>>ONE YEAR AGO...

One year ago today I was sitting in the NICU cuddling my darling Clover.  She had just turned one month old.  The doctor walked in and shared some news with me that would forever change my life.  "Clover has Prader Willi Syndrome."  The words came out of her mouth so quickly there was nothing I could do to stop her from saying such an awful thing.  Those words stung my heart and at the same time caused a two thousand pound boulder to drop from the sky right on to my chest.

A year ago today was the hardest day of my life....followed by an equally hard week.  It was a lonely time.  The words Prader Willi Syndrome never left my mind, but I didn't want to talk about it with others either.  At that time, I felt like no one could possibly understand.  Nobody knew what PWS was, and even if I told them, they still didn't really know, nobody could understand the heartbreak I was feeling, no one could understand the fear I had inside me, no one could understand what it felt like to learn your perfect baby has an incurable,  life threatening disorder and there was nothing I could do about it.

I was emotionally exhausted, I was very scared, and I was very, very sad.  (I was also 7 months pregnant).

One minute I was thinking, "okay, we can do this!" followed by a breakdown the next minute asking, "how are we going to do this?"

As time went on, little things would happen that would fill me with hope.  Like the time the therapist said how great it was going to be for Clover to have a little brother to watch and learn from.  Or the time I saw a picture of a little boy with PWS riding on a dolphin during a family vacation.  Or the video I watched of a young girl with PWS walking for the first time.  And meeting other parents just like me who truly understand....whose kids have feeding tubes and oxygen and low tone and a spark in their eyes just like Clover.

I still think about PWS everyday.  It's a part of our lives now and will always be.  And I still have hard times and struggle.  But, I have learned so much this past year and have grown in ways I never knew I could.  Clover has come such a long way too.  She works so hard every day and she has a smile on her face the whole time.  She inspires me and makes me want to be a better person.  I love her so much and am thankful everyday she is a part of our family.

One year ago my heart was broken into a million pieces.  Today, my heart is full and  bursting at its seams.  I am happy and hopeful and very thankful for all that I have.  Today is a good day.

Clover (one month old) with daddy.  

She's had him wrapped around her little finger since the day she was born.

Clover today (13 months old)....and still daddy's little girl.