CDH Awareness Day

I'm not generally a cheerleader for individual medical causes....I'm not sure why a disease becomes more important the second a celebrity (or any individual) happens to be diagnosed. I'd obviously prefer that we have enough federal funding for all research so that disease advocacy groups don't need to fight over limited donation dollars. I don't want to get political, but I happen to know of half a trillion dollars that have recently been spent on a debacle in the Middle East....perhaps that could have cured a few diseases instead....but I digress.

Here's where I go against everything I just said and become a cheerleader for an individual medical cause that has affected me....I'll try to keep the rah-rah to a minimum. From a "cure" perspective, there's definitely a difference between Andrew's condition and many of the other fatal and semi-fatal diseases that are out there. Though there are certainly research dollars that need to be spent investigating the best way to deal with symptoms....pulmonary hypertension, lung hypoplasia, digestive malformations, ventilator dependence....the most important part doesn't have to cost that much money. With a disease like CDH (Congenital Diaphragmatic Hernia), the critical step is awareness. One in 2500 is more than you would think, and there are some very specific ultrasound measurements that can detect it as early as 18 weeks.....yet up to 50% of children aren't diagnosed in utero.

Today, March 31, has been designated Congenital Diaphragmatic Hernia Awareness Day. CDH parents have written to governors and other politicians all over the country, and this commemoration has been made official in 22 states, five cities, and at least one foreign country (Mexico). I'm not going to ask for donations or tell everyone to wear a turquoise ribbon....just consider yourselves aware. I know Andrew had an impact on a lot of lives, and hopefully we've educated our small corner of the universe. You can bet that our pregnant friends are going to be asking their ultrasound technicians to look for a strong diaphragm and healthy lungs.

This is probably not following the CDH Awareness Day script, but here's how I'd like you to "celebrate" today:

1. Think of cute little Andrew an extra time today.
2. The next time someone tells you they're pregnant, tell them to get a very thorough sonogram that will be reviewed by an entirely-engaged radiologist.
3. Think about ways we can better prioritize our federal budget, so that none of these diseases slip through the cracks.
4. Vote with the candidate (or party) that will bring federal dollars back to medical and technological research.
   

Long Overdue Update

Wow, I didn't realize quite how long it had been since my last post. It's been a busy two weeks, and I'm only conscious now because I got a lot of sleep last night. Last week I was in Austin, TX for a couple of days and then spent all day Friday with a customer here in San Diego. In between, I tried to fit in as much work on the book as possible, but got an incredibly small amount of sleep. The week before, I was in Kansas City; I had never been there before, so it was a nice experience. Unfortunately, I again had to spend every free second working on the book, so I didn't get to explore too much.

When I used to have to take longer business trips, back in 2005, I made sure to see the local sights, try some of the local food, and generally make the trip as fun as possible. I was only in Kansas City and Austin for two days each, but it was my first time in both places, so I at least wanted to try some yummy food. Kansas City is known for its barbecue, so I did some research and came up with a local barbecue place that had rave reviews and was known for having some of the spiciest barbecue sauce around: LC's Barbecue. The people in front of me in line had seen it on FoodTV, and I found it on RoadFood.com; I took the website's advice and got the "burnt ends" with fries and baked beans. I learned a whole new barbecue vocabulary in my short time there, and would definitely recommend it.

In Austin, my hotel was right next to a Cajun Seafood restaurant called Pappadeaux's. I talked to a local colleague about it and realized it was a chain of restaurants owned by a Greek family, and that they also had chains of Mexican, BBQ, Steak, and burger restaurants.....pretty much everything but Greek. Even as a chain, I had heard great things, so I tried it out. The restaurant was packed and everyone seemed to be having the "Crawfish Catch" special. I wasn't quite ready to work that hard (digging the meat out of over a pound of crawfish), and ended up with the "Pontchartrain Panbroiled Fish Fillet Topped with crabmeat & shrimp in a brown-butter wine sauce with dirty rice." It was fantastic, and to make up for turning down something as down-home as crawfish, I also ordered the Fried Alligator appetizer. It was very good, and though I expected it to "taste like chicken," it was actually more tender and flavorful than any chicken I've ever had.....yummy!

After my culinary adventure, I later learned that the owners of Pappadeaux's, the Pappas family, does have a Greek restaurant. It's called Yia Yia Mary's, and it's in Houston. For those of you that didn't immediately shout, "No Way!!!!," my Greek great-grandmother's name was Mary, and I called her Yia Yia (Grandmother) Mary all my life. It was such an amazing coincidence that I will absolutely have to go there if I ever visit Houston, even if I have to drive all the way across the city.

In between trips to the middle of the country, I went on our annual visit to Las Vegas for the first weekend of March Madness, with my dad and a bunch of friends. Though I flew home a big loser overall (as expected), I had a lot of fun. Next year I'll be trying the dartboard approach to picking winning basketball teams, since it couldn't be any less effective than actually trying to choose teams based on my incredibly poor knowledge of college teams. Or I just have to focus my attention on the ridiculous Wheel of Fortune quarter slots, where last year I found $200 in chips and this year I walked away a winner almost every time I sat down. Say it with me.....Wheel! Of! Fortune!

We also had a great Easter, where I came away more of a winner than I had in Vegas....I found $20 in an Easter egg. It was great to have a fantastic (home-cooked) dinner and see lots of family, in between very impersonal trips to random business locations. It did, however, make for a long string of being away from home. Sunday-Tuesday in Kansas City, Wednesday-Saturday in Vegas, Sunday in Orange County, Monday-Wednesday in Austin. It's stretches like that that really make you miss your bed (and your wife!).

D's doing well and having a good time with softball. They won in the bottom of the seventh last week with a walk-off homerun against a really good local rival. They have two to four games a week, with practices every other weekday. She's at school right now (on Saturday), preparing the school newspaper for publication....it's a tradition that happens every six weeks during the school year. Today, the students had more of their pages done prior to arrival than ever before, so hopefully they'll be done in record time....they're usually at school from 8 in the morning until 7-9pm. I often join them to help edit pages, and might go in later if they're having trouble, but I was able to read a bunch of them last night and edit from the comfort of our couch.

I (surprise, surprise!) have more book stuff to do this weekend as well. It somehow feels like even though there are four other authors, I'm doing just as much work as if I had done the whole thing myself. Every week or two, each of us has a chapter due. Then we share them with each other, and every person reads, corrects, and comments on every other chapter. Then we incorporate all the changes/suggestions that everyone made on our own chapters, and distribute a "Version 2." We go through the whole thing all over again (review, revision) until we have a somewhat official version 3. Then we have to submit that version to the publisher, who has their own reviewers and editors look at every chapter. I'm close to version 2 on my first chapter, I've reviewed all the other first chapters, and I've reviewed version 2 of one person's chapter. This weekend I have to finish V2, review some others, and start my second chapter. I'm tired again just thinking about it.

Last note....on Monday we get to go see one of our favorite musical artists, Jason Mraz, in a private concert on the roof of a swanky hotel in downtown San Diego. I won tickets from a radio station contest, and I'm really looking forward to it. The concert is right before the Padres' opening night in Petco Park, which is only a block from the hotel. Unfortunately we don't have tickets to the game, but we are going to see the Padres get beat by the Dodgers next weekend. I'm looking forward to it!

Rough Week

It's been a (physically) difficult week. D was sick last week, and I managed to catch it by last weekend. The symptoms started with a sore throat, which eventually got worse and added a painful cough/headache combination. To make things worse, I had to leave the house at 5:45 am on Monday and Tuesday, for all-day trips to Salt Lake City and Sacramento. Having gone to bed between 2 and 3am each day and not slept well due to coughing and wheezing, the trips were exhausting. I spent most of Wednesday on the phone and Thursday in Mountain View, and I still haven't caught up on sleep. Friday is another phone day, then I have to spend the weekend writing a chapter for my book project. Everything becomes much less fun when it feels like you're swallowing fire.

D dealt with all the side effects of sickness last week, and was also busy with softball. I went to their game on Saturday and watched them win a hard-fought contest against a very competitive school. On Sunday we went to Sea World, and we've been spending this week seeing each other whenever we could find the time. Next week I'm in Kansas and Las Vegas, so our schedules aren't clearing up any time soon.

I know there are worse problems to have, but I'm so exhausted that everything seems just a little more overwhelming than usual. For instance, I have to wrap this up before I fall asleep sitting up. G'night!

Work News

After a couple of reflective and not entirely happy posts, I thought I'd break the ice with some good news....I'm writing a book! Unfortunately it's not a book about Andrew and/or dealing with CDH. More unfortunately, it's likely that none of you will ever read it. If you do happen to read it, I love you (and I apologize).

Myself and four of my coworkers are writing the IBM WebSphere DataPower SOA Appliance Handbook. I know it's a mouthful, but the product I work with (DataPower) is an "SOA Appliance," purchased in 2005 by IBM and put into the WebSphere brand. Like I said, a mouthful. It will definitely be a technical book, tailored to users of the product that prefer a more conversational tone to their documentation.

It's never going to by a NY Times Bestseller, nor will it be much of a moneymaker for me personally. It will, however, add to my credibility in the industry and hopefully assist in the sales process. It will also be nice to be able to say that when it comes to DataPower, "I wrote the book."

On the negative side, it's going to be a ridiculous amount of work for very little up-front payoff. The tentative publication date is sometime in October, but our writing has to be done by June. That means I need to write a chapter or two every few weeks. Thus, any free time I have will likely be dedicated to writing. That said, I'm excited and can't wait for October.

A Case for Exhaustive Photography

I have almost 450 videos and 2500 pictures of Andrew, including 120 pictures from this day alone. And yet every time I look through my files, I wish I had taken more. I wish I had 1000 from this day, because it's one of my favorite ways to remember him. I wish I had hundreds of thousands. Heck, I wish I had five months worth of constant high definition video.

I think this is why I love photography....because you can capture a moment that can never be retrieved. Obviously not everyone has issues like we did with Andrew, but it's still just as important. Your kid/dog/grandmother/sister is only going to look exactly like that once; if you don't record it, you may have to rely on fuzzy memories later. The only difference is that we can't go into the nursery and update those memories with a current view.

Even if there's not a person in the picture, your memory of a time and place can still be triggered by a picture. There are tourist destinations I've been to a few times (Paris, Venice, Athens, Rome), but the pictures from each trip evoke entirely different memories, even if they're of the same monuments. Even if you're never going to print/post/frame/hang the picture, just taking it then looking at it yourself later is worth the effort. Trust me. Every time I stumble across the picture above, it's worth it.

Focusing on Work

Work is starting to get pretty crazy for both of us, and it shows no signs of slowing. I spent last week being bombarded from all angles, working late into the night and then getting up for early phone calls. I headed to Utah (Salt Lake City) on Tuesday night and was supposed to be there Wednesday and Thursday. Fortunately, we wrapped up all our meetings and got to fly home late Wednesday night. In theory, that meant I had an "extra" day on Thursday; in reality, that meant I quickly found "extra" work to do. Next week I'll be in Chicago for a few days, prior to which I have to do a significant amount of prep work. I also have to prep for the week after, when I'll be back in Salt Lake City and then in Sacramento on back-to-back days.

D is busy too, as softball season officially started during President's Day weekend. She usually coaches the Freshman-Sophomore team, but this year there weren't enough girls to field three full teams (Junior Varsity and Varsity being the others). So this year D is an assistant coach for the JV team, which means more games, more practicing, and a bit more pressure. She has to be at practice every day, which means driving to campus on the days she's not working....I don't think she's been home before 6pm in the last week. It also bites into weekends. There was a fundraiser activity at school today, and the next several weekends are taken up by tournaments. Last weekend we were both at school, helping to edit/approve the newspaper, for which D is the faculty adviser.

So, we're definitely keeping busy. I suppose that's good, as it gives us less time for sitting around and missing what we don't have. Still, I've been a little emotional recently and I find myself crying at completely random things...from home videos to pictures to TV shows to music to political videos (I said it was random). I just heard the most recent offender for the first time on the radio tonight.....a song called Teardrops on my Guitar, by Taylor Swift. D warned me that I shouldn't listen to it, but I hadn't heard it before and didn't have any idea what it's about. For the most part, it's a sappy teenage love song, lamenting the fact that her crush (who happens to be named Drew) isn't paying any attention to her. Naming coincidence aside, it takes a personal turn about two and a half minutes in, where it finishes with the following lyrics:

So I drive home alone, as I turn out the light,
I'll put his picture down and maybe get some sleep tonight...

Cause he's the reason for the teardrops on my guitar,
The only one who's got enough of me to break my heart,
He's the song in the car I keep singing, don't know why I do...

He's the time taken up, but there's never enough,
And he's all that I need to fall into..

Drew looks at me, I fake a smile so he won't see...

There are a couple parts that really get me....I won't go into details. I'm not sure why my emotions have been more raw recently, though I think perhaps we're going through some (adult) growing pains. Some friends are battling illness, others are moving away, and we've definitely had our share of loss. The feeling that nothing is as it should be is a bit unsettling. Fortunately, I tend to be pretty good at shifting expectations and moving forward, so I know we'll be okay.