Beyond All Hope

To exist is merely to take in air and exchange it for time, but to truly live is to be filled with the breath of life: brimming with love, gratefulness, and hope. 

The pursuit

Tears freely fall from my eyes and kiss the tops of my cheeks as I search for the right words to express the overwhelming emotions I feel today. Each tear a culmination of a journey that at times I thought couldn't be possible. Each riddled with the trials, heartache, devastation, and pain of the past months. They're also composed of the disbelief that we actually made it: that we did it. I say "we" because it wasn't just me that got me to this point, it was the tireless work of so many people. Those tears are also enriched with the compassion, love, and confidence of those same people. 

When I began graduate school the fall of 2013, only a select few people knew about my CF. I didn't want anyone to know. I wanted to do this on my ability alone. I've never wanted any special treatment, any favors, or to be seen

differently than my peers. I wanted the bar of expectation to be just as high as everyone else's, if not higher. I wanted everyone to see me, first and foremost for me, not CF. Most of all, I didn't want any pity. Within the first few days I was forced to tell a few more people about CF, as I had started the first semester with an exacerbation brought on by hemoptysis (coughing up blood). I got through that course of treatment, and would be free to pursue the semester hiding CF until I had a serious episode of hemoptysis during my student's jury (a performing final in the world of music). I was forced to tell the rest of my professors and colleagues the truth about CF and my life. The very thing I was tirelessly trying to hide from them all was becoming more and more impossible. Little did I know, that would be the first of many events that CF would impact during my pursuit of a graduate degree. Little did I know what CF would have in store for me the second year of graduate school. It's still unbelievable to me, the road I've journeyed to this very day. 

Six months ago I couldn't walk across a room, I couldn't put clothes on, let alone sing because of complications brought on by CF. I remember the tears of devastation overwhelming me, not because I couldn't bound up the steps like I used to, but because I couldn't sing. The mere thought of never possibly singing again was so very devastating. Everything I had known and loved had been pulled out from under me. I felt as if I had completely lost who I was. 

So, some life changes were mandated, but the pursuit of finishing graduate school was not something I was willing to sacrifice. I knew I had to do whatever I possibly could to finish what I had begun. CF was not going to win that battle, nor will it ever. The final semester was not easy, and it was filled with a lot of tears. But it is something I wouldn't trade for anything. Up until about six weeks ago I could still hardly sing, not knowing if my final graduate recital would even be a possibility: the very thing I had dreamed of accomplishing. Again, the faculty and my colleagues went above and beyond the call of grace to be ever so supportive and encouraging. I have been shown more grace by them than I deserve in a lifetime. Little did I know exactly what I'd all learn from my semesters at graduate school. Yes, I learned to be a better musician, better teacher, and gained better insight and knowledge into music as an art form, but most of all I gained perspective into what it means to truly live, love, and be grateful for every person that fills my life.

 

The Honor of a Lifetime

Last night, in a recital hall filled with the most incredible people, I gave my graduate lecture recital. From a hospital bed and oxygen literally 6 months ago to a stage performing some of the most difficult music I've ever done. I cry because it shouldn't have happened: all odds pointed towards no. I cry because as I looked out into the audience I saw my own reflection and the belief that they each had in me. I cry because of the grace I was so generously shown. I cry because I know it wasn't just me standing on that stage, it was every person who poured themselves into me over the past two years. I cry because CF did not win. We did. 

I reflect on these past two years and it's hard for me to fathom the journey. It's hard for me to realize how quickly they have slipped through my fingers. What is most difficult for me is the thought that I must start a new chapter, move on from those relationships that have become such a significant part of my life, to start a new pursuit: a new journey. 

I leave you with a phrase that meant the most to me in one of my recital pieces, "Beyond all hope, I prayed those timeless days we spent might be twice as long." I look back at my time, relationships, experiences, and lessons learned, and I wish each moment would have lasted twice as long. Beyond all hope you each believed in me, filling me with more life than you each will ever know. Thank you will never be enough. Love to you all. 

Thank you to every person who made last night possible. 

Day 37 - Breathe Bravely Challenge

Finding the beauty in every breath.

So today is marathon day. Ok, I am not running 26.2 miles, but it sure feels like the last two years I've been training for such a monumental event. The road has not been steady, easy, nor straight to get here, but the finish line is in sight. 

Much of the day has been spent holding back tears and keeping myself from being overcome by emotion. It's partially disbelief that I've actually made it here when all odds were against me, but mostly it's the overwhelming thought of every person that has helped me get to this point. Each of them could have given up on me long ago, but they didn't. They didn't have to show me such grace, support, and encouragement, but they did. For each of them I will always be so truly grateful, and forever their imprint will be upon my life.  

Now, time to cross that finish line. Love to you all. 

Day 36 - Breathe Bravely Challenge

Finding the beauty in every breath.

The most magnificent and honest beauty comes from the actions and gestures of those who silently support us, encourage us, and believe in the beauty of who we each are. They have dedicated themselves to bettering those around them and selflessly serving. 

Who are these irreplaceable people? All the amazing nurses in my life.

It's National Nurse's Day and this is for each one of those incredible people who have touched my life in so many ways.  The very life I have is because of each one of them: their tireless support, love, and tenacity. I have had the good fortune of having so many wonderful and memorable nurses over my lifetime thus far, and each one still is so very special to me. My life is so very rich because of the presence they have each had and the lasting impact they have cultivated in my life. They are my family. They've cried with me, they've celebrated with me, and they've fought beside me. For each of them I am so very grateful. Love to each one of you.

Hug a nurse today. 

A Mother's Fight - Guest Post Written by Emily Janssen Petoske

[Blog post written by Emily Janssen Petoske, CF mom of 6 yr old, Reese]. 

I listen to the rhythm of her breathing as we lay cozied up together like spoons...our favorite place to be.  Quiet.  Deep. Steady.  Seemingly effortless.  Tonight, we get the special treat of a mommy/daughter slumber party.  I lay my hand on her chest and pray...something I do daily. Pouring prayer over her body and her spirit...and wholeheartedly, passionately crying out to the Lord for a cure.  I know the truth; I know what lies inside her little body…the beast we know as Cystic Fibrosis.

She stirs and I hold my breath and feel my whole body tighten as the rhythm of her breathing changes.  I'm tense and silent stricken- preparing to hear the dreaded and labored cough steal my child from slumber. Gently she eases back into a peaceful sleep. We have escaped the beast for this moment.  I try to relax but never fully can.

The beast. Cystic Fibrosis. This is why my mind cannot quiet down in the still darkness of the night How could I ever explain the motivation that drives me, in a hope to drive others?  Where do I draw the line between brutal truth and self pity, the daily life that is our reality and the gripping fear that resides in my soul.  With each breath, I feel an unfair mix of gratefulness swirled with unrivaled guilt.  Grateful that I am given the gift of each breath, guilty that my daughter was not.  So I will take a moment to look at CF, not to evoke feelings of pity, but to reveal the truth. 

This time of year is always filled with added emotion for me.  Our daughter Reese’s birthday is in the spring, and 10 days following the blessed day of her birth, was diagnosis day.   The beauty and freshness of spring, while anticipated and so appreciated, evoke the memories of those first few months of Reese’s life, which truthfully, were really dark times for my heart.  The year Reese was born, the Cystic Fibrosis Foundation’s national fundraising event, the Great Strides walk, followed 6 weeks after her birth.  This is the time of year when we, as a CF community, each affected by this beast in some way, link arms and attempt to raise money to buy research for a cure.  I’m often overcome watching fundraising videos and reading heart wrenching Facebook and blog posts, each vying for attention and money.  However, they are exhaustingly accurate; it is just the accuracy I loathe.  So, for this moment, I will be strikingly honest about a day in the life.

I awake each morning with a heaviness, a pit in my stomach feeling that something is wrong, something is looming.  Like insurmountable debt or a looming termination, except it is a person, and she is a living breathing part of me that lies peacefully upstairs.  As consciousness seeps in and the sleepy fog has lifted, I am reminded of the weight on my chest that slowly crushes my peaceful state...a feeling that never really leaves me.  My daughter is a warrior.  She is my hero and she is racing against time.

We begin our day an hour earlier than most in attempt to clear the viscous beast out of her lungs.  We have our routine down perfectly by now.  While this time is a reminder of the control of CF, it is also a precious time I get to bond with my girl.  We read stories, play games, and giggle happily together.  We are just a mom and a daughter.  CF is a part of our lives, truthfully a huge part, but it really only jolts me on a number of occasions.  The awareness of the fragility of my heart charges in like a wrecking ball when I see the Facebook posts from shattered, broken parents and loved ones who have lost “their someone” far too early.  They never had the chance to celebrate their sweet sixteen, or got to experience the sweetness of a first kiss.  Throwing a cap into the air on graduation day will never happen and their parents will forever feel the empty ache in their arms as they long to dance with them on their wedding day.  Honestly, some were not even afforded the opportunity to go to middle school. The beast all too often wins.  This is life with CF- there are no guarantees for a tomorrow.  I know this can be said by everyone…I get that.  The depth of this reality and pain is all too present when you have a daily reminder of mortality.  CF mocks us at every turn; it rears its ugly head in normal things- like jumping rope and playing tag.  I hear a catch in her breath as she runs by, or she awakes from a restful sleep coughing, unable to stop.  My heart breaks…a sign that life is not fair and despite dedication and relentless care, the beast shows now mercy.  I cannot succumb to the illusion that we have some ounce of control.  I make my third trip to the pharmacy in a week to pick up the latest medication we are adding to our arsenal that we have filled our cupboards with.  Our infinite reminder of this war waging inside her body… we need more and more weapons to fight every day.  And she is only six.

Life with the beast is heavy and burdensome, but there is STILL JOY! I must tell you about the JOY that overwhelms us each day.  I must tell you how much happiness it STILL brings us to revel in the first fallen snow, and admire the colorful blossoms on trees when spring finally arrives in South Dakota.  She STILL loves gazing at the brightness of the moon on a clear night.  Cotton candy at the circus STILL tastes just as amazing and Halloween and the day Wally the Elf arrives are STILL the most exciting days of the year.  She is STILL the best big sister to her little brother and she proudly perfects her game of hopscotch.  Her eyes STILL sparkle when she looks at her daddy and her wise soul STILL loves learning about things like Mount Rushmore and Dinosaurs.  These moments are as sweet as they would have been without CF being a part of our lives, maybe even more so, because we never know when the moments are going to end.  Until you face the reality of watching your child struggle to breathe, or losing someone you love more than yourself, you really don’t fear death… truly fear it. It is only once you love with all of your heart and soul that you can fully understand what true loss is.  Until then, fighting is simply an action, not a part every fiber of your being.  I am a fighter; I fight for my daughter…with everything that I am, in the deepest part of my soul.


Will you fight this beast with us?