Josh's EP

Teia took this picture of Josh for his cd.

Zoe's uncle - Jen's brother, Josh - is the most gifted musician I'll ever meet. A long time ago, I sang with Josh long before I knew his sister. Long ago, he was rollerskating in the basement with Teia, Isabel and Kellen.

Some of Josh's undeniable gifts are here for you to enjoy. I say "some" because whatever you hear here is a fraction of the composer and musical savant he is. He's been blessed to record a number of songs with a recording company in Chicago. Let his label know he's the real deal. And he is. Please support my brother in law and friend, this wonderful talent.

Birthday

I tried to give Jen a break and make it through the night on another floor of the house behind a closed door with Zoe. Jen needs and needed a break for so many reasons, the top two being she's running auditions for an upcoming project this morning and she's been going sleep-deprived for weeks.

Zoe is sticking with us. She has some kind of troubled breathing every once in a while and her color isn't what it was. What that means to us...we don't know. The hardest part of this is trying to imagine what's going to happen tomorrow, or next friday (Mother's Day and Jen's Birthday respectively) and trying to plan is hard to envision without imagining the worst.

Deirdre asked me what I'm doing for Bat and Christa's anniversary next month. It seems an eternity away. Too far away to speak with any clarity.

As Lewis wrote, "Meanwhile the cross comes before the crown and tomorrow is a Monday
morning. A cleft has opened in the pitiless walls of the world, and we are invited to
follow our great Captain inside. The following Him is, of course, the essential
point."

So, my neck is sore and I'm only one cup of coffee into this day. But it's a new day, and I'm holding Zoe in my lap. It's a new day, baby. A week ago, we had friends over and Josh sang us some of his stuff, and then we broke into "New Day." It might just be the prettiest thing you've ever seen.

Zoe Update

Zoe is doing ok. It's a much better week than last week in a lot of respects. Her breathing is worrisome. It's shallow and at times, labored. The visiting nurse said her lungs are clear.

Zoe's color is a little less ruddy than it was. Sometimes when she cries now she has a blue tinge. This was an expected side effect of her heart defect.

She's still eating through the night. We're glad we removed her feeding tube all those weeks ago.

Tomorrow will be day 49.

Hard To Help

Are you hard to help?

I know I am. I know the family is. Part of it is beyond our control. There are so many moving parts in our family that if you said - I will give them X, it's difficult to say that X would serve everyone in our family. Or anyone.

"Do you need help with rides?," someone asked us. Yes. But it changes day to day. It's the kind of answer that might fascinate someone, but we're figuring out rides today for today. And the earliest we'd have known about today is probably last night.

What I'm saying is between Zoe and kids at one school for 1/2 day, kids at another for a full day, practices, jobs, my job, kids at a third school, groceries...sure, we need help with rides. But it doesn't flow into a normal calendar.

Same with food. Jenny likes mushrooms. The rest of us don't. Selah's diabetic, so we need to know the carbs in what she's eating to give her an appropriate shot of insulin. The boys...well, they're the boys. They're not quite catching onto pasta and sauce. They're trying. 9 people is a lot of people for X.

On the other hand, we're hard to help because we don't know why we'd need help. Our pride gets in the way, as does our stubbornness about retracting ourselves out of our own pit. One author I read says, "It's hard to hug stiff people."

It's an tall order. Facing a trial requires a "stiff upper lip" and "backbone." Our natural instinct is to either fight or flee. Being helped is neither. Receiving help requires humility.

This is the Batiansila's longform apology and thank you to everyone. We are not used to getting help but we are grateful for what you've been doing. Your prayers, your dishes. The gas cards. The Y membership! The visits. The earnest wishes of hope and thoughtfulness. You have been the face of Christ to us. Our prayer is to receive his hug with less stiffness.

In Joy And Pain

Never Let Go
by David Crowder Band

When clouds veil sun
And disaster comes
Oh, my soul
When waters rise
And hope takes flight
Oh, my soul

Ever faithful
Ever true
You I know
You never let go

When clouds brought rain
And disaster came
Oh, my soul
When waters rose
And hope had flown
Oh, my soul

Oh, my soul
Overflows
Oh, what love, oh, what love
Oh, my soul
Fills hope
Perfect love that never lets go

Oh, what love, oh, what love
Oh, what love, oh, what love
In joy and pain
In sun and rain
You're the same
Oh, You never let go

What Jen Prays For - Bargaining Part II

Jen called to ask me if I was saying it was wrong to pray for healing. Which is a good question. I was actually leaving that open to responders.

Jen prays for two things: 1) if this is the way it is, Lord, the way it must be, please let her go to you quickly and painlessly 2) for complete healing.

One of Jen's friends asked her if she should be praying to remove a chromosome or add one? The prayer would be to remove one. From every cell in her body.

I stress I don't doubt God's might. My post was to show how I was trying not to doubt His will.

bargaining

of all the stages of grieving, bargaining is the most deceptively selfish.

On its face, it sounds kind of noble and insightful. We're begging God to rethink what He's done and consider an alternative. Perhaps you could give me a terminal illness. Here's a thought: perhaps Britney Spears' kid could have the terminal illness. Maybe one of those kids I see on those late night commercials in Africa could have the terminal illness.

Anyone who has a newborn knows that by the second or third night of a 3 or 4 am feeding which followed the 11 which followed the 1:30, you've now been broken. You're emotional. That's usually the time of morning/night where I look at Zoe and see her eating from her bottle, her eyes exploring the room's darkness and cry. You could have given this to me. She's just a little kid.

Here's a bargain I offered God this morning: how about you heal her? Think of the people who would be amazed and drawn to you if full Trisomy 18 was removed from her body! Huh? Think about it, God. I think it's what ran through the minds of these parents. They believed strongly that God was mighty, that God was capable, and that their daughter would be healed. Is there anything wrong with their faith?

I take nothing from God's might. If God wanted, He could make a Zoe from nothing, from the dying plant on my desk. If He wanted, He could remove a chromosome and Zoe could pick the music for her own funeral. But I'm hearing His answer, at least for now, and it's that your ideas are only ways for Greg's will to be done. I have a plan.

I Don't Belong Here

Wake up. Blink sleep from your eyes. Try to recount whatever you left in your brain from the night before. Somewhere between the shuffle to the shower and the water splashing and coursing off your skin, it starts to hit you.

I don't belong here. I don't. Our bravest attempts at beauty and attempting to answer God's call are routinely met with distrust, disdain and ignored. There's no such thing as a perfect fit. There's no such thing as a dream job. There's no such thing as home sweet home.

I have proof: a past littered with brokenness and pain; a present with uncertainty and questions. My father's cancer. Zoe. Divorce. A bad cylinder in our car. My boss. Our tenuous rental. Jen and I singing. Diabetes. A bad back. Bills and bills.

2 "Meaningless! Meaningless!"

says the Teacher.
"Utterly meaningless!
Everything is meaningless."

3 What does man gain from all his labor
at which he toils under the sun?

4 Generations come and generations go,
but the earth remains forever.

5 The sun rises and the sun sets,
and hurries back to where it rises.

6 The wind blows to the south
and turns to the north;
round and round it goes,
ever returning on its course.

7 All streams flow into the sea,
yet the sea is never full.
To the place the streams come from,
there they return again.

8 All things are wearisome,
more than one can say.
The eye never has enough of seeing,
nor the ear its fill of hearing.

9 What has been will be again,
what has been done will be done again;
there is nothing new under the sun.

10 Is there anything of which one can say,
"Look! This is something new"?
It was here already, long ago;
it was here before our time.

Sunday Visitors

Heidi and Phil came to church and then spent a sunny Sunday at the Lakehouse. It was wonderful to see my big brother and sister.

Phil and I took the canoe out to tour the lake. As we made it around the bend in the middle of the lake, my paddle snapped in half. So using my splintered paddle, into the wind, we gunned it back to shore. I'm familiar with paddling with something less than a full-sized paddle. Splintered, even.

Zoe's Curlyque

Ever since she's been a newborn, Zoe's had this little black lock of hair longer than the other hair on her head. It continues to grow. So do her bony skinny legs. And her fingernails.

Yesterday she was whining and fussing while her Uncle Phil was holding her. When her mom took her from Phil, she shut up right away.

We press on...on to prom night this weekend, Jen's birthday. We're thinking more about living than dying these days, and that's a gift.

Still Obeys

From C.S. Lewis' masterwork, "The Screwtape Letters." A senior devil is teaching a junior devil how to get a human to go to hell. (so..."The Enemy" is God. And we humans, to a depraved, sinister spirit, are "its.")

...He leaves the creature to stand upon its own two legs - to carry out from the will alone duties which have lost all relish. It is during such trough periods, much more than during the peak periods, that it is growing into the sort of creature He wants it to be.

Hence the prayers offered in the state of dryness are those which please Him best....He cannot 'tempt' to virtue as we do to vice. He wants them to learn to walk and must therefore take away His hand; and if only the will to walk is really there He is pleased even with their stumbles.

Do not be deceived, Wormwood. Our cause is never more in danger than when a human, no longer desiring, but still intending, to do our Enemy's will, looks round upon a universe from which every trace of Him seems to have vanished, and asks why he has been forsaken, and still obeys.

So Proud

Halfback delay, the way Coach Spera drew it up, was an ingenious 7-man flag football play. The wideout would run a deep route up the middle, sucking the safety and corner in. The backs would line up and hold as if to block. But the inside back was only faking a block. He'd slip out and run a bubble route in the zone the wideout had left.

On that day when I was in 7th grade, we played Atonement, and halfback delay ruined them. The safety turned in, and I'm not sure the defense even saw me, the littlest kid in my class, faking a block and then slipping into the flat.

Once I had the ball in my hands, it didn't matter how close they were. At that instant, I was my father, who played football from when he was a kid all the way through college, who told me he'd run a fly pattern and know "no one could catch me." No one was going to catch me. 90 yards. No one was going to catch me. At the endzone, for a flicker of a second, I was something older than me, sharing a moment of electric communion with victors past. I was my father, I was Jesse Owens in Berlin. I was Odysseus triumphantly returning home.

You've seen athletes experience it today, and you wonder why they're so jubilant. If it's a show. Maybe for some, but most are trying to explain that moment of oneness that is older than anything in their experience.

This is what God has given us - a chance to experience something that defies our experience and memory. An idea of more beyond what we can recall or prove. I look at my beloved and I am awed. Smitten. I am Jacob, his eyes fixed on Rachel. Tristan and Romeo. Shakespeare refining a word to a meter only he knows. I am dancing a dance older than me, a love old as time.

And truthfully, it can be a painful dance. I have been Judas. David, murdering to sate a lust. Peter denying his friend and teacher. It's an equally electric moment, and as old as Adam.

My mom wrote me a note when I went off to college. It was just a line. "Greg, we are so proud."

I look at my daughter on her 42nd day. Trisomy 18 babies don't live. She woke up early this morning and decided living was worth fighting for. She has a hole in her heart and an extra chromosome that bludgeon her, weaken her every day. But today, she is her grandfather, fighting cancer, rising and deciding life is worth living for. She is her great grandfather, awake in a prison camp with encephalitis and deciding that life is worth living for.

And I am my mother. I am God, looking down at his child and telling her and anyone who'll listen that I AM WELL PLEASED. Look at her. Look at her. That's my kid. I am so proud.

Zoe's Weight

It may be possible for each to think too much of his own
potential glory hereafter; it is hardly
possible for him to think too often or too
deeply about that of his neighbour.

The load, or weight, or burden of my
neighbour’s glory should be laid daily on
my back, a load so heavy that only
humility can carry it, and the backs of the
proud will be broken.

It is a serious thing
to live in a society of possible gods and
goddesses, to remember that the dullest
and most uninteresting person you talk to
may one day be a creature which, if you
saw it now, you would be strongly tempted
to worship, or else a horror and a
corruption such as you now meet, if at all,
only in a nightmare.

All day long we are,
in some degree, helping each other to one
or other of these destinations. It is in the
light of these overwhelming possibilities, it
is with the awe and the circumspection
proper to them, that we should conduct all
our dealings with one another, all
friendships, all loves, all play, all politics.
There are no ordinary people. You have
never talked to a mere mortal.

One thing i notice about Zoe's life-changing time with me is that her life-changing abilities may have more to do with me than Zoe herself.

I know that Zoe is a gift. That each breath she takes is a victory. That her smiles, her sighs, her eyes are all wonderments.

But can I not attribute the same glory to my other children? To you?

C.S. Lewis in the above "Weight of Glory" addresses our indefensible treatment of each other. How our actions are helping push someone to heaven or hell. Everyone is a Zoe, whose breaths are numbered, whose days are short. Whose frailty, while better hidden, is apparent.

We bear the weight of Zoe's glory. It is a heavy load. But we also should equally bear the weight of our neighbor and our daughter and our boyfriend's glory. What if any of those had days to live? Would you be so cavalier with them? Would you pray for them a little more? Take their words and pains a little more seriously?

Visitors This Weekend

Sister Heidi is planning on coming this way sometime this weekend and a crew of Avicomers hope to drop by.

Applause

Church last night was a festival of music from wave after wave of choirs. The most fascinating part of the night was our congregational response to the choirs. If the singers were kids, we applauded heartily. If the choir was comprised of adults, there was a latent moment of silence followed by an uncomfortable silence as the choir filed back to their pews.

Which instinct was wrong? The one to applaud children or the one to not applaud adults?

Well, some of you might posit, we can't have a service filled with applause. To which I'd answer...why? What are we afraid of? Is God displeased with applause?

Courtesy of Sam Provenzano

Zoe's Eye

Zoe presses her head into mom's chest and turns her head so she has one eye open...and she peers around. Looking, studying. Learning. Living.

Praise You In This Storm

Jen got into the car last night and begged God for a song. Then she turned on the radio and heard this. Pray for Jen.



Praise You In This Storm

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Sent To Try Us?

Lewis grieves the loss of his beloved:

How far have I got? Just as far, I think, as a widower of another sort who would stop, leaning on his spade, and say in answer to our inquiry, 'Thank'ee. Mustn't grumble. I do miss her something dreadful. But they say these things are sent to try us.'

We have come to the same point; he with his spade, and I, who am not now much good at digging, with my own instrument. But of course one must take 'sent to try us' the right way.

God has not been trying an experiment on my faith or love in order to find out their quality. He knew it already. It was I who didn't. In this trial he makes us occupy the dock, the witness box, and the bench all at once. He always knew that my temple was a house of cards. His only way of making me realize the fact was to knock it down.

35 days

after a doctor told us that Zoe had trisomy 18, she looks tired. It could be anything. But she looks tired.