugher had a heart defect, which would require surgery. I drove back to work listening to a song from the album: Shine Your Light, singing over and over again, Oh My God, Shine Your Light on her, that she might live. I was crying.

I wrote the artist, Robbie Seay, on his blog. I told him thank you for the song, that it was all I had.

Five months later, Zoe was born and God let her live. Her condition, this world's tilting to sin and destruction sought to claim her cells but God wanted her alive. We were told she'd die. Soon.

I wrote Robbie again. I told him thank you for his music because now it truly was sustaining me. Robbie wrote back. He gave me love and support and prayers.

My friends at work became the most profound hands of God I've ever seen. They brought food, they offered help, money, love. They were amazing.

My friend at work, Brooke, had a friend she grew up with, Heather. Heather is married to a pitcher for the Houston Astros. Heather came to work and visited with me and became determined to do something for Zoe.

My friends at work asked Robbie Seay to come give a benefit concert for Zoe. He said he would. And, on her 108th birthday, he performed in Brookfield. We talked and met and prayed.

As a thankyou, Brooke and Heather set up a special treat for Robbie - field-level seats for his favorite team, the Houston Astros. And...a thank you on the scoreboard. And...a meet and greet with the Astros. And...a feature on Fox Sports Net about Zoe and Robbie and Heather's husband, Chris.

Robbie went to the game, and took his brother and a family - the Beach family. The Beaches are adopted and have special needs and are being lifted up by Robbie and Chris's church, Ecclesia. I was so excited that Robbie would get something special from all of us. It sounded like they had a good time. I wrote about it.

A blog reader in Houston read my entry and decided to help the Beach family. She and members of her church gave gifts and support. "Barb read about a family that had reached out to Robbie Seay that needed help. It was a huge family that took in foster children and orphans and lost everything in the hurricane. Barb's efforts allowed her to donate 4 boxes of clothes and $200 in Wal Mart gift cards."

(The "Barb" mentioned above is St. Mipps' sister, Barb. That's for you Mom connection types.)

Barb has continued to support the Beaches. In fact, she nominated them for ABC's "Extreme Home Makeover." Here's Barb's explanation: "Robbie Seay's wife Liz was helping them out and I read about them on Zoe's blog . . . then we decided to help them out . . . so I contacted Liz and it was a done deal. They have 15 kids that they've adopted and foster, all with special needs. Their house was damaged and they were living in side-by-side trailers. They are all at Disney World this week as that crew comes in to makeover their home!
After the fact, I believe he even blogged about how we'd made that connection because of Zoe."

So Robbie Seay is on Extreme Home Makeover. It's filming now, in Houston, and will be on in March.

Jen says, "I've decided. They will no longer be referred to as "special needs" children, but as "special agents." Their mission? To give us unconditional love, to show us God's grace in all things, and to help make us better people. I think we are the ones with greater needs in this world. God bless all of you special agents out there, and thank you for all that you do for us!"

Tuesday, January 05, 2010

Catching Up Video I

Robbie Seay says hi to Zoe...15 months after his concert for her.

Citizen Christa

On January 21, Christa Batiansila will be sworn in and become a citizen of the United States. For us, this is a remarkable moment - and a surprising one. No one understands the tenets of freedom, hard work, rugged individualism, and love for this nation better than Christa.

We're preparing for an special time.

Monday, January 04, 2010


Something I wrote for Ironman's cause...reprinted from his blog.

Across the globe, there’s a forgotten and lost tribe of people. They’re the children and families of children who have Trisomy 13 and 18. Their children have been given a death sentence. This tribe is hurt and mostly alone, waking up to face death and the fear of death.
For those in this tribe, they learn not to live in the past or the future, but in the now. They learn how to be. They must be.

Their motto can be summed up in 3 “B” words: (tri be). Battle. Breathe. Believe.

Battle – against pain, fear, death, against the very cells in a body. Against anger. Against ignorance.

Breathe – trisomy babies are supposed to forget how to breathe and die. As a parent, you never take a breath for granted. And as a parent, you learn to just breathe. You keep thinking you can do something – you can’t. In fact, you can do nothing. So, as Robbie Seay the singer says: breathe out and breathe again/know that life is hard, but it’s worth breathing.

Believe – is all we can do and the best we can do. Believe that life is precious. Believe that today is a gift. Believe that there is eternal life for the redeemed. Believe that I have a Savior friend who will see me through this. Believe that there is strength in Him.

Our TRI-BE theme was created by a dad living with a trisomy 18 daughter, Zoe.


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