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.