Time after time

How do you measure time?  An hour isn’t always just 60 minutes?  Sometimes an hour is so much longer than 60 minutes?  Vickie and I have kept very busy since Katie passed away, but even though our calendars are full, our hours are not.  There needs to be some equation to factor in the quality of time. An hour with Katie was so precious, so valuable, and quite simply, so much fun!  An hour hasn’t had nearly the same value since she left us. Vickie and I do everything we can to replicate the valuable hours we had with our sweet baby.  We stay close to one another, navigating these undesirable waters together, but the heightened sense of happiness is gone. 

Why am I thinking about this?  I am on a train from Philadelphia to Connecticut and I am so saddened by a mother sitting directly behind me.  She has the cutest little daughter, probably 3 or 4 years old, inquisitively asking her questions and yearning for some interaction.  All the mother has done is bark at her for the last hour.   I know we all have our bad days and sometimes we lose sight of the bigger picture, but I just want to throttle this woman.  Stop taking your daughter for granted.  Look at her.  It’s the last time you’ll ever get to share THIS moment with her.  Hopefully, you’ll have more memories, but never again will you have this moment.  Value this hour! 

After Katie passed away, Vickie and I used to exchange our favorite Katie memories.  None of them were extravagent.  Few of them were “exciting”.  All of them were cherished.  There will always be external factors that complicate our lives, but how we simply interact and care for one another is completely in our control.  Remember that everyone has a past, cherish your present with them, and don’t let what “might happen” devalue your present state.  Keep it simple.  All we have is now. 

Vickie and I continue to piece our “now” back together, and I think we’re quite successful so far.  I could never have made it this far, this well, without Katie’s mom.  I’ve said it before, but every day I get a better sense of where Katie got her strength and character.

 Some people are in the same place as us right now.  Others fear the day they may have to be here. Yet others thankfully have no clue of the fear and sadness I speak of.  Regardless, when you see a loved one today, tomorrow or the next day, live in the moment…make the most amazing boring memory ever…  Sitting in a big red chair…reading a book…walking around the block…strolling up and down the hallway– so simple, and so missed!  Whatever else, don’t make me throttle you like I feel like doing to the unsuspecting passenger behind me…hahaha

Reality or fiction?

“How do you document real life when real life is getting more like fiction each day?” -Rent

Last Thursday would have been Katie’s 9 month birthday.  She’d have been so big by now, so interactive.  She is so missed.  I came home from work feeling exhausted.  It had been a long couple of weeks juggling many balls, and a long day coping with my feelings about Katie.  The result- I was in bed before 9pm, curled up watching Rent with my wife.  I have seen the musical live 5 or so times. I have seen the movie another handful of times, and I have heard the soundtrack countless times.  But on Thursday I heard the line questioning how you document real life when it is spinning out of control.  It is the perfect synopsis of this blog, of my life. 

More time makes things actually feel more surreal.  I think back to the normalcy with which we conducted ourselves during extreme times.  I think back to the way we sought levity in such deranged events.  I think back to how strongly we hoped for Katie to pull through her struggle.  I think of these things and it becomes overwhelming.  I’ve seen movies that had less of a plot than the last 9 months of our life.  How do we even begin to express the emotions, tell the stories, and most of all, find comfort in the outcome?  Each and every day is a step toward “normality” but if the truth be told, we’ll never feel normal again.  I am thankful for the times that we had as a family, and the perspective that I have gained, but the way things unravelled will forever impact the way I look at life. 

Life and death.  So simple. So complicated.  So tiring…and so sad.

read the fine print

When Katie was diagnosed with HLHS we were warned that we were about to embark on a rollercoaster ride.  I didn’t know that the ride would continue after Katie passed away- it is.  It’s different.  There are fewer peaks and valleys, but when the change happens, it comes hard and fast. 

Down- Last week I was in Portland OR.  I was going about my day, working, working out…the usual.  As I was getting ready for bed the events of the past couple of months hit me- it hit me harder than at any point since Katie passed away.  It was intense, it was long lasting, and it came out of nowhere.  The feelings we so strong.  I woke up the next morning, and on I went. 

Up- After getting home on Friday, 36 people from Ireland came for a week long basketball trip.  the group included 18 Under 13 basketball players.  Watching them enjoy the trip of a lifetime was incredible.  Truthfully, it was difficult for me to coordinate the plans of their trip after Katie passed away.  I wasn’t motivated, and it was a challenge to muster up the energy to pull things together.  However, as the day drew closer, I felt motivated to make their day.  I think we did it.  It felt great to see the look of happiness on their faces!  They played some great games, attended some amazing sports events, and got to meet some famous people i.e. Glenn Hansard (from the movie Once), Curly Neal (Harlem Globetrotters), Clifford Robinson (UConn grad and 17 year NBA vet)…In some small way I was able to do for other kids what I can’t do for my daughter.

Up- Kisses from Katie had a very successful meeting at YNHH yesterday.  The group approved our program ideas and it would appear that our months of planning are benefiting us.  We seem to be gaining some traction.  We are incredibly excited.

Up-  last night the basketball team that I coach were trailing 24-9 with 5 minutes left in the game. They would have struggled to throw the ball in the ocean for the first 3 and a half periods. In the end, they won 25-24 thanks to a 3 pointer with 5 seconds left…they were incredible…16-0 run to end the game.  I was so honored to be their coach, so happy for their accomplishments, and most of all, I was thankful that they took my advice and embraced their opportunity to play the game that they love.  They played with such passion.  The result was secondary to their efforts and enthusiasm to close the game.

Down-  I got home last night and the pain and emptiness was unbearable.  No reason.  I just missed my baby girl. 

So there you have it.  We are getting better at dealing with life without Katie.  The valleys are widening but not becoming any less deep.

another negative milestone

Up at 3:15am.  Drove the hour and a half to JFK.  Flew from JFK to Salt Lake City, waited an hour, and then flew from Salt Lake City to Portland.  Had an impromptu conference call in the airport, then jumped on the train into the city.  Walked 7 or 8 blocks to our office in Portland, and after being up for 14 hours I was ready to start work. 

So, I worked in the office for 3 hours or so, and headed to a nearby hotel for the evening.  After a quiet dinner, aimless walking of the Portland streets,  a fairly vigorous workout, and an endless amount of emails, 2 things have become abundently clear.  First, I am tired!  Second, no matter what I do today, Katie is my every thought!  3 months today.  3 months since she passed away.  Everywhere I looked today there were babies.  All so cute.  All so innocent.  All reminding me of what we had.   At some level, I feel like every resurgence of overwhelming emotion takes me to a new, deeper level of understanding.  At a far more palpable level, I just want Katie back.

3 part story

Act 1- my repeated thought of the week

It is just under 3 months since Katie passed away.  While the pain isn’t really going away, we are slowly but surely adjusting to life without Katie.  I suppose the mere fact that we are learning how to cope is equivolent to the situation getting easier.  The only reason I reject the notion that this is actually getting easier is that when the pain hits us hard it still can have the same crippling impact it had the night she passed away.  Thankfully, these onsloughts are becoming less frequent.  Strangely, I’m not always sure that fewer bouts of pain is a good thing.  No matter what we say or do, Katie is becoming less of a reality and more of a memory.  With every passing day we are one day further removed from the most precious time in our life.  In general, each day is helping us get a step closer to a return to “normal” life, but a piece of me resents “normal” life because it is without my Munchkin.  I recognize that this is a very convoluted and confusing set of statements, but it’s how I feel.  I am distraught by the thought that Katie is becoming a smaller part of my present.  She will always remain the biggest piece of my past, and her legacy will always stay integral to my present, but she herself will not be a participant in my life.  Seems obvious, may even seem foolish, but to me, it’s gut-wrenching. 

Act 2- Katie’s mom knows how to make me feel as good a I possibly can

A little over an hour ago Vickie gave me my birthday present.  We are going to see Man United against Liverpool in Manchester, England!!!  For you non-soccer enthusiasts- that is the Yankees and the Red Sox on Barry Bonds type steroids!  It is a huge game, with an even bigger than usual sense of importance this year because of the title race.  I had told Vickie that I dreamed of one day taking Katie to Old Trafford.  Unfortunately, I won’t be able to do that.  I will be able to take Vickie though-  my wife, my support, the person that reminds me most of my precious Munchie!  Unbelievable!!!!!  I always knew my wife was amazing-  now she just proved it to me again!

Act 3-  Funny airport happenings

I spent much of the last couple of weeks on the road with work.  Coming back from the west coast last week, I had a brief layover in Minnesota.  As usual, I was ambling through the airport, listening to my ipod, comfortably alone with my thoughts when a woman touched me on the arm.  I took off my headphones to a very friendly lady asking if she could ask me a question.  She asked what my name was.  Growing modestly confused and unsettled (not in a bad way, just not knowing what to expect), I answered with a simple- “Alan.”  Her response-  ” I knew it!”  Excuse me.  You knew it!?!  I look at this lady trying to place her- Ireland, no; Westminster, no; Gettyburg, no….and so on.  She continues- “I recognize you from the blog.”  Are you kidding me?  This lady was a friend of Rolf and Trish, Rudy’s parents.  What a small world, and the technologies we are becoming more and more accustomed to continue to shrink it further.  I have never before been recognized in an airport by a stranger…who knew that my first experience would be because of this blog and my association to Rudy’s Beat.  Pretty cool stuff.  Unfortunately, there were no autographs- just a friendly couple of minutes of conversation.  I’d like to think that now I know how David Beckham feels….ha!

more gang activity!

I had to drive 5 hours today, so as I drove through the empty roads of rural Pennsylvania I had ample time alone with my thoughts- always a dangerous proposition!

All I kept thinking about was how much I’ve grown up this year.  On the brink of my 30th birthday I finally feel like a “grown up.”  Furthermore, I think it’s important to identify the true tough guys in my gang.  Everywhere I look I see “wanna be” tough guys-  whether it’s the sagging pants, the walk with the limp, the hat cocked to the side, the tight t-shirt to let the muscles bulge, or whatever characteristic these naive people think makes them tough- I just laugh.  You want to see tough?  You want to meet tough?  Meet an HLHS family.  The patient is obviously a gritty and determined fighter who doesn’t understand the word “can’t”.  Then there is the resiliant siblings who you can’t make flinch, a rock of resolve.  And then there’s the parents.  They don’t need a tattoo, or baggy jeans, they just have this aura-  pure toughness!  I dare you to look into their eyes…they’re different. 

This weekend I relived much of the events of Katie’s life for some friends who weren’t physically present during her struggle.  As I reflected, I became overwhelmed by what I personally went through (not being selfish here, I know Katie trumps me 10 fold!).  If you told me that I would see the things I saw, think the things I thought, and do the things I did, I would question whether or not I had the strenght to do it…but somehow we did.  Don’t confuse this for arrogance-  this is surprise and shock.  I know I can’t be faced with a more difficult situation than the one I’ve dealt with.  I can deal with something just as bad, but I can’t imagine anything worse.  At some level I feel like I looked into the devil’s eyes and survived.  It’s a strange feeling.  It’s not pride.  It’s not growth.  It’s just something that parents of sick children do.  After the fact I shudder at the calm with which I acted around my daughter with an open chest, or the final moments of her life. 

If I was feeling motivational I would say it shows me the depths of human character and that we can do far more than we think.  If I was feeling negative I’d say that the memory of what I saw and did haunts me.  Right now I am nestled tightly between motivational and negative, in some barren and unclear space.   I think it’s called confused. 

For the first time in my life I regret my growth.  I have always looked to grow and develop.  I wish I had the same perspective I had when I turned 29.  For that matter, I wish I had the same sense of being that I had on May 19 and 20th.  This is a tough one to chalk up to “character building!” 

So to recap, don’t mess with my posse, my gang-  they’ve got the crazy eyes, and they’ve seen things that you couldn’t imagine…Tough!!!!….by necessity.