Showing posts with label Mountain view. Show all posts
Showing posts with label Mountain view. Show all posts

Thursday, December 31, 2015

A Brave Journey

Bravery. It’s something that quietly dwells within each of us, giving silent guidance to every step we take and each dream inspired. It’s set free upon each breath that is shared upon our lips and embraced within every unknown possibility we take for granted. We call upon reinforcements in our most dire and desperate of states and generously share it with others when they are in need.


A Year of Remembering
As I take a moment to reflect on 2015 I find myself consumed by a single phrase: “be brave.” In one breath a year ago seems so very long ago, foreign, and like a dream. But in another breath it feels like it was just moments ago - that I could still reach out and touch it. The very core of who I am today is bound to those difficult days. Days filled with fear, heartache, disappointment, decisions, and moments consumed by tears. I’d be lying if I didn’t say it is still painful. The hurts stings like icy daggers deep within the depths of my being. At times I am paralyzed by a creeping familiarity that catches me off guard- feelings I’ve tried to banish from my existence. I try and forget such memories and the cold harsh realities of what CF is capable of doing. The recollection of how different today could be and the humbling realization of an always unknown and uncontrollable tomorrow consume me. As those memories vividly flash through my being, I do my best to push them from my mind – running furiously from the consciousness of CF.

Grace & Gratitude
On the other side of that pain is a beautiful grace and the deepest gratitude. Out of life’s adversity and pain comes unfathomable beauty. The life I have been given is more incredible than anything I could have imagined. A year ago I couldn’t have begun to tell you where life would lead me. But I had to bravely forge ahead – embracing every moment life was willing to give and dedicate myself to truly living. To love more deeply, risk more greatly, to never leave anything unsaid, be unabashedly me, be alive in every moment, breathe in every memory, be rooted in gratitude, and most of all, breathe bravely believing in life’s great possibilities. I alone did not do it but by the hands and strength of so many. I cannot fully appreciate my life today, the opportunities I’ve been so graciously given, and the people I love without remembering this past year. This is my life and to be grateful for it I must remember not only the joys but each brave step through the unknown adversities of CF. Each of those difficult days, moments laden with tears, and life-changing trials has led me to this very day, has molded me into who I am, and has given me some of life’s richest relationships and memories. And that is something more incredible than I could have ever imagined.


The pain of a year ago will always be present within me. I’ll always cringe and feel a sharp piercing in my side when it consumes my consciousness. But in forgetting I lose myself. I force myself to be still and open my eyes to this very moment. I quiet my racing heart and mind. I remind myself of the gift that is this very breath. As I find myself facing the dawn of another new year, I am immersed within waves of gratitude and the words, “be brave” reverberating through moments of the past and powerfully resounding within those of the future.

Just like last year I do not know what tomorrow will bring. But the truth is, none of us do. I do know, however, that whatever life offers we must be brave – never afraid to remember the journey that got us to this very beautiful moment in life while living bravely in today. And most of all, we must always be rooted in endless hope for tomorrow’s possibility. Here’s to remembering 2015 and the great possibility 2016 holds. Love to you all as we begin this incredible year together. 

Take a deep breath and hear the words “be brave” within every step you take.


Monday, October 13, 2014

Strength Among Weakness

Have you ever been so overcome with emotion, so stripped of every ounce of stoic strength, that the mere presence of a memory steals your words and replaces them with continuous, passionate tears?

Not only is it a culmination of memories that brings tears streaming down my face, but the feelings and relationships in which these memories are built upon.  Each defining memory is weaved together by the beauty of the people that helped create them.  For the last few days I have been at a loss for words: easily overcome with tears of gratitude for life's journey and the amazing people that have filled my days thus far.





Beautiful Irony
I have spent the last few days thinking about the irony of life, and how it is built upon the influence and presence of each beautiful relationship that encapsulates it.  How relationships, conversations, and memories have made me everything I am today.  That the last 27 years are made up of moments and relationships that have prepared me for who and what I am at this very moment.  That the future is built upon meaningful relationships, the generosity I have been shown, and passionately believing in a tomorrow that is not defined by what I am not, but what I am. That the root of every past, present, and future breath is rooted in gratitude.  For 27 years I hid something deep within myself: terrified that the world would see my weakness and vulnerability, that I would succumb to my own fears of being different and an outcast.  The ironic thing about life? Sometimes the very thing that you think defines your weakness is really the very thing that defines your strength.



My life is filled with pivotal moments, conversations, and relationships that have forever changed me: leaving echoes of the past etched deep within and defining to who I am.  The beautiful irony of those moments has left me a mess of emotion.

A few months ago a dear friend said something that has left me shaken to the core of all that I ever thought defined me.  It began as a small whisper that I tried so tirelessly to silence, and has grown into something that loudly resounds every time I look in the mirror.   Her words? "We all have known what you are capable of doing and the things you are meant to do, it's just getting you to realize those things and believe it."  Months later, similar words would be generously spoken from people I so greatly respect and admire: incredible people who have believed in me more than I could have ever believed in myself. Those words have permeated every ounce of my being.  Those resounding words and acts of selfless kindness would be at the very heart of my uncontrollable tears. 

Defined by the honesty of who I am.
If you would have told me five years ago, one year ago, or even six months ago that my life would look the way it does at this very moment, I would have never believed it.  Life is beautifully ironic.   The relationships and feelings in which every memory is built upon has led me to this very moment in life and has prepared me for whatever the future may hold.  I am no longer defined by the weakness I have tried my entire life to hide, but am strengthened by the truth of who I am: forever being grateful for every beautiful breath.  


Life is an incredible tapestry woven together by beautiful relationships, the memories that encompass each day, and the grateful tears that strengthen who we are.   Love to you all. 


What beautiful moments define your life?

Thursday, August 7, 2014

Alive - Part III

Spontaneous Trips
How can you be sure that life does not pass you by? How can you make sure you are really living in each moment you are given?

It's so very easy to get caught up in the chaos of life and become engulfed in a mind numbing routine that we forget what it feels like to be truly alive. It takes real work to stop and make a conscious effort to be alive and present in every moment.  While I completely understand that at times we must just merely exist and take in the world around us, we must never allow ourselves to become a bystander to life.   Before we know it, we have lived our entire lives without really ever living.  

Picnic in the park with friends.
Be Present
CF has caused me to frequently ponder life and what it means to be alive.  When CF confronts me and my journey becomes uncertain, I feel the need to live more than ever: I want to know I experienced and lived my life to its fullest potential.  When CF comes at me with every vengeance, it causes me evaluate how I am living my life.  It forces me to think about looking back upon my life, and what I may see when it's at its end. What do I want to see?  What do I want my life's story to tell?  What regrets will I have?  Did I truly live?  

I begin thinking about all the things I want to do and experience: how I want to drink in every ounce of life.  Where do I want to go? What do I want to see, to experience?  I want to be alive and present in every moment, experiencing it all. I am desperate to live, not just exist.  I forbid to be a bystander in my own life: there is far too much life to live. 

 - 55 -
Weekend Adventures
For the last week I have been so overcome with disbelief, amazement, gratitude, and hope.  After being off of IV's for a few weeks and because I have been feeling great, my Team wanted me to come in for a quick lung function check.  What I am about to say still brings tears of disbelief and gratitude to my eyes: I blew a 55%.  I still cannot believe it.  It's the highest it has been in many many years.  I shouldn't say "I blew 55%," I need to say "we blew 55%."  I could not have done it alone.  It is a moment I will never ever forget.  I will never forget that feeling, hearing those words, seeing the smiles and excitement of my Team, and telling my dear friends and family the news.  From 37% to 55% in two months: nothing short of amazing.  I have been feeling the best I have in years, and for good reason. 

With this new excitement I find myself trying to fully live every minute of every day: weekend adventures, picnics, visiting friends and family, lunch dates, reading, spontaneous day trips to the big city, and continuous dreaming of what may come: knowing that it can all change in an instant.  I live in fear, always looking over my shoulder, waiting for CF to take it all away again. That's how CF works.  It can steal your independence and momentum for living so very quickly, breaking you down and stripping you of dreams and most of all, hope.  It leaves you to wonder if this is the beginning of the end, and fills you with fear of what the future holds.


This Moment
What am I doing right now?  I am in the pursuit of living.  I am enjoying every beautiful breath, living in each moment, and making a list.  A list? Yes, a list, actually several.  Instead of thinking backwards, I am thinking forwards.  I am being proactive about what my life will look like when I am at the end of the road looking back: I am living now.  I am making Bucket Lists.  

Sure, we all have things we'd like to do.  We make a mental list hoping someday to accomplish certain things within our life, but very rarely do we set them to paper for the world to see.  Why is a bucket list a good idea?  It forces us to live, to really truly live in every moment, continuing to look forward, not back.  I have written several bucket lists: one for the next 6 months, one for the year, and one for the next 1O years.  It's a work in progress, but events, adventures, and accomplishments range from simply picking the perfect pumpkin at the local orchard, having a picnic, graduating with my masters degree, visiting the Ballou family castle in Ireland, to seeing each of my goddaughters graduate from college. The beautiful thing about each list is they are alive: always growing, changing, and becoming something better, helping us to remember to live. 
Just a very few things from my lists.


Challenge
I challenge you to make a bucket list with 5 things you'd like to accomplish by January 1.  Remember, they can be the simplest of things to the grandest of adventures.  I then challenge you to do the same thing for 1 year, and then 15 years.  It doesn't matter what your lists consist of, just so that you are really living in each moment and feeling truly alive.  Love to you all.


What's on your bucket list?  




Monday, May 12, 2014

Oh, the Places You Will Go

Time Square, NYC
Monaco
I love to travel. I love to experience new places, cultures, and people.  I love the excitement of planning and packing for a new adventure.  I love discovering the world beyond myself.

2 years ago I wouldn't think twice about hopping in the car or on a plane and jetting off on an adventure.  I was a completely free spirit that loved to get lost in an unknown city, and lived to spend the day exploring and soaking up uncharted territory.  I continually dreamed about the next trip abroad, a road trip over a long weekend, or a spontaneous adventure.  I have experienced France, Germany, England, Italy, Austria, Spain, and several wonderful cities and states in the US.  Today, I still endlessly dream of those trips, but am filled with so much trepidation, hesitation, and guilt.

My first thoughts no longer are, "what are the sights I am going to see?" "How many things can I experience in a single day?" "How can I really become a part of the culture?"

Today's first thoughts are, "where is the closest hospital in case something happens?" "What if I begin coughing up large amounts of blood and can't stop?" "How much can my body handle?" "Is the change in my environment going to make me sick or cause problems?"


Baggage
Madrid, Spain
No longer can I just jet away with minimal "baggage."  No longer can I trust my body to be stable long enough through a vacation with minimal treatments. The single backpack I used to use for my excursions is now in addition to at least 3 other bags.  My VEST alone is 31 lbs and luckily it comes with its own rolling bag.  I then have an entire bag for all my medications and neb supplies: aka the "bag o' drugs."  Also, some of my medications must remain refrigerated, so I have to have a small cooler and must think about accessibility to keeping it cold. Then comes my suitcase for clothes, and I am just as guilty as the next girl for overpacking.  How am I going to manage all of these heavy bags?  When we travel now, Mark so willingly takes care of carrying things to the car, into the hotel, back to the car, and up the stairs to our bedroom once we return home.  He never thinks twice about making extra trips or carrying extra bags.  I feel so guilty that our life has become so consumed by trying to keep me healthy, that we can never "get away" from CF.  When I shed tears of disappointment and anger towards my body, he takes my hand or holds me tight and says, "it's ok. This is OUR life."  



Madrid, Spain

Sitting or being immobile for extreme periods of time is hard on my body and lungs, but yet, after a day of pushing my body to its extreme it is drained and hurting.  I am constantly trying to find that happy balance in each day between pushing my body to the max and knowing its limits: I want to squeeze every ounce of life out of each day.  I can't waste a moment.  

Privilege
I have been so privileged to have had the opportunity to travel so much in my 27 years, but I want more.  I hunger for new uncharted adventures and spontaneous road trips.  I want to leave and not think about where the closest hospital is and how long it would take me to get there.  I don't want someone else to carry my bags.  I want to climb the stairs of the Eiffel Tower, go skiing on the Alps, and bike through charming cities.  
Switzerland

I have the greatest friends.  They changed our vacation plans just for me.  This summer we were excited to road trip out to Yellowstone National Park, but after talking about it with my doctors we decided it would not be a smart idea for me.  There isn't a hospital close by, and the change in altitude could make breathing utterly miserable for me.  Instead of sending me a postcard and bringing me a souvenir back, they completely changed their trip plans.  We are now road tripping to the Porcupine Mountains in Michigan, with stops along the way in MN and WI.  They changed their plans just for me.  There's nothing I hate more than being the center of one's focus, let alone the reason for changing someone's exciting vacation plans, but I am so grateful. They are the greatest friends. I love them so dearly and cannot wait to make wonderful memories on our "Random Road Trip 2O14."    
Our baby camper Palisades Park SD

More
I have tasted the world and I want more.  Even if CF has to make the trip with me, I will not be stopped from seeing the world. Mark and I made the trip to Chicago yesterday and will be taking it all in for the next few days. Thank you to everyone who has made my travels near and far so beautiful.  Love to you all. 
Florida





What places are you dreaming of going?



Sorrento, Italy

Paris, France
Road Tripping to Chicago



Madrid, Spain
Paris, France

Good ol' Yankton, SD
Target Field - Minneapolis, MN
Paris, France
Florida
Florida
Paris, France trip #3
 
Spring Break Paris, France 
Salzburg, Austria
Lausanne, Switzerland
Spicer, MN


Monaco
Cinque Terre, Italy
Southern France
Bavaria, Germany

Assisi, Italy
Rome, Italy
Munich, Germany
Rome, Italy