Doctor's Visit Revisited

Two important discoveries from Thursday's visit were that Zoe needs to eat significantly more - so we're to make her a denser formula mixture and over two times as much. Zoe was and is not expecting that much food. Our first night of trying to get her to handle that much formula, she was unable to keep it all down.

Secondly, the doctor said her hips have tightened and in the coming years, if we're given coming years, she'll need surgery on them so they can support her.

That's odd, just because she definitely as strength in her legs, but this is another symptom of this condition, and shouldn't be too surprising.

Right now, Zoe's lying next to me on the bed, in a post-bottle haze. She's yelling now that she noticed no one is paying attention to her. This is not a symptom of her condition. It's a little girl that wants attention. It's a symptom of being a little girl.

Please pray for Zoe to really get going on her eating. Yes, we will soon be considering the eating tube again, but right now it's not getting the food in - it's keeping it in.

The yelling has becoming crying. Keep praying everyone.

Zoe's Latest Visit To The Doctor

Jen took Zoe in because of a long fussy period. The doctor found very little wrong with her and wonders if she has acid reflux: it would help explain a lot of the symptoms.

The doctor also wondered what our goals were.

What are our goals? Our goals? Our goal is to be as good parents as we can for day 119. And hope we get to be parents for day 120. And if we have to do something to help Zoe get to day 120, we figure we should look into it.

We're not talking about life support. But to this point, medicine has offered to not turn on her jaundice lamps; to let us feed her only what she wants to eat (We found out today she's eating too little, that she needs more calories. We felt slightly bad, but then again, Jen and I have been essentially dropped off at the edge of the woods with a newborn and told to come back when she's dead.), and they've offered to give her morphine when she needed a burp.

The doctor went into a discourse about how even if Zoe does make it through heart surgery, her quality of life something something our quality of life something something something else.

Here's a hint for everyone, especially doctors: don't talk to us about quality of life. Please don't use those words. I think it's how I ended up being with two of my daughters only two nights a week. I think it's how parents are convinced to "take care" of a pregnancy. My quality of life is probably less than Ted's, who, I'm pretty sure, is less Dan's but more than Tim Kubina's. And everyone's quality of life is less than...say...Madonna's kids.

Zoe is alive. We can't afford basic cable or air conditioning, but I think she's ok with her quality of life. What do you think?

10 From birth I was cast upon you;
from my mother's womb you have been my God.

Psalm 22:10

tired

Some things just wear on you. I know the hours and hours of deprived sleep are wearing on us both - more Jen than me, because she's up more than me. Zoe just isn't making it even two consecutive hours in a row at night.

I know we're all trying to figure out rides and sitters and how to work our way through our summer schedule. we had suspended the schedule until recently, when we realized that Zoe has no intention of going anywhere. So as we look ahead at a busy July, a busier August, and then school...we have some thinking and figuring and praying to do.

Zoe's here...and we're learning to live and go on and plan with her.

Zoe Says Goo

Zoe says: Goo. Here, on day 117, Zoe meanders between two moods: fussy and uncomfortable, where she cannot find a comfortable spot for her head and she shifts and pushes and wails; and serene, eyes carefully studying everything. It's then that you'll hear Zoe go into discourse, telling stories and engaging others in the room with her goos.

Bible-Era Google Earth Pictures

I think this is pretty wild. Some Google Earth pictures of Biblical events. I didn't know Google was even around then.

Happy Birthday, Ethan!

Ethan turns 5 today.
For those of you who know Jen and I or have known us for a while...I'll repeat.
Ethan turns 5 today.

Ethan is a classic example of this verse, "20You tried to harm me, but God made it turn out for the best, so that he could save all these people, as he is now doing."

Born in troubled times, when there were lots of questions for everyone, came this kid with a big heart who loves passionately, who loves the Lord.

I'll get you all some pictures when the party's through...

Instead Of A Show

All of this hard thinking about forgiveness and what I'm supposed to be has got this song in my head. I'm the guy who sinned so greatly people would walk on the other side of the street instead of walk on mine. I'm confident they said to themselves, "Look, Jesus wants me to forgive, but that's really just an ideal. And I'm only human..."

So, am I? What is alive in me? What do I believe? On March 25 I asked my kids that. Now I ask myself.

Instead of a Show
by Jon Foreman

(in which Mr. Foreman quotes a bunch of Scripture in a really cool way)

I hate all your show and pretense
the hypocrisy of your praise
the hypocrisy of your festivals
I hate all your show

Away with your noisy worship
Away with your noisy hymns
I stop up my ears when your
singing ‘em
I hate all your show

Instead let there be a flood
of justice
An endless procession of righteous
living, living
Instead let there be a flood
of justice
Instead of a show

your eyes are closed when you’re praying
you sing right along with the band
you shine up your shoes for services
but there’s blood on your hands

you turned your back on the homeless
and the ones that don’t fit in your plans
quit playing religion games
there’s blood on your hands

Ah! let’s argue this out
if your sins are blood red
let’s argue this out
you’ll be white as the clouds
let’s argue this out
quit fooling around

give love to the ones who can’t love at all
give hope to the ones who got no hope at all
stand up for the ones who can’t stand up at all
instead of a show
I hate all your show

70 X 7

Hey guys. I've been silent just shadow boxing a bunch of anger and unforgiveness. This devotion was up today. Usually I'd link to it but it's so important I thought I'd just cut and paste.

This verse reveals the humiliation of being a Christian. In the natural realm, if a person does not hit back, it is because he is a coward. But in the spiritual realm, it is the very evidence of the Son of God in him if he does not hit back. When you are insulted, you must not only not resent it, but you must make it an opportunity to exhibit the Son of God in your life. And you cannot imitate the nature of Jesus— it is either in you or it is not. A personal insult becomes an opportunity for a saint to reveal the incredible sweetness of the Lord Jesus.

The teaching of the Sermon on the Mount is not, "Do your duty," but is, in effect, "Do what is not your duty." It is not your duty to go the second mile, or to turn the other cheek, but Jesus said that if we are His disciples, we will always do these things. We will not say, "Oh well, I just can’t do any more, and I’ve been so misrepresented and misunderstood." Every time I insist on having my own rights, I hurt the Son of God, while in fact I can prevent Jesus from being hurt if I will take the blow myself. That is the real meaning of filling "up in my flesh what is lacking in the afflictions of Christ . . ." ( Colossians 1:24 ). A disciple realizes that it is his Lord’s honor that is at stake in his life, not his own honor.

Never look for righteousness in the other person, but never cease to be righteous yourself. We are always looking for justice, yet the essence of the teaching of the Sermon on the Mount is— Never look for justice, but never cease to give it.

The word "justice" hits funny to me, just because it is so perverted today. I've been on the end of some pretty terrible justice. So I looked up the word in Psalms and then used the Blue Letter Bible to see what is up with that word.

The word is righteousness and justice, depending on the usage. And righteousness and justice as in goodness and salvation and being ethically right. Not as in...you get what you deserve. As in doing the right thing. Being who you are called to be. Letting Jesus live in you. Take the blow to protect God's honor.

This "Christian" thing is harder than people think.

Concert Playlist

"I hope my music—and life—somehow may serve to encourage other believers to be proactive in their faith, for it is only as we bless others and offer grace that faith goes beyond words, and truly comes alive." - Robbie Seay

A few thoughts:

1. The song we haven't heard before or recorded by Robbie is called "There Is A Call."
2. The acoustic song he sang was the hit by David Crowder, "Never Let Go." He wrote some quick reminders of the words on the edge of the list.
3. The scan doesn't show the part ripped off so that Robbie could deposit his gum.
4. Funny thing is, just before the show, I was quickly reviewing the words to "Amazing Grace", but couldn't think of the second verse, so I scribbled the beginning words of each line on a piece of paper which I held folded in my hand. Looks like Robbie and I both were scared of forgetting a line.
5. I've been getting requests for images/video/audio from the concert. We will put together a concert DVD and let Robbie's people decide what can legally be done with it. Jen and Josh's stuff will be available as soon as we get the concert footage logged.

The Family Angel And The Best Sandwiches Ever

Mipps had a blue four door Buick Skylark he drove everywhere. Since he had it in high school and then college with me, I still think of him with his Skylark.

One summer, we drove to Madison to apply for summer jobs. I'm not sure anymore what the true motivation was to apply for jobs in Madison, but I'm sure it was related to females. We spent the entire day filling out applications everywhere, and then jumped in the Skylark to head back to Green Bay.

About 45 minutes outside of Madison, something bad happened to the car. Dash lights went on and it lost power. We rolled along the emergency lane. Neither of us had any money at all.

Somewhere in Sun Prairie, Mipps rolled the car into a mechanic's garage. He said something was wrong with the computer, and....(that's when both of our minds shut down. THERE WAS A COMPUTER IN THE SKYLARK? HOW DID WE NOT KNOW THIS? DID IT TALK?)...it was going to cost almost $1,000.00 to fix it.

And that's in 1988 money.

Now it's 9 pm and we are starving. We haven't eaten all day. We drove about 15 mph to the closest grocery store, and pooled our money: under five bucks. So we bought a package of pastrami and a loaf of white bread and jumped back in the car to head back to Madison. We weren't sure where we were going in Madison, but it was closest.

So there we were, driving down the highway at about 30 mph, eating our sandwiches in silence. "You know what, Mipps?," I said, "these are the best sandwiches I've ever eaten."

They were.

Now it's 20 years later and one of us has escaped from Skylarks and whitebread sandwiches. But Mipps didn't forget who rode shotgun. Thanks, Mipps, for the sandwich, the Skylark, and for 20 years, being the Batiansila family's angel.

Zoe Update. Day 112

I think everyone is starting to count on Zoe making it another day. I think that's a healthy, positive and trusting thought. We are a little anxious about it just because we're still in the first six months, of which only 90% of Trisomy 18 children escape. It's hard to be completely relaxed and confident. In fact, it would be ignorant to think that.

Then again, Jen and I are more convinced that the 90% number is skewed. That's 90% of the unaborted, uninduced labor babies that live past 6 months. As mentioned earlier, we're grateful that we did not have an amnio performed, not just for our sake, but because medicine treated Zoe like a normal baby while in her mom and during delivery. Otherwise, we most certainly would not have 112 days with her.

Zoe is scooting and trying to roll. She's not very comfortable. I mean that not in the medical "she's uncomfortable, let's sedate her" way, but in the way she can't get herself in to a perfectly restful spot, so she keeps changing what side of her head is lying down. I think if she could, she'd be turning the pillow over, too.

Zoe also has managed to get her hands set to hold her own bottle. I wasn't sure if it was intentional until Jen told me she had done the same thing for her.

Yesterday was a "lazy breathing" day...where she kind of drags her way through breathing, lazily, and so we try to move her around so she'll regulate her breaths.

As Zoe grows and gets older, we're all more and more happy to know her. She helps us realize how much of our wonder of this life is wrapped up and retarded or delayed by a sinful expectation that everything will always be the way it is.

Even Newer Robbie Pics

Hey guys...heres' some new and cool pics...

Josh Pope

Now that many of you have seen what Josh Pope can do in concert - let me link you back to my early-May posting about ordering his music online. This is a supremely gifted man.

What We Are When The Lights Are Switched On

We begin to notice, besides our particular sinful acts, our sinfulness; begin to be alarmed not only about what we do, but about what we are.

This may sound rather difficult, so I will try to make it clear from my own case. When I come to my evening prayers and try to reckon up the sins of the day, nine times out of ten the most obvious one is some sin against charity; I have sulked or snapped or sneered or snubbed or stormed.

And the excuse that immediately springs to my mind is that the provocation was so sudden and unexpected; I was caught off my guard, I had not time to collect myself. Now that may be an extenuating circumstance as regards those particular acts: they would obviously be worse if they had been deliberate and premeditated.

On the other hand, surely what a man does when he is taken off his guard is the best evidence for what sort of a man he is? Surely what pops out before the man has time to put on a disguise is the truth?

If there are rats in a cellar you are most likely to see them if you go in very suddenly. But the suddenness does not create the rats: it only prevents them from hiding. In the same way the suddenness of the provocation does not make me an ill-tempered man; it only shows me what an ill-tempered man I am. The rats are always there in the cellar, but if you go in shouting and noisily they will have taken cover before you switch on the light.

~C.S. Lewis, Mere Christianity, (1952)

Recap

The day before the Robbie Seay concert, I had a chance to talk to Nick, who is on vacation out of town. He wondered if anyone had mentioned that Robbie intended on coming over to the house to pray and worship?

Um... no.

I told Nick I had to get off the phone. And call Jen. Now.

I called Jen, who was in the process of heading to voice lessons that night. She also had to pick up Teia from her job, and wouldn't be returning until almost 11 PM. The panic was setting in.

After work, I was driving to Brookfield Lutheran to talk to our contact there. On the way, RSB finally got back to us to officially confirm that yes, Josh can open and do a 30-45 minute set, among other critical details. They asked for some food backstage, and I offered to cook it.

We shared what we had just learned with Brookfield and then I called Josh to let him know the set was longer than we had thought.

It also made me think that maybe Jen and I would sing something at the end of Josh's set. I let Josh know, and he was enthused because it helped bridge between his music and Robbie's music.

The big day came, and I got up early to straighten some things up, then set about making some Poor Man's Jambalaya and Yeast Bread. Jen and I both were pretty stressed from some other turmoil and I kept checking Jen's face - a pretty somber one - and wondering if we really should sing. It might just be too much.

We found out pretty rapidly that Robbie's timing was bad from Chicago to Brookfield, and he wouldn't be visiting. So we packed up the food and headed down. The RSB was performing a sound check and we all sat and listened intently as they set each wedge monitor and each instrument to specifications. I heard Robbie soundchecking "The Call," a song I don't have.

Josh came up and we ran into an adjoining room to throw together what we would do. After Robbie was done checking, we jumped onstage for our mike check. Josh really wanted Jen to do "I Am" by Nichole Nordemann, but she balked at the lyrics...we all didn't want a music stand up there. We settled on "Breathe." I was going to do "Amazing Grace/My Chains Are Gone."

Andy showed up. Andy had emailed me and asked, since he is a photographer and loves taking concert pictures, if he could take pictures. I agreed. I asked him when he came how he had found out about the concert. He said Greg Weisbberger or something. Someone I never heard of. I guess Greg was sending out mass emails promoting the concert.

Michael, Avicom's video virtuoso showed and was getting set, and he told me his assistant Kate was coming (although, sadly, sans her Bling Ring). Bill from Avicom was there, and then I began to see all the Avicom volunteers along with the Deirdre volunteers.

We went back and ate the jambalaya with the RSB. Kellen was already in there, just talking and listening. These guys had the least pretense, the kindest hearts and were all great listeners. The kids were euphoric, ecstatic. Most of the band didn't mind the kick in the jambalaya. We talked about Trisomy and the family and things. Just talking with a bunch of brothers.

At almost 7 we went out. I was going to introduce Josh. I introduced the Brookfield Lutheran guy to lead us in prayer...and then I introduced Josh. Who subsequently blew the roof off the place.

Josh is legitimately the most gifted musician I'll ever know. He first performed "Angel," which he recorded for Rhodium Records, and then he did something that he taught himself the day before - "The Call" from the Chronicles of Narnia Soundrack. Then he did an improvised mishmash of two praise songs...just watching him poring over the keyboard, letting the music come to him was incredible. He closed up with "You Lift Me Up" and then brought Jen and I onstage.

We all sang "I Could Sing of Your Love," and then I sang "Amazing Grace/My Chains Are Gone," and then Jen closed it with "Breathe." She talked about how much the song's meaning had changed since Zoe. It was an incredible introduction and then Jen sang...it's been a long time since I've heard her do that one. Probably 6 or 7 years. It was incredible.

After an intermission, Robbie came out. It was an incredible show. He opened with "Eternal God" from his earlier album. I was hoping for that song...my faves off that album were "Better Days," which I used to sing to Zoe while we were in the hospital; "Eternal God" and "Breathing Air Again," which I love. We are like blades of grass.

I'll get the whole set list up for you - I have Robbie's copy - but everything was awesome. Robbie was brilliant and humble and personal. Taylor, the lead guitarist, was awesome...and the band just sounded great. Even my music snob friends agreed. Two cool surprises were the song "There Is A Call," which I've never heard, and Robbie performing an acoustic version of David Crowder's "Never Let Go." Magic.

Zoe didn't make it through the whole concert, but it wasn't the music. I could see her eyes searching for its source. Jen and I both believe she liked the music. She just got fussy.

And then, the aftershow. People milling around, no one wanting to leave and lose the glow. Robbie and the band talking and sharing to the point that you had to really look for them, because it wasn't like people were lined up, it was more like talk circles of friends after church.

I told you everyone has a Robbie story,and I cut out a ton of them. Sorry...but it was a wonderful, blessed night.

The next morning, my little sister Martina called into the morning radio show in Green Bay where Robbie was being interviewed. She thanked him for coming. Robbie went on and on about the family, the night, Zoe and Jen. He called us friends. We are.

Robbie Pictures

Here's the first wave of Robbie pictures....

Hey, who would want a DVD of the concert? HMMMMMMM?

Let's see what we can do...

Concert Afterglow

The concert went off without a hitch, and I'm genuinely basking in the afterglow. Not good right now at forming words except to say it was a peace-filled and truly unique experience. Some nuggets....

-Josh, Zoe's Uncle, opened. He was - is - ridiculously great. He's truly gifted and I'm proud to know him, let alone listen to him perform. Josh has a contract with Rhodium Records, and his CD is coming out at the end of summer. Stay tuned for the big rollout of his website and CD.

-Robbie Seay left last night to get to Green Bay. He did an interview on morning radio this morning and my little sister called in to thank him. He began a neat discussion of how "crazy" the Batiansilas are. Especially Greg's mom. He spoke about Jen and Zoe and Trisomy (although he admitted he was going to "butcher" the name of her condition and called it "Trisinosis.")

-For anyone who reads this: Robbie Seay is a true man of God and he and his band are some special people. Best of all, to me, is that he is a really great musician to boot. My friend Sap is a music snob and he was really impressed with the band - particularly Taylor, the guitarist. A number of people got a U2 vibe off of Taylor, but I hear a lot of Explosions in the Sky. I will hereby and forthwith change my advice on Robbie's music from "Buy" to "Strongly Suggest You Buy This Today."

-Each of my kids had an individual Robbie story to share. He spent time with each kid and they were all really touched by him.

-I'm so grateful and happy for my family. For Jenny and the kids. For my in-laws and my sisters.

-Zoe's 109 days old.

- Jen and I got to sing a few things and Jen was stunning, as usual. If you've ever heard Jen sing "breathe," you know what I'm talking about.

- We're going to try and assemble a concert video that will be available in the coming months. I'm not sure where it will be available or any details, but I'll let you know as it gets made.


-More as I assemble my thoughts and words. I'll just afterglow for now.

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.

Zoe Update

The July 3rd visit with the cardiologist is becoming more and more important to us. Zoe's been fussing quite a bit over the last 24 hours and we don't know what her discomfort is. It's trying to hear her upset and put your hand on her chest and feel her little heart racing. It's absolutely being pushed to the limit to know there's really nothing you can do about her heart racing.

Thank you, everyone for your prayers and thoughts. Keep it up. I know you're probably as tired as we are. But there's something here for us.

Mercy Me Covers....The BeeGees

I have to put this in because it's such a cool depiction of MercyMe's gifts, the fun and they're having, and it makes me want to nominate more cool covers for them to do. How long before we hear 99 Red Balloons?

(MercyMe is the band that sings "I Could Only Imagine" among other monster hits)
(Interesting coinkydink - I wrote a little something something you can find in MercyMe's book entitled "I Could Only Imagine." Yep, that's me.)

Best of Broadway Pictures

Here's a bunch of Best of Broadway pictures, featuring the lovely and talented Jen, her talented and sometimes available brother Josh, "The Big Girls": Teia and Isabel, "The Blondies": Selah and Elise, Little Ethan, and Deirdre's oldest son Keaton.

Musicals featured were "My Fair Lady"; "Into The Woods"; "Spamalot"; "Ms. Saigon"; and "The Sound of Music."

Best of Broadway

I'm sitting here at the North Shore Academy of the Arts. Call time for this show (Best of Broadway - Jen's brainchild she started last year, where adults sing and perform songs from various Broadway plays) was about 1/2 hour ago, and Bat and Christa are expected.

Last night was the first night for Best of Broadway -2008. Last year both Jen and I were involved. This year, I made it to practice 2 and realized how uncomfortable I felt going through this hustle and bustle with baby Z in tow, being held by whomever whilst Jen and I made jazz hands.

It's harder to not sing for Best of Broadway than I thought. Everyone is working so hard...having fun. Nice to have fun.

Robbie Seay Concert Poster/Flyer/Insert

If you wanted a flyer or bulletin insert to promote the concert, click here.

Nick did it. Pretty cool, huh?

Anna & Luke, Welcome To Our World

Some of you have been following our story and know that Jen's sister Tracey and her husband Jaime were trying and trying to have a baby for years. Tracey even appeared on the Oprah Winfrey show to discuss her pursuit - and the travails - of infertility and the anguish of trying to have a baby.

Today, Tracey gave birth to two babies: Luke - 6 pounds, 7 ounces 19 inches; and Anna - 5 pounds, 11 ounces 19.5 inches.

Both kids are doing well and mom is tons better now that she can breathe. Since their due date was in July, Tracey was worried she wouldn't be able to get to the Robbie Seay concert. Looks like she is available after all.

Thoughts of Zoe and the Church on day 94

I'm sitting here with a snoring - and sweaty - 94 day old child on my chest. She frets sometimes - a few times a day or so - and fusses until we give her a little infant Motrin, and then she settles down. She's eating a little more than 2 ounces a feeding now. She weighs over 7 pounds now. Are we marking life in inches or ounces?

What about in "friends" or visitors? Teia set up a Zoe Means Life Facebook page. In just a few hours, it's up to 61 friends...but that's dwarved by the 400 visitors this blog gets each day. People checking in to see how Zoe's and our family is doing.

Probably the only measure - the only one that matters - is service. How many people God has touched through our lives. Zoe (still sweating and snoring) has done pretty well through 94 days.

It's strange how over the last few days, I've run into two stories about the Church facing persecution around the world. And I know those brave men and women are measuring their lives in service. Being used. God furthering his kingdom through the brave, the weak and the snoring.

LADIES AND GENNEMAN: ROBBIE SEAY

What: Robbie Seay Concert to benefit the Zoe Means Life Foundation
When: Tuesday July 8 @ 7:00 PM
Where: Brookfield Lutheran Church
How: Buy tix @ www.zoemeanslifefor.us

Tickets are only available online. To order:

• Go to zoemeanslifefor.us .
• Provide the requested information. Tickets cost $20 a person. You can pay with a check or credit card.
  
• We will send you a link to a page that will have your ticket. Print that page and bring it to the concert. You will not be admitted into the concert without your ticket.
• If you have any questions, please contact us at tickets@zoemeanslifefor.us .

we are free
by Robbie Seay Band

You're the one who chased us
You're the one who started all of this
You're the one who dreams
You're the one who loves
So let us respond

Yours the voice that calls us
Yours the hands that hold us
When we have come undone
You're the one who loves
So let us respond

We are free...
We are free in You, God

God's Will Be Done

...in Zoe's life. However long it is. I feel like our journey has been about God turning to me and my family and saying, "You will see Me. You will see what I can do. You will see My power. You will see My Church." God's will be done in Zoe's life and ours.

And in Mohsen Namvar's life. Amnesty International recognizes him as a "prisoner of conscience" - tortured and now imprisoned, facing execution for the unspeakable crime of baptizing Iranians into the Christian faith.

Persecuted Christians in Iran? What's going on? Apparently, something incredible: "The church is growing at an absolutely phenomenal rate in Iran. Muslims are coming to know Christ; they're getting involved with these house church groups. That is what has caused the concern of the government. That's why these arrests are happening."

I appreciate your care and love and concern for Jen and Zoe and our family. Please spend the extra ten seconds and pray for Mohsen Namvar and the church in Iraq.

Robbie Seay Concert

We're just moments - just hours - away from releasing all the information on the Robbie Seay concert, including how to pay and ticket information. All ticket sales will occur online.

My sincere hope and prayer is that I call in all of your "...if there's anything I can do..." markers and see you there on July 8th. That includes you, Jean, and you Mrs. Post. And everyone at Avicom. I'll need a note from your physician or your mom, otherwise, I want to see you there. Come worship with me.

Zoe

"An ordinary simple Christian kneels down to say his prayers. He is trying to get into touch with God. But if he is a Christian he knows that what is prompting him to pray is also God: God, so to speak, inside him. But he also knows that all his real knowledge of God comes through Christ, the Man who was God - that Christ is standing beside him, helping him pray, praying for him.

"You see what is happening. God is the thing to which he is praying - the goal he is trying to reach. God is also the thing inside him which is pushing him on - the motive power. God is also the road or bridge along which he is being pushed to that goal.

"So that the whole threefold life of the three-personal Being is actually going on in that ordinary little bedroom where an ordinary man is saying his prayers. The man is being caught up into the higher kinds of life - what I called Zoe or spiritual life: he is being pulled into God, by God while still remaining himself."
-CS Lewis, from Mere Christianity

Happy Birthday, Happy Birthday

Isabel turns 16 today...and Zoe turns 3 months old! I'm so proud of both girls. Isabel had a few friends over on Friday night. Zoe has friends over all the time - her Uncle Andreas and Aunt Jill came by yesterday and are coming back over today.

The best gift I could have received to accompany Zoe is a kid like Izzi - who loves life, tries hard and is growing up beautifully. Both daughters are learning so much from each other.

God, What In The World Is That About? An Interview With Robbie Seay

YW: Robbie, what does it look like for you to cling to God when tough stuff’s going on?

We basically have two choices when life gets ugly. One, we can run to God and trust Him. We don’t blame Him; instead we seek Him and long to be comforted by Him. Our other choice is to run the other way.

That’s a tough choice. We’ve had a few friends in the last year and a half who’ve passed away. One of them was very young and passed away in front of 500-600 of his closest friends at his church. While that was going on my heart was crying out: “God, what in the world is that about?” So I took that pain and questioning to God.

I’ve learned that it’s completely all right for us to approach God with some very humble doubts and fears. The book of Job records that Job voiced his fears to God, but he continued to trust. He was humbly honest, and God later referred to Job as His friend. Job is just one big lesson that no matter how crazy life gets we should trust in God.

I’ve learned that God is loving—so I don’t have to hide the hard stuff. He is the only comfort I’ve got, and if I shun Him or push Him away during hard times, I don’t have much to lean on. So I’m striving to just be honest with Him and trust Him.

YW: Is there anything else you learned during your times of struggle about how to handle hard times?

When things get a little rocky in life, I tend to withdraw from people. I learned that’s not necessarily a great thing, because when that happens I get the idea that I’m the only one struggling. I think, “I’m the only one in this place here.” Even though that’s just not true.

What I’ve tried to do now when things begin to go south is intentionally lean on my group of friends who love me. It’s pretty clear in Scripture that God calls us to be in a community, to love one another, and to surround each other in love and support. When I seek out the help of other people it changes the way I look at myself, and it changes the way I look at God. I see people’s support of me, so then it’s easier to see God’s love for me. It’s my hope that all of us can push back on our instinct and surround ourselves with love and seek God together.

Jen and I are learning what it's like to be in a community of love, to be surrounded in love and support. And it's come from places we never expected - proof, to us, that it's from God. One person who has stepped up to be part of the community is Robbie Seay.

I don't care if you don't think much of Robbie or Christian music or Christians . Come on July 8th and meet the community. Brookfield Lutheran Church, 7:00 PM Tickets available online SOON.

(for the rest of this interview, click here)

Lining Up

I talked to the doctor currently listed as Zoe's caregiver, named Dr. Humphrey at Children's Hospital - Wisconsin Palliative care.

I told him what you all know - that the symptoms all seem to be related to Zoe's heart, and that we want to fight for Zoe's life as hard as she is. At this point, unless the odds are zero, we are strongly considering letting her undergo whatever surgery in hopes that correcting her heart condition will also extend her life.

Dr. Humphrey was supportive of our thoughts, but is also cautious about the risks involved. He said Children's does not have an overriding anti-Trisomy 18 policy, and that we should honor our July 3rd meeting with the cardiologist. He even offered to sit in the meeting with us.

He implied that one of the larger concerns with surgery will be anesthetizing Zoe, and that the risks are great. There are no certainties, no absolute percentages on the risk. This is a grey area. He said that if we have decided that we'd like to spend more time with her, our thoughts are valid.

I told him I wonder if Zoe wants more time with us. And that if it's grey, then grey is for the fighter. And Zoe is a fighter. I'm trying to be her voice because she has none.

Maybe she wants another kiss on her forehead from Ethan. Or to hear her mom singing her another lullaby. Maybe this house of love isn't too bad of a place to live.

Robbie Seay: Brookfield Wisconsin: July 8

Details are slowly getting put together. Tickets will be 20 bucks. All sales will be online. I'm hoping you and I and Robbie can all get together and lift each other and our praise and Zoe up.

Zoe's Heart

Remember this entry? This was back when we were assured that Zoe's heart defect, while potentially fatal, was treatable through surgery. Dr. Frommelt felt certain that Zoe's heart was strong and that she'd have an excellent chance at repairing her Tetralogy of Fallot.

Fast forward to today. Zoe's pediatrician says that Zoe's wailing over the last few days was about her heart. Her oxygenation to her upper body is in the mid 80's while her oxygenation to her feet is in the 90's. This, says Dr. Estill, is what happens when you have a heart defect. Her murmur is much more noticeable since she last listened a few weeks ago.

We called Children's to set up an appointment with their Pediatric Cardiology department. If the good odds we were given at the end of November have degraded - maybe even to only 10% - that's the odds she's got now. We'll take those odds. Cardiology offered July 3. We're not sure if Zoe can wait that long. Dr. Estill will call to see if she can intervene.

Bad Day/Good Day/Bad Day

Sunday's rough day for Zoe was followed by a pretty positive one: breathing better. Back to looking around when awake and even responding to us. Yesterday, we slid back down the roller coaster. Something's bothering her. She's fussy, and Tylenol is only helping marginally. Last night was more fussing, and at about 3 am we switched to infant Motrin.

What's wrong? We are going to being a path of having someone tell us. We were told early on that Trisomy 18 does not cause pain. Then, why is our baby crying? What is bothering her?

Zoe's at the doctor right now.

GEEKED

By the way...did I mention that Mr. Robbie Seay is coming? Not sure if I did. Not sure if I've mentioned him before. I think I might have.

One More Fact

I'm really ready to just cut and paste today's "My Utmost For His Highest." As if I can add anything to the profundity there.

I work in an industry that makes its money by being critical - of itself, of its work, of each other. It's how you get ahead, how you stay ahead. So the idea of "turning off" that critical nature is difficult, but its true.

One thing I find about Jesus' commands: that obeying them is about our obedience and his sovereignty. AND about our peace. In other words, obeying Him brings peace. There is a definite reward for obedience, and frankly, a definite consequence for disobedience.

Note to self (and you): Put your measuring stick away and ...stop trying to decipher the facts behind your friends flaws (try saying that 10 times fast). Live in peace, past judgement. Let your pride fall down. You might actually see a person there, a person who needs you.

ROBBIE SEAY: 7 PM JULY 8

Robbie Seay has agreed to come and perform for the Zoe Means Life Foundation! It'll be at Brookfield Lutheran Church in Brookfield, Wisconsin. They're still working on the details, but this is going to be something special. I hope to see you all there.

AWESOME. Wow. Wow.

50: A Better Recap

Music Sung:

(at the vows service thingy)
Beautiful Savior: the big 10 & Keaton
7 Fold Amen: the big 10 & Keaton

(at the reception thingy)
Edelweiss: grandchildren
Heidi and grandchildren: Some Kind of Song About German Fraulein
Piera/flute with Heidi/piano
Cale: played a song he wrote
Cale and Drew: played and sang a song they wrote
Jim and Connor: Jim played and Connor sang a Third Day song
Jim: played and sang a song
Teia and Izzi: sang "For Good" from Wicked
Kellen: sang "Burn Out Bright" from Switchfoot
Jen: sang "Come Rain or Shine"
Greg: sang "Amazing Grace/My Chains Are Gone"
Jen and Greg: sang "When I Fall In Love"
Everyone: sang Edelweiss

Zoe Update

So Zoe's stomach isn't doing well. Breathing like crap. Lying next to her last night/this morning it sounds like someone is strangling her. She isn't keeping any of her formula down. She's stopped up. She's restless, fussy.

Is that trisomy? Heart? None of the above?

What if her heart is causing the breathing and the stomach problems? What if helping her heart would help resolve those problems? We've been told that no one will help her heart. For Jen and me, the problem is that before she was born, doctors told us explicitly how they were going to help her heart.

Jen has a friend whose daughter had tetralogy of fallot. The friend explained that her daughter dealt with constipation, with restlessness and breathing issues that were all resolved via the surgery.

Will anyone do anything for her? Jen and I feel like we're watching our daughter fight to live. We wonder if we are fighting with her, or watching her fight.

50: Final Thoughts

Yesterday was a day where we kids tried to stretch ourselves out and plan and think and organize like our parents have done for us for all of our years. We tried to bring them the joy and happiness they have brought us. And I think all of us kids can agree that the pursuit of that service, to think wholly about someone else and their happiness, is rewarding. And exhausting.

It was an incredible experience to hear the different voices singing, see the different gifts God has given our family. It was amazing to hear how many of you read this blog. What an amazing family, an incredible couple. And...it's not over. NOPE.

50blog: A Good Idea, but

Turns out between connectivity issues and zoe issues and people flying around and me getting the times wrong on the various events, the blog went the way of ...non-live blog.

Here's one entry I penned in hopes I could get online:

So after four years of not singing, we decide to pull out an old standard and easily the hardest choral piece and put it together in a bout 8 minutes. pretty good. next up, grandkids who may not have any idea of why they’re singing. Or what they’re singing. Even in the families with the most tradition and the highest sense of history we sometimes lose something in a new generation.

Found out from jim that the two microphone system might not be two microphones. Or a system. It’s warming my heart to see it come together.

Count on people telling others to “chill out”: unofficially, two. I think that number is destined to grow.

Saw bob and betty barnes and cousin Stephanie. Makes me feel almost 40.

50blog Subtopic: Zoe

Zoe, on cue, has decided to allow herself to be put down. So she can better look around, maybe play with the little toys hanging over her bouncy chair. I think she's wondering why we never put her down before....

50blog: The Requisite Hotel Room

What kind of adventure would it be if you didn't have a bunch of Batiansilas shoved into a hotel room? This is quite a room for our standards, and we made the most of almost every square inch. I laud the mighty Country Inn Suites because of HIGH SPEED INTERNET. It's very pro-blog.

We got to this suite late because...because it all came about late. I was supposed to call mom and tell her I wanted to come up 6/14/08 and I neglected it, everyone assumed it was a tacit vote to stay south; then I weakly voiced a thought of coming up which came about.

Talked to Heidi on the way up and she told me that the room was checked in and the key was waiting. And that I still haven't told her what I'm singing and she knows I'm busy but she really doesn't know...is Jen singing? We have to update the Powerpoint.

Good points. For some reason, I am feeling the tension in my genes, through my DNA. There's some fried people up north.

To make the drive north ever-so-Shakespearean, lightning ignites the eastern sky, over the lake God's spectral light show. Maybe a reminder of there is planning and there is power. And I hold both.

P.S. Heidi - we just decided on the song on the way up. And I downloaded Jen's accompaniment while here at the room.

Went through the song with Kellen a bunch. He's going with "Burn Out Bright" featuring my acoustic masterings.

50: The Quasi Live Blog

On this momentous, incredible day - an anniversary of when two flawed and sinful human beings looked in each other's eyes and made a promise that transcended them - I honor my mother and father with a quasi liveblog. That it may be well with me and that I may live long on the earth.

Quasi because i'm not sure how much internet I'll have or how often I can update. Live because I'm here. And so is Zoe, and Bat, and Christa and the other approximately 50 people. We all woke up today and decided we were going to live. And God said that was good.

Family

Ooooh, my sisters are warming my heart with their frenetic loving. Emails sprouting about what to sing, where to drive, who's staying where. When the practice is. What part of mom's house is clean and who is coming. How is Zoe? And Jen? It reminds me of old Christmases when everyone's heart and mind rested everywhere else, hundreds and thousands of miles away. So when we got together, we were relieved and ready to hug and giggle.

Andreas drove the thousands of miles across the mountains and plains to celebrate the big 50. Jills' uncomfortable - she will continue to be, bless her heart (and her baby). He ducked the latest round of severe weather.

Me, I'm glad to be here. Just glad I got this far, Zoe with us and crying for her bottle or because she was put down. My wife, her angelic brave heart hammered to the thinnest malleable width, has held and cajoled and cuddled that girl. Zoe knows love today. She knows her mom.

Glad my son might sing a song for his grandparents. Glad the rain might be over finally. Glad to know that Michael Hennessey is going to do an email interview about his call and mission (actually, he said he'd be honored. HONORED.) . Glad...that....just maybe...waiting for confirmation...that Robbie is coming.

Hey everyone. I can attest that the Devil loves to kick us when we're down. But the Bible says that the JOY of the Lord is our strength. I've got a little now. Joy and strength.

Holy Is The Lord
by Chris Tomlin

We stand and lift up our hands
For the joy of the Lord is our strength
We bow down and worship Him now
How great, how awesome is He

And together we sing

Holy is the Lord God Almighty
The earth is filled with His glory
Holy is the Lord God Almighty
The earth is filled with His glory
The earth is filled with His glory

We stand and lift up our hands
For the joy of the Lord is our strength
We bow down and worship Him now
How great, how awesome is He

It's rising up all around
It's the anthem of the Lord's renown
It's rising up all around
It's the anthem of the Lord's renown

End of the Honeymoon

Last week I went to diabetes class with Selah. It was surprisingly intense and detailed and its underlying theme was - the honeymoon's over.

When you're a new diabetic, your body slowly begins to stop making insulin until the only insulin in you is that which you have injected. It's called the honeymoon, and it's a slow fade of your own production, when you can be a little freer with measuring and injections and guessing carbs. If you have determined that your bread is 15 grams of carb and it turns out to be 17, no big whup.

Selah is at the end of her honeymoon, and there's a sobering change to how her carb intake is calculated and what insulin she is to take. The dietician recommends a scale just for precision's sake.

Honestly, at any other time in my life, just the thought of that loss - of permanent change - in my daughter's life would have floored me. But I'm forced into this newer perspective, one that recognizes that through God's providence and grace there are ways not just to keep Selah alive - but for her to flourish and live a happy life. Selah was the only person at her school from grades 1-5 to get the Presidential Fitness Award.

The honeymoon's over everywhere in our lives. This is the first month we've stared into the jaws of life without Jen's paycheck; considered the idea that we might have days, months, weeks...years? of a severely disabled daughter who might at some point pass away; the honeymoon's over with our church and our finances. Bill collectors have resumed calling. And it's a moment beyond energy or stamina - to sheer will - in terms of getting through the night.

I was explaining to a co-worker a few days ago that I was up with Zoe from 3-4:15 AM the night before. The co-worker nodded and smiled and asserted that they, too remember those days. True...with one big difference. Practically the only advice we've received recently from a physician is to keep Zoe calm, that her heart rate when upset is just too high and her body doesn't operate well then. So, we go through a kind of mania when Zoe cries. And when she stays upset, we get more determined, more concerned. More worried. More scared.

Last night Zoe was upset much of the night. Feeding, Tylenol, cooing, humming...every solution we could consider would not help her. And all I could think was please calm down. Please.

Life isn't a honeymoon. My parents are celebrating 50 years of marriage this weekend - dwarfing the length of their honeymoon. I bet they won't bring up one honeymoon memory at their celebration. It has been 50 years of work, recalling all the joy, all the lessons learned, all the grace and love God showered on them.

The doctors told us to go home and enjoy our days with our daughter. We will. But the honeymoon's over. There's work to be done, a real life to live, and a genuine hope that we'll experience God's blessing and guidance through these coming days.

Sometimes, They're Wrong. Kayden's Story

Tell us about kayden, how old he is, and how he’s doing?

Kayden was born June 19th 2001 so in a little over a week he will be 7 years old. Kayden is doing very well he signs mom and dad and will say mama. He sits up on his own and will scoot and roll to get into everything. Kayden does not walk but will take steps when holding on to him.

2. When was kayden diagnosed with trisomy 18? Why did doctors operate on him?

At At birth kayden had a cleft palette { hole in the roof of mouth} and his tongue totally blocked his airway this was called pier roban so he was airlifted to the minneapolis childrens hospital where he was trached for breathing and they thought he might have trisomy 18 becuase of the signs so they did testing and two weeks later we were told.

At that time kayden also had malrotation his bowls and intestines were twisted the wrong way and they had to be repaired or it could kill him. that same day they placed a feeding tube in his belly At 2 months old he had hernia repair and 6 months old they did the jaw surgery to help his airway and at 1 year old we did cleft pallet repair although his is slightly still open. when kayden was almost 2 years old we were finally able to get the trach out.

A year later a developed 91 eppisodes an hour of sleep apnea so they removed his uvula and adenoids this took the whole problem away. From age 3 till now kayden has spent very little time in the hospital most things if any are planed as he gets older he seams to be stronger sick wise. Now this last year kayden has been having some unexplaind breathing problems from time to time out of no where he gets a mucus plug and starts to choke we have to bag him and some times we call 911 we have ran alot of test and no one knows for sure whats going on but decided to put him on seizure meds to see if by chance its a type of seizure as these were happening 1 time a month and now its been about almost 5 months and he has had 1 episode so looks so far like its working.

Some would say why would you put your son through all this surgery well my answer to that is if you had a older child who you all of a sudden found out needed surgery or had cancer most would not hesitate to do all they could for there child so wy should it be any difernt for our children born with problems? kayden was never in pain as the Dr's did a very well job at keeping him comfortable. I always thought of it this way if the Dr's gave me a 10% chance to live and a 90% chance to die i know i would fight for that 10% chance so how could i do any less for my child?

Kayden has always been happy and full of life. you cans see by his photos how true that is. the photos i sent you with the bars on his face that was 6 month sold 2 days after surgery him smiling and pulling on those bars.

3. Does kayden have a heart condition like Zoe does?

Kayden has a small vsd and upper super pulmonary stenoses. most cases kids need surgery to repair this as they grow the valve does not but thank god in kaydens case with him having the vsd with that it seams to be evening each other out and they dont think kayden will have to have heart surgery.

4. Do you feel like medicine has a correct stance dealing with trisomy 18? If not, how would you change it?

We have been very lucky here in Minnesota they have never treated Kayden any different and have always done what they would have done for any other child. But I do know that is not the case every where or for everyone in alot of places Dr's refuse to even feed kids with trisomy 18 they feel that doing anything for our children is a waste of medical practice.

Years ago everyone felt the same about downs kids{trisomy 21} parents were told to put them in institutions and not to do anything for them they were told these kids would never know them and will never do anything. Today we know this is not true downs kids do a lot and are very smart happy kids. Trisomy 18 has had no real research done since 1960's its sad to me that our kids are treated like the downs use to.

Most Dr's will also talk parents in to a abortion or fancy term inducing the pregnancy convinsing them this is the bast thing and that there kid would never survive the sad thing is they find families like mine later after being told kids dont live long. Here were i live there are 8 other families who have living happy trisomy 18 children all with in 3 hours of each other from age 2 to age 20 years old. Im not saying the road was easy but it was well worth it.

5. You have kept in touch with other families touched by trisomy 18. Is it helpful to stay in touch? What have you learned by staying in touch?

Yes i have kept in touched with many many familes with trisomy 18 children I even went to a soft conference when kayden was 1 years old. Staying in touch with the familes i do is so great becuase only they truly no what im feeling and going through we are each other support system and are there for each other no mater what.

In most cases when one of the trisomy 18 kids are in the hospital or somthing is really wrong we all take turns going to the hospital for support and calling. these families know and understand more then any of my family or friends could ever. They are truly the only ones ever who are really there for us.

6. Have you been in contact with families that have lost children?

Yes at first i thought it would be very difficult to talk with those parents not for the fear of kayden dying but in the fear of making them sad and upset that my son was still alive. My first real accouter was just before kayden turned 1 years old a Young mom like my self got a hold of me through kaydens web page she lived only 2 hours away and had just recently given birth to a little boy named Cole who was born stillborn.

Her husband and her came and got a hotel room near us so they could come meet kayden i was so nervous but WOW Jasmine was so strong and loving she fell in love with kayden and to this day we still get together and do things with each others families and we talk on the phone all the time she looks at kayden as a smack in the dr's and her families faces as they all wanted her to abort cole and she could not do that so even though cole did not make it she looks at kayden as this is why I did not induce becuase this could have been my child.

In our group of families that meet there are a handful of families that come to that have lost there child. Most recently we lost a wonderful little boy name Amos he was 2 years old. But when he was 4 months old he got sick and the hospital where they lived in Nebraska refused to admit him so Kelly the mom drove 3 hours away to Iowa there they admitted him but forced her to sign a DNR.

She found one of the other moms here in MN website who then gave me her contact info when i called Kelly her son Amos was on almost 4 days of no fluids not even through IV they were slowly killing him. With a few nagging phone calls to my one of kaydens Dr's at childrens and convinsing him that kids come from all over to be treated here and even though this was another state it was only about 7 hours aways 3 days later they had him airlifted here to MN were Amos got the help he needed and did very well was such a smiley and very aware little boy but almost 2 months ago Amos got sick and it took the best of him and he passed away 1 week from his 2 birthday.

I was there with Kelly as soon as i knew what was happening it was the hardest thing to go through i was feeling so guilty at that moment for having a son who was older and for giving her hope that her son too could live a long life and at that moment she looked at me and said Marta god is allowing kayden to live longer so you can continue to help families like mine that are not getting the help then she said if it was not for you I would have not gotten the 2 years with him that i did. That just broke my heart. Today almost 2 months later we still talk about every 3 days.

7. What advice can you give to all the people who are exposed to trisomy 18 for the first time?
Don't beleave everything your told. Dr's dont know everything please research and pray and talk to other families before making those big decisions. We were told kayden would not live and if for some reason he did survive the first year they had never heard of them living passed 3 or 4 and that he would basically be a vegetable and would not know us. Today kayden is so not like they told us im glad i listened to my gut and not the Dr's. I dont blame them as they just are not educated enough on trisomy 18 all the medical books are about a paragraph long and everything reads death. So that is my goal to change how things are dealt with I beleave our children should be treated as they would treat any other child and if familes want to have somthing done they should be able to and if not that's their choice too. I guess what i want people to know is that trisomy 18 does not always have to mean immediate death and sadness. We have had wonderful times with kayden and i know that things could one day change but i have those wonderful memories. For those of you who have trisomy 18 children still living I want you to know that because they are fragile does not mean they have to stay couped up we have never treated kayden any different kayden has been to disney world and 2 times to disney land he goes on rides and loves them he has been down water slides on my lap kayden has his own kids ride on hot wheel that comes with a parent remotecontrol that he rides in. My point is i have found that they love stimulation and the more you do with them the more they learn and show interaction. I think kayden does as much as he does becuase of all we have done with him. This year we made a sensory room for him and this month we are finishing up a handicap accessable swingset with ramp and toys down low for him to enjoy so he can play too. You will find you have to become creative. God bless and good luck to you all.

My favorite saying is "Life should not me measured by how many breaths we take but by how many moments that take our breath away. "

Memory 2: The Letter

My favorite anniversary memory is from a few years ago. Mom had asked me to water the flowers at their house while they were gone. When I arrived I was reading the note left for me on the table. While I was reading I noticed the gift Dad had made for Mom. As I turned to look closer I realzed that our Dad had written her a letter. A letter! In this very intimate letter was an expression of love that I can't even explain. It immediately brought tears to my eyes. I called one of my sisters and read it to her and we both were crying. I am very blessed to have parents that no matter what they have been through there is a loving foundation built on CHRIST!
Thank you MOM and DAD! By the way this letter was framed and hung in their house. If you visit please read it!
LOVE,
m

Memory 1: For Mom

This anniversary week, I recall true love that I was blessed to see in my parents...

Grocery shopping with my dad is an unparalleled experience. He scours labels; he calculates cost per ounce (long before stores began actually publishing that information); he whistles riffs to the Muzak; he knows the cashier or their bosses (a visit to the bread store, for example, would always include the cashier leaning in and, in a hushed tone, intimate which twisties were on the freshest bread.)

Selecting fruit took minutes of study. What Dad always did with me was instruct me to find the biggest, best one, the unblemished, most spectacular piece. That one was for mom. We'd bag it and begin looking for the others.

Every time, just by rote, we were finding the best for her.

Fight To Live

This poor couple was confronted with the terrible news that their third baby had the same debilitating kidney disease that her other two kids had. One had died already. She and her fiancee chose to abort the third baby.

The baby decided it did not want to not be aborted.

We're going through a challenging birthday today - a few more tet fits than usual. Some breathing challenges. But Zoe is in a group of children - people - who want to live. She wants to live. That's why she's here today, why Baby Finley is with his mom.

Zoe Visits The Doctor

Name: Zoe B
Age: 76 days
Weight: 6 pounds, 12 oz
Length: 20 inches

When Zoe was wailing, her pulse skyrocketed back to 180. Her doctor said the key is keeping her calm. Doctor said that at the 3rd or 4th month, Zoe's jaundice may return. She had problems with that early on, and it's likely it has been dormant for the past days and become a problem again. The kind of jaundice Zoe has is likely one that would require an operation to treat.

Then again, she's made it almost to 11 weeks. That's about 10 weeks longer than most baby's with non-mosaic Trisomy 18. She's alive because of her spirit, because of God's will, because of your earnest and loving prayers.

Friday Nuggets

Is there an actual physical place where you were hurt or failed that you kind of dread going back to? For me, for a long while, it was a former workplace where I was fired. I hated even driving by that place. I chose routes that would not take me past it.

Children's Hospital is like that for me now. I just don't want to go there. Not like they were anything but nice to us, it's just that I associate so much anger or pain or loss with that place. That building.

It's weird to have to go back there. Selah has her diabetes classes there, so I go park in the same structure, enter through the same door. It fills me with dread.

WAIT

My friend is running around, obviously stressed, her voice firm but over controlled, too busy to make eye contact. Too much to do. And the event she's organizing looms. I figured I'd bust out a little Scripture on her, drop some God knowledge on her to lift her, as God does.

I went to Biblegateway.com and typed in a keyword search of "wait on the Lord." I wanted that one verse about the wings of the eagles.

I got 31 hits and none of them were the eagles verse. (It's "hope in the Lord" in the eagles verse, and that's Isaiah 40:31)

31 times in a simple search. Wait. Wait. Here's Psalm 5:3: " In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation."

Two little (obvious) thoughts: David wrote a lot about waiting. I hope that's because it was as hard on him as it was on me. I always feel like I'm waiting on people. On events. On things. On feelings. I have to admit that I feel less like I'm waiting on the Lord than things I see. My boss. The next paycheck.

The other thought is waiting in expectation. Knowing that God answers. Knowing His sovereignty. Knowing that He hears me. Knowing He's real. And He's really telling me to wait.

In Which I Disagree With Dan VanderLugt

So I'm reading this very informative piece asking tough questions about the Bible. And Dan VanderLugt has the unenviable task of trying to sound smart in his answers. I've done it before (not well at all) and so I know where Dan's coming from.

At one point in his answer, Dan says this:

In heaven, our perspective will no longer be dominated by “former things.” Knowledge of past sins or earthly suffering will not cause the same kind of suffering and emotional anguish in heaven that it does now. We will see how God’s grace has healed all of the scars that sin left on our mortal lives. We will see how God’s grace could even use our repented sins to bring about His good purposes.

I may be unfairly picky on Dan, but I don't think Heaven is going to heal scars. I think Heaven is going to celebrate them. My big sis has an ad on her refrigerator that reads "Scars are tattoos with stories."

Those scars are the stories we'll tell and retell of how death or sin had one thing in mind, but love had something else planned for us. The biggest and best story will be about the scars that Jesus has. And no one will hurt for him or pity him or envy him. We'll just glorify him for those scars. In Heaven, our scars tell a story of grace.

20 You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. (Genesis 50:20)

I think I'm largely in a state of denial with our little Zoe. I can't imagine her gone. I can't imagine any of what's to come. There's a cut left to be made on me, a cut followed by a scar. And a story of grace.

Angels Wish
by Steven Curtis Chapman

Was God smiling when He spoke the word and made the world?
And did He cry about the flood?

What does God's voice sound like when He sings, when He's angry?
These are just a few things that the angels have on me

Well, I can't fly at least not yet
I've got no halo on my head
And I can't even start to picture heaven's beauty
But I've been shown the Savior's love
The Grace of God has raised me up
To show me things the angels long to look into
And I know things the Angels only wish they knew

I have seen the dark and desperate place where sin will take you
I've felt loneliness and shame
And I have watched the blinding light of grace
Come breaking through with a sweetness only tasted
By the forgiven and redeemed

And someday I'll sit down with my angel friends
Up in heaven
And they'll tell me about Creation
And I'll tell them a story of Grace

Well, I can't fly at least not yet
I've got no halo on my head
And I can't even start to picture heaven's beauty
But I've been shown a Savior's love
The Grace of God has raised me up
To show me things the angels long to look into
And I know things the Angels only wish they knew

Kellen Turns 15

Kellen turned 15 on Saturday. I'll get you all some pictures. He lit a fire and had some friends over. We set them all up with some kickin' goodie bags, which included everything from Pop Rocks to Gangsta tats. We got him some sandals and an mp3 player.

S'mores, stars, a big fire...that's a fun way to spend your birthday.

Big Eyes

Zoe's been awake alot. Sometimes fussing. Sometimes, just looking, her big (now greyish blue) eyes searching and studying. I think I bring this up a lot to you guys but it's almost surprising. Zoe sleeps a lot. So it catches you off guard to see these two big eyes out of what once was a deeply-sleeping kiddo.

Her breathing hasn't been to great lately. We've even tried a little oxygen on her over the weekend because her breathing pattern seemed so different.

Sometimes when you're feeling proud and happy and a little content with your poorly-breathing daughter, I do what I did Sunday - sit next to a toddler who was drinking 8-10 ounces and sitting up. He probably wasn't much older than Z, but it's obvious she's on a very, very different growth curve.

The most taxing part of raising Zoe is how slowly everything goes. Eating those two ounces can take many minutes. Calming her down after she loses it wailing crying can take a long while. It's raising a little baby - but with every step of her development retarded by her fight with life.