And ONE more thing…

You all understand when I say that I can TASTE the grief in my mouth all over again. I am transported to those moments that brought me to my knees. The smell of the day, how the clock ticked, it’s all in slow motion again. That remembrance of praying, begging, pleading that it just STOP and GO AWAY.

I’ve honestly been feeling ashamed. In returning to the grave where I put all the pain from the past 2 years, I became ANGRY – PISSED OFF in fact because I wished she had a heart defect. I wished we could open her chest and FIX this. I WISHED for this??!! The brain is it’s own animal as is the heart. HOW COULD I be so angry that others got off with a heart surgery or two. HOW DARE I compare as if the angst and wringing of hands, prayers were any different. Different sets of shoes but all the same walk.

I can’t compare her to her typical peer group. It’s painful. I can’t compare her to her DS peer group because that is even more painful. I have to stay right here – right now- and stop using comparisons because komparisons suck. That’s right people, yet another word I am going to start spelling with a K because I can’t friggin deal with what it represents. Komplex,  komparison,  kiss my big butt.

There was a post on my Down syndrome board  asking if we would chose to abort if we could do it all over again and that is a dichotomy.   How do I answer that based upon the simple premise? To be or not to be. My path is jumbled, jagged and to reply as if Down syndrome is the only focal point would be a disservice to all that I feel. I WISH Down syndrome was all I had to worry about.