Thursday, November 1, 2012

Climbing the mountain: 1st Birthday Overlook

1 year of so many unfathomable emotions, experiences, memories, up and downs have gone past us by.  Olivia has survived her first year.   She keeps crushing all the goals we set for her: get past her Norwood, survive interstage, get past Glenn, survive to 1st birthday.  I feel like with Olivia we just have to take it a year at a time.  Riding in the car with Melanie this morning, with Olivia giggling in the back, I said "now let's make it to her 2nd birthday!"  She's gotten the best care from so many doctors in Philly and Louisiana, we are giving her every chance possible to thrive and surpass our biggest goal for her; be completely happy and to live long past Melanie and I. 

Looking back through the year besides loving the heck out of each of our kids, the biggest feeling I have had is helplessness.  I am helpless because I feel that any day or night Olivia could have a huge setback and never recover from it.  She isn't a ticking time bomb, but gradually changes can happen and things might get overlooked.  We really don't know her true current status unless she was getting echo's, and cardiac mri's every week.  The doctors say she looks great, and is a model HLHS baby.  In the back of my mind there is always the constant worry and doubt.

I am a year older as well, with a good bit more grey hair, but a completely different perspective on life.  A year and a half ago I was so carefree, and living it up.  I had a few hobbies I was very passionate about, like fantasy football or being a crazy Saints fan.  Before if I missed a quarter of the Saints game I'd be freaking out, now it doesn't matter.  Now I'm just cherishing every minute I have with my children and family.  I find that the things that were important to me then are very trivial now.  It might sound sad, but I feel like the happiest guy alive.  I have my wife and 3 beautiful children and Olivia just turned 1.  Nothing in life is better than this. I feel vain talking about myself on Olivia's birthday but I was hoping to frame how I have felt this year, and just how exciting this milestone is. Today is the biggest day of our families' year because we have made it.

The year ahead will probably be more of the same feelings, with tons of doctors appointments, a trip to Philly, a hospital stay or three.  I have no idea, but my goal for Olivia is to make it without needing the 3rd surgery.  Hopefully, that can wait until next year or the year after.  Possibly after her 3rd surgery we won't have all of these short-term goals, and we can just focus on being a little more normal.  I know Olivia will never be normal, but hopefully the Fontan flow will work with her body and allow her to live a long happy life without needing any extra surgeries or a transplant.  My fingers are crossed! 

Happy Birthday my sweet little princess Olivia.  You are a true Xena warrior heart princess and we are very proud of how far you have come and will go.

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