Sunday, April 8, 2012

My D Day

One year ago today I spent the day sitting outside of church crying.  First of all, there wasn't enough room to even stand in the back.  Second I didn't have the heart to pretend, to go through the motions.  Just two days prior John and I had heard the words Rett Syndrome for the first time.  I wanted so badly to believe that there is no way Emmy could have such a horrible disease but in my heart I knew.  The day before we had been sitting on John's parent's deck and Emmy was looking at their cat through the glass door.  Just a few short months before she had been saying cat and smiling.  Now when we tried to get her to repeat it, she just stared blankly ahead.  When I think about what it sounded like to hear words coming from her mouth my heart breaks again and again.  When I would hear those words I thought it was just the beginning.  But instead it was slowly coming to an end.

Although we weren't officially diagnosed until JULY, yes JULY, a whole two months later, last Easter weekend marked the beginning of what has been the bumpiest road I've traveled.  There are times when I want to scream.  And there are times when I want to wrap her up, hold her and make it all go away.  There are times when I accept Rett Syndrome and then there are times I feel certain they'll find a cure.  Whatever the future holds for Emelia I just want to love her.  I want to take the time to understand her, to give her choices, to work as hard as I can to help her learn and grow.  She is a beautiful, sweet little girl who deserves it all.

So I'm certain each Easter weekend will stir up these emotions again and again.  I will shop for things to put into their Easter baskets and remember when she used to walk up to her Easter basket, sit down on the floor, pull out a special book I bought her and flip the pages.  I will long for the time before I even knew Rett Syndrome existed...back when I allowed myself to dream of Emelia's future.  I will take the time to mourn the loss of what I thought would be.  And then, I will shake it off and focus on the good, all the blessings I have in my life.  I will ask God to give me strength, patience and courage to tackle what lies ahead and have faith that He will help me through.   

1 comment:

  1. Perfectly said. Although I can't know your experience personally as each of our lives and girls are unique, I can definitely understand the journey! And I am truly happy to have met you this past year.