skater boy

Up until about two years ago I thought that skateboarding and all of the X-Games family marked the end of sports as we knew them.  Then I started to watch more closely and I realized the athletic prowess needed to reach the upper echelons of the X-Games were very similar to “regular” sports.  As I familiarized myself with skateboarding, snowboarding etc. I became captivated by one athelete-  he was different.  He was fresh, exhuberant, down to earth.  His skills were remarkable, and his peers both respected and feared him,. But he just continued with a boyish enthusiasm, seemingly unincumbered by the trappings of greatness.  I have come to the point where I look to see how he is doing whenever I see an X-Games result.  I watch him in support whenever I see him on TV.  I was a “fan” before I “knew.”  His name is Shaun White.  He has a CHD (Congenital Heart Defect) just like Katie did, just like Rudy does, just like so many unfortunate people do.  He too had a couple of surgeries.

There was always ”something special” that drew me to watching him.  Now I look at him and understand the something special.  Now I look at him and feel proud of him, without any form of ownership or belonging.  It’s cool; he’s cool. X-Games of all things-  talk about going for the jugular.

Not the bloods or the crips…

Honored to meet Rudy!

We are in a gang!  There is a remarkable kinship and understanding that exists between HLHS parents.  We are from different places in the world, from different places in our lives, but we are all so similar.  We speak a very rare dialect that few understand.  We laugh at things that others would cringe at.  We get encouragement and motivation from things that would upset and dishearten most.  I have never been one to find a strong identification from a group, but this is different.  This gang is powerful, and it’s connections run as deep as could be- we are truly a family. 

 

Yesterday was amazing.  After months of an “e-friendship”, Vickie and I finally got to meet Rolf and Trish…and of course, Rudy!  To be fair, we were slightly apprehensive that going back into an ICU would bring back some difficult memories, and reopen some fairly fresh wounds.  And while it was frustrating to see any baby need the level of support that Rudy is currently getting, our visit marked the best time I’ve had since Katie passed away. 

We are in L.A., but rather than see the stars, cruise the coastline, or visit the sites, we were excited to spend the afternoon at UCLA Hospital.  If possible, the Geyling’s were even nicer than I had expected.  They welcomed us with open arms.  It was a fleeting 5 hours as we reminisced, compared stories, and simply got to know each other.   They have been a tremendous source of support and encouragement as both of our families charted similarly unfamiliar waters.  While our journey came to an end, they continue to do everything they can to support their son.  It was an honor and a privilege to meet them all.  We look forward to many more meetings in the future…regardless of the location!

After meeting Rolf and Trish, something became very clear to me.  When we looked at each other, there was an unspoken understanding, a subconscious awareness of each other’s mindset and perspective.  They KNOW about the emotional turmoil.  They GET the inexplicable thoughts.  They FEEL the same frustrations.  But most of all, they SHARE the love of their child.  Vickie and I have friends for life and Rudy has an angel to over him.  Keep fighting Rudy!

Hadness

It’s easy-  the opposite of up is down, the opposite of right is left, and the opposite of black is white.  I used to think that the opposite of happiness was sadness, but the life events of the last couple of months have shown me that oftentimes happiness and sadness are delicately interwoven.  Thus, I want to coin the term- hadness.  It is the perfect combination of happiness and sadness, and not too surprisingly it needed the invention of a word to pinpoint the feelings that I feel…and sometimes the feelings that I simply survive.

Hadness is constant-  I can be smiling at a funny event in Katie’s life and seconds later find myself fighting back tears.  I can feel at utter peace with the outcome of Katie’s journey only to be blinded by anger and rage within an instant.  And conversely, I can feel down about  all that we’ve been through only to find myself smiling at the memory of our Munchkin.  There in lies the essence of hadness! 

Why hadness?  Well, if you combine happiness and sadness you can make a few different words- I chose hadness because of the emphasis on HAD.  We had it all.  When Katie was taken away from us, we were left with hadness.  In some ways, I suppose that hadness is the more complex emotional barometer of a grieving family member.  There is no clarity, no certianty, just hadness.  We long for what we had.  We are happy for what we had.  We are confused by what we have. 

Katie would have been 8 months old today.  I miss my buddy!  I always envisioned us being partners.  I always knew that I’d get in trouble with Vickie for allowing Katie too much freedom.  I was so excited to have Katie be my “best bud”, and my “partner”.  We were going to be like “peas and carrots”, as thick as thieves.  We still are, but now it’s just different.  Everything is just a little different.

I couldn’t make it through today’s post without marking the day-  “I have a dream…”  We all had a dream for Katie, but unfortunately, life doesn’t always work out as planned. While my dream was cut short, my overarching desire was met.  I wanted Katie to give her all.  I wanted Katie to not be in pain.  Both of those things happened, and so while Katie may not have lived MY dream for her, she still has a proud and thankful Daddy who misses seeing his buddy.

all mixed up

The picture in the last post is powerful.  Sometimes I look at it and get the biggest smile.  Other times it breaks my heart.  In many ways that one picture captures the breadth of emotions I go through on a daily basis.  It has only been a little over two months since I last held Katie, since I last saw her in person.  It feels like an eternity.

The five and a half months that Katie graced our lives were packed with memories that I will have forever.  Even the most mundane and arbitrary tasks were appreciated and are memorialized. I am so thankful that Vickie and I recognized the severity of Katie’s condition and feverishly held on to every moment we had with her.  Compare that with now.  Vickie and I are doing everything we can to make it through this ordeal, but there have been so few memories in this exhaustingly long 2 months.  5 months passed in a flash but were packed with precious moments; 2 months dragged along with nothing overly memorable to point to…does that qualify as irony?

Vickie and I often discuss the abruptness with which we feel Katie’s absence.  A day can be going along peacefully, I would even dare say we could be having a very good day when all of a sudden an overwhelming emotion is triggered.  It’s painful.  It’s difficult.  It’s unfair!

All we ever wanted was a family.  Katie completed our world.  Caring for her, loving her, felt so right.  All thoughts and actions were put into context, not by Katie’s condition, but by Katie’s presence.  I miss being a dad.  I miss watching Vickie be a Mom.  Nobody can explain it to me!  I know that positive memories will re-enter our lives. Vickie and I love each other and our relationship is only growing stronger through this ordeal- how could it not?  I look at Vickie and I see the closest resemblance to Katie that exists in this world.  I see Vickie and I see my wife, my love, and my daughter.  I look at our future and I hope for happiness.  But somewhere, not too far below the surface I look at my wife and I feel great helplessness. I look at a dedicated mother and I struggle to know how to make things right…in fact, I would go so far as to say, I know I can do very little to make things right.

If you can’t see it yet, I am frustrated. This is difficult.  We are very much back into a normal routine, where the cast of characters are familiar, but none of the emotions are the same. It’s not your fault, it’s not even our fault.  There is just a lot to cope with.  There is a lot to wade through.  Good times….not really. 

On another note-  Last week a close family friend of Vickie’s family passed away.  A special woman left this earth, but while it was a painful loss filled with memories and nostalgia, at some level it was appropriate.  After a long and eventful life, the pain of an aging body was taken away.  Nanny will be missed by her family and friends.  Now, there is yet another great person with our Munchkin in heaven-  the cast of characters just gets stronger and stronger!  So while we continue to fight for peace and happiness, we can find solace in the fact that the celebration continues for Katie and her new admirers.

time passes

This was one of the last times that Katie and I looked into each others eyes.  While my parents were here I saw the picture on my dad’s camera.  It brings me so much happiness…so much sadness.  Tomorrow will be 2 months since Katie passed away.  She was so perfect and so sweet.  She is so missed.

Silent Night

I feel like we made it through the Christmas period fairly easily.  New Year’s Eve was a little bumpy, but all in all, things went as well as could be expected.  As some of you know, Vickie was raised Russian Orthodox and now we both attend an orthodox church.  In the orthodox faith, Christmas is celebrated on January 7th…today.  I guess we weren’t out of the Holiday woods just yet. 

As with most things in my life, I tend to like things that are less popular i.e. a basketball loving Irish man.  To that end, celebrating Christmas when everyone else is going about their normal day is appealing, not only because of the novelty factor, but because of the effort and dedication needed make the day more special.  When everyone is doing it, it can become too habitual.  So over the last 10 years this “other Christmas” has grown to mean something special to me.  These factors coupled with an abundence of very adorable young kids at church this morning got Christmas off to a challenging start. The church service itself was more emotional for me than it would ordinarily be, but I was slyly wiping away the occasional tear undetected.  Then, to end the service they sang Silent Night…more like good night to my slyness.  The absense of Katie burned deeply today and I think Fr. David noticed.  As Vickie and I passed him at the end of mass, getting blessed and exchanging salutations, he simply grasped each of our arms warmly as we passed…he knew.  He also almost made me lose it in the middle of the church, and there is no need for that!  I had to “lock it up”  or there’d have been quite a show for the congregation. 

The rest of the day was significantly impacted by our time at church.  This isn’t negative, it’s just a reality.  In fact, I would say that today’s church service was the most engaged I’ve ever felt at church and the closest I’ve felt to Katie since she passed away, so by no means was it negative.  It was just difficult.  Going from church to the cemetery tested our resolve, but going to Yale NH Hospital for a Kisses From Katie appointment almost put me over the edge. 

All in all, it was a GREAT day.  My emotions were thick.  My pain was real.  But, the love in my heart was pure.  I certainly wish we could have shared Christmas, whether it be “regular” or “Russian”, with Katie, but we couldn’t.  That’s saddening, but thankfully, today the saddness didn’t lead to anger.  Today was Christmas.  Without getting too religious, today was the day when the ultimate baby was brought to earth.  For the rest of my life I will parallel Christmas with the birth of my personal shining light, my personal hero.  Merry Christmas everyone!  Merry Christmas Munchkin…I hope you sleep in heavenly peace.

Last Train to Hope-ville

I was back on the road today. I was in New Haven train station bright and early, ready to get a train to Philadelphia when I suddenly got some strong Katie emotions. I had never been to the train station with Katie, so I couldn’t figure out the source of my nostalgia. Then it hit me as I made my way down the escalator to the train.  It was late September 2007 when I informed my parents that Vickie was pregnant and that they were going to be grandparents for the first time.  I was standing in the New Haven train station, awaiting a train to Philadelphia!  I vividly remember pacing back and forth that day, excitedly telling my parents the news. It’s amazing to think of the cycle we’ve had since then.  I boarded the train today as I did a year and a half ago- a husband but not a father.  Like then, I am filled with emotions, but instead of hope and uncertainty about who and what my son or daughter will be like, I am packed with memories and unequivocal sureness that I was the father of an angelic little Munchkin.

Sometimes in life I get frustrated by uncertainty, but as I reflected on today’s incident I came to the conclusion that uncertainty, regardless how daunting, always has an element of hope or positivity.  The very nature of uncertainty is not knowing the course of impending events.  Today, I have no uncertainty or anxiety about Katie’s future.  It is with the greatest definition and clarity that I can say that her path on earth is determined.  So the next time you are uncertain, remember that one of the possibilities is positive.   It’s tough, and almost “Dr Phil-esque” but from my vantage point today, I would welcome some uncertainty…or hope for Katie. 

That being said, the past couple of days of coping with Katie’s loss have been slightly easier.  I am so thankful that her pain is gone.  As I look back on pictures (the ones that weren’t posted!) I am so grateful that she doesn’t have to feel the pain that you could visibly see etched across her face in so many images.  So while I miss the hope of a healthy and happy life for my daughter, I don’t miss the pain and misery that she undeservedly endured.  I know it sounds almost contradictory, and in some ways I suppose it is.  That’s why this isn’t easy, isn’t clear, and probably never will be. 

Glimpse

“Beauty is unbearable, drives us to despair, offering us for a minute the glimpse of an eternity we should like to stretch out over the whole of time.” – Albert Camus

Tonight I watched a movie that I hadn’t seen in a couple of years, The Family Man.  I remember enjoying it the first time I saw it.  Tonight, I enjoyed it again, but like many things in my life, it was a very different experience.  In the movie, the main actor was given a “glimpse” of a life he might have had if he had made different decisions.  Glimpse.  What an interesting word. 

Katie gave me a glimpse at a happiness I didn’t know could exist.  Unfortunately, the glimpse makes the beauty unbearable, as Camus said.  The five and a half months of bliss with Katie were miraculous. Everything in my life was placed firmly in perspective.  All of the important things mattered and none of the unimportant things seems to nag at me like they used to.  A greater insight into the truest meaning of happiness made life easy.  While we may have had our share of struggles with Katie’s medical condition, our goals were always simple, and our plan was always obvious- be happy together for as long as possible.  Easy. 

The glimpse given to us by Katie leaves an indelible mark.  Her courage inspired us, her smile warmed us, and her eyes filled us with hope.  But it was her mere presence that gave me the ultimate glimpse.  She gave me the ultimate reward- a family.  So much is made of “the meaning of life” or “following your dream” or ” making it.” Well, in accordance with my criteria, I was the ultimate success and the happiest man alive.  I had a loving family.  I begin 2009 free of regret.  I can’t help but refer back to a character in a movie that I quoted on the blog a couple of months ago (“I have to see about a girl”).  Robin Williams’ character in Good Will Hunting knew what he wanted, he knew what his happiness was, and he lived it up.  Like me, it ended in undesirable circumstance, but without regret. 

My despair is a life that could have been so much happier with my Munchkin.  Vickie and I were given a beautiful baby, but were never allowed to get to know a beautiful girl or woman.  A glimpse.  While I can’t witness Katie’s life stretch over many years, we will make her memory “stretch out over the whole of time.”  We will share the glimpse through Kisses From Katie, and we will share the glimpse with anyone who’ll listen to our stories about our “Beauty”, our little Munchkin.

A New Year at Midnight

All day today I have yet again had words from Rent stuck in my head- “how did we get here?  How the hell did we get here?

Well, it’s 2am on January 1 2009.  What a year we’ve just had.  This time last year I was looking at my wife’s expanding belly, wondering if we’d have a boy or a girl, wondering what he or she would be like, and excited by the long life we would have together.  I could never have imagined the images that are now etched in my memory.  The good, the bad, and the….

2008 will always be the year of Katie.  My first child, my first daughter.  Named after her great-grandmother, Katie was an absolute joy.  She was more of a person than I could hope for, with less of a timeline than I had planned for.  Unfortunately, December 31st and now the early hours of January 1st have been filled with less than ideal memories.  I can’t escape the last moments.  This year I watched my wife hold my daughter for the last time, as Katie softly drifted from this world.  This year I carried my daughter’s coffin to it’s final resting place.  I didn’t know that I could ever do it.  I didn’t ever want to do it. Nobody should ever need to do it.

For all of the nightmares, the sudden bolts of anxiety, and the endless sense of loss, 2008 was and always will be a year filled with precious memories.  It was surely a year of extreme emotion, but the fleeting moments of happiness and the unmistakable feeling of family can never be taken away.  In many ways, this very evening was a microcosm of our year.  We were surrounded by family.  We spent some quality time together, enjoyed each others company, and lived in the moment for much of the evening.  Then, as the clock approached midnight there was a distinctive change in the mood.  As we sat around the dining room table I felt as though I was back in the atrium of the hospital.  People were quieter.  Eyes were more actively scanning around the table.  I felt sick to the pit of my stomach, anxiously watching the clock, just like we had done for so many procedures and surgeries.  Midnight struck, we all embraced, some tears were shed and moments were had.  Then we picked ourselves up, dusted ourselves off, and went back to having fun.  We were less free than earlier in the evening, the magnitude of the events weighing on our shoulders, but we continued to the best of our ability.

I have no happiness versus sadness goals for 2009.  I can’t ask for the same amount of happiness that I had in 08 without any of the sadness.  My only hope is to continue to love and be loved by my wife so we can continue our journey together.  I hope to continue honoring Katie’s memory.  I hope to find some more peace.

Thank you all for your support throughout this past year.  You didn’t need to care.  You didn’t need to support us like you did…but you did it anyway.  People are good.  The world is good.  Life is good.  I wish all of you a happy new year and a Kiss from Katie!