Praying

I've been wanting to post on prayer. More than anytime in my life, I thought about the function of prayer in my life and in the life of the faith community. No big revelations and I haven't been enlightened on any grand scale but I feel strongly about one aspect of prayer: when someone tells me they are praying for Ira and for us I am reminded of God's presence with us.

I want to say more about prayer but for now, I'll share this e-mail excerpt from Ann C.:

Okay, have you heard of prayer pagers? I guess I first heard of them about a year ago when a friend from church had a little boy that needed brain surgery and another person at church gave her one to use while he was hospitalized. The deal is, you get a pager and you let people know the phone number to call. When they reach the number, they will hear a message like, "you have reached the prayer pager for Ira, please enter your zip code and the family will know that Ira has been prayed for. " Maybe at just the right moment when you are down or on the long subway ride, you will be encouraged as you feel the little buzz and know that someone is lifting you guys up to God. I really felt compelled to do this.

So the pager arrived today. The toll free number is 866.240.0163. You'll hear Ann's voice prompting you to leave your zip code. Once you do that, stay on the line to hear the concluding message and we'll get the buzz.

We don't know Ann but appreciate that she has done this for us. Honestly? I'm not sure how I feel about a prayer pager, but I'm so thankful by Ann's act of love that once again, I'm reminded of God's presence.

The Hospital Visit

Perry H. Biddle is the pastors pastor. He wrote books for pastors on what a hospital visit should look like or what to expect in performing a marriage or a funeral. He's written 18 books for the clergy and laity.

I just finished reading A Hospital Visitation Manual. As you minister to people in the hospital remember these ten random things I gained from reading the book and from living in a hospital for the past five months.

1. Keep visits brief. A survey of ministers said they stay anywhere from five to fifteen minutes. Sound too brief? Consider that it takes a lot of emotional strength from the patient to be "on" for the visiting friend/pastor.

2. Check with the nurses before knocking to enter. You will be respected by the patient's nurse for doing so.

3. Thoroughly wash your hands before entering room. Scrub, people, scrub.

4. Always knock before entering. No surprises. You know how those hospital robes expose. Identify yourself when knocking.

5. Listen with your eyes. "A quick look around the room will reveal helpful clues for shaping the pastoral call." Is the patient in bed? Walking around? A lot of machines? Few or many get-well cards, flowers or gifts?

6. Use humor when appropriate. The hospital is a very serious place so your smile and light humor will be uplifting.

7. Touch, but watch out! According to Biddle, "so few people touch the patient unless they are doing some medical procedure that a gentle touch can be a welcome sign of caring." But, people, ask first! Make sure the touch can't be misconstrued in any way!

8. Don't pry into medical details unless offered by the patient. The patient can get tired of talking medicine but conversely, could use someone to help think through their medical future.

9. Wanna really help? Act. Rather than proclaiming good news with your mouth ("everything will be okay!") lovingly act. Through acting you proclaim God's presence at a time when His presence might be in question.

10. Wash your hands upon leaving...but not in the patient's room as you don't want to leave the wrong impression. Scrub, people, scrub.

So Much To Say

It's Monday night and Laura and I just got in from the hospital. Laura's mom, Kay, is here so having that extra pair of hands makes it possible for Laura and me to be at the hospital at the same time.

Ira's day today mirrored the good weekend he had. The big news is that Ira was put on the cannula on Saturday afternoon and for the first time in Ira's five months of life, we took him outside. We began by wheeling him around the NICU. All the nurses wanted a word with Ira as it is a joy to see any NICU baby out of their crib. Then I asked if we could go outside. The nurse said, "Why not?" We got all our gear loaded up. No, not a diaper bag but an extra oxygen tank, an emergency intubation kit, a general emergency kit and two nurses. Ira acted like he had done it a hundred times before. It was a great moment.

On Sunday morning Ira spent three hours off the CPAP and three more hours off Sunday evening. And we did the same today. Remember that I said our goal was for Ira to be off the CPAP 4-6 hours a day? You do the math.

Problem is that Ira likes to sleep when he's on the cannula as if to say, "this is hard work guys and if I sleep I'll make it as long as you want me to." We'll talk to the doc in the next couple of days but I'm sure he'll want Ira to be able to be awake and breathing with ease while on the cannula.

We are glad about this weekend.
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I'm really happy to be a part of the Brooklyn church plant. It's a good, strong group of people committed to living their lives for Christ in the city. And that's no easy task. Last night, we dedicated our newest member, Jasper. He was born this summer and is cute as a button. After, we took a group picture. Below are most of the family that meets in our home on Sunday nights.

My Media

Every Sunday night I'll change my Movies I Like and Books I Like on the sidebar.

The movies I chose tonight have a theme: strong girls/women. "Born into Brothels" is an amazing documentary about kids who are born into brothels in India. The girls documented are strong, smart and capable in spite of their oppressive surroundings. I want Sophia to ride a whale someday so "Whale Rider" makes perfect sense. If Sophia can play half as good as Keira Knightley's character in "Bend it Like Beckham" Laura and I will retire early. Finally, the strength, resolve and leadership of the mother in "In America" are qualities I desire for Sophia to have. The message from these strong girls/women? Anything is possible!

The books I chose are books Sophia likes and that we like to read to her. (Not all books are fun to read!) "Who Hoots?" and "Quick as a Cricket" are fun books that are well illustrated. "please, baby, please" is a hilarious book by Spike Lee. Finally, "Knuffle Bunny" is written by a guy who lives in Brooklyn. The story is set in Brooklyn. The pictures and story are very familiar.

Check 'em out!

From Jon Stewart

Warning! PG-13 material to follow. Jon Stewart opened his show on Thursday night with the following bit on the Hurricane Rita's approach:

I have this quick thing I want to say to the Almighty: "What part of God bless America don't you get?" How many times do we have to go over this, "GOD BLESS AMERICA, from the mountains, to the prairies, to the...the whole *&%@@! thing." BLESS! This song is not, "God flatten or drown, fill with water." What do you want from us? We already have almost as many churches as strip clubs? What else do you need? You're really bumming me out, dude.

Listen, friends. I'm not blaming God for all the hurricanes but Stewart is only following the natural and logical conclusion of most of our God-talk. We, as Christians, will say in one moment that God blessed me today with a parking space but in the next moment we'll say that God had nothing to do with the hurricanes.

Part of my quest as a Christian is to find consistent language about the way God works in this world. Stewart does well at pointing out that we Christians have a long way to go before we make sense to the rest of the world.

Ira's Premier

How do you like my new design? It's spectacular, huh? All credit - and I mean all -- goes to Jason Isbell. Jason is the youth minister here at Manhattan Church of Christ but as he often reminds us, he can't simply be defined by his youth ministry skills. He felt sorry for my sad, pathetic blog and so urged me to let go and allow him to create something fun, beautiful and clean. I love it. Thanks, Jason.

I mentioned that my sister, Katie, helped me create my first iMovie. It's nothing spectacular and I'm pretty sure that veterans of iMovie will notice flaws or rules broken but I like how it turned out and I'm sure Ira's grandparents will be happy with the outcome. Jason Isbell has helped me make it available for your viewing. In order for the movie to work you must have a high speed internet connection and QuickTime 7.0. It's a big file (41 mb) and will take a while to download on your computer, but it will not work if you do not have QuickTime 7.0.

If you use a MAC (which all of you should), then click here to download QuickTime 7.0 and then you're ready to go.

If you use a PC, then click here install QuickTime 7.0, restart your computer, and you will be ready to go.

Click below to watch.

He's My Son Video
Enjoy!

Framing -- An Ethical Dilemma

Okay you ethicists out there, I've got a dilemma and need your help solving it. When a catcher frames a pitch (makes it look like it's a strike when it's really a ball) is he lying? I'm watching Javi Lopez, a veteran catcher for the O's, and he's framing pitches like he's building a house.

So what's the deal, is he - and other catchers - lying by framing pitches?
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Speaking of baseball, is anyone surprised that the Yanks took over first place in the AL East with tonight's win and Boston's loss?

C'mon, Yankee haters you gotta love this race!

Ira Update, Kudos, iTunes

Ira's doing well these days. While he is still throwing up more than usual, it's less than what he was this past weekend.

His oral feeding sessions with the feeding specialist are going well. He is taking baby food via a spoon. It takes him forever to swallow a small bite. He just doesn't feel comfortable eating because when one swallows, one has to temporarily hold one's breath. To a kid who doesn't have much breath to begin with this is a frightening prospect.

His sessions with the OT and PT are going good. They are so pleased with his development. He is doing almost everything a five month old should be doing. His neck/head control needs more work and he doesn't like the prone position one bit, thank you very much.

He is doing okay off the CPAP and on the cannula. He works hard but is able to last about two hours off CPAP. We're shooting for four and they will give us the green light to go home.

When Ira's CPAP is off and the cannula on, we're able to see more of him and take him in more completely. It's interesting. He looks much older than he is. He looks like he has already traveled far in this world and seen much. No baby should have to have that kind of look about him or her.
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Laura received some boxes of Kudos Chocolate Chip bars yesterday. For those who sent them - you know who you are - Laura says, "yum, yum! Thank you very much!" You made her day.
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Finally, I need some help. I've been given a $15 iTunes gift card from my Clemson Alum (booo!) friend. I'm not up to date on the latest and greatest music out there and could use your suggestions as to what I should get. Here are the rules:

1) I'm not a huge fan of Christian music. I hope that doesn't offend folks out there but it's just not my cup of tea. I appreciate it and I understand it's place in the Christian world but I'm personally not a fan.

2) My taste varies. U2 and Coldplay serve me well when I want to contemplate the meaning of life and where the world should be going. When I want to swing, Lyle Lovett serves me best. I work out to Kanye West. When I'm angry and want to bang my head, I pump up Green Day. I like the Shins, White Stripes, Ben Folds...the field is wide open.

3) Finally, I would like to be introduced to really cool music that most people don't know about. My New York friends should have much to say about this as the music scene here is hot but I imagine there are others of you who are in touch as well.

So help a brother out. What are your recommendations?

Haroun and Napoleon

So I write this "woe is me, life is hard, I'm so sad" post below and then I open up my latest read, Haroun and the Sea of Stories by Salman Rushdie where the opening lines are these:

There was once, in the country of Alifbay, a sad city, the saddest of cities, a city so ruinously sad that it had forgotten its name. It stood by a mournful sea full of glumfish, which were so miserable to eat that they made people belch with melancholy even though the skies were blue.

In the north of the sad city stood mighty factories in which (so I'm told) sadness was actually manufactured, packaged and sent all over the world, which never seemed to get enough of it. Black smoke poured out of the chimneys of the sadness factories and hung over the city like bad news.

I think I'll turn on Napoleon Dynmaite now and attempt to laugh. After all, Napoleon is pretty good with the bow-staff.

Emotions

I'm feeling a little emotional today. Is that okay for a guy to say? Probably not and I certainly wouldn't make that announcement in my gym locker room but I can't hold it in.

Maybe it's because they feed Ira more than Laura can produce and I see in her face the sadness that comes with the realization that at some point they will have to supplement her breast milk.

Maybe it's because I'm sick and tired of the commute to the hospital. And that I would do well not to ever have to walk into this place (I'm in Ira's room) again.

Maybe it's because Laura, Ira's nurse and I just worked our butts off trying to calm Ira down as he fought to breathe.

Maybe it's because he's been throwing up constantly since Friday and none of us have any idea why.

Maybe it's because I keep reflecting on a question that Mike Cope asked Laura: "What was it like to carry Ira in your womb?"

Maybe it's because I long for home and have been feeling quite nostalgic as of late.

Maybe I'm just feeling sorry for myself.

Whatever it is, I hope my fellow commuters on the A train will excuse me if I burst into tears on my way home tonight.

Why A-Rod is the MVP of the MLB

FROM THE NY TIMES, TORONTO, Sept. 17 - The ball skipped to Alex Rodriguez's backhand on one hop. In that instant, Rodriguez, the Yankees' third baseman, processed critical bits of information.

It was the bottom of the ninth inning at the Rogers Center, and the Yankees led the Toronto Blue Jays by a run with one out and runners on first and second. Rodriguez's internal clock told him that if he fielded the ball and threw as hard as he could to second base, the Yankees would have time for a game-ending double play. The hitter, Shea Hillenbrand, was slow and easy to double up.

But Rodriguez also knew the risk. The runner on second, Alex Rios, had a good lead and would keep on running if Rodriguez went for two. By passing on the sure out at third, Rodriguez knew the score would be tied if the Yankees did not turn two.

As soon as Rodriguez let the ball go, all he could do was hope. He crouched over with his hands on his knees, watching intently as Robinson Cano caught the ball at second, pivoted and bounced a throw to first.

It was a tricky hop, and the umpire hesitated for a moment. But Tino Martinez held on and Rodriguez exulted, bouncing away from third with his arms raised. It was Yankees 1, Blue Jays 0, disaster averted, winning streak at six. It was pennant race baseball at its best, a fitting ending to a day full of defensive gems.

"To me, it's like hitting a walk-off grand slam," Rodriguez said. "I love it. Guys get on me because I get too excited. I'm like a 5-year-old kid out there having too much fun. But that was fun."

And he puts up incredible offensive numbers. Definitely this year's MVP! Anyone care to disagree?

Wristband Mania

The wristbands look great. Thanks, Steve for making that happen and thanks to the Whaley family for allowing Noah to continue in his ministry here on earth. We have been asked about our wristbands by several people and we are always proud to tell them about Ira. Check out the blog where you order the wristands. Steve is asking that people send in their photos and/or comments about where you have taken the Ira Lester Hays wristband. It's a very cool idea.
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As you can see from the photo below, Katie was in town to help. She was incredibly helpful. She made muffins, cookies, and soup. She watched the kids. But more importantly she helped me make my first iMovie. It's all about Ira. I used the song He's My Son. I cried the entire time I made the movie. Thanks Katie, for all your help this week.

Marathoning and Clubbing

I wish I had something concrete to report on Ira. I'm reminded of our first experience watching the New York City Marathon. We lived on 1st Ave our first year here in NYC. Part of the marathon course was a run up 1st Ave. I remember seeing all the real runners pass by. I was amazed at their endurance. I remember seeing all the regular folks and was amazed at their perseverance. Then I remember seeing, hours later, the walkers. I wasn't that amazed with them. What was the purpose? It was on the brink of darkness and here came the walkers.

Now I find myself and our family in the position of those walking a marathon. We aren't going anywhere fast.
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Laura and I have joined a new club. Not willingly. It's purely circumstantial. I would recommend you not look into joining. It's the club of those who have dealt and are dealing with acutely and chronically sick children. When I see other fathers in the NICU waiting room, we give each other a nod. It's not the kind of nod you give to a friend across a large room. It's the kind of nod that says, "I know you are living this hell too and I feel you."

Being a part of this club does have its privileges. Laura and I were privileged to spend our Tuesday with Mike Cope. He came up to talk with us about how it is to live and do ministry in the midst of chaos. We stood at Ira's bedside and talked. Laura talked with Mike. I talked with Mike. He took us to dinner and we talked. We talked on the subway as we rode home together. It was a good Tuesday and good to be in the presence of someone who has traveled this road.

The funny thing is that Laura and I and Mike didn't really know each other before he came to see us yesterday. We, of course, new of his work and have heard him speak and he new of our work but we didn't really know each other.

You see, that is what it means to be a part of this club. You don't have to know much about another parent of the club to know what kind of stuff they are dealing with in life. The nod says it all.

Good Guys v Bad Guys

Ira had an okay weekend. He struggles to breath when on the cannula. You feel and hear him breathe. It's a labor. He finished his round of antibiotics and his site looks much better. He's quite the fatty. When he sits in my lap facing out, the nurses call him "little buddha." They just aren't used to fat babies.
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You might remember that I mentioned Baby Alix back on my June 2 post. She had a CDH and shared a pod with Ira for a while. She's home and doing well. We've kept in touch with Alix's parents even though they were the troublemakers of the NICU. It was a risk being seen with them due to their reputation but they were so cool, we couldn't help ourselves. (inside joke)

Alix's granddad told Laura and me that he would score us some of his business's Yanks tix if we were interested. We were and he did. He set us up with Yanks v BoSox. We sat on the third row right behind A-Rod. I went early so I could take in batting practice and see Memorial Park. It was a night we will never forget. Thanks O'Connor clan! A few pics:

THE Evil Empire

Who doesn't want these two guys on their team?

These guys genuinely like baseball and have fun playing it.

The Good Guys Win! And take the series 2-1. By the way, my team gave a $1,000,000 to the Red Cross. How much did your team give? See, they are the Good Guys!

From Everything Is Illuminated by Jonathan Safran Foer:

...there are only so many times that you can utter "It does not hurt" before it begins to hurt even more than the hurt.

I reported on the 4th that Ira was being treated with antibiotics for the bacteria that was growing around the Broviac site. The antibiotics were being administered through an IV. Ira lost (meaning, the IV got occluded) his IV on Monday evening and so they worked on getting him a new IV. He lost it again on Monday night and got him a new IV. He lost it again Tuesday evening and they worked for an hour (shaved more hair) and finally got a new IV. Guess what? He lost it again on Tuesday night. The nurse decided to screw the antibiotics ("Rain on it!" as a friend would say) and wait until Ira's doctors reported for duty on Wednesday morning. She strongly suggested that they try to find an oral antibiotic with which to treat Ira. The doctors agreed and so we are going that route. When Laura and I saw Ira on Wednesday he was swollen from all the trauma. He was tired and wasted. It's hard to see him like that.

We started working Ira off the CPAP on Tuesday. He lasted about 30 minutes on the nasal cannula on Tuesday and about 45 minutes on Wednesday. The goal is for Ira to be off the CPAP and on the nasal cannula eight hours a day. The neonatologist following Ira was pretty clear: weaning Ira off the CPAP and onto the nasal cannula is going to take a long time. The social worker came and spoke to me and asked if Laura and I were prepared to be around for another few months. Ugh!
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Once again, our friends Yael and Bryan wowed us with their generosity. They scored four Coldplay concert tix and invited us to go with them. So last night we got some brick oven pizza in Brooklyn and then headed to The Garden. We had floor seats and during the encore, Chris Martin got off the stage and worked his way back to the sound table. We were about 4 or 5 rows from him at that point. It rocked. Laura and I were able to loosen up and were a bit more touchy-feely than normal. We felt young again (okay, so 31 isn't that old but when you are surrounded by a bunch of 20 somethings...) and we genuinely had a good time. They ended the show with the track, Fix You. And as Martin and the rest of the audience belted out the chorus I couldn't help but think about Ira:

Lights will guide you home
And ignite your bones
And I will try to fix you

And so as the congregants at The Garden hoped along with Chris Martin that there is something out there that can fix us, I was praying to God that he would ignite Ira's bones and fix him.

The Ira Lester Hays wristbands are in. Steve is working on getting them shipped out ASAP. But cut him a little slack, he and Jen just had their third child. Congrats, Steve and Jen, on the birth of Tate Coleman Eller.
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My sister, Katie, is the pastor of First Christian Church, Disciples of Christ in Lawerenceville, Georgia. Check out the Rev. Katie link to read some of her stuff. We are so proud of her.
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We watched Kung Fu Hustle this weekend with friends. It was well done, over the top and freakin' hilarious. If you can deal with stylized violence and you need an easy laugh, then check out Stephen Chow's latest work. It's no wonder it got such critical acclaim.

IRA NEWS AND NOTES

Ira's Broviac came out today. . . though not under his and/or our terms. The Broviac was infected - think green, puss and swollen - and so it had to come out. That explains why Ira's been a bit cranky as of late. We're glad it came out but sorry that Ira now has to go through yet another round of antibiotics. The antibiotics are being administered through an IV. I won't tell you how many times they stuck Ira to find a workable IV. ARGH! Our poor, little guy can't catch a break.
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Laura and I have decided that Ira will come home when it's time. The rehabs are simply too far away and most of the health care professionals we talk to say that Ira will thrive at home. While the task seems daunting, we can't imagine not having him home with us. Our 850 sq ft apartment sounds very small all of the sudden but we'll make it work. We are determined.
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Speaking of home: Baby Lily went home with her mom last week. Lily is a month older than Ira and has the same condition (CDH). I wrote Lily's mom to ask her how the first night went and this is what Lily's mom wrote back:

my night was the worst... it is so much work taking care of lily.. the six meds she is on, the every three hour tube feeding, not to mention the chest pt, suction, etc... i was a nervous wreck with everything... my whole night was spent staring at her to make sure she was breathing correctly and counting her breaths to make sure she was not tachypnea... oh what a nite.... anyway im better now the nurse will be here soon and i can get some rest... lily is sleeping peacefully... i just over-fed her so i am sure she will be throwing up soon.. this kangaroo pump is nuts. it never alarms when the feeding is over it just keeps feeding her.... Pray for me tonight im gonna need it.

Pray for Lily's mom. I imagine our experience will be very similar.
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My sister, Jackie, left on Saturday. She was tremendous help and Ira took a likin' to her as you can see from the pic below. Click on the picture to go to my flickr.com account to see Sophia helping her brother out with his pacifier.


Enough of the pics already
Originally uploaded by joechays.

Jerry Lewis will host the 40th Jerry Lewis MDA Labor Day Telethon on Sunday night. The show raised $600,000 in 1955 and $60.5 million last year. The show holds a special place in my family's collective heart for a couple of reasons.

My mom and dad allowed us to stay up late on Telethon night to make sure the local station made their monetary goal. At some point during the night, mom allowed us to call in and make a $5 donation. Watching the barometer rise as the night faded away was very exciting and we felt good about helping out this worthy cause.

We had no idea that we would be so thankful for the MDA as we are today. My sister, Jackie, was diagnosed in November of 2004 with Dermatomyositis. This inflamatory myopathy is one of the 30+ diseases under the MDA umbrella. My sister's neck and limb muscles feel weak. She often deals with muscle pain and swelling. And rashes affect her cheeks, eyelids, neck, chest and limbs. We are incredibly grateful for the money raised by the telethon because it goes to centers like The Vicki Appel MDA Neuromuscular Clinic where Jackie is helped.

Jerry's goal each year is to raise "one dollar more" than the previous year's amount. Won't you help Jerry reach the goal and help those who suffer from muscular dystrophy? If you don't call in your donation you can always donate online.

OVERWHELMED

I'm overwhelmed today. Not because of our situation but because of those sick babies and children in New Orleans Children's Hospital and Tulane University Medical Center. That's all I think about when I think about Hurricane Katrina: the sick babies and children in the hospital. Thankfully, Texas Children's is evacuating the children. But they need your financial help in dealing with the extra children and families. Please consider giving to them. Go here for more info.

Jeremy Jackson grew up in New Orleans. His mom and dad still live there. Check out Jeremy's blog and read specifically the post titled Contact. Read the comments that follow because it's the first time Jeremy hears from his dad, a photographer, who is daring the conditions in New Orleans.
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On another note, you might have noticed that commenting on this blog is not so easy. You now need to be a registered blogger user to comment. Registration is simple, free and they won't send you spam or steal your personal information. I promise. I have done this for two reasons: 1) I'm tired of the spammed comments I'm getting. I erase them pretty quickly but they are usually drug companies who have spotted key words like Viagra and Flolan. 2) I'm tired of anonymous comments. Many of you sign in as "anonymous" and then leave your name. That's not the problem. The problem is being able to leave your comment with no kind of identification. I'm not a fan.

So take the 30 seconds that it takes and sign up on blogger.com. Laura and I are encouraged through your kind comments!