Confessions of a TERRIFIED heart mom...

As heart moms, we look to each other for guidance, advise, encouragement and hope.  We look to those that have come before us to light the path that we walk.  The world of CHD really is like a country road at night...in the distance you can see tiny specks of light..of hope...but most of the time we walk in the darkness.  Just when we think that we will be consumed by the darkness  a car drives by and lights the way.  Those that came before come to our aide...lifting us up, relating to how we are feeling and knowing just what to say to help us adapt to this life.  

When I first learned about Xavier's heart, I was introduced to some amazing moms and babies who were living with and beating HLHS.  I clung to their stories like a person lost at sea, clinging to a piece of wood.  Almost drowning them in my desire to just keep my head above water.  I asked a ton of questions, called them crying and prayed that their story would be our story.  I did all I could to stay away from the stories of those sweet babies that did not make it to the Glen.  To tell the truth, for the first year of Xavier's life, I had myself convinced that all we needed to worry about was making it to the Glen (stage 2 of Xavier's repairs).  Once we were past that "critical" stage, we would be okay.  

But in past few months, reality has smacked me hard.  We are losing babies and children well past their stage 2.  They are doing well and amazing us one day...and gone the next.  Some are getting their special gifts of a new hearts...living years with that gift, only to be gone...with little or no warning.  

People always say to me "your so strong" or "I don't know how you do it".  But they don't see me when I am alone with my thoughts.  They don't know the debilitating fear I feel on a daily basis.  I know that you can't have faith and live in fear...but to be honest, in this life of a heart mom..it is just impossible to live without fear.  I don't want to lose my baby.  I don't want to see him sick or in pain.  Horrible and terrifying thoughts of what life might be without him hit me at the strangest times.  I get physically sick when I think that right now, what I consider my worst nightmare, is someone else's reality.  I go to bed every night begging God to just take me first...I can't live in a world without Xavier.

I have learned to cope..learned to live life, enjoy myself, be happy.  But I always carry that terrified  woman with me.  For so long I was ashamed that I was so afraid...but a heart mom who has walked this road ahead of me and for much longer told me to "live with my fear and stop running from it...you can't fight it unless your looking it right in the face"

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!!!