Quality of Life

The moment I became pregnant with my first child I began fantasizing about the future.  Unsure of her gender during the pregnancy I had wanted a boy because I had an older brother and while we had our moments growing up, we were always close, and I considered him my protector and defender, so I wanted my first to be a boy.  At the same time, I thought how fun it would be to have a little girl.  I knew no matter what gender she turned out to be, Sam and I would become smitten.  When she was born we both could not have been happier with the outcome, our journey into parenthood began, my dream of becoming a mother came to be, and life was absolutely amazing.  Our little girl was happy and so we were happy, it was that simple.  Then 5 years and 23 days later we were introduced to Sonya, and everything we knew about parenting, about simple, and typical, was essentially thrown out the window.  Our life became rare with a huge emphasis on quality of life.

The phrase quality of life has become our household staple, it is how we respond to every situation and it is what weighs heavily on my heart 100% of the time, but what does it mean?  I realized after a conversation with one of my closest friends recently that when you do not have a child with a life limiting diagnosis, grasping the concept of what quality of life really stands for is about as clear as mud.  It also means something different to everyone, even parents of children with the same or similar diagnosis.  This is one of those tough to understand, tough to explain phrases.  There are many many interpretations of this phrase, but there is absolutely no right or wrong, no better or worse, it is purely subjective.  This topic can cause judgement and controversy but is 100% individual and that (to me) is all right.

We have found ourselves at what I consider a pivotal moment on our quality of life journey for Sonzee.  The point where keeping her needs for sustaining her life and ensuring her quality of life meets head to head.  The crossroads of where the selfishness of parenting a gift from g-d  and respecting the selfless act of what mothering really is, parallel.  This is an extremely difficult place to be.  While I know deep down there truly is no right or wrong, my brain is having a challenging time trusting in that, because there must be.  As we were told yesterday, even if something negative occurs as an outcome to the decision we make, it does not mean we made the wrong decision.  While I want to believe this to be true, it is difficult for my heart and brain to be on the same page, but as George Michael said, "you'll never find peace of mind until you listen to your heart." 

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