A Vampire Sees The Light

As my big sister says, God's a funny guy. And He will do what He will do. In your life, in Zoe's life, and in Anne Rice's life.

Ignorance The World Around

In Australia, they're not that welcoming if you have an extra chromosome. Too much work. Too much money.

MORE OPRAH GOODNESS

FROM THE TRISOMY 18 GUYS:

Oprah Show Features Eliot’s Story
and Raises Awareness of Trisomy 18!


BREAKING NEWS: Trisomy 18 and Eliot's parents on Oprah Show again!
Tune into Friday's show.

On October 28th, in a show featuring Miracle Children with Celine Dion, Oprah shares the incredible story of Eliot Mooney, the precious baby son of Matt and Ginny Mooney of Arkansas and the 99 days of life they treasured with him.

We're thrilled to see Oprah share the story of Trisomy 18 as lived by a family in our Community with her vast audiences around the world. Today's segment will reach many millions that will be inspired to learn more about Trisomy 18 for the first time and how they can help the families we work for everyday here at the Foundation. Oprah's viewers will have access to learn more about Trisomy 18 and many families' stories at trisomy18.org/eliot.

Miss Me? Everyone Does

Sorry guys...I miss talking to you all. I wish I could explain how insane this work life is. So much is riding on me, and I'm working long long stressful hours and not seeing anyone at my home for days and days.

Can't wait to see you again.

Surgery

Jen and I have decided to have the doctors at Children's Hospital - Wisconsin perform the shunt surgery. It's the surgery that does not stop the heart, and when we told the Doctor Frommelt of our choice she lauded it. We're now waiting on when the surgery would take place, but it's time to get this done. Zoe's color isn't great and it's time to help her.

Please pray with us and for us and for Zoe.

Oprah Features A Trisomy 18 Family!

On October 28th, in a show featuring Miracle Children with Celine Dion, Oprah shares the incredible story of Eliot Mooney, the precious baby son of Matt and Ginny Mooney of Arkansas and the 99 days of life they treasured with him.

We're thrilled to see Oprah share the story of Trisomy 18 as lived by a family in our Community with her vast audiences around the world. Today's segment will reach many millions that will be inspired to learn more about Trisomy 18 for the first time and how they can help the families we work for everyday here at the Foundation. Oprah's viewers will have access to learn more about Trisomy 18 and many families' stories at trisomy18.org/eliot.

Things I Forgot To Share With You Part III

Elise, Kid 5, turned 7 on the 7th. Her golden birthday. We had a really fun time by going to what has kind of become a Batiansila family birthday haunt - the Mineshaft. It's good pizza and a pretty good deal so kids can shove tokens into machines and then get tickets and then trade them for fake teeth, little plastic rings, stuff like that. Believe me, a good time.

Elise has a penchant for sometimes being completely silent - mute almost. You can ask her a question and she'll kinda stare at you without much to say. This is largely because she suffers from the older sibling syndrome - where your older sib will act as your agent. Ask a younger kid his/her name, and the older kid will leap on scene: "Her name is Elise!," answering any question you got for her. "She doesn't like melted cheese!" "She's just tired!"

But when Elise gets wound up, she's as loopy a kid as there is. Loud, even. And she dances and can't stop turning cartwheels. This is what I see when I see her playing with her two younger brothers, this giddy, effervescent kid.

Elise was born just a few weeks after 9/11. I remember being so scared then, scared of what was to come. Scared for the life she'd have. Her presence in my life and in the life of her family - particularly her little brothers - has been about joy, and a smile with big eyes. And cartwheels.

Things I Forgot To Share With You Part II: Renee's Golden Birthday X 2

I think it goes gold for the Golden Birthday, Glass for the 2x Golden Birthday, and then some kind of nuclear isotope for the 3x.

Renee's at glass.

Renee's the kind of person who is proof positive that when you find yourself and find the person you were made for, you've found a pretty blessed life. She's raising a tribe of strong, gifted boys in Wausau, Wisconsin and growing old with her lifepartner , Jim. Ok, they're married, but they are life partners, right?

Happy Glass Birthday, Renee. As C.S. Lewis said, "You are never too old to set another goal or to dream a new dream. "

Things I Forgot To Share With You Part I: Charis Turns 30

Charis turned 30 on the 21st of October. She's the youngest of my family, which means...my family is kind of old. How did we get so old?

Not like Charis is. She's had the great advantage of watching all of her older siblings screw up and stumble, learn what she can, know what to avoid or sidestep, and end up with a pretty cool life.

Charis has two kids - Kalla and Payton - and a loving husband, Bryan. They are living anyone's dream life just outside Milwaukee and are in the process of building their house.

I stumbled across the 30 mark in my life, but Charis is showing how a faithful life lived wisely is a life of blessing and peace.

The Zoe Effect

So yesterday I got an voicemail from Michael Hennessey, the gentleman who is trying to set the world record for competing in the most Ironman competitions. He calls me and I call him and I owe him a call.

I know him because of Zoe. She's changed it all, connecting a guy in Milwaukee with a guy in San Antonio. (P.S. We have 14 kids between the two of us - another weird connection)

Here's another example of the Zoe effect, an email from the Batiansila Family Patron Saint, Mark Natzke: "So on your blog, 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.

Zoe wins another one..."

Happy Birthday, Brother

Yesterday my brother turned 33. I can't think of a time when we both seemed so old and so young at the same time. We have nothing in common and sometimes, too much.

He's on the precipice of having baby 2. I just had baby 8. He's having problems going to sleep. I'm having problems being allowed to sleep. His sleeplessness involves physical struggles and a sleep study...mine involves a 9 lb, 9 ounce ball of pepper named Zoe.

Andreas is wearing a sleeve around his elbow as a part of his sleep study. He says it has lights and stuff on it, which he says makes him look like a robot. I asked if he used it as a line to seduce his wife. He said he already tried. No dice.

I guess I would have thought the robot line would have been golden.

For a few minutes of talking loopy and at least one joke about flatulence, it was good to have him near. Men are solitary figures, sometimes by choice. Brothers and best friends are the closest you can get to feeling someone near.

Heavenly

On Saturday evening, a few of my friends held a benefit for Zoe at a ridiculously beautiful house in Milwaukee.

The house was like the night which was like my life. You think you had it sized up, and then you turn a corner, and realize there's another room, not like any of the previous rooms you've seen. And it was decorated in a different style than the others. And populated by different people.

So while Josh played from one room, I met people I would never have met who before this event never had heard of Trisomy 18. And, some ridiculously open-hearted people who I see all the time, giving of themselves all night to make sure all of the activities went well.

I have to admit I didn't walk through the room where all the different items were shown for silent auction. I'm not quite at a point of peace and humility with the goodness of God or my friends. But I was surprised and pleased to find people wanted to talk about Zoe and Trisomy and our battle.

Zoe was all dressed up and made it through most of the night. She likes lights, and there were so many different lights and candles, no matter what room. I'm sure it was heavenly for her.

And for me. A disparate group of people joined together in one place because of one person, one cause. Some of the kindest, most outgoing love I've ever seen or experienced being exhibited from the hearts of so many people.

God has been telling me that He will show me what He can do. In Zoe, in my life, in events like this. I think we think of God in terms of lightning bolts and thunder. But God's more of an artist than that.

Day 210

Zoe is lying on the bed looking at her hands. We had a long night, but the days look like this. Zoe awake, pretty at ease.

I haven't seen her much the past days, outside of hearing her snore as I'm leaving in the morning.

Tonight a bunch of friends are doing another remarkable thing for Zoe - an incredible auction at an amazing house. I'm humbled and amazed. I know my friend Mipps wrote in his evite that Zoe would be at the event. It scared me a little because we just haven't talked like that. After 30 weeks of life, can we now? Could I tell you she'll have her first Thanksgiving or Christmas?

Thanks to you all for your wonderful supportive comments. Ironman wrote to tell me to hold out my hand while sinking and call out for the Master's help. With friends like all of you who have reached out hands of kindness, care and even prayer and financial support, I see so many hand extended, all in love.

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

quality of life

I'm not sure whether I should write this chronologically, because that's not how anything occurs to you at 3:41 am.

But if I did I'd start by writing that I was talking to a friend two nights ago and telling him the gist (that's all Jen will share) of Zoe's former pediatrician's enthused words to Jen. That Jen's quality of life and the other 7 kids' quality of life and my quality of life and Zoe's quality of life all suffer as we try our hardest to extend Zoe's life.

And my friend told me that he's pretty sure that's what everyone thinks.

It stuck in my craw a little and made me want to fight my way out of that corner. So I did and told him that I doubt anyone can willfully let a plant die in their house, let alone a puppy, let alone a baby who smiles and coos and sometimes talks to her hands. And no one has given us an expiration date of our daughter. No one knows if its tomorrow, 3 years, 3 months, or 3 minutes.

But the response has stuck with me like the perfect counterpunch in a fight, especially now. It stings. Maybe everyone thinks that.

Right now, at 3:41, I am less full of fight and more full of questions and tears and doubt. Did I do this all wrong? What if everyone is thinking how I did this wrong. And your thoughts are of pity and camaraderie, but rarely empathy.

Would you have had an eighth kid? Probably not, even if you felt like God was telling you to. And would you have taken the signs I did to mean God was telling you anything? What if Zoe was more a manifestation of my will instead of God's?

Quality of life. Zoe's last seven nights have been horrid. She cries and wails and we don't know what to do. We'd ask our pediatrician but - yeah. Yeah our pediatrician may or may not give us the advice Zoe needs. Depends who you ask.

Jen's convinced the last nights have been because Zoe's heart is getting worse and we need to make a decision. She says we need to talk more about that.

Which would mean talking. Which we do, off and on, but mostly about heart surgery and bills. But maybe Dr. So and So was right. Quality of life of the marriage? Of Jen, or me, who are sleepless beyond anything we can express? Can we really keep doing this for another six months? A year or two? At 3:41 - now 3:50 - I don't know.

We ran out of water. And Zoe can't have tap water so it's 2 something and I have to get to Walmart. And all of these questions - my friend's comments - Dr. So and So's quality of life argument - it's a flurry of blows to the head, to the body. It's resonating now that I feel angrily unprepared to feed my daughter, let alone rule on her health. I don't know.

I'm working 12 and 15 and sometimes more hours at work through an incredibly demanding season. Hoping they'll accept whatever I give them with whatever sleep I'm given. Not exactly the quality of life my work's expecting.

Quality of life, when you factor in the current bills and a heart surgery and school tuitions and gasoline and feeding the tribe. Last night I laid into Izzi and Kellen about doing their chores and told them so what if you don't want to do them? In the real world, no one gives a - care. No one cares if you don't want to do something. That's not life.

Or maybe it's not mine. Maybe you're looking in and reading this and still kinda shaking your head about our nonsensical position - fight for extra days with someone who may or may not have extra days. Is this brave?

3:59. I still don't have answers. But my alarm will go off in two hours, and it doesn't give a - care. No one cares if you don't want to do something. That's not life.

A Really Cool Event For You. For Zoe.

Mark, patron saint of the Greg Batiansila family, has set up an event this weekend that you might like. It's at a really incredible mansion/house with A TON of very cool things to bid on- like restaurant gift certificates, jewelry, bottles of fine wine, a cooking class, an overnight stay at Chula Vista waterpark, a Lexus jacket, an Ipod shuffle, an autographed Michael Buble' CD and prize pack, a house cleaning by the Maids and a gift basket/certificate to Halloween Express...plus some other late additions that will knock your socks off.

Here's his invite:

Host: Mark Natzke
Location: The home of Andy Nunemaker
2239 N Terrace Drive, Milwaukee, WI 53202 US

When: Saturday, October 18, 7:00PM
Phone: 414 405 7895

My best friend Greg Batiansila and his wife Jen had their daughter Zoe on March 22 and she was diagnosed with Trisomy 18 three days later.

Despite having been given only a few days to live, she is still fighting for life on a daily basis and has beaten all odds by making it this far. She's provided joy and hope to numerous friends and family members who have met her.

She has also touched people around the globe who have read about her short yet impactful life on Greg's blog http://batiansila.blogspot.com/. Because of mounting medical bills and Jen being out of work to care for Zoe, the Batiansilas are struggling financially.

Right now they need our help and ultimately they want to establish a fund or scholarship in Zoe's name to help other families affected by this disorder. We are inviting you to come celebrate Zoe's life and to help raise money for this wonderful family.

For only $30 per person, we will provide food and drinks in an amazing house that a good friend is allowing us to use for this special event. We will also have a silent auction featuring some very cool items (bid on the chance to be a Packers QB for a game - just kidding) that are still being gathered and catalogued.

If possible I'll update the list on Evite or on http://zoemeanslifefor.us every few days. If you work for or know of anyone who would be willing to donate an item to this auction, please contact me and I'll email you the donation form.

Please join us for a night of celebration as we raise a toast to Zoe and gather for a good fall party. Mark, Mandi, Erika, Andrea and Ron

Ironman Interview

I'm pretty sure you have to hear Ironman talking to understand how truly dedicated, and how truly insane he is. I mean that in the nicest way possible. Ironman can't stop thinking about his quest. There is no doubt that he has been given a calling by God.

Here's a really cool interview with Ironman.

Zoe's Got Something To Say

Last Saturday was an incredible display of the chaos that is our life. Jen worked. Kellen had to be at the game. Teia had to go to work, then wanted to go to the game. Kellen needed a flower for the dance. Izzi and Kellen needed money from their bank accounts.

Izzi was having 6 people over to eat Homecoming dinner. I was making prime rib for them. I had my little sis Charis coming over to monitor the dinner so I could leave with Jen, who was doing some intense cleaning, to go to high school to pick up Teia and Kellen so we could get Kellen's flower and take him to meet his date so that we could then go to see Matthew West.

A friend of mine knows Matthew and had offered some meet and greet passes to the show. Yeah, it was busy, but...Matthew West! It was what caused Teia to decide to forgo her senior homecoming and go.

So, we're trying to set a landspeed record on Highway 83, trying to get to the concert.

And we got there late. 12 minutes late.

And the guy said we were too late to meet Matthew West.

Which made me just stop and want to cry. Our day had begun at 5:30 that morning and almost everything had been done almost well. Everyone had gotten where they needed to go pretty close to on time. The food was done and the table set. We just missed the part where we met Matthew West.

So I sank into a chair at the show and started to go to my sad sad place. Matthew West came onstage and played some warm up music for us. He asked us if we were having a bad day. A bad week. A bad year. I really started to cry. The song he played next was one of several he has about living in grace. About yesterday being history. About how our story of grace is being formed as we live today. It was the perfect antidote to the poison in my soul.

The title track from his album talks about our lives of grace giving us something to say, and that we all have something to say. Unintentionally, Matthew had stumbled across a Trisomy anthem whose words would trump any medical professional with a anti-life attitude.

If you're living, if you're breathing...you've got something to say.

Oh, and after the concert, we got to corner Matthew and he met my oldest daughter, who picked him over homecoming, and my youngest daughter, who picked to live another day and keep telling her story.

Something To Say

Wake up, 7:32 AM
Can’t believe it’s time to do it over again
Yesterday, it took all that you had
And you’re wonderin’ if you’ll ever get it back
But the whole wide world is waiting for
Waiting for you to step out that door
Come on and let your life be heard today

You got something to say
If you’re livin’, if you’re breathin’
You got something to say
And you know if your heart is beatin’
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say

Listen up, I got a question here
Would anybody miss you if you disappeared?
Well your life is the song that you sing
And the whole wide world is listening
Well the answer to the question is
You were created, your life is a gift and
The lights are shining on you today, ‘cause

You got something to say
If you’re livin’, if you’re breathin’
You got something to say
And you know if your heart is beatin’
You got something to say
And no one can say it like you do
God is love and love speaks through
You got it, you got it
You got something to say

And the world is listening now
And the lights are shining down
Shining down on you today, ‘cause
You got something to say

So just say it

Ironman Speaketh

Continue to pray for Michael Hennessey in his quest to break the world's record for most Ironman races completed in a year. His knee is painful, but he's slowly trying to get himself back to competing.

Here, he speaks about the progress of his quest on another blog.

The It Factor

Jen spent a good amount of time at the pediatrician yesterday, getting an earful about quality of life. Jen won't share the details of the conversation with me because she knows I'll be knocking on this particular Cedarburg pediatrician's door, but Jen describes the conversation with words like "terrible," "awful," and "disgusting."

Apparently the conversation was elevated beyond conversation to the point where the pediatrician pensively, emotionally repeated herself, like she was involved in some kind of fight. It talked about Zoe's quality of life and Jen's quality of life and the quality of life of my family.

Moral debates happen. I'd love to get in one about life. But with your doctor? At the doctor's office? About my family? About Jen's quality of life?

For this particular doctor, Zoe has a death sentence. She has the "it" factor. Just like what happened on "The View" yesterday. Commentator Liz Trotta had a comment about Governor Palin's boy, Trig: "the image of dragging that handicapped infant around and having IT on stage has caused consternation in some quarters as to how tasteful this is"

Putting the best possible construction on Ms. Trotta's statements, it's likely it was a mishandled article. Or, she's single and never been around kids, and the kid is closer to a puppy than a human.

There. I tried.

But honestly, I wonder if Trig's an it. Not quite human because he's not like you and me. Zoe, too, according to the pediatrician. What is her quality of life? She's never going to ride a bike. Heck, she's- I mean it's - probably not going to live.

And if I've misquoted the pediatrician from Cedarburg, I welcome said pediatrician a wide open forum here. Perhaps here is a better forum for your condescension than in your clinic.

Zoe's Appointment

Jen and I met with the doctor today and were given the two options we had hoped for: two different kinds of surgery.

One is to essentially add a man-made blood passage for Zoe's heart called a shunt. It's a surgery highlighted in the movie "Something The Lord Made."

The shunt is a beating heart surgery that will take less out of Zoe to perform. It's not a perfect surgery - being manmade, it might push too much blood through. Medicine might be needed and the surgery isn't permanent.

The other surgery is the open heart surgery we discussed last November before Zoe was born. It requires a stopped heart and a heart/lung machine. It's obviously more invasive, more intense with a longer, harder recovery. Once completed, Zoe wouldn't need heart surgery for her Tetralogy any more.

Jen and I will have to make a decision by month's end and then, after a review of her other organs and body functions and some meetings, it sounds like they'll operate.

Dr. Frommelt will not be performing the surgery, but has offered to be present while it's taking place to act as a conduit to what's going on. There will be many moments of concern, whatever direction we choose. The surgeon who has offered to do the surgery realizes the high risk involved and will perform it nonetheless.

One big concern to Dr. Frommelt is Zoe's thickened heart. At this time, medicine doesn't know much about what triggers a thickened heart. It can be a side effect of Trisomy. One of the side effects of thickened heart is sudden death, which happens with no warning. Sometimes people who have the condition die before it is known that they have a thickened heart.

So there you have it: a lot to pray about. A decision to make. A thickened heart. A surgeon willing to try. A little girl who is alive today because of God's will and your prayers.

Playing Life Hurt

Kellen asked me a few days ago if I thought it was alright if he tried playing the JV game on Tuesday. He's limping but if he wants to try and play, I say go for it.

This is life. We play hurt. I'm sitting in a shoot and thinking of the appointment I just had with Zoe's heart doctor and I wish I had a few moments to think my way through it.

Your Favorite Baseball Player Chris Sampson signed over a hundred autographs with a full cast on his arm to raise money for Zoe Means Life.

Ironman's knee is painful. He'll just keep running those marathons and riding the 100 plus miles and swimming over 2 miles.

Zoe...well Zoe's doing more than surviving. She's breathing and eating and begging for affection. Playing. Smiling. A remarkable, beautiful life growing in - in spite of - this broken world. We play hurt. This is life.

Homecoming 2008

It's homecoming tonight, and there's a pretty big hustle and bustle as we get ready. Izzi and Michael are eating their meal here with several friends. Kellen's limp is keeping him from playing today (although it is getting better and he's shooting for a return on Tuesday). Teia is forgoing the dance altogether - she got a better offer.

From her dad.

I was offered four meet and greet tickets to Matthew West tonight. For those of you who don't know who Matthew West is...you could argue effectively that he saved my life a few times over the past years. And I know he has lifted Teia's spirits and helped bring her to peace in Christ through some of our trials.

So, we're going to be cooking/cleaning/playing/putting on corsages/getting corsages put on/bobbing in the crowd/introducing Matthew West to Zoe. And then home for the bonfire.

Zoe Says Hi. Pray For Me

So Monday is the big appointment with Dr. Frommelt, some other surgeon, and us. We are praying for some kind of news, although we are figuring that it might be one of those meetings where we're told something less than what we want or thought. I'm leaving it at that because I don't want anyone...like say a Doctor...to think that I've spoken dismissively or added any commentary.

So pray for Zoe. And us. Big meeting.

Want A Signed Picture Of Your Favorite Baseball Player?

Down in Houston, Your Favorite Baseball Player Chris Sampson is signing 8"x10'' pictures of himself to help support Zoe. He's asking that people interested donate 20.00 to Zoe's foundation.

I guess I hope that if any of you want to support an athlete that is doing something good with the celebrity God has given him...and if you want your kid to have a picture of a athlete walking the walk, maybe you'd want one.

If you're interested, you can let me know through a comment on this blog.

SMIIIILE (picture taken by Teia)