getting by

“Be kind, for everyone you meet is fighting a hard battle” -Plato

Katie was my perfect little angel, but since she was born I have come to see everyone just a little differently.  Everyone is someone’s child.  Likewise, everyone has their own set of issues.  If I’ve learned anything through this ordeal it’s that we are not alone in our challenges.  I suppose Plato knew that a little before I did. 

All is going well for us at the moment.  We are coping, learning, and adjusting to the best of our ability.  We’ve quickly come to terms with the reality that our pain won’t go away.  It won’t even soften in any way.  Our goal is to just learn how to live with it.  We have to learn how to find all the happiness we can without Katie, celebrate our legacy, and adjust the plans for how we plan to move forward.  Easy, right?  Not really, but at least knowing what we’re facing makes the challenge all that more reasonable.  Furthermore, this isn’t the type of pain that we’ll ever beat-  it’s much like HLHS I suppose…palleative.

Well, 2009 is quickly approaching.  Surprisingly, I’ll be sad to see the back of 2008.  This was the best year of my life.  My Munchkin was born this year.  My baby lived her life in 2008.  I don’t need or want a clean slate.  I don’t desire a fresh start or a new chapter.  What we want, we can’t have.  What we do have instead is a lifetime of memories.

“Happy Birthday Jesus”- Rent

I miss Katie.  I miss her so much. There’s hardly an hour that passes that I don’t wish we could have her as a happy and healthy part of our life, but yet the past two days have been surprisingly peaceful.  What happened to Katie was the right thing given the circumstance.  I am happy that she is at peace.  I am grateful that she is free from pain.  I am proud of the effort she put into her 5 plus months on earth.

Billy Joel claimed that only the good die young.  I always thought that he was merely trying to make sense of senseless situations, but of late I’ve began to understand his statement more clearly.  Aside from Katie’s obvious cardiac frailties, she died virtually perfect.  She was my angel while she was here, ever before her demise.  She was happy, curious, couragious, and friendly. She was everything that a father could ever want from a daughter, and her perfection will live with me forever.  Of course I would have loved to see Katie grow up, make mistakes, develop imperfections, and struggle with life in the same way that the rest of us do, but it wasn’t meant to be.  Instead, I am left with clear memories of my perfect Munchkin!

My positivity over the past two days has come about thanks to a silly video game!  I spent much of yesterday (25th) playing Rockband, a new game where you simulate the activity of a real band, and yours truly was a lead singer.  I spent 5 plus hours yesterday blasting out sub-par rock songs in a significantly sub-par voice!  Many family members looked on as I immersed myself in the game, and laughed far more than I ever thought I would.  The good mood continued today-  it has been a far better Christmas than I could have hoped for.  If my excitement continues I may have to go get some leather pants, a mullet, and a drug habit!

Love…Hate

What am I supposed to say?  What am I supposed to do?  How am I supposed to act?  Well, these questions are heightened during the holiday season.  Part of me wants to rant and rave about how I HATE Christmas now, but that’s not true.  In fact, this year I think I have a deeper LOVE and appreciation for the true meaning of Christmas and how it should be celebrated.  I am, however, beginning to loathe the gross commercialism associated with this time of year.  Thanksgiving comes and goes, and all of a sudden the most reprehensible part of people is exposed.  It’s all about ME, ME, ME-  the roadways get busy, the drivers get aggressive, the tensions get high, and the reason for the season is lost somewhere along the way.  I’m not getting angry at any person in particular, but I just have a growing contempt for the overall shift.  I’m not about to get overly religious or pious- I like to buy gifts, I even enjoy receiving the odd present, but Christmas is about love.  Religiously, secularly, and commercially, we are all looking to express our love for others.  This year I learned that bigger and badder gifts don’t help me one bit with that effort.Don’t get me wrong, if Katie were here we would obviously provide her with more presents than her 7 months would know what to do with, but that’s not the real point of Christmas.

I am happy to be surrounded by loved ones right now.  I am happy to have some quiet time to reflect on the year that has passed.  I feel like the season is giving me a peace and perspective that makes Katie’s passing make just a little more sense.  However, I am also hating the season- the lack of perspective that so many have, the tension that seems to be synonymous with an adult’s holiday season.  As usual, Katie and her path have taught me a lesson.  Whether you’re religious or not, think of this time of year as the family Valentine’s Day.  It is a day to love and share that love.  I am happy to partake as best I can, although I think my expression of love is going to be slightly limited due to my flagrant emotions. I need to keep all emotions in check so that the wrong one’s don’t leak out too. 

 I have found that the expression of any emotion can lead to unwanted feelings coming to the surface.  Extreme happiness can quickly turn to anger or tears.  As a result, I am tending to maintain an equilibrium, a more steady state that helps me make it through this time.  I am happy.  I am glad to have so many amazing people in my life-  I just might not be able to show you all how much you really mean to me this Christmas!

Merry Christmas to you and yours!  Stay safe and smile a lot!

I just wanted to see a movie!

Vickie and I tried to be “normal” tonight.  After a day of working on the house, we went to the movies to see the new Will Smith film, 7 pounds.  We had be warned that it was a little sad, but we wanted to see it nonetheless.  We hadn’t been in the mood for serious dramas recently but I always want to see Will Smith movies (that aren’t sci-fi). Without trying to ruin the movie for those of you who haven’t seen it, and without writing a novel, I want to document the strange occurances of my evening.  I generally don’t believe too heavily in signs and symbolism, but I must admit that I was somewhat thrown by this-

1.  7 Pounds was released on December 19th, Katie’s 7 month birthday.  That means nothing, right?  Wait…

2. It starred Will Smith, my idol, style guru, and part of my motivation for wanting to come to the U.S.  That in and of itself means very little except that I had questionable taste in TV as a kid, as is shown through my love for the Fresh Prince of Bel Air ( I still like to watch it!).

3.  Will Smith’s co-star in the movie was Rosario Dawson, or Mimi from Rent.  Rent is my favorite musical, the songs from which I used to sing to Katie every night.

4.  Rosario Dawson’s character had a congenital heart defect.  I can’t remember ever seeing a movie where that was a central theme of the plot.  I didn’t know it was part of the story before we chose the movie…we may have stayed home had we known…no regrets.

5. Rosario’s character needed a heart transplant.  She had the pager.  She was connected to all of the “machines.”  We spent some time toward the end of Katie’s life preparing for the possibility that Katie would be a transplant candidate.  I had never heard of UNOS before Katie’s diagnosis with HLHS- tonight it was referred to in the movie, along with a simple summary of how you become a candidate for transplant through UNOS…strange memories.

6.  Half ways through the movie, the song Que Sera Sera came on.  I got goose bumps from head to toe!  You may recall that I referred to that in a previous post, and again, it was a song I loved to sing to Katie.  I used to find the David Gray and Damien Rice version on You-Tube and play it over and over again for my Munchkin.

7.  Finally, Rosario’s scar was made to look attractive in the movie.  It was a thing of beauty.  Once healed, I always loved Katie’s scar. It was part of her. It was one of the things that comprised her being.  The movie makers were right to make it beautiful.

7 coincidences, 7 pounds, 7 months.  Many of you will think that I am crazy, you are probably right.  Regardless, I am just a slight bit twisted by our evening’s entertainment.

Active Reflection

“In order to understand where you want to go, you have to know where you came from.” I wrote that on the back of a wedding picture of Vickie and I that I placed over Katie’s crib the day before her first surgery.  She was just 3 days old.  Reflection is the best motivator, but equally, it is the best perspective giver.  This past week has been rife with reflection-  4 eras of my life overlapped, crippling my ability to get on here and write clearly.

Last Thursday ( the 11th)  I visited Westminster for the first time in 9 years.  I had visited campus once, the year after I graduated, but I hadn’t returned since.  It was fascinating to revisit my first home in the U.S.  I feel so different from the “boy” that  spent 2 years on the hill.  I was just starting to find my way in the world, but hadn’t yet developed a comfort with who I was. In essence, my journey in this country began at Westminster, so it was a bittersweet return given the trials and tribulations of the last months.  I am so used to anwering the question of “how are you doing?” with “GREAT!”-  I love life. I am a very happy person.  I want to share that.  I loathe when people immediately respond to that question with a negative tilt.  Life is great, and I want to celebrate that truth.  Unfortunately, during my return to where my adult development was kickstarted, I wasn’t able to say “great”.  Regardless, the hours I spent on campus were a very enjoyable trip down memory lane…I even got the chance to sit in on an english class with Mrs. Adams- oh, the flashbacks!

This past Thursday (the 18th) I was back at Gettysburg for the first time since Katie passed away. Unlike my visit to Westminster, going back to the ‘Burg was like going home.  I maintain many connections and contacts with the institution, and it’s always perfectly comfort to visit my “college family.”  Yesterday was different because I am different.  Yesterday, I returned with a heavy heart, sad that I couldn’t share my experiences with Katie; sad that I couldn’t share Katie with my many friends at Gettysburg. 

Today was a mass in Katie’s memory.  In the orthodox faith there is a service 40 days after the passing of a person.  Coincidentally, Katie’s 40 day service fell on her 7 month birthday.  Today’s service was more difficult than Katie’s funeral, and more difficult than the service we had a week after she had passed.  Now the ritual and process is gone, and we are left to clearly hear the words of the priest, ponder the reality of our future, and cope with the pain of our loss. 

This evening I was busy painting a portion of our family room that is going to be the headquarters of Kisses from Katie.  In just one week I dealt first hand with 4 different periods of my life.  I actively reflected on who I was, who I am, and who I want to be.  I am still amazed at the opportunities that I have been lucky enough to have.  From growing up with loving parents in Cork, to getting the chance to start the American Dream at Westminster, to adapting to a new culture at Gettysburg, to marrying the woman of my dreams, to fathering the ideal daughter, I have been truly blessed.  It hasn’t always been easy.  In fact, it has often been challenging. However, I’ve always come out the other side better for the experience I have had.  I don’t see that same opportunity from Katie’s death.

The pain that Vickie and I are feeling is not softening.  It is not getting any easier to cope with our loss.  We are, however, getting used to the pain.  For much of the first month after Katie passed away, the unbearable pain would take me by surprise.  Now, I expect it.  I am used to it.  I have adjusted.  On more than one occasion the pain has been so severe that I feel tears flow down my face.  I am not crying, or at least I didn’t think I was. It is unlike any other feeling I’ve ever had. The point of this is not to say that we are down.  The point of this is to say that we are learning how to move forward.  We are looking into our past to find the strength to look into the future with the same hope we had the day Katie was born. 

An unrelated aside-  this past Monday we brought the toys from the toy drive to Yale New Haven Hospital.  It turns out that they stored the toys on the 7th floor, the same floor that Katie spent much of her life.  Contrary to what people might think, it wasn’t difficult to be back.  While being cooped up in the hospital for extended periods was draining and frustrating on one level, it always meant that we were in battle to provide Katie with a life.  Without the 7th floor, we are without that hope.  I miss the 7th floor.  I miss the amazing people that make it so special.  I miss feeling like we had a chance to have Katie in our life.  It felt great to know that while we may be struggling to come to terms with what has happened to our family, we are in some small way providing others with a glimmer of happiness, and perhaps even hope.

I know where Katie got it from

My wife is quite the talent.  Yesterday she was a celebrity featured on the news, and today she is a website guru.  If you go to www.kissesfromkatie.org and click on events there is a little write up on the toy drive, but more importantly, some pictures to mark the event!

Tomorrow morning we are going to join the Milford Police and deliver the toys to the hospital!

Touched by a Katie

You’ve read the articles, seen the newscasts, heard the pundits- the economy is struggling and the financial outlook is bleak.  However, today at the mall we did a little more than meet our goal of stuffing 2 police cruisers.  We almost filled a 14 foot truck with toys for the kids at Yale New Haven Children’s Hospital.  Beyond that, we raised almost $4,000 to buy additional toys and such for those who’ll be spending the Holidays in the hospital.  So, the economy may be down, but people are still good- people saw our passion, saw the opportunity to do good, and they acted…by the hundreds!

It was amazing-  we made our daily visit to Katie at the cemetary at 8:00am, then made for the mall.  The cruisers arrived at 9:00am and by 9:30am we had already almost filled both cars.  The outpouring of support by the police force was humbling.  The Milford Police and their families came in great numbers and with great enthusiasm to support a worthy cause.  The result was a successful toy drive that apparantly went beyond many of their recent efforts.  Our friends and family yet again came out to show their support, but it was those that we didn’t know that impressed us most.  People kept coming all day long, offering their toys to the cause.  It just shows that a vision and a little effort go a long way.

I am so excited that Kisses from Katie got off the ground today.  Vickie and her dad were even on the TV to speak about the event!  News Channel 12 came to interview people involved and it was carried on the news tonight.  I truly hope that we can replicate today’s success in future events, with the view to broadening and deepening the impact our organization can have. 

Personally, the most meaningful part of my day was to see two children with HLHS visit us, and donate toys to the drive.  I look at those 2 boys and their families with such admiration.  I also look at them and see Katie.  Since becoming a father I look at all children with an added fondness, but to look at two boys living with HLHS warms my heart in a way that only Katie could.  To me, the smile of a child with HLHS is a little bit sweeter, a little bit happier, and a lot more familiar. All of the toys and money that we received today couldn’t come close to seeing those two energetic boys smile and live life in a way that all children should! 

Tonight our house seems quieter than normal.  The rush of today’s event is passing and we are home, filled with optimism and excitement about the future of our organization but lamenting the fact that we are in this place…without our Munchkin.  The simple reality is that we can’t have what we want most.  However, we can give others what they want and need-  a “kiss from Katie.”

getting excited

Oscar Wilde once said that “we are all in the gutter, but some of us are looking at the stars.” I had heard this quote a couple of times, but it never really resonated with me until I read it recently.  As profoundly brutal as recent events have been, they haven’t permenantly inhibited my ability to see the stars.  Tomorrow is the toy drive in Katie’s honor.  Tomorrow is the first event of Kisses From Katie-  from 9-4 at the Connecticut Post Mall in Milford, I’ll have the chance to honor my daughter, and work to bring a smile to other kids faces during the holidays. 

What fascinates me about Wilde’s quote is the definitive statement that we are all in the gutter.  At one level it speaks to the fact that we can all feel sorry for ourselves if we choose to.  However, at a deeper level I think it fairly speaks to the reality that we all have hardships in our lives that cause us to struggle.  The main difference between people is how they choose to view their challenges, and consequently, how they choose to live afterward.  Katie’s passing is still very painful.  It still breaks my heart to consider our life without her.  The shock of our loss has passed, and now we are left with the even more stark reality that she is gone.  Helplessness and hopelessness abound.  However, life is far from over, and while our mourning for Katie’s death remains, the sun will come up tomorrow.

I know that tomorrow will be a success.  Anything we do will go toward helping some children in need, and so the day will be worthwhile.  It will also mark the start of an organization that I am excited to be part of.  Vickie and I hope to commit the same energy and passion to Kisses From Katie that we did to loving our daughter, and to fighting HLHS.  I once wrote that our Munchkin was extraordinary.  Well,  it would only be fitting to make the organization that bears her name be the very same way…we’ll do our best, just like Katie did.

1 month and a glimmer of hope

Well,  we’ve survived the first month.  It has been a month like none other- the mental and emotional turmoil, the apathy riddled with anger, the sadness fused with tiredness…While today is a milestone, I have to say that I feel more encouraged and motivated than I have felt since Katie passed away.  Yesterday, we went back to Yale for the first time.  We met with Dr. Asnes to discuss a slew of topics ranging from what happened to Katie to ramifications that Katie’s condition would have on us if we decided to have more children.  While we are as far away from acting on many of these topics at the moment, they are things that weigh on our mind, and so we thought it was worthwhile to engage Dr. Asnes.  While it was certainly daunting to go back, it was also therapeutic and somewhat nice.  I genuinely like many of the people we came to know while at Yale and it was good to catch up with some of them.  It was particularly nice to see Dr. Asnes, and thank him for the care he gave to our daughter.  It was important that he in particular know that the outcome did not change our view of the great work that was done.  Ourrespect and admiration for the team at Yale could not be determined by results.  Much of what happened to Katie was too rapid, too dramatic, and too severe to expect success.  We received supreme care and endless dedication…the rest is left to chance, luck, fate, God, or whatever unknown you choose to believe in.

After leaving Yale, we met a the founders of Brady’s Smile (www.bradyssmile.org) for dinner.  They lost their son, Brady, 9 months ago.  Like us, they started an organization in their child’s honor.  It was remarkable to meet such a great couple.  Annie and Matt have quickly developed a noteworthy foundation for a wonderful cause.  They offered some very helpful advice, provided significant insight, and generally informed us about what lay ahead as we get Kisses From Katie off the ground. While that was in and of itself helpful, it certainly wasn’t the best part-  the best part was being able to sit across from a couple that “got us”, that had been there, done that.  Annie and Matt understood our jargin, our perspective, and most of all our sense of being as we cope with our loss. 

Before we went to Yale and to meet with Annie and Matt, I suspected that I would come home tired, drained, and upset.  It was the eve of Katie’s one month anniversary (sounds weird), and I knew we were in for an emotional day.  Instead, I came home happy, excited, and for the first time since we lost Katie, motivated.  Our situation is still frustrating, or a bollocks as I like to say, but yesterday I saw the first silver lining.  Yesterday I saw how we were to harness these feelings and create positive change. 

So after one very long and bumpy month I find myself at my highest point since my lowest point.  Are we coming back?  Perhaps.  I know there’ll be many more trials and tribulations for a long time, but today I felt alive.  Today, I cared.  Today, I wanted to get out of bed.  I have been doing my best to get back into life over the past couple of weeks, but it has been an inordinate struggle…today wasn’t.

www.kissesfromkatie.org

After a lot of learning, some frustration, and the occasional expletive, Kisses from Katie officially has a website- www.kissesfromkatie.org.  Check it out if you feel so inclined.  There is still work to be done but we wanted to get it live and then go from there.  This is exciting!