how ’bout this for marketing!

Vickie and I know a couple of friends who’ve had kids in the last couple of months.  We’ve been struck by how different our experience was from a “typical” baby experience.  Strangely,  there were some difficult circumstances that we had to endure that made Katie a great baby to care for. 

At only 2 days old Katie was rushed to Yale.  For the next 3 weeks she lay in an adult bed, unclothed.  When we got her home, she wasn’t used to being held…or swaddled.  While we think she really liked both, she didn’t need them.  She was so content all of the time, and I can’t help but feel that her sense of satisfaction was a function of her difficult stay in the hospital.  Being free to move, unincumbered, with the distinct possibility of being held and cared for made her so happy. 

So there you have it-  HLHS helped make Katie so peaceful.  Who knew that there’d be an upside.  It might be a stretch, but it’s a truthful spin on a heinous situation.  I suppose we have to see the positive in our situation…I think fellow HLHS parents might chuckle, others will just continue to think I’m a little crazy- hahaha.

Feel the burn

Anyone who enjoys working out or exercising knows about the “good kind of pain.”  You are at the pinnacle of a great workout, you’re breathing hard, and the burn excites you.  When you are out of shape, tired, or not in the mood, that same burn is the most vile and miserable feeling known to the exercising man.  Life in mourning is the same.  This week has been filled with the “good kind of pain.”  Katie’s absence is still difficult to come to terms with, but instead of anger or sadness, this week I’ve felt great pride in the life my daughter lived, the impact that she had, the legacy that she left, and the freedom she now feels from suffering. 

As I travelled the country this week I saw people of all shapes and sizes.  As I travelled the country this week I saw Katie in all things beautiful.  I feel like I met more Katie’s (literally), saw more beautiful little children, and interacted with more genuinely nice people than I ordinarily do.  I still wish my roadtrip this week was a time where I was itching to get home to my 11 month old daughter, but it wasn’t, and it’s not going to be.   Thankfully, the absence of Katie in body did not impact the presence of Katie in spirit. 

My peaceful week was capped off by a moving experience at church tonight.  I literally felt like Katie was with me.  I refuse to bring religion into this forum.  I have my thoughts and you have yours- my aim is not to be devisive.  All I know is that this weekend I am celebrating Easter (Orthodox…remember!), and the events in the church have never made more sense or resonated so much. 

A couple of weeks back I remember thinking about Katie’s loss as “our little tragedy.”  While it has changed my world, I don’t want to selfishly use the events of my life to dictate my relationships with others.  I speak of Katie freely, but I don’t want to use our loss as a source of conversation or sympathy.  Regardless, I feel that my newfound recognition that this is our tragedy has made it easier.  We ALL will come face to face with tragedy.  We ALL can choose how we want to cope with the situations that we are placed into.  All I know is that the sun will come up tomorrow.  I am going to be thankful for that fact.  I am going to live life to the fullest, with a smile on my face, and my munchkin in my heart.

muddled…

Thursday personified a day of muddled emotions.  It was 5 months since Katie passed away.  It was the day that Rudy finally got to go home from the hospital.  It was the day that Jack has his 3rd surgery.  I can’t even begin to describe the range of feelings that I had.  I was desperately missing my little girl.  I was celebrating Rudy’s major accomplishments.  I was both nervous and excited for the journey little Jack was beginning. 

Fast forward to Saturday.  Rudy is still at home with his family.  Jack is recovering from his surgery with style and grace.  And us, well, we’re learning to adjust to life without Katie.  One of the predominant but not particularly valuable thoughts that has been sidetracking me lately is the notion that in a couple of weeks my Munchkin will have been gone longer than she was here.  For no valid reason, I have thought about that day a significant amount.  I don’t know why.  I just don’t like that reality. 

The other thought that made me chuckle today was the rant I used to go on with my team all year long.  I used to tell them that I thought kids from Milford were soft.  The team I coach is filled with polite, well-rounded young men who their parents should be very proud of.  However, as basketball players they sometimes lacked the fight and conviction that I would have liked to see from them.  I had this whole theory that middle class children are so sensitized to “being nice” and “playing nice” that they didn’t know how to adjust to  the competitive environment of an athletic arena.  Jack F. is showing me that kids from Milford ARE as tough as nails.  They can still be polite and play nice.  In his case, they can even be as cute as could be, but the determination that this little boy has is remarkable.  Two days after surgery he is sitting in a chair drinking juice.  He is saying please and thank you to his caregivers.  Give me a break!  He is another true tough guy with a million dollar smile and a sparkle is his eyes.

This world is a mess.  We have unreasonable wars, unspeakable inequities, and unjustifiable stresses.  There are saddening events that make us all question humanity…even perhaps question the greater good that exists.  Then there are the stories of Rudy’s arrival home and Jack’s response to his surgery, and hope is restored.  I don’t want to be a heart dad.  I never wanted Katie to be a CHD kid.  I didn’t want labels and stigmas.  Now, instead of negative connotations I see all of these children as sources of inspiration.  I see their families as friends, allies, an people who just might understand me. 

One thing is for certain…the world continues to turn and we never know which direction it’s going to take us! 

Happy Easter everyone.

Pray for my tough friends!

I am so happy tonight.  I am furiously angry tonight.

Rudy went home today.  After 6 long, hard months Rudy took his first drive home to be with his parents and siblings.  I am so happy for Rudy and the entire family.  We are all too familiar with the long days at the hospital, the frustration of the unknown, and the burning desire for normalcy.  We also have incredible memories of the day we took our daughter home for the first time…and the second time for that matter.  We hope the entire family spends their first of many nights peacefully tucked in their own beds.

On Thursday, another couragious and incredibly cute friend of ours undergoes the third and final step of the 3 stage series of operations to treat HLHS.  While we pray and hope for Jack as he embarks on this journey, we hope that our short term trepidation creates long term peace and happiness for all of Jack’s family.  He is a bright eyed little boy who is on the cusp of a major milestone.  Jack’s family was a major source of support, encouragement, and motivation during Katie’s struggle. 

Please keep Rudy and Jack in your thoughts and prayers!

I feel incredible joy for Rudy, Jack and their respective families.  While I’m sure there are nerves and fears, they are currently moving toward a more positive tomorrow.  My anger tonight is with the fact that we all need to show such thanks for a 6 month old to go home, and for a 2 year old to be undergoing his 3rd surgery.  In what deranged world is this our normality?  I remember my childhood.  Friends, sports, playing in the dirt…life of a child is supposed to be easy.  Children are supposed to be carefree.  While I am annoyed by the trials and tribulations that both Jack and Rudy have and will endure, I hope that their future is filled with kid-like behavior.  Keep on truckin’.  I continue to be amazed by the courage and precociousness of these young ones.  On the surface they look like any other child, but I truly believe that when you look into the eyes of these children you see a maturity that is unmistakable. 

Vickie, Me and Jack at our Toy Drive in December!