Love Never Fails

Guess why my former church allowed the following song to be sung at a wedding:

1. Because it beautifully proclaims the very words of the oft-used 1 Corinthians 13.
2. Because it reminds us of "whatever is true, noble, right and pure."
3. It wasn't, because it does not point people to the cross. And then, begrudgingly, it was allowed to be sung, but only because some other wedding had errantly been allowed to sing it.

Love is not proud
Love does not boast
Love after all
Matters the most

Love does not run
Love does not hide
Love does not keep
Locked inside

Love is the river that flows through
Love never fails you

Love will sustain
Love will provide
Love will not cease
At the end of time

Love will protect
Love always hopes
Love still believes
When you don’t

Love is the arms that are holding you
Love never fails you

When my heart won’t make a sound
When I can’t turn back around
When the sky is falling down
Nothing is greater than this
Greater than this

Love is right here
Love is alive
Love is the way
The truth the life

Love is the river than flows through
Love is the arms that are holding you
Love is the place you will fly to
Love never fails you

vessel

Maybe we should all stop trying to predict what God is going to do with our life.

Mo' Missy Black : Interview Part 2

Q: You made a decision to do something to support Trisomy and raise awareness. What did you decide to do, and why?

MBB: After I got home from Ironman Wisconsin 2008 I emailed Michael Hennesy and he gave me his website. I read everything on there and then goggled Trisomy 13 and 18 and read as much as I could. I bookmarked all the blogs I found, all the websites and read as much as I could.

My heart was deeply touched. With each child I read about, each family I read about. A little bit about my history here. I lost a baby sister when she was just 5 days old. She did not have Trisomy, but anencephaly. She was born without her brain. It was the hardest thing I went through as a child. I so wanted a baby sister and finally had one and we lost her 5 days later. This helped me relate to the families who were losing their babies to Trisomy shortly after birth.

I also had a little friend Aimee. She was not "normal" in the world's eyes. Most would have said she was not compatible with life. When we were out people would stare as I pushed her wheel chair. They would stare terribly. Aimee lost her battle with life when she was 14. I knew Aimee almost her whole life and wouldn't trade any of those moments for anything. She touched everyone's life that she came in contact with. She was incredible.

As I read about all Trisomy and these families and all they go through I thought of my sister, Blessing, and my friend Aimee. What would my life had been like if I had never known them? My life was made so much better because of them.

I knew right then and there that I needed to do something to help raise awareness for these Trisomy children and their families. I was very touched by Michael Hennessey and his passion for these children and loved that he was incorporting Ironman into his cause.

At t his point I had been doing sprint triathlons and knew that I wanted to do an Ironman someday. At that point it was just SOMEDAY. I still had well over 100 pounds to lose and really wasn't motivated. I was becoming motivated as I read about these babies. Doctors tell these parents that their children are incompatible with life. My sister was incompatible with life, yet we shared 5 wonderful days with her. My friend Aimee, in the world's eyes was incompatible with life, but we shared 14 wonderful years with her.

My question became who should get to decide who is or isn't compatible with life? I shouldn't get to decide that, the medical profession shouldn't get to decided that, the church shouldn't decide that, America shouldn't decided that. My hope in raising awareness for Trisomy is to help parents have all the options given to them. They should not feel that doctors, nurses, and people have given up on their baby, but should feel that people want to help them bring this baby into the world and do all that they can to help this baby. Even if the baby is only here and hour, a day, a year, or 19 years. These children deserve every chance to live as much as my children did.

I contacted Michael and told him that I would like to join Team Trisomy and do what I could to help raise awareness for these children and their families. I have done 5k's in their honor and triathlons. Every race I have someone's name written on my arm, a picture of them, or something to draw attention to the Trisomy cause.

In 2012 I will do Ironman Wisconsin to not only complete my weight loss journey, but to also raise awareness for Trisomy 13 and 18. If these babies can fight for their lives every day, I can fight for them through my weight loss battle on my way to becoming an Ironman.

It is an honor to be part of Team Trisomy and I look forward to my Ironman journey.

Principal Yurk

[scrippet]

ETHAN
(pushes his head through the door with a big smile)
Hey, Dad...When you grow up, do you want to be a principal?

GREG
(wondering why the boys are still not in the bathtub)
Why would I want to be a principal?

ETHAN
Because principals own the whole church and school.

GREG
Oh, wow.

ETHAN
My friend Aaron's dad is a principal.

GREG
What does he do?

ETHAN
He talks to people when they're bad. And helps them.

GREG
Are you bad at school?

ETHAN
His name is Principal Yurk. He owns the whole school.

[/scrippet]

Honey Breakdown

Dan provides an important graph regarding the honey demo.

How Do You Thrive?

While at the hospital, a discharge person was filling out forms for a program for Zoe. There were boxes to check for her "condition" to see if she qualifies. She was quickly filling out the top, "mental delay, check. physical delay, check, medications, check, special food diet, check. failure to thrive, check..."

Wait.

Thrive?

Happy 18 month birthday, Zoe! We're not sure how you got to 18 months without, as Dictionary.com defines: "prospering; being fortunate or successful."

Talk about thriving: my sister has a friend who just had a baby with Trisomy 18 last week. The baby was born at St. Joseph's in Milwaukee. The medical professionals there released mom and baby the day after she was born, telling the parents to hug and hold her, and...thanks for coming. See you.

It's a week later.

The baby's still alive.

Is she thriving? Check the box. What are we going to check for you?

An Interview With Melissa Bastian Black

God sends you friends. Melissa Bastian Black and I have talked over the past months trading blog comments and Facebook encouragements. Recently, she sent me this:

Hey Greg and the Batiansila Family. I'm doing a 5k this morning and I'm running in honor of Zoe. I want you to know that I am inspired by your family and your little girl. Right now I am battling my weight and have a goal of doing an Iro...nman in 2012. My battle is nothing compared to your little Zoe's and she and other children keep me going. If they can do it and battle every day of their young lives then I can do it and swim, bike, and run in their honor.

Then, she followed up with this:

Hey Batiansilas. I just ran my best 5k ever. I have never been able to do it in under 50 minutes and I did today. I did it in 47:19. Zoe helped me especially in the last mile. Give that little girl a hug and kiss for me. I couldn't have done it without her.

Which made me think. We all need to know more about Melissa Bastian Black. Here's part one of that interview.

Q: I had never heard of Trisomy before we had Zoe. How did you become aware of Trisomy?

MBB: My trisomy journey started on September 6th, 2008. I have been doing sprint triathlons and had decided that I wanted to eventually do an Ironman, so I decided that I would volunteer at Ironman Wisconsin.

The Saturday before the race I volunteered at gear check. I got to meet so many of the athletes and help them check in their gear. In walks this Cowboy with the biggest grin on his face. I helped him put his gear where it needed to go and noticed his hat. It said, "tri-ing for trisomy." I asked him what trisomy was and that is when I first learned about it.

He told me all about this precious children and their families. He told me that most doctors and medical professionals consider these children non-compatible with life and a lot of couples are encouraged to abort their babies. A lot of these children don't live long after they are born or don't make it to their first birthday, but he told me about kids who are making it past their first birthday and beyond. He was so passionate when he told me these things.

He told me how he was racing his Ironman races to raise awareness and was heading to break a world record. I believe Ironman Wisconsin was his 13th race that year and when I made a comment about that he would not let the conversation turn to him, but rather back to these children and their families. This conversation really touched my heart and I knew that day that my heart had been changed forever.

Q: How long have you known Michael Hennessey and how did you come to know him?

MBB: I met this Cowboy at Ironman Wisconsin 2008. When I asked him his name he told me that it was Michael Hennessey. After we talked I asked him how to get in touch with him after IMWI. I believe he gave me a card. I put that card away, we finished talking, and he left to finish his Ironman journey that weekend.

I got to see Michael on the run of the Ironman the next day. He was smiling as he ran through the aid station and I was able to cheer him on, even got a hug. I was working the finish line when he crossed it. He still had that smile on his face. I don't think he ever stopped smiling. That really left an impression on me. I cheered for him when he crossed the finish line.

I might have even given him his finisher's medal. Then he gave me the BIGGEST HUG ever. I didn't know if he would let go. It was not only the BIGGEST hug, but also the Sweatiest hug. I'll never forget it. I was so happy I had met him the day before, so happy to be part of his race day, and I knew during that hug that I had met someone very special with a wonderful cause.

I stayed and worked the finish line until the race ended at midnight. I cheered in the last runner, headed to my car, and then back to my hotel. I emptied my pockets onto the night stand and there was his business card all crumpled up. Before falling into bed I remember that I knew I had to contact this man. I believe I emailed him the next day.

We have been friends now for a little over a year. I am forever changed for the better from meeting Michael Hennessey.

Q: How did you find out about Zoe?

MBB: Michael Hennessey has a blog on his website www.ironmanforkids.com and he had asked people to pray for this baby named Zoe. I read about her and was very touched by her valiant fight. My kids and I started praying for her. I bookmarked your blog and follow her journey there and on facebook now. I like to call her my Zoe girl or just Zoe girl. She has captured my heart and I love her very much.

Q: How do you think Trisomy is handled and accepted in the U.S. today?

MBB: The fact that I was 34 and had never heard of Trisomy shows me that this is not a priority in this country. I was surprised to learn that Down Syndrome was Trisomy. The only people I have come in contact with that knew what Trisomy was when I talked to them, were families that I know with Down Syndrome children.

The fact that the doctors and nurses, in general, think these children are incompatible with life and never even give these children a chance in their minds shows me that this country is not accepting of children with Trisomy.
These families are not given any hope.

These doctors get to decide who is compatible with life and if it doesn't fit their definition then there is no reason to keep or even give birth to that child. (side note: I know families affected by trisomy that have had great doctors and nurses, so I want to give a shout out to the doctors and nurses who care and who give these little ones a chance.)

It's a shame that in 2009 that there is still so much prejudice in this country. People are prejudice based on race, wealth, and health and so much more. It's time to come together as a country and not judge people just because they are different then you.

The Honey Demographic

[scrippet]

GREG is lying on the bed, watching "Shanghai Knights" with ZOE lying comfortably on his chest. JEN watches more intently. You see, Chan choreographed all of his stunts in this one.

ETHAN enters holding a bottle of HONEY.

ETHAN
Can I have some honey?

GREG
On what?

ETHAN
(not understanding)
Can I have some honey?

GREG
What are you going to eat it with?

ETHAN
Just honey.

GREG
Just honey?

ETHAN
Just honey, in a bowl, with a spoon.

GREG
You want to- no! Who eats honey like that.

ETHAN
I do.

GREG
Who else?

ETHAN
Selah and Lisey.

GREG
No they don't.

ETHAN
(giggles)
Chinese guys.

GREG
Chinese guys eat honey in bowls with spoons?

ETHAN
...and farmers.
(giggles)
...can I?


[/scrippet]

Zoe's Fall Visit To Children's Ends

Apologies. Zoe and Jen made it home around 7 pm on Wednesday night. The delay was centered on a number of issues, not the least of which was the discovery that for the previous week, Zoe had been receiving the wrong amount of blood pressure medication twice a day.

Which explained the high blood pressure they measured while she was in the hospital.

Insert rant here. We continue to be grateful to Children's Hospital - Wisconsin. We are also amazed that they are the third best hospital in the world. What does the seventh best do?

Now that she's home, Zoe receives oxygen while she sleeps, which helps to reduce stress on her heart. Outside of that, the whole "why does she stay up for the majority of the night" issue has gone unresolved. On the other hand, if you've wondered what it might be like to sleep next to Darth Vader, I might be able to answer.

Right back into the maelstrom - I handled a long shoot Thursday followed by a shoot Friday, and Jen out to handle auditions for a few casts at a production in Hartford - which hopefully better explains the digital silence.

...and just home and some level of normal. Maybe some wine.

Special thanks to the Popes and Deirdre, who picked up the picking up while we were down a driver; Chris Pope for the taco stuff, perfect on audition night; Ben and Rebekah, who gave us pizzas and stuff that we're still plowing through; Avicom and everyone for putting up with crazy, Pastor Wendorf, a special reminder that sometimes, churches do care.

Way Past Big Speech Time

Zoe's Out

No breathing tube, she saw her mom in the hallway and tried to yell for her mom. She has cotton balls in her ears (team 2 put tiny little tubes in her eardrums). Relocated to the fifth floor. Jen's going to be with her.

First Team Through

First team has found that it is neither Zoe's tonsils or adenoids, but a sagging part of her breathing area. We'll keep you all posted as to what that means.

September 15: Convergence

Tomorrow three teams of doctors will tend to Zoe and hopefully give us some answers as to what's taxing her breathing while she sleeps.

At the same time, Zoe's big sister will get braces put on...and then in the coming weeks, seven teeth extracted.

Later tomorrow, three of Zoe's older brothers and sisters will try out for a play - two of the three for the first time.

It's funny because in years past, the third of these three statements would have led to quite a stressful night before.

Then again, the three who are auditioning did bring you work like "The Life of a Carrot." I think they'll be fine.

The song that's carrying me through is "This Is Our God" performed by Chris Tomlin and David Crowder*. (Alas, all I can find on YouTube is the non-Crowder version). Peace to our madness.



A refuge for the poor, a shelter from the storm
This is our God
He will wipe away your tears and return your
wasted years
This is our God
Oh... this is our God
A father to the orphan, a healer to the broken
This is our God
And he brings peace to our madness and comfort
in our sadness
This is our God
Oh... this is our God
this is the one we have waited for
Oh... this is our God
A fountain for the thirsty, a lover for the lonely
This is our God
He brings glory to the humble and crowns for the
faithful
This is our God

My Next Breath

Morning breaks before this eleventh floor. It looks like no one is awake, that the city below is lifeless. That it could be me here in room 1105 and everyone else left.

Zoe's sats have been good. Better - while sleeping - when she's got some o2 flowing by her. Heard last night that Bat is wrestling hiccups for 30 hours, battling to breathe. Along with Zoe, Jen and me.

Where is the next dollar going to come from? Or the next breath? For me, where will the next idea come from? Where will the next time when I'm in the same room with my wife come from? When will the next time my family be together come from? Does God see what I'm going through? What I'm carrying? That I can't take another step? And what is he going to do about it?

Louis Giglio talks about Isaiah 40. He says the answer is a question. Have you not heard? The Lord is an everlasting God. His understanding...no one can fathom. He gives strength to the weary. Power to the weak. Those who stand right in the midst of the craziness, in the midst of the pain, dealing in the middle of the chaos, will receive renewed strength.

Zoe Receives A Threat

A sweet, sweet friend of Zoe's has threatened her:

This Just In...

Scope Tuesday morning. Probably.

Sounds like...whatever presurgical assessments that were not made prior to the last planned procedure will occur on Monday, with an early morning scope Tuesday.

Running Out The Weekend Clock

One thing we've noticed through our time at hospitals is their reluctance to do anything on weekends. We observe that on the weekend, staff tries to keep numbers the same and run out the clock until Monday, when decisions can be made by the weekday staff.

It's the reason Jen and I both were excited about a Wednesday scope, a Thursday scope...and then lost a ton of happiness with a Friday scope. which became a.....

...we don't know. No one knows. It's the weekend! Maybe Monday, but could be mid-week. We've received zero answers.

Why sweat it?

Firstly, they had to stick Zoe repeatedly to put an iv in for surgery. It's still in. Why is it in now? For surgery....whenever that is. Surgery in four days maybe. Or two.

Secondly, there's a bunch of kids who have as-close-as-they-can-get-to-normal lives who are suddenly in code-red living, where you may or may not see a parent or either parent once a day.

Thirdly, there's the whole marriage-in-exile aspect of this mess, which includes gems like me instant messaging my wife "What's wrong?"

Fourthly...this costs money right? As far as I can estimate, these super-nice and dedicated professionals are waiting for surgery, like me and zoe and Jen and our family. It's just that I'm paying those super-nice and dedicated professionals to wait.

Yesterday I was listening to the lead singer of Tenth Avenue North talk about the book of James and his commentary on Job. The lesson is: persevere and cling to the Lord, because this story is about His goodness.

10-11Take the old prophets as your mentors. They put up with anything, went through everything, and never once quit, all the time honoring God. What a gift life is to those who stay the course! You've heard, of course, of Job's staying power, and you know how God brought it all together for him at the end. That's because God cares, cares right down to the last detail. (from a paraphrase called "The Message")

Deep breath.

Look, I know I'm not Job. Not by a long shot. There's an anonymous commenter on this blog who writes gems like the one on the right. He/she is always there to remind me that I'm not Job.

But this sucks. Jen was telling me yesterday that for her, everything is a fight. We both include our work, struggles in and out of the house.

I will openly admit my jealousy of almost everyone's Facebook status today. Gotta find some staying power.

Zoe Just Went In -No She Didn't. REVISED.

For her scope.

Zoe went in and then Jen witnessed a vigorous discussion by the doctors (ENT, anesthesiologists) regarding where (i.e. what bed) Zoe was to go after surgery.

The anesthesiologists refused to operate because there was no PICU bed available. Was this something that could have been determined...oh I don't know...before they carted her off to surgery? Perhaps.

Their disagreement resulted in postponing the surgery until next week. Sometime.

Jen's going to try and find out when next week they plan to have the surgery..

They apologized to Jen.

SCOPE TOMORROW

Jen just signed the consent form, and the scope's tomorrow. The doctor was very pleased with Zoe's 02 sats last night, and wants the ENT team on hand for the scope because if they do see an obstruction, they can remove it while Z is under.

At this time, the thought is that given her night last night and the observation that her sats are very good when she lies on her side...that we'll have the little bug home soon.

Praying for a good scoping tomorrow.

A Note To Hospitals Everywhere

Dear Hospitals,

If you make changes in your careplan for a child, please consider telling parents your plan has changed.

Thanks,

Greg and Jen

Yeah. That scan for yesterday and today - the one where we couldn't feed Zoe after midnight, all night - was postponed. Until tomorrow. So, Zoe could have eaten. If we were told. But we weren't.

Maxin' Waiting For A Scan

Sats are fine now. Pastor Wendorf visited. Waiting on a neck Xray and then the scope. Zoe is relaxin'.

Pray - UPDATED 11:20 AM CST

Zoe was admitted to Children's this morning to try and find out what can be done about her terrible sats when she sleeps. Could be tonsils and adenoids removed, could be a tiny tiny cpap mask...could be even more dramatic measures.

Doctors will be scoping Zoe to find out the level of her obstruction and make decisions about a course of action. She for sure will be at Children's overnight.

some better news: HEY HEY HEY....IT'S FAT ZOE! 12 lbs 2 ounces. that's up 7 ounces since last weigh-in.

Sounds like scope won't take place until either tomorrow or Friday.

Dad has lost five pounds since last week.

These are two good people. I've been contemplating what life would be like without either, without one. It's just stifling.

The sun rose today, and both are with us. So, pray.

AE & Zoe Update

Saw my dad this weekend. He had a rough time of things...dealing with nausea, just having trouble performing simple digestive tasks. The big goal is that he eats, gains weight, so that perhaps this newer treatment can be used. All of that is pushed aside if he struggles like he did this weekend.

Pray for Bat. His whole life he's been fighting, and it's hard now sometimes for him to figure who or what to fight against. Maybe everyone. He's a tough guy, and he needs prayers and a hand of gentleness on his soul.

Jen and Zoe went in for Zoe's sleep study, and the initial word is not good. It's likely she'll be admitted tomorrow morning so that the doctors can decide how to deal with Zoe's terrible pulse/ox and co numbers while sleeping.

A Peek At What I've Been Up To

Here's a video we did for Airstrip Technologies, a company owned by two men who love the Lord. The application was chosen by Apple as one of it's four highlighted iPhone apps this year at its developer's conference, and this video is currently being used around the world as part of Apple's Healthcare Roadshow.