Wednesday, July 30, 2008
So I sent the link to this song. I'm a sucker - a big huge sucker - for my guy Kirk Franklin, and gospel choirs. Because they minister to me with music like this.
Monday, July 28, 2008
Now, 126 days after receiving that diagnosis, I am starting to grow this idea that I'll be able to 1) identify that moment and 2) prevent it. It's a revisitation of an illusion most moms and dads believe: that they can keep evil, sadness - even dangerous UV rays - from their child, thus giving them a better life.
It's hard not to think it, since right now, if it's stasis, is pretty normal. She's little, yes. And fussy. But her breathing, if anything, is better now, not worse. Her eyes seem brighter now, not dimmer, her gaze more intense. When she hears her mom or dad, she moves her head around to try and find the owner of the voice.
It's hard to reconcile my daily conversation and interaction with Zoe with the fact that we are still living in Zoe's first six months, where the mortality rate is 90%. Or the idea that her body is going to her fail her fatally.
The parental illusion is that all babies grow, and that they learn to cope and smile and laugh, and their immune system and their coordination grow until they become President. Or maybe a Nobel Prize-winning President.
Infused with the illusion is this knowledge of God's might and ability to heal. You have never heard me talk about this on this blog, because it scares me to greatly. Could God change every 18th chromosome in every cell in Zoe's body? Undoubtedly. But will He. Will He? Will He defy science to feed my illusion?
If the past is any evidence, God will continue to defy both. Zoe's doctors and parents will both end up being wrong, somehow. And He will be right. I pray for the wisdom to see His rightness in all of this.
Sunday, July 27, 2008
We keep encountering that kindness everywhere. It's a blessing, a reminder of the beauty we all have inside of us somewhere.
Today we went to get formula and the lady commented on how much it costs. Only two thoughts ran through my head, neither which she could understand: 1) I'm glad I'm buying formula at all; and 2) I'm paying for literal mother's milk with kindness.
As Jen said at the Robbie concert, Zoe's breathing God's air. And she's eating manna.
Friday, July 25, 2008
Which brings me to today's devotion, which talks about how today, The Beatitudes seem to be "merely soothing and beautiful precepts for overly spiritual and seemingly useless people, but of very little practical use in the rigid, fast-paced workdays of the world in which we live."
Here's Luke's take on one verse: "And he lifted up his eyes on his disciples, and said, Blessed [be ye] poor: for yours is the kingdom of God."
Matthew adds the words "in spirit" after "poor."
So God is saying we're blessed if we're poor, and/or poor in spirit? What did he mean when he said "poor"? Here's the definition of the actual word used:
1) reduced to beggary, begging, asking alms
2) destitute of wealth, influence, position, honour
a) lowly, afflicted, destitute of the Christian virtues and eternal riches
b) helpless, powerless to accomplish an end
c) poor, needy
3) lacking in anything
a) as respects their spirit
Don't you just love definition 2b? That's me. I feel like I've been treading water for a long time. I'd swim in a direction if I knew where to swim. Powerless, destitute, tired.
Thursday, July 24, 2008
It's almost surprising to see Zoe reacting to her environment more and more - but she is. She doesn't like it when her big brother Kellen holds her. She loves it when Izzi does. When mom gets her, she whines more.
Tuesday, July 22, 2008
Some of you may recall my sharing several months ago that a young couple in our congregation had been told that one of the twins being carried by the mother was diagnosed with a chromosomal abnormality and some physical problems. Friday this couple learned that their baby--a little boy--has Trisomy 18 (the same condition as Deirdre's niece Zoe). The other baby, a girl, appears to be fine. Please continue keeping this family--Nathan and Carol and their 2-year-old son Paul-- in your prayers. Their babies are due in September.
There have been times I've searched through the Bible for help. Typed in the word "comfort" in the search blank of www.biblegateway.com. What comes up might, at first, seem unsettling:
1 Comfort, comfort my people,
says your God.
2 Speak tenderly to Jerusalem,
and proclaim to her
that her hard service has been completed,
that her sin has been paid for,
that she has received from the LORD's hand
double for all her sins.
That's it? No "I'm going to take away the things that hurt them"? No "Don't worry, it will pass"?
Just God saying, I know the ending of the story, and it ends up with you in my arms. I have paid the price so that the story ends perfectly.
Our comfort is in the end of the story, not its 13th or 121st or 39th chapter.
We're grateful for the guidance, because we really didn't know what was enough. Zoe's pediatrician recommended that she eat a mixture of five ounces of formula and three scoops of formula. It's a much richer mix of ingredients than we were using. It's also 2.5 times more than little Zoe is used to eating.
So we've been plugging away, feeding her as much as we can. The truth is, her little tummy isn't used to that much food and she hasn't handled all the food well. We also are realizing that even if Z had an eating tube, she'd struggle with that much food. So, for the time being, we'll stick to giving her bottles and see what happens.
Jen has told me she's seen it, but I did see it yesterday - a full, gummy smile. Welcome to day 122, Zoe Bean.
So when I don't write on this blog, it's because there are things so troubling, so deeply painful, that I just don't know what to say. I am pinned under something huge.
Right now, my parents have to move. How many within his congregation are handling that situation and this man of God is faithless and sickening.
There have been many times I've wanted to comment on just how horribly badly a pastor can be treated, but I know my father's spirit and sensibility, and I'd be representing my emotions, not his.
As this sickening tragedy develops and the truth comes to light, I'll share it with you. For the time being, pray for Bat and Christa - two people who have turned their lives over to God.
Saturday, July 19, 2008
There's a quote for this, and I'll find it. But here's another to tide you until I find the right quote.
"I find a good many people have been bothered by...Our Lord's words, 'Be ye perfect.' Some people seem to think this means 'Unless you are perfect, I will not help you'; and as we cannot be perfect then, if He meant that, our position is hopeless. But I do not think He did mean that. I think He meant 'The only help I will give is help to become perfect. You may want something less: but I will give you nothing less.'
Let me explain. When I was a child I often had toothache, and I knew that if I went to my mother she would give me something which would deaden the pain for that night and let me get to sleep. But I did not go to my mother - at least, not unil the pain became very bad.
And the reason I did not go was this. I did not doubt she would give me the aspirin; but I knew she would also do something else. I knew she would take me to the dentist next morning.
I could not get what I wanted out of her without getting something more, which I did not want. I wanted immediate relief from pain: but I could not get it without having my teeth set permanently right.
And I know those dentists: I knew they started fiddling about with all sorts of other teeth which had not yet begun to ache. They would not let sleeping dogs lie, if you gave them an inch they took a mile.
Now, if I may put it that way, Our Lord is like the dentists. If you give him an inch, He will take a mile. Dozens of people go to Him to be cured of some one particular sin which they are ashamed of (like masturbation or physical cowardice) or which is obviously spoiling daily life (like bad temper or drunkenness). Well, He will cure it all right: but He will not stop there. That may be all you asked; but if once you call Him in, He will give you the full treatment. "
-C.S. Lewis, "Mere Christianity"
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.
Thursday, July 17, 2008
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.
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.
Tuesday, July 15, 2008
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...
Monday, July 14, 2008
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
I hate all your show
Instead let there be a flood
An endless procession of righteous
Instead let there be a flood
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
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.
Saturday, July 12, 2008
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.
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."
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.
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.
Friday, July 11, 2008
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)
Thursday, July 10, 2008
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.
Wednesday, July 09, 2008
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.
Tuesday, July 08, 2008
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.
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.
Monday, July 07, 2008
Saturday, July 05, 2008
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.
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:
We hope that they know they are not
Friday, July 04, 2008
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.
Thursday, July 03, 2008
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.
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.
Tuesday, July 01, 2008
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.