you got a problem with my feet?

After a long night (no nurse last night) I decided I would treat myself to a casual day at the office. I wore a t-shirt, jeans and flip-flops. After dropping off Sophia at day-care, I got on the subway for the trek to work. I noticed a couple of people looking down at my feet.

Were they wondering what kind of job I was going to that would allow such casual dress? Were they checking out my hairy feet? Or were they trying to catch the brand of my flip-flops? We New Yorkers take our footwear very seriously.

I got off the subway and went into my office building. The elevator was quite full. I noticed that a couple of people glanced down at my feet. What's the deal?, I wondered to myself.

I finally got into my office, sat down and decided to see why it was that my feet were attracting such attention. What I found staring back at me were ten brightly painted orange toenails. Sophia thought it a good idea to paint my toenails this past weekend so I let her and then proceeded to forget they were painted.


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Happy Baby

Ira's home and he's happy about it! We've never seen Ira so happy. Sure we've gotten smiles out of him but these days there's a lot of smiling and clapping going on.



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close to home, far from home

We'll take Ira home today. In just a couple of hours, they'll sign off on him and we'll load up and go home. We'll go home with preventative measures in place like higher vent settings and a continuous antibiotic. Both of these measures are intended to keep Ira home but both have their drawbacks. At any rate, we're glad he's coming home.
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I was reminded last night at 1:37 a.m. (according to my watch) what it sounds like when a father and mother loses their child. The wailing is indescribable.

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American Idol in the hospital

Were you part of the 60plus million who voted for Taylor or Katherine? More people voted, according to Seacrest, for last night's crowning of the new American Idol than any president ever elected. Is that a sad commentary or what?

Anyway, Ira and I watched the last 30 minutes of the finale - Hey, the Yanks were playing the BoSox. You couldn't expect me to watch the whole friggin' two hour Idol, could you? - from the PICU. Yep, Ira's back in. This will probably be much like the last time around - a short stay to build Ira back up. One of the doc's put it this way, "Ira lives on the edge of being hospitalized. So any little thing will put him back in the hospital." My sister put it this way, "It's like every little germ in the whole city is floating around looking for Ira...Did someone write that kid's name and address in a bathroom stall somewhere? 'For a good time, call Ira Hays...'"

So did anyone else notice the green wristband of the cowboy, Garet Johnson, on American Idol in that segment, "Brokenote Mountain"? That wristband sure did look familiar...

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homesick

If you were to drive through Tahoka, Texas one of the following thoughts might come to mind: Who lives in this god-forsaken town? or Is this place officially recognized by the government as a town? or Only one stoplight? Your kidding, right? or The landscape of this place is flatter than... or Wow, pathetic!

Those thoughts are understandable for one who simply drives through Tahoka but if you've spent time in Tahoka then you know why those of us who live far away sometimes get homesick for it.

I particularly miss hanging out at my mom's and dad's house. They always have candy around the house and it's practically guaranteed that mom will make either popcorn balls, chocolate chip cookies, brownies, hungarian coffee cake or sugar cookies with icing. And when we do actually have meals we eat mom's specialties: chicken fried steak, fried chicken or tacos. It's understood that any fast or diet is forgotten about when visiting Tahoka. I miss mom's and dad's backyard, too. It's an oasis. I miss jumping off the roof into the pool and I miss late night dips in the hottub. I miss swinging on the porchswing looking out into the star-filled sky. I miss dad's cable. He has every channel ever dreamed of and mom's DVD collection is sure to please. When we visit Tahoka it's always relaxing.

I was so ready to leave Tahoka after I graduated high school but I now see the value in the life that people live there. You're greeted with a smile and called by name at the grocery store. (Yes, there's only one.) The entire town gets behind the high school athletic teams. It's still the kind of place where kids can play in the front yard without much supervision. Not many folks are in a hurry there.

So here I am at 32 years of age sitting in my Brooklyn apartment homesick for a tiny town in west Texas. Sound crazy? Maybe. But if you ever find yourself driving through Tahoka my mom and dad would love to have you over. But be forewarned, you'll find yourself so relaxed that you won't want to leave.

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non-existent nursing

We haven't had a day nurse in over two weeks. Laura and I haven't left the house together during those two weeks. Well, there was the day when we visited two of Ira's doctors but that hardly counts.

This past week, we had two nights without a nurse. On those nights without nurses Laura and I take shifts. One of us goes to bed at 9 or 10 while the other stays up watching Ira. We then switch around 2 a.m.

So why is our nursing so spotty? Because of Medicaid.
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When we were preparing to go home from the NICU back in October people kept warning us of how spotty in-home nursing could be. "Sometimes those nurses won't show and won't give you a call to warn you!" or "They aren't the world's greatest nurses so be forewarned!"

But this wasn't our experience at all in October and November. Our nurses were great. They were consistent and didn't call in sick. Ever.

At that time the insurace my work provides covered our nursing care. And apparently when private insurance picks up the tab on in-home nursing the pay is quite nice. Not so with Medicaid.
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When getting ready to be discharged from the PICU back in mid-April we were told our insurance denied us in-home nursing care. This was due to a policy change my workplace enacted at the beginning of the year. We began immediately filling out the paperwork for a Medicaid program for middle-income families called Care at Home.
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After waiting for the paperwork to be pushed through we started realizing the difference in having private insurance cover our in-home nursing as compared to Medicaid footing the bill. The pay is not at all the same. The nursing agencies don't make much off Medicaid patients and neither do the nurses. So the agencies don't work too hard trying to work your case and when they do actually attempt to fill your schedule, nurses would rather hold out for the cases that are covered by private insurance.
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To say the least, Laura and I stay exhausted.
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When I consider our situation I can't help but think about the millions in our country who depend on the government for aid. I can't help but feel for them as they wait for paperwork to be pushed through, as they deal with non-existent nursing day in and day out, as they deal with agencies who aren't real hip to helping because these dependants' pockets aren't lined with money.

Many will say that all of this should motivate the poor to get out of bed and get a job so they don't have to be dependant on government aid and agencies. Statistics tell us most of these folks already have jobs and aren't actually in bed but I wouldn't blame some if they were in bed, it's an exhausting life.

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Evolution of Dance

For your weekend entertainment:

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Embarrassing

A high school friend (thanks a lot, Adam) recently reminded me of one of my most embarrassing moments in life. I was on the varsity basketball team my sophomore year. We were pretty pathetic that year and more times than not, I played poorly. It was evident early on in the season that I had far to go before I was truly varsity material. One situation in particular emphasized this understanding.

It was the second half of an insignificant game. I'm not sure who we were playing but by this point in the season our coach was well aware that he was coaching for the future and not the present. Our record was well under.500.

I was a two guard but for some reason, I was bringing the ball up the court. As I passed by some middle school kids from the opposing school I heard, "EIGHT! SEVEN! SIX! FIVE! FOUR!..." I immediately freaked out and moved the ball up the court quickly. Just beyond half-court, I heaved the ball toward the basket in a desperate attempt at last second shot. It didn't come close.

Our coach called a time-out and as I walked over to the team huddle, I realized the game was in the early minutes of the third quarter. In the huddle coach screamed, "What the hell are you doing, Hays?" I pointed over at the pimple-faced middle-school kids who were laughing so hard I'm sure they were on the verge of peeing in their pants.

I was benched and to this day I could point to the very spot on the court where I heaved that ball...early in the third quarter.

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Hip Hip, Jorge!

We pulled our starting pitcher after an inning and a third. The Texas Rangers were putting up gaudy numbers. It was 9-0 going into the bottom of the second inning.

Our reliever didn't do much better. It was 10-1 going into the bottom of the third. There was a collective groan coming from the stands at Yankee Stadium.

After four innings it was 10-3. After the fifth it was 10-5. The Yankee bats finally woke up capped with a huge homerun by Jeter: it was 11-10 after six in favor of the Yanks. We fans were going wild!

But the Rangers weren't having it. They scored two in the seventh and took back the lead: 12-11. The Yanks snuck in a run in the bottom of the seventh to even it up at 12-12.

Then the top of the ninth. Enter the Sandman: Mo Rivera. Lights out, right? Wrong. The Rangers score a run on Rivera and they go up 13-12. Bottom of the ninth: Damon is walked. Jeter moves Damon over to second but is thrown out at first. A-Rod hits a strong shot to left-center but it's caught. Two outs. Jorge Posada comes up to bat. And sure enough, he hits a two-run shot that at the crack of the bat, we instantly start cheering. A walk-off homer to end the game.

And as per tradition, Frank Sinatra's rendition of New York, New York blares over the speakers. None of us in attendance want to leave. And so we hang around a bit giving each other high fives while crooning with Sinatra, Start Spreadin' the News!

There's nothing quite like getting on the 4 train with all the other Yankee faithful after a four hour offensive dual chanting "Hip Hip, Jorge! Hip Hip, Jorge!" and "Let's Go Yankees! Let's Go Yankees!"

Oh, and don't even get me started on the seats I got to enjoy. First row, third base side. On one miscue the ball scooted away from A-Rod and he was practically in my lap! Thanks to my NICU friends, Brian and Tara, I got to enjoy this incredible, historic game only feet away from the field! And of course, Ira was in attendance. Thanks, O'Connor Clan!


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Ira's scrapbook

Stacy is moving forward with Ira's scrapbook. She's made real progress as you can see from the screen shot here. Click here to see more and by the way, it's not too late to send in your pics.

As I looked at the pictures and read what people wrote, I was once again reminded of the importance of community. I was reminded that Laura and I have made it this far because of those surrounding us. I was reminded of how necessary it is to have others willing to carry you, lift you up, protect you.

The stories of how you have helped us are many: from our upstairs neighbors who watch Sophia when we need to make an emergency run to the hospital, to those of you we don't know and have never met but have given to us financially and spiritually.

Thank you, friends, for helping us over the past year. Thank you for your kind words. for your prayers. for your tangible generosity. for your willingness to follow our story and care.

I hope and pray that I will become a better person, a better minister in light of all that has happened and is happening.

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church in brooklyn

Two members from Christ's Church of Brooklyn have written on their blogs recently about their experience or their take on the church. Check out what they said.

On Wednesday morning, May 10th, Jen said:

I go to an amazing church. Or more accurately, I am a part of an amazing church. That old Church of Christ lesson about the church isn't the building, you know, it's hardwired in at this point. It certainly isn't the building that makes this church what it is, although there's a certain grungy style to meeting in a barren, concrete-floored former workout room at the YWCA. It's what happens there every Sunday that makes this church what it is, and what that makes possible for the rest of the week for all of us when we leave and go back home to neighborhoods in Brooklyn, Manhattan, New Jersey, wherever.

I've been grateful for this church for a long time, but every so often something amazing happens that functions as a new reminder that church isn't just something we do because we're in the habit, or because we happen to like the people we get together with, but because there's something life-changing, transformative, about it. These little epiphanies are few and far between and spontaneous and maybe don't get noticed by everybody, but Sunday night, there it was. A little glimpse of God in the middle of a circle of plastic chairs in a barren concrete-floored room, as one friend revealed a need and the response was immediate: we will take care of you, if you need us. That's what we are. The church.

I would love to say more, but I was just there, observing an amazing moment between people as they became Christ to each other, saying amen. Just a witness to a presence that was suddenly more than the sum of those visible.

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On Sunday night, May 14th, Kristen wrote:

Church tonight was great. As I write this, I am still trying to think of a more appropriate adjective for church tonight, and I just can't do it. Tonight affirmed to me 1) why Christ loves the church body 2) why I need the church body 3) why I chose Christ's Church for Brooklyn in particular. I can't believe the way this strange mix of folks get their hands dirty in the lives of their fellow church members. They're not afraid of your problems; bring them on. Go into uncomfortable detail; you won't shock this bunch. There will be no gasping, no uneasy avoiding of eye contact. Over the course of class time and worship, there's a lot of shifting of burdens and relieving of pressure, and the church walks out liberated of old weight and carrying new weight. And new weightiness - the weight that was formerly oppressing your brother or sister - feels a lot different from your own "me-me-me" worries. It's bearable and almost welcome.

I love church.

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Happy Mother's Day, Laura

It was last Mother's Day that Laura got to hold Ira for the first time ever. Sophia and I were at church in Manhattan and when we went over to the hospital Laura was glowing. A veteran nurse thought it was ridiculous that Laura sit by Ira's bedside the entire day without getting to hold him. So for ten minutes, Laura got to hold Ira. It made her day.
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At Laura's surprise birthday party a couple of months ago, many people said incredible things about her. They spoke of her quiet strength, her authenticity, her unbiased love for all, her servanthood. I spoke of how I couldn't have done the past year without her. I know Sophia and Ira feel the same about her. Happy Mother's Day, Laura. Our family is blessed to have you.
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How well do you really know Laura? At her b-day party, I gave this quiz. You are welcome to test your Laura knowledge by clicking on this link. Good luck!

home again

Ira started feeling better Thursday morning. He was smiling and clapping for any and every one. It was evident at that point that unless there was some lurking virus in the nearby room that swooped in under the door and made its way up Ira's crib and into his trach that we would go home sooner rather than later. The doc gave us the hopeful word later Thursday morning: We'll get you out of here on Saturday morning. I wanted to come home and blog about it but I knew better. I kept my mouth shut. And sure enough, we brought the boy home this morning. Once again, it's good to have him home.
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I imagine that this kind of thing will be routine for Ira. That we'll fight sicknesses for as long as we can here at home but will concede when Ira starts showing signs of respiratory distress. And at that point, we'll take him to the hospital where he can get an IV and a bit more respiratory help. These kind of hospital stays seem manageable.
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We did this hospital stay without our moms around. I know both my mom and Laura's mom had bags packed and were ready to make their way up here if need be but we were pretty optimistic about Ira's return home so we told them to stay put. I would be lying if I said it wasn't a big deal to do this on our own because it certainly was. Laura and I put in 24 hour shifts at the hospital and then switched to care for Sophia. We're pretty wiped out and realize how valuable having our moms around was to us.

Mom, Kay, if we ever took you guys for granted I'm so very sorry. You both helped out so very much over the past five months. We couldn't have done it without you. We love you both and are blessed to have you as our moms!

HAPPY MOTHER'S DAY, GLO AND KAY

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again and again and again

I'm writing from the PICU. We brought Ira to the hospital on Tuesday night due to an increase in respiratory distress. Ira's been sick for the past week but it hadn't affected his respirations until Tuesday. We're hoping it's a low-grade pneumonia that can be treated quickly. Hopefully we're talking days rather than months.

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Psalm 23

My sermon on Sunday was inspired by Psalm 23. It's nothing profound. You won't find any hidden truths revealed. Just a reiteration of promises that are often taken for granted.
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There was a time in my early adulthood that upon seeing a family with a special needs child I would look upon them sympathetically and say something like, "That mom and dad must be special people to be able to handle that child's needs." And in realizing my own selfishness and weaknesses I would continue on with my wanderings with this confession, "I'm pretty sure I'm not cut out for that kind of parenting. I could not be that kind of dad." And in keeping a fairly safe distance from the family so as not to get any of their good parenting stuff smeared on me for fear that I might somehow then be obliged to parent a child like theirs, I would utter some kind of blessing, "God bless them"...at a safe distance, of course.

I've learned a lot over the last year and a half. It's been confirmed that I am, in fact, extremely selfish and that I do have many weaknesses that daily thwart my attempt at parenting Sophia and especially, Ira.

And because of these weaknesses and because of this selfishness, I constantly feel overwhelmed. I stay in a state of stress these days.

It was a rare night on Thursday. Both kids were asleep. Ira's 8 PM meds were given. There was more work to be done: water to be boiled, syringes to be washed, countertops to be wiped down with disinfectant spray but Laura and I found ourselves wiped out on our bed. As we lay there waiting for the next burst of energy or waiting for our 11 PM nurse to come -- whichever came first -- we just stared at the ceiling. We didn't have the energy to talk but finally Laura mustered just enough to ask the following: Do you ever feel like the weight of all this is too much? that it's caving in around you? that it's going to swallow you whole? I shook my head yes and we continued staring at the ceiling.

I want so badly for this not to be the case. I want so badly to be free of stress. I don't want to be overwhelmed. We are in a season of Easter, for God's sake. Jesus lives. Ira is at home. Sophia, in spite of acting out a little, is doing pretty good considering the circumstances. Our moms have been incredible and generous with their time. We've been given much. I want to be a parent who blogs about the joy of having a special needs child. I want to be like the mom who I met in the PICU right before we left who said about her 12 year old daughter who's been disabled her entire life and in and out of ICUs her entire life, "She's the best thing to ever happen to our family."

On my good days, when I'm able to look outside myself and take a closer look at what's going on in the world, when I'm able to listen to what's happening in this nation, when I'm able to focus in on the issues of this city, when I'm able to concentrate on this church family, I realize that you too are feeling overwhelmed; that you too are feeling stressed. Not all of you. Some of you are a in a good place right now but as I'm coming to know you all better, I'm realizing that you too are feeling the weight of the world crashing down on you and that you too feel that it's unbearable and that you too feel like it will swallow you whole.

Today's lectionary text, Psalm 23, came at the right time for me this week. I come to church to hear texts like Psalm 23. I come to church to be reminded of the promise that God is my shepherd and that he gives me everything I need. I come to church to hear that he will lead me beside still waters and that he will restore my soul. I come to church to hear that dark valleys are indeed a part of the journey but that we can rest assured with the truth that we are not alone, that He is with us. I come to church to hear that I will be comforted in this dark valley. I come to church to hear that goodness and mercy is on its way and that some day I will dwell in God's house forevermore.

Let's read Psalm 23 again, together and let's read it like it's true for it is, church. It is true.

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What it takes

We got Ira out of the house this past Thursday. I've mentioned that it's quite a task to do so. Here's a run down of what Ira must have when we take a walk around the block:

1. His vent machine
2. A battery the size and weight of a car battery that powers the vent
3. An oxygen tank
4. A nose (a device added to the tubing that works as a filter)
5. Suction machine and sterile suction supplies
6. A diaper bag

There is the usual stuff in the diaper bag but there is also an extra trach, trach ties, sterile gloves, and our list of important telephone numbers.

And this is for a walk around the block. If we go to an appointment with one of Ira's docs, Ira will need to eat. We'll also have to take his feeding pump, food, meds to be given and back-up g-tube stuff.

It's a bit stressful and when you're walking down the street and the vent starts beeping warning you that the "pressure is low" it becomes a bit more stressful. But Ira is worth the stress, no?

While Ira's not too sure about the outside world we know that it's good for him and it's good for us too.

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Noah Allen Whaley

Noah Allen Whaley was born a year ago today. He passed away eight days later. The Whaley family, in memory of Noah, provided those green Ira Lester Hays wristbands that many of you wear. Today, Julie posted over at her blog reflecting on Noah's birth. Please, go over and read it.

Rest in peace, sweet Noah.

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Back in the Saddle

For over a year, my bike's been sitting unused in one of the offices at Manhattan Church. I finally found time yesterday after our staff meeting to ride it back into Brooklyn. It's quite a trek going from the Upper East Side (80th and Madison) to Boerum Hill in Brooklyn but it's absolutely worth the 45 minutes. I don't take the FDR as the map link suggests but instead I ride through Midtown, Murray Hill, East Village, Little Italy, Chinatown, and touch the tip of the Financial District before heading over the Brooklyn Bridge. I see all sorts of things, all sorts of people. I absolutely enjoy the ride. Riding is a great way to get to know NYC.

I've been known to play a game while riding. I attempt to make it all the way from Manhattan to Brooklyn without touching the ground with my feet. In other words, I try not to ever stop. When I was riding two and three times a week during the summer of 2004 I got pretty good at it. I never was able to accomplish the feat in its entirety but I came pretty darn close once. I made it all the way over the Brooklyn Bridge and finally had to stop at the busy intersection of Tillary St. and Brooklyn Bridge Blvd. Yesterday, I touched four or five times.

I'm pretty excited about the new feature I'm adding to my bike. It's a trailer bike. Sophia's a bit too big for a seat on the back of the bike so the neighborhood bike shop guy suggested a trailer bike like the one in this picture. Even though Sophia's a bit on the young side for a trailer bike she's a quick learner and the bike shop guy (I'm sure he has a name) said that he sees three-year-olds riding trailer bikes all the time. So, we're gonna give it a go and if she doesn't like it then I'll wait until next summer and we'll give it another go.

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