Happy Birthday Zoe

Happy Birthday to Zoe! A snowstorm had hit the day before she was born. So long ago. I would be lying if I told you how broken I still am about losing her.

It's a wrestling match of blessed confident assurance and just a dad missing his little girl. I am so glad you're there, Zoe. I'm so glad you can be free.

But the days drag on and I'm not there. I have more of the mission left and sometimes, missing you is part of the drudgery. God lift all our heads.

Sunday Morning

Sunday morning and that meant dad would be be gone already or in a room finishing up his sermon. It was the only day of the week he didn't make breakfast, and we'd hear the urgency in his footsteps, the joy-filled way he'd greet everyone as they doddered out of bed.

I was born on a Sunday, and dad wasn't there. He was in the pulpit, preaching. He had a job to do. One of the ushers told him as the offering plates were handed over.

I learned that from my dad. On the Saturday before Zoe's service, I told everyone there that this was business. Cry later. This was business and we were going to touch hearts with something worthy of my daughter. Work to do.

Zoe always had good days on Sundays. Putting clothes on meant a shirt, or a pillow...something would be close to her face, which was hilarious. Zoe's biggest grins involved face smushing.

Even though church was time from her favorite place - Mom and Dad's (her) bed under the ceiling fan, it wasn't long. And there was singing at church. Zoe always loved music.

I wish their jobs weren't done. Mine isn't. Sunday is God's day and His two servants loved it.My old pastor said "We are Easter people." Every Sunday is a celebration because Jesus is alive. Let the redeemed celebrate.

There's A Reason

by mercyme

Now's the time
Let the redeemed celebrate
If you know what I know
You can't wipe the smile off your face
Oh people, stand up and praise

There's a reason to dance
There's a reason to sing
Of the sacred romance
With our Savior and King
We lift up our hands
We fall on our knees
To the Son of Man
The reason we are free

There's a reason

All glory to
The King of Kings, Lord of Lords
Oh the value of Your worth
No worldly treasures can afford

And we praise You forevermore

There's a reason to stand
There's a reason to shout, to shout Your name on high
So we take up our cross, there's a reason to die
Because Jesus is alive

There's a reason
You are the reason
The reason we are free

She's Still Touching Lives

Zoe made the front page of the local paper, featuring the picture you see to the right. A woman caught me after Kellen's game and told me she had read the article and was so moved.

Meanwhile, Astros.com featured this article.

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

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.

Dad

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.

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 Amazon.com 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!"

Catching Up Video I

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

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

"A Catastrophic Genetic Disorder"

I don't know why.

I guess I'm figuring God puts much less importance on how people die or how long they're here. It would be very God-like to be more interested in the impact that life made, no matter how many years it was given here.

Or minutes.

The Stulls had 32 minutes with their daughter, Kylie, before she went home.

32 minutes would be about how long Zoe played "airplane" with me last night. Her mama calls her "Pickles."

And yet both have a "catastrophic genetic disorder."

God has chosen Pickles for something else. I am grateful for his mercy.

Given A Chance And A Rock

Back from a nice week away from the blog.

Back just to ask for your prayers. So many things all happening at once - some stupendous. Some stupid.

My dad's cancer is stupid. Cancer, as we all know, stinks. It's just a sign that this world stinks and any hope for peace in this life is misplaced. Dad's first round of treatment went well. But in order for it to go well, he has to undergo pain and sickness so he can hopefully be less sick. Whereas no one forsees a complete healing from cancer, some see this treatment as a step towards more days with us.

One thing is for sure: this place is better with my mom and dad in it. With their examples of faith and devotion, with their willingness to fight after years of living on nothing and raising us. They will not go quietly. If anyone was wondering, I learned it from them.

My job is stupendous. I get to work in areas and with people I never would have dreamed. I'm awed, honored. I get to create and guide things and try and live for an idea. Sure, it's long hours and stressful, but those are elements of nurturing anything. I'm blessed beyond measure.

The economy is stupid. We're not sure how we'll make it. Not sure about anything. My workplace has let half its staff go in the last year, and even forced us all to undergo paycuts. No one is prepared for that. For us, we're fighting for survival and finding out that creditors don't have any way of working with us through these times. It's stupid and couldn't come at a worse time.

Zoe is doing stupendous. Ok, she's not actually putting on any weight, but her growth and development are pretty amazing. I was at work last week when Izzi texted me to tell me she was watching Zoe's physical therapy. "She's amazing," Izzi gushed about her little sis.

Amazing? Is it amazing on a curve? Perhaps. We all know that a good portion of medicine is starting from the "she'll always be like this" philosophy. Zoe will not always be like that. What will she be?

The answer, as it is to anything that is stupid or stupendous, is we don't know. I don't know if I have another day or a year with my dad or my daughter. Or my job. I just might get someone elected governor of Wisconsin. I also might not have a place to live. Only one true thing in this life.

Cuz if the birds and the flowers survive, then I'll make it ok.

Table for Two
by Caedmon's Call

Danny and I spent another late
night over pancakes,
Talkin' 'bout soccer
And how every man's just the same
We made speculation
On the who's and the when's of our futures
And how everyone's lonely
But still we just couldn't complain

And how we just hate being alone
Could I have missed my only chance
And now I'm just wasting my time
By looking around
But you know I know better
I'm not gonna worry 'bout nothing
Cause if the birds and the flowers survive
Then I'll make it okay
I'm given a chance and a rock
see which one breaks a window
See which one keeps me up all
night and into the day

Because I'm so scared of being alone
That I forget what house I live in
But it's not my job to wait by the phone
For her to call

Well this day's been crazy
But everything's happened on schedule
from the rain and the cold
To the drink that I spilled on my shirt
'Cause You knew how You'd save me
before I fell dead in the garden
And You knew this day
long before You made me out of dirt

And You know the plans that You have for me
And You can't plan the end
and not plan the means
And so I suppose I just need some peace
Just to get me to sleep.

Smile

Overheard

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."

Jumping Rope For Zoe

Zoe's big brother, Ethan is involved in a Jump Rope For The Heart Association fundraiser. For Ethan, it's more than just a fun way to stay active. If God wills, Zoe will have another heart surgery in the future...and her first has given us more wonderful days together.

So, if you have any extra change lying around, support Zoe's Big Brother today or tomorrow with a one time donation.

March 22

March 22 looms...so we're putting out an APB for all of you all to join us for Zoe's birthday. And if Barb in Melbourne can't make it, I'll do my best to blog it for you.

All we're asking is an RSVP. We're setting up a Facebook event...

Waving Hi

I told you it was coming...Jen waves and says "Hi" or "Bye" and Zoe responds.

Usually at some point mid-wave, Zoe starts to notice how cool her hand looks and gets distracted.

Sweat and Snow

The forecasters said maybe 3-4 inches. Well, that's not what they're scraping off my road right now, and it's still snowing. Happy February.

Zoe has always been a head sweater, and last night she might have set a personal best for sweating her way out of a set of clothes, a pillow case and both ends of a blanket. I'm talking some real dedicated sweating.

She's also getting better at lifting her head up at tummy time. She'll hold her head up and look around, almost as if this is something she's supposed to be doing.

Tomorrow our Zoe turns 11 months. Yeah, that's right, I just said it like she's going to be with us tomorrow. That's the way she's eating (and snoring right now) and living. 11 months.

Jen and I are starting to plan some kind of shindig for the first birthday party. That's right, I'm talking like she'll be with me in a month. I'm open to suggestions for the party....

Cool Zoe Pic

Izzi took this this weekend.

Why Won't Humana Healthcare Approve An RSV Vaccination?

Soo...Bart Millard's home with Sophie. They both were tired.
If you follow Bart's Twitter or blog, you'll find out RSV can be pretty dangerous - and pretty scary.
Humana Healthcare approved of an RSV shot for Zoe while she was in the hospital. Why are they dragging their feet and not approving one now?
Is it time to get paranoid and defensive?

A Talk With...Sam Provenzano

For those of you who have been following this blog for a while, you'll recognize Sam P's name. I met Sam really...really briefly for as close as I feel to her. She has been a constant friend and support to Jen and me, and a true Zoe fan.

The fact that I know Sam and call her friend is a testament to what God can do if you let Him.

Here's a quick excerpt of Sam's answer when I asked about Zoe's impact on her life:

"Seriously... the impact.. it has been overwhelming. Let me start off by saying.. I never have prayed or believed in something before.. well.. obviously she is fact that there is something out there. She has moved so many people.. reading the comments you get.. just gives you faith that there is hope out there"

Read it all here.