Y'ALL READY FOR THIS?

Hey it's concert day!
From Melbourne, Australia to Green Bay, people are emailing and calling with their well-wishes.
Tonight...God will do something special.

Tonight people who have never set foot in a church are going to church. Tonight a little girl who was given a few days will bring her 108 day old self. And her uncle's going to sing. And, tonight an artist who actually reads his own email and lives what he sings is going to sing.

Thank you all for keeping my head up. This blog started out as one thing..it became a place where people from Australia visit.

My daughter, my family, Robbie Seay...and God. Together. If you've read any little bit of this blog, you know what a special thing that is to Teia and Kellen and Izz. and Selah. And Elise. And their dad.

And the Spirit who calls us all.

**UPDATE**

I was reminded I didn't mention Jen or the boys above...only because the boys aren't sure who Robbie Seay is. But I know they're going to have a great time. Last night I came home and Ethan spun around in the computer chair and asked when Robbie Seay was coming. :) What a wild thought.

And Jen... Jen will be there and I hope she'll be able to find a smile through all this.

The Concert Nears; The Attack Is On

Something good is going to happen tomorrow. That's why there's so much conflict and dangerous emotion tonight. It's the Devil's last play. Pray that tomorrow is what it should be. That God reaches and touches people through Spirit and Word.

Robbie Seay Concert Information

The Robbie Seay Concert is nigh, and many of you have been holding off on buying tickets and wondering if you can get them at the door.

The answer is yes...but.

Yes, but the presales are our way of counting who's coming and your way of ensuring getting in. Especially for those of you driving any length of time: please don't expect to waltz up and walk in to the concert. Please buy your tickets early online so your trip is not in vain.

My biggest fear would be that people are turned away from Brookfield Lutheran the night of the concert. And, as time passes, it remains a fear because I know how many of you are planning on walking up and buying at the door.

Talking With Trisomy's Ironman

Michael Hennessey's wife, Janelle stumbled across the Batblog and wrote a comment a few months ago. I went to Michael's site and was amazed and intrigued by what he is doing. I've done a lengthy - but really informative - interview with him. Please take it in.

If I was more of a newsman, I'd lead with Hennessey's brief take on medicine's stance on Trisomy. But I'll leave that for you to read. Instead...here's an interview excerpt:

I tell ya, you have to trust

Jesus to take a leap of faith especially on the

financial front. At the same time it is fun, and

humbling to see how He has worked so far.

So finally I will just say there are so many families

out there going through a pregnancy with a trisomy

baby or delivering one and they are simply on their

own to figure out what best to do for their precious

precious baby.

We hope that they know they are not

alone-in the unknowns, and the struggles, that there

are people out there that care, not because their

child may die, but because their child IS and we

celebrate that! We as a society can get so involved in

our own little worlds and the only time that we get

involved with a cause is when we are directly affected

by it.

July 4

My goodness I love this place. I loved the really long parade and people throwing candy. The veterans waving stoically and the politicians handing out buttons. Sun beating down on me and the family - all of us here - all of us.

I'm the son of two people who lived tough lives and know an America different than the one decried and impugned and mocked today. It's a good place.

Zoe Update:Zoe Hearts Living

We went to see Dr. Frommelt today at Children's Hospital. Frommelt is the doc who told us all those many months ago that Zoe's heart was strong and her tetralogy was correctable.

Zoe is 7 pounds, 2 ounces and almost 23 inches long.

We explained all we knew about Zoe, about her tet fits, about her heart racing. About our fears when she cried.

Dr. Frommelt studied Zoe's blood oxygenization and determined based on it and other observations that Zoe's heart is doing pretty well. Her color is good. Her blood is getting to her body and oxygen is getting out. And while her murmur is louder, at this time, even if Zoe were a non-Trisomy baby, she wouldn't operate.

What about Zoe's high heart rate when crying? Is that a function of her tetralogy? Nope. It's a function of her getting worked up, but nothing more. Zoe crying hard won't hurt the heart or open the hole in her heart any bigger. While surgery will be needed at some point, her heart is working pretty well right now.

Frommelt also questions whether the episodes Zoe is having are even Tet fits. They don't sound like it based on her expertise. What typically happens is rapid breathing and sweating. Zoe is experiencing neither. She actually kind of shuts down instead of breathes faster.

Zoe will be disappointed to find out that Dr. Frommelt said we can even put her down sometimes.

Besides being creeped out by the Palliative care nurse - who is exceedingly kind- talking to us about how a visiting nurse is a benefit because she can declare Zoe's time of death from home without intervention from the local authorities, it was a really good visit. We even made a September appointment with the cardiologist.

Zoe At 100

Zoe turned 100 days on Monday. Here's some pictures of our beautiful girl at 100 days.

Court Day and Bargaining

One experience I've (sadly and embarrassingly) had a number of times is going to court and knowing that you're going to get embarrassed, ridiculed. You're going to get nailed to the wall, dropped to the floor, left with nothing. There's nothing you can do because man's court is not about mercy.

In the days going up to those court days, I've really struggled physically and mentally. There's not much you can do when you know what is going to happen and you know you have to endure it. My heart races and I worry. I try to put it aside but you know what's coming and you know there's nothing you can do.

That's how I feel going to this cardiologist today. Like I'm going to court. And Cardiology isn't about mercy.

I have a strong urge to bargain...to trade something for a successful appointment where the doctor will turn and tell us he can repair Zoe's heart and there's a chance.

But there's nothing to trade from my life. I'm a spiritual and financial pauper. The only thing I have of worth is my family. With nothing to offer, I just turn to the only hope in all of this and beg for a smile.

Robbie Seay's A'Coming!

Everyone on HWY 94 Knows

You want to see this show. I want to see this show. I can't tell you how excited I am to see this show. Bring a friend. Don't miss this moment.

Happy Birthday, Payton!

Payton is Zoe's cousin, Charis's kid. Payton is 1 year old today. Count your blessings.

Eliot and 99 Balloons

I have to admit to everyone I can't imagine spending time with other Trisomy parents. Isn't that awful? I don't want to hear that other people have had to live through the same trials and anguish and pain and loss. I wish it was just me.

I keep getting emails and comments from people who thank me for this blog. I don't know what to say because I'm more selfish than you know. I wish you all didn't have to deal with this.

What an ignorant Christian I was before Zoe! I didn't know this awfulness existed before and now I feel how tired this world is, how this whole place has a fundamental problem that will kill it. How we're all just fighting to breathe.

I look at videos like this one - from Eliot's parents - and I'm awash in all kinds of things. Mostly I see their faith and trust in God. I admire them. I'm so proud of them. I'm praying for them now.

Music And Silence

I've spent the last few days writing scraps of lyrics onto various pieces of paper and Word documents. Nothing solid, nothing moving. It's frustrating for a writer who writes on command - as if my client has a bell - and to not be able to write on my own command.

I'm moved by Zoe's eyes and I wonder how much she knows. I frankly wonder how smart she is. How much she understands of what is happening to her and around her. I want to know the voices she hears and if she understands all the kisses she's getting. I want to write that down. But for now, silence.

Which, according to the Devil, is bad. The Devil doesn't want us wrapped in silence or Music...instead, just noise. From "The Screwtape Letters" where a senior devil advises a junior devil on how to lead a human to hell:

Music and silence--how I detest them both! How thankful we should be that ever since Our Father entered Hell--though longer ago than humans, reckoning in light years, could express--no square inch of infernal space and no moment of infernal time has been surrendered to either of those abominal forces, but all has been occupied by Noise--Noise, the grand dynamism, the audible expression of all that is exultant, ruthless, and virile--Noise which alone defends us from silly qualms, despairing scruples and impossible desires.

We will make the whole universe a noise in the end. We have already made great strides in this direction as regards the Earth. The melodies and silences of Heaven will be shouted down in the end. But I admit we are not yet loud enough, or anything like it.