Monday, July 31, 2006

Get Out Your Needles because Life is Not Fair

From the pen of Laura. Written in May 2006.

I still have the knit cap my daughter wore her first couple days of life in the hospital. I keep it because of the memories it conjures up of new beginnings.

My son, however, never had the chance to need one of those little caps as he was whisked away by the doctors immediately upon his entry into this world. We knew Ira was going to have to fight for his life. At our 19 week sonogram the sonographer discovered a hole in his diaphragm. He was diagnosed with a Congenital Diaphragmatic Hernia. Ira's hernia was so severe that his liver, stomach, and some intestines were up in his chest crowding out his lungs. His lungs had no room to develop and so were not able to sustain him after his birth. He was put on a succession of ventilators none of which were able to give him enough support. On his second day of life, as a last resort, he was put on a heart-lung machine called ECMO. All of his blood was systematically drained from his body and oxygenated by this machine. The technology and the skill required of the doctors to sustain him were incomprehensible.

Even with all the technology and skill, Ira spent 10 of his first 12 months in the hospital. Although Ira is alive, there are many things I've mourned over the course of the last year. I mourned the fact that he was never able to nurse. I mourned never carrying him around in a sling, snuggled close to my body. I mourned for my three-year-old daughter who wanted her baby brother home so she could play with him and show him her toys. I mourned the chance to show him off to anyone and everyone, as every mother loves to do. So many times I looked around in self-pity and thought life is not fair.

And there are things I continue to mourn today. I mourn for my family because we cannot go places all together due to Ira's fragility. I mourn that he cannot make noise when he cries because of his tracheotomoy. I mourn that he is one and still cannot sit up on his own. Again the thought life is not fair.

I want to scream, life is not fair when I see families headed off to the beach or to the baseball game. When I hear of families taking vacations or road trips together, the words ring in my ear.

The other day my husband was going to take our daughter to the park and to get ice cream. Sophia looked up at me and asked if I could go too. I calmly explained that someone had to stay at home with her brother but in my head I was whining about the unfairness of it all.

Recently, though, the phrase life is not fair has taken on a whole new meaning for me. I came across an article describing the plight of babies across the ocean and was beside myself. I learned that hundreds of thousands of babies are dying due to lack of sterile blades and cheap vaccines. They are dying because the knit cap we take for granted here in the U.S. to keep babies warm is an anomaly in some countries. Babies are dying from diarrhea and pneumonia -- sicknesses that could be easily remedied or avoided with simple vaccinations and tetanus shots. All of a sudden my exclamation of self-pity was turned into a proclamation of injustice. Life is not fair!

When I think about the time, expense, and skill required to keep my son alive there seems to be a complete disconnect between these two real-life situations. How can so much be afforded my son while another's child is lost so unjustifiably? How can one baby be granted hundreds of thousands of dollars worth of care while another life is denied a 15 cent measles shot?

This winter as I sat by my son's side in the PICU a close friend taught me how to knit. The hope was I would have something to occupy my mind as we waited for Ira to heal. This year my new skill will be put to use. I plan to join with thousands of fellow knitters around the country in Caps to the Capital - an initiative aiming to remind America's leaders that simple solutions can save millions of lives. I will knit baby caps and send them to Washington.

As a mother of a chronically ill child, I am daily faced with the reality that my son could die sooner rather than later. And as much as I try to live positively with that reality, there is nothing easy about the thought of losing him. The death of a child, regardless of whether the time spent on earth is measured in days or years, in this country or across the sea, is a loss from which one can never fully recover.

Today, as I hold my son and rock him to sleep, I will be thankful for the fact that he is alive. Although his life will continue to be supported by a machine I will be thankful for the heart that still beats and the lungs that are trying to grow. When I am tempted to think that life is not fair, I will remember that it most definitely is not.


Friday, July 28, 2006

Meet Joey

While my sister, brother-in-law and their son had several foster children come through their home, it was Joey who stole their hearts with his warmth, energy and smile. Joey's familial story is tragic and so it wasn't long before my sister's family started dreaming about adopting Joey.

It's been a long road and Joey's been a part of our family since the first day but on Friday, July 21, he legally joined our family.

I'm sure my sister and brother-in-law anxiously anticipate the day Joey starts asking questions about his biological family but for the moment, they (and we) are on top of the world!

Jackie, Ryan and Isaac, congrats! Joey, welcome!


Wednesday, July 26, 2006

Have You Seen Clerks or Clerks II?

I have not seen Clerks or the new sequel, Clerks II, but I did hear writer-director, Kevin Smith, interviewed by Steve Inskeep on NPR. At one point, Inskeep notes that in many of Smith's movies, two themes can be found - comics and God. Smith replies, "Yeah, I'm a big fan of both, actually."

From what I understand, Clerks is about a couple of guys who work in a convenience store. In Clerks II, the guys make a parallel move from working in a convenience store to working in a fastfood joint. Inskeep makes a comment about the possibility of a Clerks III and how "sad" it would be if these same guys were still working in a meaningless, minimum-wage job. That's when Smith gives Inskeep and all those listening a life lesson: being or living is not about your job, how much you make or what title you have. He makes his point effortless and from Inskeep's silence, the hearer can tell that Bible class is in session. Listen for yourself. It's only a seven minute interview. You won't be disappointed.


Monday, July 24, 2006

Bush and Me

So George W and I have something in common.

A week ago today, W, while speaking to Tony Blair, used a cuss word to emphasize his true feelings on the state of things in the Middle East. It's not the first time Bush has been caught using foul language. If Bush had a blog and defended his timely use of cuss words on the blog, would he generate 60plus comments? With the world in the shape it's in, Bush should be cussing a lot more!

The article linked notes that the reaction to Bush's dropping of the s-bomb has been fairly mild. It goes on to say that if the president were a Democrat, the reaction would be much more severe. Agree? Disagree?


Wednesday, July 19, 2006

The Cycle

This is how it goes down for us when Ira starts showing signs that he's sick. This takes place over several days.

Ira starts throwing up a little. We cross our fingers that it doesn't get worse.
It does. Throw up everywhere. All the time. Non-stop. So we wait it out.
But it doesn't get better.
Call doc for the first time. "Watch him," she says.
Dehydration settles in. Lips chapped. Ashy skin.
We keep a close eye on his heartrate, frequency of breaths and oxygenation. (We have machines that monitor this stuff.)
The heartrate goes up. High 170s. Then 180s. Then 190s. It's a slow climb. Over a couple of days.
We watch Ira.
Breathing harder. Nose flaring. Chest and abdomen pulling.
Ira's working hard.
You and me? We breathe effortlessly. Not Ira. Not now. It's a workout for him.
He's sweating.
Go see pediatrician.
Eyes swollen. Blue around the eyes.
Oxygenation not great. Mid 80s.
"Go to the hospital," she says.
We go.
Chest x-rays, blood tests, urine sample, trach culture. You name it.
Wait all day in the emergency room.
Hours upon hours.
Tests slowly come back in.
"Here's a steroid and antibiotic," the doc says. "Keep an eye on him."
With the first dose of 'roid and antibiotic, Ira shows signs of feeling better.
Back at home late at night after long day at hospital.
Tired. Everyone's tired.


Sunday, July 16, 2006

Hell Froze Over!

Our friend, Jonathan - you can find out more about him here or here - returned from Vegas not long ago after having performed the lead role of Princeton/Rod in Avenue Q at the Wynn Las Vegas. Word was that Jonathan was so good that it was a matter of time before the Broadway production of Q called on him. Sure enough, they did. Jonathan is currently the understudy of Princeton/Rod on Broadway.

He wrote Laura and me an e-mail last week saying, "I'm going on as Princeton/Rod this coming weekend and would love for you guys to come see it. The tickets are on Holly and me!" As I read the e-mail the excitement I suddenly felt was soon squelched by reality. Hell will freeze over before Laura and I ever get to go out again! I thought to myself.

Well, it must be really cold in hell.

After having gone for almost two months of not getting out of the house with my wife, it happened Saturday night. We asked our night nurse who usually comes at 11 PM to come at 6 PM instead. He gladly said yes. We then asked our good friends, the Brookses, if they would keep Sophia for the night. They were more than willing. Everything was in place.

Off we went to Times Square. Normally, Times Square on a Saturday night is not my idea of fun but we were there to see our friend perform the lead in Avenue Q and nothing - not even rude tourists who think they own the city - was going to deter Laura and me from having a fun night.

We stopped off at Ollie's for a quick bite and then we were off to see Avenue Q. Laura and I haven't laughed that hard in a very, very long time. Songs like What Do You Do with a B.A. in English and Everyone's a Little Bit Racist and Shadenfreude and I Wish I Could Go Back to College had Laura and me rolling! And there are no words to describe how ridiculously good Jonathan is up on stage. People, listen up, remember this name: Jonathan Root. If the dude was a business I would tell you to invest. Stooopid good!

After the show, we waited for Jonathan at the stage door (yes, we felt like groupies) and went out for drinks with him. Laura and I peppered him with silly questions about what it's like being on Broadway and he played along answering any and all questions.

The night was incredible. This post doesn't sum up very well how good it was to be out of the house. Together. With no kids. Thank you, Jonathan and Holly!

Maybe the finale of Avenue Q sums up our night...and our life. It's a song titled For Now and toward the end of the song, the lyrics are as follows:

Nothing lasts,
Life goes on,
Full of surprises.
You'll be faced with problems of all shapes and sizes.
You're going to have to make a few compromises...For now...
For now...
But only for now! (For now)
Only for now! (For now)
Only for now! (For now)
Only for now!


Thursday, July 13, 2006

Mets or you even care?

acombs commented the other day and left me with some baseball questions concerning the Mets and the Yankees. Because I'm such a nice guy who likes to give everyone a chance to submit their two cents, I asked my upstairs neighbor, buddy and lifelong Mets fan (bless his heart), Bryan, to answer acombs's questions:

acombs writes: "Can you answer a couple of new york baseball questions? Since the mets and the yanks are doing so well, is there an obvious rivalry around town? When they are playing teams from other cities would a mets fan root for a yankee win if the yankees were playing say the cubs? Mind you I don't know a ton about baseball and leagues and stuff...for all I know it's not possible for the cubs to play the yankees. I tend to just root for teams that my husband likes, or avid followers that I know. So, you have made me a yankee fan and listening to Regis talk of notre dame and the yankees makes me want them to do well. I guess I'm easily swayed."

Bryan - my Mets lovin', upstairs neighbor - replies: "As a Mets fan, it is definitely not okay to root for the Yankees, no matter who the opponent. I don't care if they are playing a team from Mars - rooting for the Yankees is treason. An offense so horrid that one should be punished by being forced to watch countless hours of the The View (with Starr Jones) or (YIKES!) For News. (My apologies to any Fox News viewers out there.)

The difference between Mets fans and Yankees fans is as different as night and day. Mets fans are a bit more "working-class." We generally reside or grew up in Brooklyn, Queens or Long Island. We've tasted World Series victory just twice in our 44 year history, but those were some of the most memorable World Series on record. The Mets are 2nd-class citizens here in New York, constantly fighting for back-page space with our cross-town rivals. Mets fans fight for respect and thankfully, are finally getting it (We're in first place!) Which brings me to the Yankees, who are not in 1st place might I add.

Yankees fans are generally from North and West of New York City (i.e. the Bronx, Westchester, New Jersey). Rooting for the Yankees is easy. They are the team with all of the money (their payroll is over $200MM, the next closest payroll is around $110MM) and all of the history (26 World Series titles). They are "America's Team" with celebrity fans, fans from all over the country and the world (many of them just recently became fans in the last 10 years might I add as the Yankees have enjoyed great success. Mets fans call these people "bandwagon fans"). They are however, as the owner of the Red Sox called them, the "evil empire." They are all about winning, which although I agree with, requires the sacrifice of "fun." You rarely see Yankees players smiling. There is no music allowed in the clubhouse (locker room) and facial hair (even long hair) is forbidden. It's all business with the Yankees.

So, I ask you novice baseball fans out there, who would you rather support- the rich and overpaid, serious squad with years of history or that feisty bunch of upstarts that plays with heart and passion? Would you rather see the rich get richer or would you rather see that other team from New York bring home a championship for the first time in 20 years? In other words do you support good or evil? To sum up...LET'S GO METS!"


Tuesday, July 11, 2006

Calling All Soccer Moms

So we're giving our VW Passat back to the dealership in August. We were leasing it and its time has come. (Please, no lectures on the stupidity of leasing. We learned our lesson!) While Laura and I would love to go without a car in the city (most people do go without) we just can't. Ira demands the finest of traveling luxuries. There will be no stinkin' A train for him. No M79 bus is good enough for our Ira. Okay, I'm just kidding. It's just that Ira isn't mobile in that kind of way. And so a car is needed.

Laura and I have always said that our next car purchase would be one that is less harmful on the environment. A car that gets really good gas mileage or a hybrid maybe. But, alas, we are foiled again. We learned quickly that there is a reason why families with special needs children have big cars. The equipment overwhelms a sedan. And so Laura and I are on the look-out for a minivan.

But not just any minivan. I did the research. I read Consumer Reports and it boils down to either the Honda Odyssey (top left picture) or the Toyota Sienna (top right picture). These cars, year after year, get the best overall ratings. And so I'm calling on all soccer moms of suburbia to help me out: Of the two minivans in question, which is best? (I reserve the right to delete any comments making fun of me driving a minivan around Brooklyn. I'm fully aware that this is the last straw; that this does indeed mean that I forfeit whatever coolness was left lurking around my presence.)

And by the way, anyone out there know of a reputable dealership that gives good deals?


Monday, July 10, 2006

An Oasis

My friend, Stacy, and her family went on a trip from D/FW to Colorado. They stopped in Tahoka to see my parents. Stacy writes about their adventures in Tahoka over at her blog. Check it out!


Sunday, July 09, 2006

Matt's the Man

Our son was born without a diaphragm. He breathes through a circuit that hangs out of his throat and eats through a tube in his stomach. And the only thing on Laura's and my mind this week was, "Ira needs a haircut!"

Laura told Amy (minister at Manhattan Church) about Ira's out-of-control hair dilemma. It's not like you can just take Ira to the local barber shop. That's when Amy volunteered her husband, Matt. "Matt cuts our boys' hair!"

And so Corporate Lawyer Matt came over on Saturday and cut Ira's hair. As if being a hot-shot attorney isn't enough evidence that Matt's talented, he did a bang-up job on Ira's hair and did so gently and carefully. You see, Ira's very distrustful of people who start to "handle" him. He gets nervous, anxious, frustrated, scared. But Matt took his time. He stopped repeatedly to show Ira the comb and scissors and used a gentle voice as he assured Ira over and over that it was a simple thing he was doing. And Ira let him. And Ira looks great.

Matt, dude, kiss law goodbye and join the nearest Supercuts team. I hear they're hiring!


Thursday, July 06, 2006

You must read this!

I've finally done a little work on my sidebar.

Within the past two months people have handed me five different books and said something along the lines of, "You must read this!" Okay, so none of the friends were actually that pushy and the Nick Hornby book came with an indifferent recommendation but still... The five books sit by my bed on my nightstand as a reminder that I have some serious reading ahead of me.

But for some reason I can't garner the desire to sit down and engage in a good novel. I tried starting a couple of these books and while they interest me I just haven't found the energy to keep on.

Besides those of you who lent me the books, have any of you read these titles? Where should I start? (Click on the front cover of the book to see title.)


Wednesday, July 05, 2006


Oh how I miss the South.

In Memphis, TN Lady Liberty is born again. But this Lady Liberty holds the Ten Commandments in her hand, a large gold cross in the other and "Jehovah" is inscribed on her crown. There's a single tear falling down her face. It measures 72 feet tall from base to tip.

The statue stands in front of a 12,000 member church. The church has a school, roller rink, bookstore and bowling alley. The statue cost $260,000.