Back off PWS!!

On this last day of May 2015, I want to share this picture.  It is my most favorite picture ever of Ellie, for lots of reasons.  I look at it and just crack up, because it fits her personality so, so well.  She has a story to tell, and when she does, let's just say she talks with her hands! I also love it because she looks so beautiful in blue.

But it means so much more to me.  I see an inner strength that surpasses anything I could've ever imagined when we received the PWS diagnosis.  She wakes up every single morning happy and eager to start her day.  That's more than I can say for me, most mornings.  She has a zest for life that is contagious, and takes in each new situation carefully and joyfully.  She works so hard at, literally, everything she does, and rarely ever puts up a fight.  She truly is an angel in so many ways, and I know David would agree with me, she is totally our angel, sent to us a just the right time.

I think it is fitting to end the month with this picture because I can almost see Ellie saying the words, "Back off PWS!"  I can see the fight in her, to battle this rare syndrome that we were all slapped in the face with, and most everyone else knows nothing about.  This picture makes me want to fight even harder for her and her friends, because each one that I meet has this fight in them.  They deserve a life not plagued by hunger, anxiety, or hurt.  And when I look in these little eyes, I know she is not giving up, so I never, ever will.  We will fight harder, educate and advocate more, and love deeper.

My prayer for her is that she will remain steadfast and trusting to the wonderful One who made her.  When days are good, we will praise Him.  When days are hard, we will cling to Him.  

David and I, seeking the Lord's will and guidance, will take care of her the best way we know how.

So, Back off PWS!  The Spearmans and all the other wonderful, supportive, amazing members of our community will eliminate you one challenge at a time!!