A Very Special Case.

Almost 3 years ago my life changed. I stepped into a world that was no longer comfortable. A world that can't be fixed by a prayer. Where asking for healing doesn't always mean the pain or the sickness goes away....It was in September, 2010 when I saw a perfectly beautiful unborn baby full of deformities and disease before he even took his first breath. I was told over and over and over again that my perfect baby was made wrong. That the child inside of me was deformed and incomparable with life...(I hate those words "incompatible with life", they make my stomach turn...I don't think they should be formed into a sentence....If a child is born alive then that alone is a child "compatible" with life.....Right?!) During the days leading up to the birth of Case I belonged to a "high risk pregnancy" board online. I read a post of a young mother who aborted her daughter because the Dr.s told her of the horrible things this girl was up against.....

Yesterday I needed to get my picture taken for my drivers licensee and when I looked down at my old license, I saw a young girl who decided she would hold onto her organs when she went on to heaven....... 4 years ago I was living in a different world. A would where The Children's hospital was just another hospital I've heard of and backpacks were for books. 4 years ago I had 3 healthy babies and terminal sickness was something I rarely thought about. 4 years ago when I got my last drivers license picture, I opted out of organ donation because I didn't want my organs "eyed up" and I didn't know I'd ever be living in a world that children die waiting for the gift of life. 4 years ago, I never dreamed I'd love a short, one kidneyed, webbed toes little man with all of my heart and someday, when I do pass I will leave my organs behind and I encourage you to too. Because, some day in 4 years or 14 it could be your loved one dying for the gift of life. ...

*Warning: This post starts out whiny. So, beware. This 28 year old woman is about to throw a small tantrum... For the first time in awhile I felt fearful. I was really hoping for a break. For all of the chaos to stop and things to just be "normal" for awhile. I've been told it gets easier, that things slow down in this special needs, medically complex world but so far I've seen none of the sort. When we got Case's CAT scan results Monday, I saw real concern on the surgeon 's face. It is a face I will not forget and is burned in my brain with the other faces of fear and sorrow from his previous Dr.s. You see, in this world you learn that Dr.s don't always have answers and their hearts are as big as their brains. They really care for my boy and are doing everything in their power to help him, to make him better but their power only reaches so far. It's when things get tough that I hear God the loudest...He doesn't promise painlessness or pe...