NO FEAR..yeah right!

"No one ever told me that grief felt so like fear" - C. S. Lewis

I almost don't remember that life anymore.  The one where I could run out the door at a moments notice.  The one where I could stay out till the sun came up and sleep till dusk.  The one where I had NO FEAR, because I had complete control of my life, or so I thought.

Now I look back on it and realize that I was living in a bubble.  In this bubble, old people who had lived long, fulling lives were the ones that I mourned.  Death seemed like the last stop on a very long train ride...the one that you were ready for.  God was the spiritual figure that I spoke to when I was in need of something.  Friends were people who I had fun with.  Life was simple and easy and smooth.  I lived life with NO FEAR, because I did everything right.  I went to college, went to grad school, got a job, met a great guy and was on my way to a long, happy, fulfilling, easy life where I controlled everything and felt NO FEAR.

Please don't get me wrong...my life is very fulfilling...and much happier then even I imagined.  Of course my life is very different. I fall asleep when the sun is still out, but that is the PM sun, not the AM sun.  I can't remember the last time I dropped everything and ran out the door.    My perceptive of death has changed by leaps and bounds...and I understand deep inside my heart what it really means to grieve.  God is the spiritual figure who I praise more, then I seek (but don't be mistaken, I still seek him out plenty).  Many of my dearest friends are women who I have never met, or whom share the common bond of being a heart mom.  And every day, no matter how hard I try, I carry FEAR with me.

For a while now, I have been trying to get rid of that FEAR.  Telling myself I needed to enjoy every second with Xavier and not to dwell on what I can't change.  But I am a mother, a damn good one, and so I need that FEAR.  It is that FEAR that keeps me on top of HLHS.  That FEAR keeps me asking questions, reading medical journals, talking with other mom's who came before me.  The FEAR keeps me pushing for the right direction for Xavier's heart.  The FEAR keeps me motivated, pissed off just enough to stay one step ahead.  In my life I grieve almost a loss a day.  I grieve the loss of babies I never met, and the ones I held close to my heart.  I grieve with Xavier when he cries so hard because of his FEAR...fear of the blood pressure cuff, the pulse ox, the ECHO, those people who crowd around him and invade his space.  So for me and millions of mother's like me GRIEF and FEAR are interchangeable ..and even if we don't want to admit it GRIEF and FEAR live side by side with LOVE, FAITH, STRENGTH and JOY.

So do "WE" live with FEAR and GRIEF...of course we do.  We have been handed a very difficult deck of cards.  But don't be mistaken..we have learned to channel that FEAR, that GRIEF and make it work for us. Make it work for our children and our families.  I will embrace my FEAR and become a mighty warrior, just life Xavier,  because of it..not in spite of it!!!