>>PWS

So.....Clover has Prader-Willi Syndrome.  Everyday I am reminded of this.  And everyday it breaks my heart.

I wish more than anything that there was a cure for this awful syndrome.  I have never wanted anything so badly in my life.

It's a hard syndrome to explain.  In fact, if I am going to be honest, I really dread explaining it to others.  No one "gets it."  There is just so much to it, that it is impossible to explain it all in a two minute casual conversation.

When I learned of Clover's diagnosis, I was in Billings alone.  Curtis was in Thermop at work.  I was sitting with Clover in the NICU when the doctor came up and said, "we have a diagnosis."  My heart sank because I knew we were waiting on results from three different tests to come back and I was hoping that all three would come back negative.  If we indeed had a diagnosis, then that meant that one of the tests came back positive.  The doctor stood next to me and out came the words,  "Clover has Prader Willi Syndrome."  I just kind of sat there in a daze and listened to all the doctor had to say about it.  I stayed calm and tried to ask intelligent questions....tried to act okay with it...tried to act like my world wasn't crashing down around me.

When the doctor left, I stared at my sweet baby girl, held her little hands, rubbed her round little head full of strawberry blond hair, kissed her round cheeks and then it was time for me to share the news with her daddy.  I called and shared the news with Curtis.  I tried to remember everything the doctor had said.  We were both kind of quiet as the news sank in.  "What does this mean?"  "What does the future hold for her?"  "How are we going to do this?"  We had a lot of questions.

When I hung up the phone I completely broke down.  I burst into tears and cried and cried.  I didn't want it all to be real.  I tried to imagine that the whole day was all just a dream.  That she didn't really have Prader Willi Syndrome.  That the doctor never said those words.

After learning of the diagnosis, I had to wait three days to see Curtis.  Those few days were some of the toughest days of my life.  I probably shed a million tears those few days.  When I held Clover, my eyes would fill up with tears.  When a nurse gave me a hug, I would break down.  If someone so much as looked at me, I would lose it.  My heart was broken into a billion little pieces and I didn't know what to do.

It was never the "why me" that I felt.  It was the "why her?"  She's so wonderful and so innocent and so pure....why does she have to go through this?   

My heart is still broken, and I still have my moments of weakness.  But I have hope.  I hope and pray for a cure one day.  I hope and pray that Clover won't have to feel hungry for the rest of her life.  I hope and pray that she will be happy and have a wonderful life.  She has already brought more joy into my life than I ever thought possible.

I know that we were meant to have Clover.  It seems like she has been ours forever....even though it's just been a few months.  It seems like a part of her has always been with us.  She was meant for us and she was meant to have a little brother.  As much as I wish that Prader Willi Syndrome didn't exist, I have to trust that God has a plan for us and that life for our little family is happening exactly as it should.