Sunday, August 19, 2012

Love my little warrior

The other day, as I sat in another doctors appointment, I had a huge awakening. Life as an HLHS parent is filled with many joys and just as many sorrows. The most important thing is how you look at each one. For all of the fellow heart moms and heart families out there.... I'm sure alot of this will sound very familiar.

1. We were given the joy of a beautiful new baby.
           Our joy was crushed with the diagnosis of HLHS.

2. The delivery of our bundle of joy was a wonderful experience all its own.
          The sorrow of the impending Norwood surgery and the unknown was always looming.

3. The joy of hospital discharge was the first step to her becoming our own.
           The realization that we can be admitted again at any moment is never far from home.

4. Every little milestone is a huge accomplishment for our little fighters.This includes even a pound.
          Sorrow is when they get sick and lose that pound in the blink of an eye.

5. The overwhelming feeling of relief and joy when seeing your baby in recovery even with tubes coming from everywhere.
         The dread and guilt when a complication is found.

6. Looking forward to the birthday parties and life events that each day become more and more a possibility.
       The horror when we hear that another little heart warrior has earned their wings well before their  time.

7. The overwhelming pull that our heart warriors have on complete strangers no matter where we journey.
      The cringe when we see someone touch our baby's hand and wonder how many germs they have just spread.

8. The pride we all have in the hospitals and staff that we have entrusted our babies to.
       The worry that our trusted surgeon may retire prior to surgery number 3.

9. Finally the never-ending joy that... our little heart warrior was given to us and we will never be the same because of them.

I realized this as I sat in yet another doctor's office worried about c-diff and how to prevent and treat it. There will always be something to worry about. There will always be a twinge in my stomach when she doesn't act like herself. Nothing is ordinary with her anymore, because she is not ordinary... and never will be.

Love my little heart warrior!!!!

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