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.
Friday, March 30, 2012
Tuesday, February 14, 2012
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!
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!
Subscribe to:
Posts (Atom)