Wednesday, November 12, 2014

Watching the World

I sit within the walls of my hospital room and peer out into the world.  Snowflakes dance across my window as I yearn to breathe in the crisp cold air I know whirls beyond the glass.  I touch the window hoping to drink in a bit of that fresh air through my fingers: hoping to breathe in some life from the outside world.  
As I sit within the walls of this hospital and watch the snow fall, I cannot help but think about all the incredible people I have in my life and all the amazing opportunities I have been gifted. I find myself reflecting on memories, dreams, the beautiful and meaningful gestures of people, conversations, the new and the lasting relationships I am so lucky to have: the life that fills me.  It is weeks like this I am reminded just how beautiful my life is, and how grateful I am for every breath and every person who makes them memorable. 

Empty Halls and a Life all My Own
Being in the hospital is always both a mental and physical battle.  As I sit within the walls of this hospital room I can't help but think of how the world continues on as normal, regardless, of where or what I am doing.  Time never sits still.   I look out my window and watch the snow swirl around the people as they come and go from the hospital: leaving footprints in small drifts of snow.  Throughout the day many more people make the trip to and from the hospital entrance: always in a rush to get to the next place: never taking a glance at the sky and its falling beauty.  As night descends the hospital becomes quiet.   

But, I am still here.  I am still locked within these walls.  I cannot go home to my boys, to my life, to school, to my friends.  For a few more days this is my home.  But honestly as CF progresses this place will become more and more my home.  It's filled with the most generously caring people and My Team who I trust with everything I have left.   So, I put my shoes on, grab my mask [CF guidelines], and take off to explore the rest of the hospital campus.  As I walk the empty halls I realize how during the day these halls are filled with people doing their jobs, helping people, saving lives, but tonight Mark and I are the only ones what seem to be on the entire hospital campus.  Everyone is home, tending to their lives: with family, friends, and living as if time nor CF has any bearing on them.
The boys came to visit.

I get back to my room, send Mark home to the boys, and find myself staring out the window again thinking about life.  I think about how the world continues on no matter how long I am stuck behind these glass windows and walls: life continues to move on.  It's mentally difficult for me to be behind these walls.  I feel I am suffocating, I am constantly wondering what I am missing out on in the world, if I am being forgotten, if I am making any difference, or just adding to the worry of the people I love.   I wonder what I am doing to Mark's life, how I am stealing it from him.  What a different life we are living than we had originally dreamed of.  How unfair it is to make him see me this way: hospitals, appointments, PICC lines, countless rounds of antibiotics, PFT's, cocktails of pills, side effects, exhaustion.  I think it's harder for me to watch him, watch me go through it all.  He tries to be strong, but I see how much it all hurts him, and how scared he really is.   As we walk together through the empty halls of the hospital, I am thankful for the mask that hides my heartbreak.  

You cannot watch a snowflake freely fall from the sky and know exactly where it will land.  Nor can you chart the exact journey of your life and where it will lead you.  My life is like a beautiful snowflake dancing upon the crisp air, never knowing its journey or where it will land.

This past week I underwent Sinus Surgery and a Bronchoscopy.  Both surgeries went great, but it was the days following the surgeries we had to be concerned about.  After several days in the hospital I was hoping to rejoin my normal life outside in the world, but my body had other plans.  Monday morning I spiked a 102 fever.  Things didn't look good for me making a case to go home, but don't think I didn't try!  A PFT  [lung function test] was done and had plummeted from the previous week's 50% to 37%.  Another big factor not allowing me to go home.   Treatment plans were evaluated and changed, and a new course has been charted.  My body seems to get better at fighting me every time, but my mere will and strength of mind will always be stronger.  It's time to fight. 

Today, I am so grateful for My Team of pulmonary doctors, ENT, nurses, pharmacist, techs, receptionists, and respiratory therapists who I daily owe my life to: who have all so graciously made me feel like a special part of their lives.   The most gracious and heartfelt gratitude to each of them, always.  Thank you.

My life may be made up of flurries of snow that dance across the frigid South Dakota air, creating a beautiful journey to its destination.   Life has to be shaken up a bit in order for the snow to dance.  This is my life.  Every day is beautiful.  Every breath is a gift.  Love to each of you.

Breathe in that life giving brisk air today, for me. 

Thank you all for the wonderful thoughts, encouragement, cards, messages, and beautiful flowers: they all mean more than you know.

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