Show Me Your Glory

With thanks from Karalyn, who sent it my way...



Show Me Your Glory

I caught a glimpse of Your splendor
In the corner of my eye
The most beautiful thing I've ever seen
And it was like a flash of lightning
Reflected off the sky
And I know I'll never be the same

Show me Your glory
Send down Your presence
I want to see Your face
Show me Your glory
Majesty shines about You
I can't go on without You, Lord

When I climb down the mountain
And get back to my life
I won't settle for ordinary things
I'm gonna follow You forever
And for all of my days
I won't rest 'til I see You again

Show me Your glory
Show me Your glory
I can't live without You

Bad Older Brothering

Yesterday was my little sister Tari's birthday. Tari is almost exactly 18 months younger than me, which meant we fought and played with each other every day. Tari used to irritate me by telling people she was only a year younger than me. I'm not sure why this got me, but it did and it would provoke a fight. Nowadays, Tari being one year younger than me means SHE'S OLD. How you like them apples, Tari?

My favorite Tari thoughts:

Tari would hang picture frames in her locker with the store picture still in them. People would ask who the cute baby was, and she'd say she didn't know.

Tari kissed pretty much all my friends. To this day, she blames me. (She is now married to a best friend of one of my friends)

Tari would eat yellow mustard, but only when hidden under something. She couldn't bear to look at it.

Anytime you have a sibling that close in years to you, you pretty much share the same era and memories and highschool friends. Tari and I have seen our share together. Happy Birthday Totsie.

Stronger

The last 24 hours was a tough one for us, mostly because the last 48 hours was a tough one for Zoe. One of the symptoms of her troubles is powerful and exhausting spitting up. Between one particularly harsh episode and her troubled sleep, she's been tired and lethargic and not ready to eat. She was tired. It scared both Jen and me.

But last night, Z slept well and today has eaten great. Her battle for life continues and she has been blessed with another day to fight.

Anger

Sunday night, Jen held Zoe close and said in her mommy voice, "I just want to keep you forever." It's something mommies say. But all the typical motions and comments all have a weird tenor when all this is happening. "How old is she?," a passerby will ask, "she's so little!" or "She won't stay that little for long!"

So Jen puts her little girl next to her on her pillow and says, "I think I'm at the anger stage now."

Anger is listed as the second of the stages of grieving, although when I look at the stages that follow, I know I've been there, too. I think I'm doing laps around the stages of grieving, going from acceptance back to denial on lap 400 something.

Just so you know how artful Satan is - he's fully prepared to kick and spit on me when I'm down. So he's at work on Jen and me and all of you, and he's not playing "fair" and he doesn't care how much you hurt or how weak you feel.

So the past 24 hours have been rife with stuff that would make most people angry. I received an email and the people that were supposed to be secretly getting a copy (BCC) were publicly getting a copy (CC). Nice.

After months of waiting to be allowed to sing on a praise team at church, I emailed the director of music asking if I could sing a solo before a service. Solos, I was told, are for people on a praise team. Perfect.

After 1/2 begging, 1/2 hollering at the kids to play a bigger part at home, they continue to slog around and give me about 12 % of their attention. Wonderful.

A contractor we're paying big money to for a job at work has missed his deadline putting a project in peril. Thanks a ton.

And then, last night, I woke up to feed the baby and listened to her breathing while she sleeps. It's troubled breathing, part snoring, part agitated. It makes me cry. How is this possible? What is the lesson?

Each one of those situations requires patience and gentleness and understanding. Actually, each situation DEMANDS those things. We are called to be Children of Light and Peace. Reflecting Christ. My humblest apologies to any of the above who felt less. There was a time when I would have chosen one of those events and made it the lightning rod for all of my anger. I'm trying not to do that. I'm trying not to be angry. How many laps is this race?

For all of you close to me, you know how 98% of my music is Christian. It's because that music has saved my life. It's the thing that has lifted me and buoyed me and connected me to God.

I've seen Michael W. Smith in concert probably more than any other artist. I saw him once in the mid-90's and he explained how he felt he had reached the end. He had no more words. He couldn't think of more songs. He was driving through the desert in the southwest and he really felt God's presence, really felt himself in that desert place and God telling him He'd lead him home.

The vultures of darkness thing really sticks in my head...this idea of Satan just circling above, waiting for me to fall. Waiting for me to get angry. All I can do is to let it go and turn it over to the One who chose to give His life for you.

I'll Lead You Home

Wandering the road of desperate life
Aimlessly beneath the barren sky
Leave it to me
Ill lead you home
So afraid that you will not be found
It won't be long before your sun goes down
Just leave it to me
Ill lead you home

Hear me calling
Hear me calling
Just leave it to me - Ill lead you home

A troubled mind and a doubters heart
You wonder how you ever got this far
Leave it to me, Ill lead you home

Vultures of darkness ate the crumbs you left
And you got no way to retrace your steps
Just leave it to me
Ill lead you home

Hear me calling
Hear me calling
Youre lost and alone
Leave it to me
Ill lead you home

So let it go and turn it over to
The one who chose to give his life for you
Leave it to me
Ill lead you home

So let it go and turn it over to
The one who chose to give his life for you
Just leave it to me
Ill lead you home
Leave it to me
Ill lead you home

People Asking The Same Questions

Weird. Blogger Jason Fall is asking the same question I'm asking.

"But how much is too much? Was I wrong to Tweet details of my wife’s hospital stay and daughter’s arrival? Is it inappropriate to plaster a website with pictures of my children if I choose not to password protect the site? Is being as open-booked as I am (ask me about my flaws … I’ll gladly tell you those, too) beneficial or a detriment to my work, my friendships or my future?

How open are you? What would you share that would make you uncomfortable? What could you share that would make your family so?"

More Love

Over a sketch made idly to amuse a child, an artist might not take much trouble: he may be content to let it go even though it is not exactly as he meant it to be.

But over the great picture of his life - the work which he loves, though in a different fashion, as intensely as a man loves a woman or a mother or a child - he will make endless trouble - and would, doubtless, thereby give endless trouble to the picture if it were sentient.

One can imagine a sentient picture, after being rubbed and scraped and recommenced for the tenth time, wish it it were only a thumbnail sketch whose making was over in a minute. In the same way, it is natural for us to wish that God had designed for us a less glorious and less arduous destiny; but then we are wishing not for more love but for less.

-from The Problem of Pain by C.S. Lewis

...In Which The Author Explains His Blog Post

More than one person has asked....Why use the word "terror" in a headline? What am I trying to pull?

Did your heart race when you read the headline? Did you stumble through the entry to find out what was wrong to find out that really, nothing was wrong?

Then, that's what I was trying to do.

Terror At 1297 Lakeview Road

How much do you want to know? How much do we share? It's been a struggle through these past days to figure out the line. Mostly, I write what comes to me. If i surpress a thought, if it was important, it comes back and gets joined with a newer one.

I never want or wanted this blog to be about trisomy 18. or even just about zoe. i hope you can see it's about a lot more, about the story, the struggle, this faith walk. about family and Jesus and his body here on earth. Somewhere in there, i keep struggling with how much you want to know.

A few nights ago, Jen left Zoe with me and was going somewhere for something. Zoe was in her car seat and on her way out, Jen told me to make sure her diaper got changed and get her out of the car seat.

But because I'm me and I'm a man and a dad I saw a lot of value in just letting Z stay in the carseat. She was comfortable and sleeping and I could cook dinner and get a ton of things done.

So it was a good amount of time before I looked at the clock and realized I hadn't changed Zoe's diaper and hadn't really done much with her at all. I knelt at her car seat and leaned in.

Her hand was cold.

Her hand was cold and she didn't move when I started to unbuckle her, and there was this terror in my heart, this terror and me saying and thinking "Not now." Please not now.

I ran my knuckle on her chest and nothing. I poked her hard.

Zoe swiped at my hand and scowled. She squeaked and tried to go back to sleep.

I didn't share that story when it happened because nothing happened except Zoe's dad experienced terror and I'm not sure you all want to hear about it nor would you know what to do when you heard it. It's a singularly terrible experience, made all the harder when I know that what happened will happen again, and the ending of the story will be even more traumatic.

So today I had just finished talking to a friend from work via email and messenger when I noticed
Zoe was snoring loudly. She snores loudly and it's kind of funny because Jen and I both do so it's very genetic. But knowing that apnea is the leading cause of death for trisomy 18 children, it bothered me this time. It was loud and she wasn't breathing great.

So I poked her and woke her up, which she hated. And her face was flushed and she wailed. And I let her wail. Because if she's wailing, she's breathing. I'll let her cry and be upset with me instead of feel terror.

I keep telling you all our lives have slipped to normal, and for the most part, it's true. But these stories are there. When I told Jen the apnea story she told me some back. I think we both realized we're just living in this weird moment. We feel the same and we're living at the same address and eating the same food, but this thin slice of terror has been introduced into our lives and it changes all of the normalcy.

Friday Random Thoughts

Friday has always represented my biggest random thought day. So...my ode to the disorganized brain:

1. Zoe was up most of last night. Nothing sickly or frightening, just up. Big eyes searching around. They're turning bluer and bluer.

1.5 Last week Jen emailed me to tell me that Zoe said "Goo." I thought this was impossible, but I heard it my ownself a few nights ago. So to you all, "Goo."

2. I'm the kind of dad who likes to play with his kids, kinda poke and tickle them and whisper to them and watch them react. Ok, i'm teasing them. I am. So, i put my lips on Zoe's head and speak in a low voice to get her to react, and...nothing. NOTHING. But all it takes is Jen to kind of speak in a speaking tone anywhere in the room, and Z starts looking around.

3. Jen's birthday is coming up on may 16. She turns 30.

4. This article I found on Dan's blog melds nicely with this news item (no, that's not a verse) which melds nicely with my friend's request to make sure and publish zackly what Bible verse I'm quoting here at the blog. Basically, we're all pretenders when it comes to the Bible. There are some of you out there sure you don't agree with the Bible because of a verse you think is in it. There are some of us who think the Bible is giving you advice it isn't. And there are some of us who vaguely know something about something in the Bible....but not sure where...

5. Selah and I realized Zoe would easily fit in her doll bed. A lot of personality in a little kid.

6. You guys know what a fan of Robbie Seay I am and I'm trying to stay cool about how kind he has been to me and Zoe and everything. I just love his music and lyrics and his heart for worship. I know how it has not just moved me but people who never would have listened to music like that. Do yourself a favor - and my friend Robbie a favor - and listen to a song like Go Outside or New Day. I sang this to Zoe in the hospital and still do...Better days and a better place I know.

7. Pray for Zoe's brothers and sisters. Some are struggling with grades. Some are struggling with how often they're seeing their family. Some are struggling with some pretty big developments.

No words.

What Are You Doing Here? (Or Give Yourself Away Part IV)

So, God ministers to the depressed and despondent Elijah. He feeds him, lets him sleep.

Then he asks him the money question. "What are you doing here, Elijah?"

Elijah answered immediately, and it's interesting to note that it's actually a duplication of his whiny rant from earlier. It's the one note symphony in his head, composed by Elijah, lyrics by Elijah, and he hates it but he keeps playing it. I'm all alone. No one understands. I'm trying to do your will.

10 He replied, "I have been very zealous for the LORD God Almighty. The Israelites have rejected your covenant, broken down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too."

The tacit part is: How could, you, God? How could you leave me like this? All alone with all this stuff? Life threatened with this huge mountain to climb? Why? How could you?

God's answer was to show his might. Not himself, but his might. Shows Elijah what He can do. But God wasn't in that might. Rocks are torn. Winds whip. The earth shakes. Mighty.

But God was in a whisper. God was in a still voice asking, again, "What are you doing here, Elijah?"

For me, every single time I've felt like going and taking a handful of beer and sitting in a room and having it out with God, God has sent me some tangible form of consolation. 30 countries and 50 states, for example. Last night it was my best friend calling me and telling me how this blog works in people. Mighty.

And after the thought of 50 states fades...after I look at my wife holding my snoring infant girl who is in a fist fight for her life...I hear His whisper. "What are you doing here?"

God's tacit response is: you're here, right? You have a heart that beats and air in your lungs. So answer the question. What are you doing here? I have endowed you with life, with this day. What are you doing here? I have given you your daughter for another day. What is she doing here?

30 Countries, 50 States

Welcome Argentina, Brazil, Spain, New Zealand, The Philippines, Japan, Turkey, Norway, Finland. I honestly haven't checked in a bunch of days, so I was surprised to see us leap from 16 countries to 30. Honored, humbled. Wow.

A long-time friend asked me what states have visited. Within one week, 48 states had visited. Oddly, the two states that hadn't were New Mexico and Oklahoma. We have succesfully been visited by people in all 50 states now, with the largest number of hits coming from Wisconsin, New York, California, Tennessee and Illinois. Does Batblog get any kind of electoral votes?

A Few More Days

A Few More Days
by Matthew West

There is a longing deep inside my soul There is a place my spirit wants to go It's far away from all these chains that bind There is a world I long to leave behind

So, I wait and I wait I wait for the moment when You come for me And rescue my heart from the pain that it's seen Troubles are circling all around me And I can't stop thinking

Just a few more days I'll be going home Just a few more hours and I'll be flying It could be any minute now That You take me away Or maybe just a few more days A few more days

To you a day is like a thousand years And only you know when the clouds will clear So, let me not forget and fall away Because a thousand years could be today

So, I'll wait and I wait And I wait for the moment When you come for me And rescue my heart from the pain that it's seen My troubles are circling all around me I've got to remember

To You a day is like a thousand years And only You know when the clouds will clear So, let me not forget and fall away Because a thousand years could be today

Morning On Green Lake

If this part of my life were a screenplay, I'd definitely write that we were living in this beautiful home with just enough space and fireplace and firepit and a basketball hoop where when you woke up you heard this stillness and cacophony of birds. Where morning dew reflects the rising sun up to the edge of a mostly placid lake.

But the house wasn't yours. You were renting it. In fact, you knew that it was a matter of time before you weren't going to be able to live there.

And then, a producer somewhere would tell you that they get the metaphor, and that its kind of obvious - and maybe a bit over the top.

Beautiful Zoe Pics

Samantha Provenzano, a professional photographer, showed her care by driving up from Illinois this past weekend to take pictures of our family. She's got a tremendous eye and I hope that any of you in her area can think of her if you want a true professional.

Sam's blog is www.aglimpseintomyworld.blogspot.com and she has shown a true heart for capturing the soul and love of her subjects.

Click here for the gallery...

How Are You Doing?

I've always wondered at this question. In most cases, people don't wait for a response. If you walk by someone in the hallway, you say "How are you?" they'll walk by and say "Hi."

In our case, people stare you in the eye and ask intentionally and deeply, sometimes holding your forearm: How are you doing?

We're doing ok. Zoe is doing really well. In the past week we've had two separate things that may be future problems but did not continue. In one case, we noticed blood in her diapers which concerned us. Dr. Estill examined Zoe at length and determined that it wasn't anything internal like liver damage. She recommended moving to a soy-based formula.

I didn't tell you all then, but Jen and I both had a long night that night before the Doctor's visit. You wrestle with so much. As much peace and joy as we've experienced in the midst of this trial, there is nothing I can compare to the distress you feel as a parent when a) you notice something wrong and b) think that something is the beginning of the end.

I describe it like concentric circles of spiritual and psychological existence...where in the largest circle, I know my Redeemer lives. And so I know Zoe is fine, no matter what. And I know now what friends are, and family is, and how much Avicom means to me. Relationships I thought were dead, dormant, or uncertain were none of the above.

In the center circle is this little girl and nothing can negate the parental distress you encounter when something happens to her. And in that circle there's no level of preparation we can achieve.
Yesterday, Zoe spit up three consecutive bottles. We went through the above gauntlet of emotion. I think it's a sinful but successful part of me that wants to be ready for the next thing. In this case, you don't want to to consider the next thing. A battle ensues.

We switched to bottled water for the formula. She kept them down. She's eating. And eating. And eating. She's like Kobayashi of soy formula. I think she's trying to set a record.

So last night, we were up most of the night, but in this case, it's the same reason my friend and co-worker McKenna was up. We have a newborn and she wants to eat. And eat. I retreat from the most anxious of circles.

Microwave Time

Day 30 for Zoe. She's doing ok. She's been having a little trouble keeping her food down. A recent visit to the doctor had us change formula, and she's been doing pretty well drinking from a bottle. She's up to 4 pounds and 15 ounces.

30 days ago I was blogging from a snowstorm and cheering for Zoe. It's got to be 30 microwave days.

Has anything challenged our concepts of time like the microwave? You put something in for two minutes, and the machine makes you wait for an excruciatingly long time - definitely not two minutes. I'm convinced all Olympic records would be broken if microwaves were used to time heats.

Give Yourself Away Part 3

I think what strikes me is how little, not how much God is asking of us. And how readily we'd do His bidding, how thankfully and gladly we'd carry out His command, if we stopped pretending He didn't exist.

If God came in green tornado skies and spoke in a voice that made trees shake and fire appeared in a circle above you and He said, "Go listen to that hurting person for twenty minutes," you'd humbly and quietly ask Him if you should wear anything special? Maybe bring a dish? Perhaps buy the hurting person lunch? Isn't His command asking too little?

God has come to us and asked us to hold a beautiful little girl, and love her and feed her and change her diapers. And pray for her and hug her. And after a number of days he determines, He'll take her home. Sans the green skies, this sounds painful. But reminded of exactly who He is, what He knows, how He loves....

From The Screwtape Letters, Lewis' masterwork written from the perspective of one senior demon to a junior demon (so "The Enemy" is actually not The Enemy at all)....

"The assumption which you want him to go on making is so absurd that, if once it is questioned, even we cannot find a shred of argument in its defence. The man can neither make, nor retain, one moment of time; it all comes to him by pure gift; he might as well regard the sun and moon as his chattels. He is also, in theory, committed to a total service of the Enemy; and if the Enemy appeared to him in bodily form and demanded total service for even one day, he would not refuse.

"He would be greatly relieved if that one day involved nothing harder than listening to the conversation of a foolish woman; and he would be relieved almost to the pitch of disappointment if for one half-hoiur in that day the Enemy said 'Now you may go and amuse yourself.'

"Now, if he thinks about his assumption for a moment, even he is bound to realize that he is actually in this situation every day. When I speak of preserving this assumption in his mind, therefore, the last thing I mean you to do is to furnish him with arguments in its defence. There aren't any.

Your task is purely negative. Dont' let his thoughts come anywhere near it. Wrap a darkness around it, and in the center of that darkness let his sense of ownership-in-Time lie silent, uninspected, and operative."

Give Yourself Away part 2

Prayer Warriors: read closely.

I wrote a quick instant message of thanks to my friend at Avicom. She's very obviously the force behind my refrigerator full of food, and apparently headed up the Zoe Means Life meeting, and has been supportive and instrumental and overwhelmingly kind through the last weeks.

I told her that God was using her mightily.

And she told me that she knew. She could feel it.

A quick rewind: about six months ago, she was telling me she had never set foot in a church. It just wasn't a thing her family did. And that some relatives of hers went to 'Cultbrook' - a clever moniker for the Milwaukee area megachurch Oakbrook.

She wasn't bitter. She just didn't go. She didn't get it. Didn't understand why or how she'd need it. But that was then.

Since then, I've prayed with her and she's met Zoe. And she's been moved to help.

I told her that there are forces screaming right now that she's feeling anything. Howling that she has brushed against the strength and peace of The Spirit. And I told her that she has a unique bit of experience: she gets to see the face of Christ in the actions of people around her. Hear Jesus talk through His Church.

Those same evil forces are going to do everything they can to keep her from knowing. They're hoping they can get her to consider it all a feeling like a crush, or a fit of anger.

I want her to know. Don't you?

7But whatever was to my profit I now consider loss for the sake of Christ. 8What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ 9and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ—the righteousness that comes from God and is by faith. 10I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, 11and so, somehow, to attain to the resurrection from the dead.

Normal Saturday

28 days sounds a whole lot like a month. I think the biggest gift I received was yesterday when we were talking about going to a party for friend and cinematographer Michael Patterson. Jen said she was looking forward to going if she could, to which I responded...why couldn't we?

On day 27, I got the gift of normal. God and Zoe and all your prayers have combined to give me a few moments of not considering what the wrong third chromosome can do. She was just one of the kids who'd need a sitter.

So, like usual, it's Zoe who's giving the gifts. Even today, on her birthday.

Today we're expecting Jen's sister Tracey and another gift - a photographer who will come and take pictures of us. Wow.

Hope Has Found Me

I pulled up to Living Word Lutheran High School and my oldest three filed out. Once we pulled away, I killed the stereo and told them what my friend Erika had told me.

People at Avicom and some of Avicom's clients and my church and my family and friends...and I don't know who else...are uniting to do something special for us. They want to help us by raising funds. The tab to the right was something created by members of Jen's family and I put the name "Zoe Means Life" on it. It sounds right. I think they're sticking with that name.

I told the big kids my quandary. I don't get help, I help. We talked about how little we felt like we needed help. How we could instantly think of people that we should be helping instead.

And then I told them that this is my moment of clarity - these people want to help. And God is behind it. And we're not going to get in the way.

Those big three kids and I have been through our share. Our share of addresses and trials. We've seen some of the hardest trials in the past few months. And now, I told them, God is moving. He's moving, so watch this. Enjoy.

I just started to name right here all the people...all of you from everyone at Avicom, Erika to Julia. What can I tell you? That you thought of me honors me. Whatever happens honors Him.

Starting Over
by Robbie Seay Band

Clouds are gathering
Closing in it seems
Why can’t I move?
You circle overhead
With Your love instead, beckoning

Now hope has found me
I am not alone
Now hope has found me
I am not disowned
And when I think it’s over
I am not alone
When you think it’s over
You can start it over

You, Your peace within my soul
Mercy You have shown
Though trials come
You, You’re calling me to climb
Up this mountain side
Here I go, here I go

You calling me back home
It’s Your voice I know, beckoning

Give Yourself Away part 1

3 Elijah was afraid and ran for his life. When he came to Beersheba in Judah, he left his servant there, 4 while he himself went a day's journey into the desert. He came to a broom tree, sat down under it and prayed that he might die. "I have had enough, LORD," he said. "Take my life; I am no better than my ancestors." 5 Then he lay down under the tree and fell asleep.
All at once an angel touched him and said, "Get up and eat." 6 He looked around, and there by his head was a cake of bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.

7 The angel of the LORD came back a second time and touched him and said, "Get up and eat, for the journey is too much for you." 8 So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God. 9 There he went into a cave and spent the night.

So, what did God do to a down-in-the-dumps servant? Did he chew him out for losing heart? Did he pat him on the back? Ask him how he was doing? What were his initial words of encouragement or guidance? The preaching came later. First thing God did was minister to his physical needs.

Elijah needed to eat and sleep. And eat some more. Because the journey was too much for him.

It might be more than societal instinct to whip out the casserole dish for those who are hurting. I can tell you that we have not cooked anything in a week, because the kind people at Avicom have cooked our dinners every night. We only encounter problems when we have to figure what Selah can eat.

Lesson 1 - make sure physical needs are met. You all are doing that for us in incredible, staggering fashion. Thank you.

Help Is On The Way

Hold On, Help Is On The Way
by Whitney Houston and the Georgia Mass Choir

When you're down and in despair
Don't be uneasy because he'll be there
Say don't you worry, no don't you fret
The Lord has never, never failed you yet

So hold on, help is on the way
Hold on, God is on his way
Hey hold on he's on his way
He told me to hold on
He's on his way
Hold on he's coming soon
Pray, he'll be there
Cmon now, yeah

Now when it seems that you can't stand
Just hold on to God's unchanging hand
Yeah, weeping may, yes, endure for just one night,
But joy will come in the morning light

Hold on he's on his way
Come on hold on
See I've tried it and I know
Help is on the way
Hold on, hold on
I'm begging cause I know
He's on his way

He may not be there when you want him
But he's right on time
But he'll be right there (on time)

Help is on the way
Help is on the way
Help is on the way yeah
The word told me
If I ask he's on his way
I'm thankful cause I know he is

Come on just say, help
Come on just try, help
Ask him for a little bit, help
He'll give it to you right away, help
Help, Believe he's on his way now, help
Help, Know the help I know, help
I've called him before, help
He said his help on his way, help
Help is on the way
So glad to know hey...

Kirin's Correction

Kirin called to revise my transcript of her phone message to herself. I had "How ya doing? Hold it together...you can do a good job today,k? Ok, take care...bye."

Kirin's correction: "How ya doing? Hold it together...you can do a good job today,k? Love you, Kirin...ok bye."

Zoe Update

Zoe is still eating. And eating. And looking around. I offered that perhaps she wasn't really focusing on anything, but Jen slowly moved her Nuk around in front of her and, sure enough, those big eyes followed it.

I talked to my mom last night and I told her that Zoe is indeed a great-granddaughter of Alfred Adler, who just didn't go easily into the night. My Opa had been through wars and prison camp and enough life and I don't think knew how to surrender to anything. The sun came up this morning, and she still has breath in her lungs. And she's hungry.

One thing Jen and I know for certain is that had we had the amniocentesis when it was offered last November, it would have told us that Zoe had trisomy 18. And had the medical professionals known that, when Zoe was born not breathing on March 22, they would have done little or nothing to revive her.

We know that because even during her days in the hospital, after the doctors found out that Zoe has trisomy 18, their attitude changed. Our point in microcosm: When Jen and Zoe were in the hospital, Zoe was fussing and the nurse offered to give her morphine. But Jen picked Z up and burped her, and she went to sleep. Morphine?

That is not to say we have bitterness or lessened respect for anyone at the hospital. They figured their part was done. Zoe was going to die, so it was now time for us to decide: do you want to feed her all she needs to eat? Do you want to turn the photo lights on her to reduce her jaundice? She's going to die, anyway.

Recalling those conversations impresses on us a certainty that had they known, the doctors they wouldn't have revived her at birth, and certainly not two hours later when she stopped breathing again. And you and we would have been deprived 26 days of a pretty special person. Someone who God has used mightily.

I don't know what the next hours or days or minutes - or years - will bring with Zoe. I don't want to get to the point of assuming what a 26-day old thinks and pretending she is capable of Augustinian theology. But there is a profundity in her being with us today. Life is hard, but it's worth the breathing.

Fraternity of Hope Math

700 of 4,200,000 live births in America are trisomy 18 = 0.0166666667%
400 of 4,200,000 live births in America are trisomy 13 = 0.00952380952%

So if you're a math person, figure the odds of us sitting next to each other...?

Fraternity of Hope

Three men sit in three offices next to each other at Avicom Marketing Communications in Waukesha, Wisconsin. All three are Christians (a rarity at an ad agency). All three have kids. All three have had children with trisomy. Ted and Dan had sons with trisomy 13. And I have Zoe.

*A joyful note. Dan and his wife have since given birth to baby Soren. Ted just announced yesterday that he and his wife Sue are expecting! Pray hard. Pray without ceasing.

an excerpt:

ted.mayer.avicom says: I never thought I would meet anyone who went through what we did And I think I told you both, that maybe God decided that the three of us had to go through this. that he decided to put us close to each other. to help however we could

Greg Batiansila says: and for the record, for our readers in iraq and bahamas, ted is in the office next to me, and dan in the office next to him. the odds are not staggering. i think, honestly, it has to be like powerball odds.

ted.mayer.avicom says: let's buy a ticket

read more here

Get On Board ....

Welcome to visitors from Puerto Rico, Spain and the Bahamas! Michael Patterson's masterful art is drawing you, I'm sure. Hope you find what you're looking for...

Welcome India!

Batblog welcomes visitors from Kandivli. Hope you find what you were looking for here.

Michael's Gift

Michael was walking his dog and had a vision of what he wanted to shoot, and how he wanted it to look, and asked if he could come and shoot Zoe. He said this was the first time in a long while that he wanted to pick up his camera and shoot something.

Michael came up, shot in HD and then went home and immediately started editing. He finished, showed his wife, who was moved...then went to his mom's to show her. She was deeply touched.

Michael called me on his way back from his mom's and thanked me. He said it woke up his soul.

We know, Michael. Thank you for sharing your incredible gift with us so we can share our incredible gift - a 4.5 pound soul stirrer (Michael says his camera weighs more than Zoe) - with you all.

Here's what Michael made.

The Porch Swing Picture

I've received a lot of feedback regarding the porch swing picture, including requests to have it in a larger format. Here's the story behind the picture (they are barefoot, and there is snow):

"So basically what happened was Isabel and I were bored on New Year's Eve. Everyone in the family was sick and the two of us had nothing to do. For a little while we played outside and we took tons of pictures and then when we sat on the swing I told Isabel that we should take a picture on the swing and then she brought in the idea of putting on dresses. I told her to quick run inside and find something to wear and I would set up the camera. I had it set up on a table, a shelf and I think even a flower pot. It ended up where I just set it on a the picnic table in the corner and kept putting the timer on and then running over to the swing in my barefeet before it took the picture."

-Teia

Kirin Visits

Zoe's Godmother Kirin visited today. She's been trying for a number of days to get out, so it was special to spend some minutes together.

Kirin also shared the power of encouragement. She played a very encouraging message she received on her phone. "Hey Kirin," the voice said, "How ya doing? Hold it together...you can do a good job today,k? Ok, take care...bye."

"Kirin," I said, "that's your voice."

"I know!" she responded, "no one ever calls me to do that so I did it myself! And now I have to keep resaving it or I'll lose it!"

It should not be surprising, then, that Kirin wore some curtains during her visit.

The Air We Can't Breathe

This was the view from Zoe's room when she was at Children's.

Talked to a visitor of this blog and a dear friend this weekend and she assured me it was ok to acknowledge that this situation really sucks.

It hits us at odd times, times that in retrospect, were obvious - but they snuck up on us. Like when Jen saw the kids singing in church today. Because that was going to be Zoe, and Zoe was going to be the best voice of them all. Better than anyone you know. That's about 1/8 proud parenting and 7/8 pretty good guessing.

Mine was watching little Nora Bromley belt out "Tomorrow" during "Annie" that we attended today. I was frozen. I couldn't look at her. She was awesome. She was incredible. And Zoe was going to be better.

And I'm not jealous of my dear friends the Bromleys. I know Jen isn't of any of those little lambs in church today. It's just that we were breathing air that wasn't in the room, air we were never meant to breathe. And it's suffocating.

28"Come to me, all you who are weary and burdened, and I will give you rest. 29Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30For my yoke is easy and my burden is light."

To me, these burdened people Jesus is talking about are people breathing air they shouldn't be. It's air filled with guilt they shouldn't be feeling, futures they don't hold, pasts they can't change. It's caustic air, poisonous. Painful.

The truth is: right now is ok. Right now, Zoe is sleeping over there, dutifully breathing the air she's supposed to. Zoe did not get a memo on expected life span (median age for Trisomy 18 is 8 days), and it turns out there's a whole lot of grit in her. We took out her unused eating tube (I just got done feeding her 45 units 1.5 hours after feeding her 40 units) (the doctors want her to eat 38 units every three hours). Our friend told me to tell her to "Fight like Hell." I'll tell her to fight like Heaven. They win, anyway.

It's her parents that struggle. Right now, we have been given exactly enough grace and oxygen to live through this moment. We have an incredible network of support around us right now. His yoke is indeed easy.

The word "easy" is interesting to me. The original Greek word used is χρηστός - which has an array of meanings. Fit for use; good; pleasant; mild. And right now, this moment is fit for use, good, mild - I'll have to table "pleasant."

I want more. Out of all the things I want - watching her take her first steps, listening to her tell me she can't sleep in her bed, watching her dance with the boys to Alvin and the Chipmunks, reading "Go Dog Go", kissing her goodbye on Prom night - and the one that I was or am certain was going to happen - Zoe singing lead in everything - I'm not going to get any of those. I am not going to get what I want. It's suffocating. I pulled Aidan onto my lap during the play so I could hide behind him and cry. Jen tried to take a bath tonight to relax but angrily got out. She couldn't relax. No air.

So keep praying, dear readers. I don't know where this goes. If your energy is flagging, if your interest is waning, believe me, our energy is just as tapped. These are glorious days of wonder, living in the awe of another day of life. We just have to learn to breathe the same air Zoe is.

(i went through the blog and have added a link to every song i mention so you can buy and download if you want the true experience)

Breathing Air Again
By Robbie Seay Band

Take the time to start anew
Maybe it's in front of you
Take the time to walk down your street
And heaven knows who you might meet
Take the time to be okay
And laugh a bit along the way
You could take me for a ride, we could just drive all day

And we could breathe again
Step outside our front door
And gaze upon the stars
And know we're not alone
So run into the fields
Scream louder than you can
It's good to be alive
And breathing air again

Take the time to stop and stare
Heaven's beauty everywhere
Take the time to think about
Someone else besides yourself
Take the time to be okay
And laugh a bit along the way
You could take me for a ride
We could just drive all day

Welcome, South Korea!

Batblog welcomes visitors from South Korea and encourages them to come back for more exciting batblog action!

Visitors Today!

Sister Martina hopes to roll in today, along with Kirin and Charis (again) (she noted that this fine blog did not mention her visit last week.)

Our friend Michael Patterson, a gifted film artist, is coming by today to get some footage of our three week old.

between walls

one of my favorite poems is by american poet William Carlos Williams.


the back wings
of the

hospital where
nothing

will grow lie
cinders

in which shine
the broken

pieces of a green
bottle

"Between Walls" talks about beauty found where no one would find it or even look.

That's what our family is experiencing as we see so many beautiful examples of people gloriously reflecting a light of love and beauty into our lives. You all are making it impossible to not see Jesus in our midst, ministering to us.

My refrigerator is filled with food. St. John's has contacted us to say they are working some things for us. Our visiting nurse is a member at St. John's and when she heard me expressing my wish for a family Y membership (I explained I wanted to go in there and try and work out on a machine until it broke or I collapsed), she lovingly and kindly offered our family a three month membership.

So many of you have given us thoughtful and beautiful words in cards and over the phone and on this blog. We do not take any of your love for granted. You honor us with your love, and you honor our Creator, the ministering Spirit and the Savior Son by showing such beauty between walls.

Zoe Update -Our 3 Week Old

Happy three week birthday, everyone!

Zoe continues to act and behave like...like a normal kid. She hasn't used her eating tube in four or five days, because she's eating everything through her mouth via a bottle. She eats in excess of her required 38 cc per feeding, each feeding. She's doing all the things babies do, including getting spoiled by her mom.

When she's awake, she looks around. Last night I was sitting with her face down on my chest, but she didn't want to sit that way. So she started flopping her head around so she could see.

While Zoe does bear some symptoms of trisomy 18, including her middle finger pressed against her palm and an occasional tendency for her eyes to roll back, I'm not sure if you all could tell that she looks like much else besides a little tiny baby. But, she has trisomy 18 in each of her cells, which..here's a link to show what that means.

It Could Be Worse

I'm driving in today through the fog. Day 2 of the rain.

Has my life become a Shakespearean play?

Enter Greg, soaked from the rain, peering through the fog.

Greg:
Blow, winds, and crack your cheeks! rage! blow!
You cataracts and hurricanoes, spout
Till you have drenched our steeples, drowned the cocks!
You sulphurous and thought-executing fires,
Vaunt-couriers to oak-cleaving thunderbolts,
Singe my white head! And thou, all-shaking thunder,
Strike flat the thick rotundity o' the world!
Crack nature's molds, all germens spill at once
That make ingrateful man!

My mind flits to "Young Frankenstein" where Igor offers that it could be worse. It could be raining. And then it starts pouring on them. I looked for the YouTube of it, but alas, it's not there.

I hereby offer ways it could be worse, two serious, and the rest...not.

1. You all wouldn't be here for me and my family.
2. All God's promises aren't true.

Not:
3. The internet could go down and this blog would become a chain letter.
4. Businesses worldwide discover that advertising doesn't do really do anything.
5. ABC cancels Lost after this season.

Please add to my list. Just make sure you add one for each...at least.

Learning To Know Him

"...It is just here, where God's providence seems at first to be most cruel, that the Divine humility, the stooping down of the Highest, most deserves praise. We are perplexed to see misfortune falling upon decent, inoffensive, worthy people- on capable, hard-working mothers of families or diligent, thrifty little tradespeople, on those who have worked so hard, and so honestly, for their modest stock of happiness and now seem to be entering on the enjoyment of it with the fullest right.

"How can I say with sufficient tenderness what here needs to be said? ...Let me implore the reader to try to believe, if only for the moment, that God, who made these deserving people, may really be right when He thinks that their modest prosperity and the happiness of their children are not enough to make them blessed: that all this must fall from them in the end, and that if they have not learned to know Him they will be wretched. "

-The Problem of Pain

Keep Praying

...for Teia Izzi and Kellen. They are going through a significant amount of trials that you can read about at Izzi's blog.

What Abraham Was Feeling

1 Some time later God tested Abraham. He said to him, "Abraham!"
"Here I am," he replied.

2 Then God said, "Take your son, your only son, Isaac, whom you love, and go to the region of Moriah. Sacrifice him there as a burnt offering on one of the mountains I will tell you about."

3 Early the next morning Abraham got up and saddled his donkey. He took with him two of his servants and his son Isaac. When he had cut enough wood for the burnt offering, he set out for the place God had told him about. 4 On the third day Abraham looked up and saw the place in the distance. 5 He said to his servants, "Stay here with the donkey while I and the boy go over there. We will worship and then we will come back to you."

6 Abraham took the wood for the burnt offering and placed it on his son Isaac, and he himself carried the fire and the knife. As the two of them went on together, 7 Isaac spoke up and said to his father Abraham, "Father?"
"Yes, my son?" Abraham replied.
"The fire and wood are here," Isaac said, "but where is the lamb for the burnt offering?"

8 Abraham answered, "God himself will provide the lamb for the burnt offering, my son." And the two of them went on together.

9 When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood. 10 Then he reached out his hand and took the knife to slay his son. 11 But the angel of the LORD called out to him from heaven, "Abraham! Abraham!"
"Here I am," he replied.

12 "Do not lay a hand on the boy," he said. "Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son."

13 Abraham looked up and there in a thicket he saw a ram ^[a] caught by its horns. He went over and took the ram and sacrificed it as a burnt offering instead of his son. 14 So Abraham called that place The LORD Will Provide. And to this day it is said, "On the mountain of the LORD it will be provided."

I've gone through this passage a lot in my life, and either you brush over it without much thought or emotion, or you stop and wonder what Abraham was thinking. Did he know that this was a test, and that God would deliver him? Why would he obey?

Abraham cried the whole way up the mountain. And he didn't know it was a test. He got a command directly from God - an irrefutable command - and so he somberly began to carry it out. And he cried a lot. He cried over the lost dreams of time with his son. He cried over the impossible thought of bringing harm to a loved one.

There was solace in God's promises, but then again, Isaac was the fulfillment of one of those promises. What was going on? Abraham didn't struggle to understand. He struggled to breathe.

And he struggled to even look at Isaac. Looking at Isaac would make obedience even harder. But then not looking at Isaac when it was the last moment he was going to be alive would be equally as painful. So he wept as he peeked over at his son.

And then his mind would flit to the actual act. Should he use this knife? Smother him? One clean stroke - and then he'd catch himself thinking about his son's death, and he would become nauseous. Somehow he had been asked to assume a higher level of obedience, and he wasn't ready. But he trudged onward.

Isaac asked the question, I think, to kind of wake his dad up from his tears. He saw Abraham was upset and thought he'd ask a basic question, maybe snap him out of his funk. But in this moment of obedience, even the most normal questions have a terrible weight.

Isaac still didn't get it, probably not even when he was laid on top of the wood. I doubt he feared. His father wouldn't hurt him. And Abraham wished he didn't have to. Is there a way to fulfill God's promise without my child hurting? Is this up to me?

The knife was held high. It's blade caught the sun. Abraham shook in tears and gasped for a breath, for any strength to obey. Isaac's big eyes met his father's.

Happy Birthday, Allana!

Allana and Teia relaxing.


Allana is 12 today. She's Kirin and Steve's oldest kid and has grown into a very smart and kind girl. Allana has a gentle spirit and intuition. She is also quite an athlete. Happy Birthday, Allana!

Cloud of Witnesses

1Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. 2Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.

I think we can sometimes lose sight of the power of prayer. We can describe personal tales where we prayed hard about something close to us and saw God act, but sometimes its harder to describe the effect of a prayer on someone far away, or someone you've never met.

All of us at the Batiansilas are living in a life protected and buoyed by your prayers. We've felt despondent, but never alone. We've felt anger and been confronted with a strong desire to lash out, but it was always curbed. The kids have suffered truly low moments. Dark thoughts and questions. But they've seen God and His promises through it all.

On Sunday, I was really concerned about entering church on time. I just didn't want a grand entrance, didn't want...the attention. It's such a human, such a childish emotion. I want you to look at me when I say. Not when you want to.

But being in church solved those childish emotions. Just praising God next to my family with my brother. And we could only leave slowly with the people who wanted to say hi and give words of encouragement and peek at the 4 pound 13 ounce miracle.

God has chosen this moment for us, and for you, to be in certain places. For us to face one of the strangest, saddest, most faith-filled moments, and for you to pray and pray and pray. We are so grateful for your prayers. Believe me that they are, at times, all that has lifted our heads and kept our eyes on Him. Thank you.

Batiansilas Visit With Zoe

Deirdre, Renee, Bat and Christa all visited this weekend while Andreas was around.

Coming And Going And Dancing

Andreas still is at the Casa de Lakeside. Rumor has it Bat and Christa, Renee, Jim, some Renees, Kirin, maybe Charis are gonna roll in sometime today.

Heidi finished her second to last performance in "The Thorn" yesterday. I've had the info for a few weeks, but it was a huge performance of dancing and some kind of martial arts fighting and I think Cirque de Soleil guys all acting out the life of Jesus.

Update: Kirin opted out with some health issues and may be replaced by Deirdre...

Easter People

Two weeks ago, on Easter, I told you our hope does not rest in a frail baby's heart. Our hope certainly cannot rest with me. We have something stronger and surer.

I'm sitting here listening to music and reading your comments and emails and I want to encourage you to believe with me. Believe with me that nothing is wasted, not even the pain we endure. Believe it's true. He has never abandoned you. Or me. Or Zoe. or Jen. Or Kellen. Or Ted. Or Ted. Or Mipps. Or Bat. Or Christa. Or Terry. Or Tracey. Or Birdy. Or Renee. Or Jim. Or Deirdre. Or Erika. Or Mandi. Or Andreas. Or Kirin. Or you in Iraq. Or Teia. Or Selah.

Do you remember who He is? Remember who we are. We are Easter people. The unabandoned. Believe with me.

Believe Me Now
by Steven Curtis Chapman

I watch you looking out across the raging water
So sure your only hope lies on the other side
You hear the enemy that's closing in around you
And I know that you don't have the strength to fight
But do you have the faith to stand and...

Believe Me now
Believe Me here
Remember all the times I've told you loud and clear
I am with you and I am for you
So believe Me now
Believe Me now

I am the One who waved my hand and split the ocean
I am the One who spoke the words and raised the dead
And I've loved you long before I set the world in motion
I know all the fears you're feeling now
But do you remember who I am?
Do you..

Believe Me now
Believe Me here
Remember all the times I've told you loud and clear
I am with you
And I am for you

So believe Me now
Believe it's true
I never have, I never will abandon you
And the God that I have always been
I will forever be
So believe Me now

I am the God who never wastes a single hurt that you endure
My words are true, and all My promises are sure
So believe Me now
Oh, believe Me now

Welcome Switzerland!

Welcome visitors from Switzerland! (Perhaps it's just my bankers checking in).

We're Just Stuck On The Ground For A Little While

Saturday Morning. Woken up every 2.5 hours last night by a hungry Zoe. In the old days that would have been torture. But you find a different energy. Zoe'll do that to you. She beat the world another night, and her eyes get to see a blue sky sunny day.

Ethan's begging me to wear shorts. Aidan's in Packer garb, including the helmet. Last time Ethan wore it and he played football against Aidan. Ethan was the Packers. Aidan was Spiderman. Kellen says Spiderman crushed the Packers.

Andreas called from the highway. He slept on a bench at Midway Airport until the rental car place opened. He said it was a really comfortable bench.

A couple hours of sleep and a cup of coffee and some Mandisa jacked up because there's breath in everyone's lungs here.

And last night's tears, yesterday's long visits with the doctor were only the world. Only the world. Anyone feel me?

Only The World
by Mandisa

Been a hard one, Been a bad one
Been a tough one, Been a sad one
It's been one of those days that keeps chipping away at my heart
Nothing new here, It's what I do here
its a stereotypical day, in the life
I'm surrounded by all of the pain and the strife
but I know it's alright, woah oh

Cause it's only the world i'm living in (hhhmm)
It's only today i've been given
There ain't no way i'm giving in
Cause it's only the world (oh cause it's only the world)
I know the best is still yet to come
Cause even when my days in the world are done
There's gonna be so much more than only the world for me (so much more, much more)
do do do do do do do do do, yeah its only the world (o cause its only the world)

Anybody can you hear me?
Do you feel me? I mean, do you feel me?
I know I'm not the only one wearing the weight of this world
We got problems (said it's alright)
Just remember (yeah, it's alright)
Take a good look around we're just stuck on the ground for a little while
Don't it make you smile

Cause it's only the world i'm living in (Yeah)
It's only today i've been given (given, given)
There ain't no way i'm giving in
Cause it's only the world ( o cause its only the world)
I know the best is still yet to come (yet to come)
Cause even when my days in the world are done (days are done)
There's gonna be so much more than only the world for me (o cause its only the world)
do do do do do do do do do, yeah its only the world (its only the world Yeah)
do do do do do do do do do, yeah its only the world(Oh it's only the world)

Heaven is a place where the tears on every face will be wiped away
Oh And I can't wait to go, but for now it's enough to know
This is only temporary this is only, Yeah, Alright!
Oh its only the only the world.

Zoe Update

Zoe is at home now, and is eating 40 cc of bottle every three hours or so. She seems to actually be taking the formula better than breast milk, and twice today was able to take the entire bottle through the mouth.

When she can't or won't take the entire recommended amount, the rest is given her through an NG tube that is in her nose.

Today she went in to the doctor and weighs about two ounces more than she did when she was released. She's also about an inch longer.

The younger 4 kids really love spending time around her. They're talking to her and stroking her hand. Selah did some great holding, and Zoe did spend some time in both big sis's arms.

Sing, We Will

Thanks to everyone for your emails and comments encouraging us to keep on singing. You're right. Deirdre's comment was right on when she mentioned that Zoe obviously responds to Jen's presence in the room. Whether it's vibrations from Jen's voice or Jen's magnetic presence, we might not know. But her daughter knows when mom is there.

Jen and I have already contacted St. John's asking for an opportunity to sing, so we'll see how that goes.

Andreas En Route

Andreas has been pressing to make it back to Wisconsin for a number of days, and he's actually in the air somewhere right now. He hopes to stay until Monday night.

We talked a bunch of times about visiting and when, and his hope is to spend some time with us and celebrate a few days of Zoe's life. We're all excited that he'll be around.

Kirin also mentioned she might be making it this way...and maybe Bat and Christa. We'll see and update you all as things happen.

Family Friday

For this moment, Friday night, all is as it should be. "Enchanted" on DVD. Zoe in Jen's arms and Selah leaning her head on Kellen as he played PSP and peeked up now and then. Izzi bouncing between watching and talking to Michael on the phone. Elise made it through the first hour. The boys watching intently, studying and measuring the movie. Teia and I sharing the end of the sofa, a little swept away by it all.

After the movie, Teia and I talked about how deceiving the night was. Peaceful. The worst spectre was an evil queen with magical powers, far far away in some fairy tale.

Keep Pressing On.

Maybe the coolest thing a bout the below is how chronologically arrogant we are. Wait..people 1500 years ago talked like this?

Augustine, Bishop of Hippo (354-430)
Sermon 256

Here...amidst the dangers and trials we and others must sing Alleluia, "for God is faithful and he will not let you be tempted beyond your strength," as Paul says. So then we must also sing here Alleluia. Man is still a sinner, but God is faithful.

Scripture does not say,"He will not let you be tempted," but "He will not let you be tempted beyond your strength, but with the temptation will also provide the way of escape, that you might be able to endure it."... How happy will be our shout of Alleuia there, how carefree, how secure from any adversary, where there is no enemy, where no friend perishes.

There praise is offered to God and here, too, but here it is by men who are anxious, there by men who are free from care, here by men who must die, there by men who will live forever. Here praise is offered in hope, there by men who enjoy the reality, here by men who are pilgrims on the way, there by men who have reached their own country.

So, brethren, let us sing Alleluia, not in the enjoyment of heavenly rest, but to sweeten our toil. Sing as travellers along the road: but keep on walking. Solace your toil by singing --do not yield to idleness. Sing but keep on walking.

What do I mean by "walking"? I mean, press on from good to better. The apostle says there are some who go from bad to worse. But if you press on, you keeep on walking. Go forward then in virtue, in true faith and right conduct. Sing up--and keep on walking.

Welcome Netherlands and Japan!

Batiansila Blog, the international webblog powerhouse, welcomes visitors from two more countries. We are fast becoming the world-wide leader in Batiansila News.

Deirdre: Not 50

Deirdre has expended a good amount of energy insisting she is not 50. She's right. She's not. Deirdre is not 50, she's 49, which is younger, more spry. 49 means a little bigger bounce in her step.

It also means different - purer, even - things for Bat and Christa's 50th anniversary this summer.

Grey Day

2 AM and I'm still trying to clean up today's mess in my head.

What started out as a day with an endless blue sky turned into a grey day. Paint it with the color of faded straw and dead greens. The color of plowed fields and wet pavement. Cold wintry rain splatters windshields.

Zoe and Jen are home. Hallelujah. The discharge took an eternity, with paperwork and visits and tests. Before they left, Zoe was given an hearing exam, which showed she is deaf.

For some reason, this news was as jarring to me as any I've received in the last 2 weeks. More jarring than sitting in the pharmacy and trying to figure out how many days you'll be renting a breastfeeding pump. 7? 30? 90?

I think it's because it adds to the helplessness I feel with everything. To know my singing to her over the last two weeks went unheard is a fitting metaphor to how meaningless all my gifts and energy feel to this whole situation.

Jen's struggling, too. For some reason, her milk production has stopped. It might have been malnourishment. Maybe it's stress. Just an hour ago, she was in tears explaining the only way she felt she was contributing was drying up. Like singing to a deaf child.

So it was Walmart at 1 AM. I'm always tempted on those late night trips to get a little something for me. I'm not sure why. I wandered the book aisle, quick glanced at candy. Just the formula tonight.

On the way home, I saw a message on my cell - somehow I'd missed a call at some point tonight. Just a relative telling me they were a little disappointed in me. That seems about right. I'm a little disappointed in this whole day.

Grey day. I'm sitting here knowing that they'd all be grey if it weren't for the sacrifices and prayers of so many. Yes, even you, disappointed relative.

Home Today?

Zoe and Jen are likely coming home today. This is a big relief to our family. Zoe's bilirubens are static at this time, and while there is a chance of complications, we're going to encounter that at home, with sunlight and a different spirit than Children's.

Doctors Basir and Humphrey have approved the move, so we'll see if any obstacles lie in the way of a return this A.M.

Please don't stop praying. Thank you so much, everyone, for praying.

The miracle you've been praying for is Zoe's birth - thousands of trisomy 18's never are born. Zoe's 7th day - 50% of trisomy 18's never make it past that day. Zoe's breaths and life today. That's the miracle you've been praying for.

I believe that how you and I face the reality of life and death and God's promises today will effect whatever God has in store for Zoe in the future. "Child," said Aslan, "did I not explain to you once before that no one is ever told what would have happened?"

Brothers of Elephants Forget

Happy Birthday Deirdre. Late.

Batiansila News Service regrets to inform you all they forgot about Deirdre's birthday. And it was a biggie. She turned 50 years old. That's very old. She is well-preserved and really in the top physical, mental and spiritual shape of her life.

Hope, Coffee and a Melody

Another smile...a ray of sunlight. If you have read this blog, you'd know how often I've referred to the Robbie Seay Band. Here's an article about RSB being featured in Oprah's prime time show. Here. Here. Here.

And... the post just below.

So imagine my surprise - stunned honor - when Robbie his ownself posted a comment! Wow.

hey brother
thanks for your post on our blog
we're praying for you guys and for zoe
i know its a crazy season and its humbling to know our music is a part of this journey with your family

with love and prayer from all of us with rsb,
robbie

All That Is Inside Me Screams To Come Back Home

The latest news about Zoe is that the doctors want to 1) ensure that she can handle additional food intake and 2) that her bilirubens go down. The truth is that if either 1 or 2 goes bad, then...then bad things will likely happen.

So pray for Jen and Zoe, so that they can come home. That Jen can leave that windowless room and sleep in her bed, that Zoe can hear the noise and clamor of "Alvin and the Chipmunks" like I did tonight as four kids hopped around to it. If it can't bring healing, and it can't bring peace, at least it will bring a little bit of our reality into her life.

I've been holding on.

Shine Your Light On Us
by Robbie Seay Band

Oh, my God
Shine Your light on us
That we might live

I've been holding on
I've been holding on
All that is inside me
Screams to come back home

If you feel lost
If you feel lost
Sing along
If you feel tired
If you feel tired
Sing along

If you feel lost and tired
This is your song

I've been broken down
I've been broken down
I ain't giving up
Love will come back around

Shine Your light
Shine it down
Let Your rescue come for us, we long to love

And if you feel lost, sing along
And if you feel tired, sing along

Family

Teia B. put this together for Ms. Chris over a month ago. How appropriate today...how appropriate all the time. We are all going home.


Family
by Amy Grant
Where have you come from?
Where are you going?
Tell me what's brought you here now.
And is your heart singing?
Then share what your bringing;
We all are a part of the show.

'cause we are all going home,
'cause we are a family,
And we are all going home.
Are you listening?
We are all going home,
So come join the family,
'cause we are all going home.

But is your heart quiet?
Is something not right?
Can you tell me whats blocking your way?
Well, just ask the Father;
He knows every problem.
He'll carry that burden away.

'cause we are all going home,
'cause we are a family,
And we are all going home.
Are you listening?
We are all going home,
So come join the family,
cause we are a family,
And we are all going home.

Yes, we are all going home.

2 "This is what the LORD says, he who made the earth, the LORD who formed it and established it—the LORD is his name: 3 'Call to me and I will answer you and tell you great and unsearchable things you do not know.'

Newer Zoe Pics

Sorry guys...the previous link wasn't quite what I wanted it to be. Here's some more recent Zoe pictures.

Happy Birthday, Heidi!

Heidi is the second oldest Batiansila kid. She's a wonderful mom of two boys, a loving wife and a great Christian witness. The Batiansila News Service is unsure of Heidi's age, but it's pretty old. Maybe 50.

Welcome Mexico!

Batblog would like to welcome Mexico to its list of countries represented. Shine on, Zoe.

For Zoe

Dr. Humphrey, the head of Children's Palliative Care Team, has told us to make decisions based on what Zoe is telling us.

Right now, Zoe is in my lap, and she's doing good. Her dark eyes are staring up at my glasses and she's very comfortable. For those of you out there worried about "quality of life," I'll offer that her quality of life is very good. So we're going to work hard to get her home soon. That's what Zoe is telling us.

Zoe is telling me other things. Each day is precious, and the moments we've been given are special opportunities to be the people we were called to be.

That's why I stood on the porch outside some old friends this weekend. We hadn't parted on the best of terms back then - ok, we parted on absolutely awful terms back then - and neither of us have done anything special to renew our friendship. The result was passable - the kind of existence that allows for, when you see them in the store or in a hall somewhere, you nod and smile and wave. Good enough for a wave.

A wave. But that's not what Zoe was telling me. So I rang the bell.

I told my old friends the whole story, even invited them to the blog. But mostly I told them that whatever is between us, whatever it is...time and pain or anger and sadness....it has to stop. We can't live like this anymore. Like Switchfoot says, "We were meant to live for so much more." Zoe certainly was.

The Dead Fire

C.S. Lewis' masterwork "The Screwtape Letters" is an imagined conversation between a senior and junior demon, as the senior coaches the junior on guiding a human target to hell. Here's an excerpt:

"As this condition becomes more fully established, you will be gradually freed from the tiresome business of providing Pleasures as temptations...you will find that anything or nothing is sufficient to attract his wandering attention.

You no longer need a good book, which he really likes, to keep him from his prayers or his work or his sleep; a column of advertisements in yesterday's paper will do. You can make him waste his time not only in conversation he enjoys with people whom he likes, but in conversations with those he cares nothing about on subjects that bore him. You can make him do nothing at all for long periods. You can keep him up late at night, not roistering, but staring at a dead fire in a cold room.

All the healthy and outgoing activities which we want him to avoid can be inhibited and nothing given in return, so that at last he may say, as one of my own patients said on his arrival down here, "I now see that I spent most of my life in doing neither what I ought nor what I liked".

The Christians describe the Enemy as one "without whom Nothing is strong". And Nothing is very strong: strong enough to steal away a man's best years not in sweet sins but in a dreary flickering of the mind over it knows not what and knows not why, in the gratification of curiosities so feeble that the man is only half aware of them, in drumming of fingers and kicking of heels, in whistling tunes that he does not like, or in the long, dim labyrinth of reveries that have not even lust or ambition to give them a relish, but which, once chance association has started them, the creature is too weak and fuddled to shake off."

I've always likened the dead fire in a cold room to late night internet surfing, where you're just staring dead eyes at whatever mindless and pointless site will distract you.

But our lives are filled with dead fires. Facebook and Guitar Hero and TMZ.com. Time wasted for the sole purpose of doing nothing.

Meanwhile Hayden and his mom hurt.

Hayden's in the room across the hall from me now, and he's still crying. He was born three months early, and has cerebral palsy. On Sunday, he celebrated his second birthday here at Children's Hospital.

Hayden cries and cries and cries. He cries so much we've shut our door because it's so hard to listen to. It's hard even for his poor mom, who keeps leaving the room with a worried and harried look on her face. Her son is sapping her strength and hope.

How many Haydens are there here at Children's? How many in the hospital closest to you? How many parents are there, weeping and spent? Malnourished and exhausted...and ignored? Ignored while we look for the remote?

I say "we" because I'm chief of the ignorers. The truth is, Satan doesn't tempt me with pleasures anymore. I'll settle for a poorly written gossip column instead of turning my time or talents or prayers to Hayden and his mom.