When your kid feels less than perfect

For those of you who don't know, our daughter Lexi was born extremely prematurely (15 weeks early) and there were times in the first couple of months where  it was questionable whether she would survive.  She had a great deal of trouble breathing on her own, suffered grade 3 and 4 brain bleeds (on a scale of 1-4 with 4 being the worst), had eye trouble, heart surgery at 2 weeks of age, and just before we brought her home we learned that she received a blood transfusion from someone who later was found out to have hepatitis C. Thankfully the individual had donated the blood prior to contracting hep-c. There was a night, both the best and worst of my life where we were called to the hospital because they weren't sure she was going to survive.  We watched as her blood pressure and pulse/oxygen levels continued to fall into and beyond the levels that were considered extremely low and potentially fatal. Every so often her personal angel Dr Rodriguez would disconnect her from the ventilator and bag her manually.  We watched as her pulse/o2 level fell to 50% when normal is 93+, and her blood pressure fell to 16/8 with a mean BP of 12 when she should have a mean of close to 30.  We sat, powerless at the end of an open bed, watching the nurses and doctors work methodically to save our daughter, wondering if we were watching the last moments of our new baby's life.

We're the lucky ones, Lexi survived and every doctor who see's her for the first time is amazed at her abilities.Our favorite response thus far was from a hearing doctor in Hershey who said "Just enjoy her, you don't know how amazing she is given her diagnosis. Sure she has a little hearing loss, but it doesn't appear to be enough to really impact her, so just enjoy her."  Grade 4 bleeds result in a major handicap 86% of the time.  We've seen kids who had a grade 1 bleed who have trouble speaking, or will be in a wheelchair forever, and we are very fortunate that Lex has only some mild cerebral palsy on her left side resulting in her strength on that side being maybe 50-60% of her right side. She has less fine motor control with her left hand and foot than most kids and she has a brace that she wears on her left foot to help her walk with a better gait, although she walks pretty good without it.  There is nothing to keep her from having a full, happy life.

That said, on Monday my now 8 year old miracle daughter was reading a book to me before bed and I was holding her left hand as I often do while she's reading.  She looked at me and said "Dad, I wish my left hand worked as good as my friend's hands", and then followed that up with " and sometimes I don't want to wear my brace". She started to cry.  My heart sank, tears welled up and through swollen eyes I talked about how special she is to be alive, how kind and smart she is, I asked her if anyone had said anything about her hand or brace, and told her we all have things we're good at and things we're not. I struggled to explain to this beautiful 8 year old that any issues she has are superficial, and that reading at a level 2 grades above her own is much more important than whether she can move her fingers on that side individually. I reiterated that being a kind, loving, caring person defines you much more than whether you use some extra support when you walk. I also told her that if anyone ever treated her differently because of that, then she should tell myself or Tracey, or if we weren't around, our friends Ivana or Anjie.

I got her to bed and as I left the room, I sobbed. The thought of my 8 year old daughter, who by every measure is lucky to be alive, feeling as thought she is less than other kids because of these mild differences, was too much. This is the day I have dreaded. The day where you're kid feels less than perfect because in some respects she is different. How can you help your child be okay with being different than other kids when you know that there will be some that use it against her?  It's possible Lexi will never fully comprehend the magnitude of what it means for her to walk, talk, and even sit upright on her own, let alone to have such mild issues. Hopefully we'll be able to help her understand that her limitations are slight, and not what defines her. What has defined her life thus far is that she has the inner strength and determination of a  golden glove level prize-fighter that inside that tiny 45lb body. That serves her well, but I have to admit, can make her a bear to deal with at times. As a parent, you hope that those same traits help her deal with any insecure feelings and challenges she'll face as she progresses through middle and high schools and one day goes onto college.  She has no issue that would will keep her from splitting an atom, writing  a NY Times bestseller, or developing an AIDS vaccine, and her genetics already dictated that she wasn't going to run the 100M dash at an Olympic level.

Still, the idea that your child has become somewhat self conscious of a limitation she has, even if only for a day, kind of breaks your heart just a little.

Things you miss, random musings, and St. Val's Day

So I'm the worst blogger in the world.  So bad that I should just quit. I can't keep a journal  so I stick with the semi-annual blog which has become somewhat therapeutic. Mostly the things I blog about are related to the emotions surrounding the loss of my dad. If this is a downer, well, it's about me, not you. If you want something  more silly and bubbly, I'm sure that you can read the works of someone less cynical, more up, or dare we say, more Oprah or Rachel Ray. This blog is more Anthony Bourdain.

 My emotions have been relatively ragged lately as it seems to have set in that I'll never talk to my dad, or hear his voice again. I watched some god-awful show with Howie Mandel called Mobbed.  It was another bit of reality TV dreck that was utterly offensive on so many levels, and of course there was a 37 year old guy who finally met his long lost father. I really didn't need to watch it, and of course I sobbed, but I felt lucky to some degree. This was a guy who had no relationship with a father who never knew he had a son. I, on the other hand had dad in my life for 37 years before we lost him. Strange. Please don't watch the show. The thought of there being additional episodes makes me cringe.

I went to one of my CIO peer group meetings recently and on the way I was driving through Lancaster County on the way to Philly and I instinctively grabbed my phone to call Dad. Whenever I would travel to different offices, customers or conferences I would call dad and we would talk along the way. I miss that.Dad used to start off each voice mail message the same way, by saying "Steve, it's your Dad". He had a mildly deep voice, a tone that had smooth edges and no accent.  He was incredibly smart, but spoke in a way and with language that was comfortable.  He didn't waste time trying to identify an obscure adjective for the day. Dad spoke the English of the Midwest which is simple, straightforward, and not self congratulatory. When he disagreed with you or was considering a point, his tone would rise, and he'd start out with a slightly drawn out "Wellll, I don't know" and then go to comprehensively disprove whatever ill conceived opinion he disagreed with. I can hear him in my mind, but I would give just about anything to hear him in my ears and to appreciate the subtlety, texture, and simplicity one last time.

Having said that, an amazing thing did happen this morning on the way into work. I often listen to podcasts on my rides to and from work.  Typically it's the Tony Kornheiser show, but I am all caught up on the TK podcasts so I decided to listed to an interview Bill Simmons from ESPN did with Larry Bird. In the interest of full disclosure, through the 80's I was a Magic guy, not a Larry guy, but as I've aged I have learned to appreciate Bird more. As soon as Bird spoke tears began to flow. Larry Bird, one of the greatest basketball players of a generation and a great son of the Midwest, has many of the same tones and phrases as my father. Larry has more of an twang-y accent, but the directness, the language, and the tone and way he ended certain sentences and words had an uncanny resemblance to Dad. I was amazed, and to be honest, I really needed it. The interview lasted my entire ride to work, 39 minutes, and I have no idea what it was about.  I remember hearing Lebron and Kobe's names mentioned, and I listened intently, but all I was hearing was the tone, the word choice, and texture.  It inspired me so much that I actually wanted to update this crappy blog..

Dad, I miss you, but we're doing good.  By the way, I wish you would have explained commodities hedging to me a bit more. OK, you explained it dozens of times, but it didn't sink in. I have some great friends from work who are trying to coach me up but I think they're wishing you'd have explained it more as well. The idea that you're committed when you're selling calls and puts but not when you're buying still makes no sense to me. I should probably stick with the advice you gave me when I said I was thinking about putting some money into the commodities markets........"Don't"

Lastly, it's Valentines Day! The name Valentine is derived from the latin valens which means "strong, worthy and powerful". While for some it's not the first thing that comes to mind when you meet all 5ft 2in of my wife, strength is something that truly defines her. There's a book called Character Strengths and Values which outlines all the positive psychological traits of human beings. The entire list is essentially a portrait of my loving wife.  The last 6 months have been quite difficult and I have leaned on Tracey more than ever. When Lexi was born it was the absolute toughest and we were both just overwhelmed, but optimistic. This is a little different in that I'm the one with the constantly evolving emotions and there's no possibility of dad walking through the front door. Tracey has been there every second I needed her, and she knows when to say something and when to just let me be.  She is the most amazing person I've ever met and continues to put up with me through our 13+ years of marriage.  She is stronger than she gives herself credit for, she is a magnificent teacher and mother who cares so deeply about each of her kids, she's just a fabulous person and she's the one that makes our lives work. Those of you who are going to be reading this and haven't tuned me out by this paragraph  already know her, and I'm sure agree.

Trace,  I love you, I adore you , Happy Valentines Day my love!

-home again

Those of you who know me well know that every day I fly is a tension filled day. Today was no exception and then throw in frayed emotions and you have a recipe for a long day. This morning I woke up early and went to see my uncle Ed, dad's brother, who I had not seen since the funeral. We sat and talked for a bit with the 9/11 events playing on the tv in the background. We both remarked that if our nerves weren't shot already, watching too much of the 9/11 coverage would definitely have us curled up in a ball. We talked for a bit and went and had coffee. My nerves were already shot after not sleeping much and as I drove back down to mom's I started really breaking down. When I arrived I was insistent that we head back to my dads house and see my step mother. Now the girls had just got up and there was a lot of packing to do, but I was in an emotional rant. We had spent a great deal of time with my step mother the last few days, and Saturday afternoon we had said an emotional goodbye and that we would talk soon. Tracey was trying to calm me down and was asking whether going back over for a 20 minute visit was the right thing to do. Putting Bonna through another emotional farewell probably wasnt smart but I was insistent that I was going. I got in the car, drove about a block and the words that my cousin Amber told Tracey at the funeral came to mind. She told her "watch him, he's going to be more irrational, more emotional, and more irritable than ever". I had joked and asked who's side she was on when she made the comment, but as I drove, I thought of what she said, I calmed down and thought maybe it wasn't such a good idea. It wasn't going to help Bonna deal with dad's loss. I had a breakdown whenever I arrived and left dad's house, but I had tried to keep my emotions in check while inside the house. Today was not a day I was going to be able to control this well and Tracey was right. The good thing is that my siblings, Kelly, Cody, and Jenna and their families live close and will be there for Bonna, and she's incredibly strong. That will not necessarily make it easier, but she'll stay busy, and soon she'll develop a routine that will allow her to move forward. Dad would be very proud of how she has handled the past weeks events. Hopefully, once things calm down a bit she'll be able to come out for a visit. We'll be back in Illinois this thanksgiving again. we love them all and cannot wait to see them. some thoughts on the 9/11 coverage. I remember working out of the house that day watching Tori who was just over a year old. We had been watching dora or some other show and I popped open my laptop a little after 9 and saw a headline about the trade centers and pentagon being attacked. I immediately changed the channel to NBC and saw the burning buildings. And within 3 seconds, the first tower fell. I was stunned, and I looked at my 16 month old daughter and thought, she'll never fully understand how her life wil be effected by these events. Later that night after watching hours worth of coverage I walked up to the pier to go fishing. All the planes were grounded, but I could hear military fighter jets circling over the Chesapeake. It was eerie because they didn't have the lights on that commercial airliners do, so you could only hear them. Lastly. The flights back home weren't bad. STL is a terrible airport and it took an hour to get through security. Then this genius from United had split all four of us up. Now Tori could do fine by herself, but Lexi was not going to fly without Tracey or I next to her. They were all booked together and the girls have childrens tickets. The moron said there was nothing he could do, even though he had 4 other seats sitting on the counter that were next to ours. We' have to "find someone to trade with on the plane". I thanked him for all of the help and effort he put forth and may have also mentioned that he was a jackass. A nice flight attendant took care of us and got it straightened out on the plane. We're glad to be back home, albeit a wet home. Still smells damp and lots to do, but our great friends did a ton of work to get the majority of the water out and the insurance folks are coming this week.

Goodbye Dad.

It's been a long, emotional day where we said goodbye to my dad. I could not have done it without the support of Tracey, the girls, and all of my friends and family who were here or who sent such wonderful messages the last few days. Those of you you who knew my father know how great of a person he was. A much better person that I. Those of you who did not know him only need to know that there were hundreds of people who came to pay their respects, to tell us stories of how much they admired him, loved working with him, and how highly regarded he was by everyone who knew him. The common message we heard from these people was that he was the finest man they ever knew. When that message is consistent across so many people, you should really start to consider that it may just be true.

I've always been fortunate to have wonderful parents and step-parents, and to have some wonderful memories of my dad that I will cherish forever. My emotions change from minute to minute. Most of the time I am ok, and when I break down it's typically because I recognize how lucky I am. I'm still pretty angry that he was taken 20+ years too early, and I'll never understand why. While my girls will always remember him, and there are some really great memories, there will be many fewer than I feel were warranted.

The sense of loss is profound, but I know that over time it will fade. A wise friend of mine told me that if you're fortunate, when you lose a loved one you feel only loss and not regret. The feeling of loss will fade, but regret is something you carry with you forever. I don't know if it's all true, but there is no regret in my feelings and memories of dad. He knew how I felt about him, and I knew how he felt about me.

I'm always amazed by my cousin who in her late 20's lost her husband and father within 3 years time. Every time I see her I am amazed at the strength of her faith, and how it has carried her through such adversity. This is a person who had every reason to burn with anger at the world and at god, and yet every time I see her she beams. Absolutely amazing. While I admire her faith, I have to admit mine does not reach that depth. I have too many unanswered questions and honestly this week has generated more questions than answers.

Lastly, on top of the funeral, we received word from our neighbors who were watching the dog that our sump pump at the house stopped working and we had an inch or so of water in our basement. Now we received something like 14 inches of rain back home in new oxford. We have the greatest bunch of friends and neighbors anywhere. They enlisted their friends, mothers, sisters, etc to come over to our house and attempt to dry out the finished basement while we're in Illinois for Dad's funeral. They are truly amazing people and we are incredibly fortunate to have Ron, Christie, Wes, Angie and so many others as great friends and neighbors. The message they keep sending is "we'll take care of this, you have enough on your plate already." You guys cannot imagine how much you have touched Tracey and I. We love you all.

Lastly, a message to dad. I love you, miss you, and will continue to do my best to always make you proud.

North Korea Missile Tests a Success????

So as I perused the Washington Post yesterday at lunch, I come across a small 7 or 8 line blurb in the latter stages of the A section that says that 6 of the 7 North Korean Missles that were launched, hit their intended target areas in the Ocean.

Let me repeat myself ...THEY HIT THEIR INTENDED TARGETS


Hmmm...Just a thought. But what the hell is that kind of information doing in the Nether-regions of the Post. This needs to be front page, above the fold news as far as I'm concerned. How about someone from the Pentagon in front of a podium saying"Yeah, we screwed the pooch on that one". Everyone laughed when we thought their missles had fallen helplessly off target, but now it's not so damn funny. This administration seems to avoid negotiating with anyone who's not anglo-saxon christians, so here's what we're going to do. I want to see former Presidents Clinton and Bush back on their fundraiser plane, because unless someone is elected who is willing to negotiate with countries who aren't on our christmas card list, and is willing to find peaceful resolutions to these problems, there will be thousands or millions more bodies and we're going to need the cash.