It's the Knowing

Today I grieve with and for a friend.  I knew her when she was single.  I knew her when she met, dated and fell in love with the man that is now her husband.  We shared the joy of her pregnancy and the birth of her precious, beautiful baby boy.  Now, we share the piece of genetic information that will change their lives.  It will change the way they see the past, present and future. This new information has thrust them into a world that was never even on their path of life.  Like a sharp swerve made on a road to avoid a car accident.  The smooth, comforting, safe path that their lives used to follow is forever gone.  Now, their life is occupied with support groups, treatments and interventions.  I wonder if they will ever ask themselves the question, "What if we had never known?"  Many families diagnosed with their sons fate never know until a situation occurs that exposes its ugly head.  It forces the old doors that I had long ago closed in my memory to fling wide open.

That faithful day back in 1991 when we received our diagnosis.  It forever changed how we view the past, present and future of ourselves, our children and our family.  It forced me to question the way I thought about myself.  It has tried my patience and my knowledge of all things that I held dear.  It has tried the sanctity of marriage to the end of its thresehold.  But, I have also learned. 

Often, I have learned more than I ever cared to learn.  I've learned about things that I never would have otherwise become an expert in.  I have obtained life-long friends that I never would have met in that "other world".  I have been humbled by the caring and kindness of others.  To me, it's like a precious gift that I have received.  A gift that was wrapped carefully in tissue and fitted with styrofoam like a fragile piece of art.  As I peer into the box I cannot see all of it and I am constantly discovering new facets of the gift.  I feel as if I am somehow priviledged and unique to have received it.  I feel special.  I show it to a stranger in the grocery store that quickly turns to me and says, "What is it???"  There is no way to really share the gift.  It's characteristics can only be learned by living with it.  It cannot be taught in a book.  I wonder if Dr. Randi Hagerman ever knew how this small piece of genetic information would change and shape our life when she revealed it?  Was I happy when I first got it?  No.  But, today I am thankful for knowing.