Friday, June 8, 2012

Having Your Heart Walk Around Outside Your Body -- Celebrating Joey's Heart Day

Could a year really have passed?  How is it possible? I read a book where the author said that having a child was like having your heart walk around outside of your body.  It is so true.  Having children, especially when it is a time when you are separated from them, is literally like having your heart walk around away from your own body.  And it hurts. And this happens not only for heart surgery or other medical procedures, but it happens on the first day of school, the first time you drop them off for a play date or the first time you have to go out of town sleep under a different roof.

Today we celebrate Joey's Heart Day. It was one year ago today that we handed Joey over to the nurses and doctors at the University of Michigan Congenital Heart Center. 

There is life before his heart surgery and life after.

Life before was filled with much anxiety and worry.  The fear of the unknown. When we were about 24 weeks pregnant we found out about Joey's congenital heart defect.  We knew then that he would most likely have to have surgery due to the location and size of his Atrial Septal Defect.  

Life before heart surgery was hoping he his lips wouldn't turn blue or go into heart failure.

Life before was spent not knowing what life after would be like.  People told us not to worry.  That he would be fine.  

I tried not to worry. I tried not to think about it, but it was always in the back of my mind.  It's this fine line of trying to be super positive and having faith versus trying to prepare yourself for the worst.  It never works.  The worst comes when I am least prepared and feel the most confident. I guess as a protective measure, it is sometimes just easier to go to the dark places and be ready for it to happen.  

Then there was life after heart surgery.  This smile--his first post-surgery smile--says it all.

Dr. Bove was Joey's heart surgeon.  He was amazing.  He met with us the day before and explained to us step by step what would happen.  Before we left he asked us to please send a Christmas card every year to give him an update on Joey.  

 One year later there is still the reminder we see multiple times a day.

A reminder of his fighting spirit.  Of the lessons he teaches us every day.  Of how much harder he has had to work in his short life for things we take for granted like eating, talking and walking.  Of the amazing friends and family and doctors and therapists and early intervention teams that have helped Joey get to today.

Every day we have this memory of how precious life is and what it means to just try and do your best in every way possible.  

As my copy of "Positive Thinking Every Day" by Norman Vincent Peale says for June 8:

The way to happiness: keep your heart free from hate, your mind from worry. Live simply, expect little, give much. Fill your life with love. Scatter sunshine. Forget self, think of others. Do as you would be done by. Try this for a week and you will be surprised.

Joey-- thank you for being our little lover and fighter.  For your unrelenting spirit and courage.  Happy Heart Day, Super Joe!


  1. Happy heart day, Joey! you are a rockstar!

  2. Yay happy heart day :) I know exactly how you feel. Our surgery was in Feb.

  3. So, so behind but this is one I HAD to comment on. Happy Heart Day Joey!! (Claire's heart day is one day after his)

  4. I stumbled across this post on pinterest & I am sitting here teary reading this. I also have a heart baby as I like t call her. We didn't know after she was born & was told a simple cath would fix it but there where other issues that stopped that from happening. I remember the morning we handed her off for her surgery like it was yesterday no matter how amazing the hopspital it is still the most heart breaking & sickening feeling handing your tiny baby off to those nurses.


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