Saturday, April 25, 2015

Day 25 - Breathe Bravely Challenge

Finding the beauty in every breath.

Music lives within every one of us. The most beautiful part about music is that our sheer love for it can be the same, but it can manifest itself within every one of us so very differently. 

While in Minneapolis for a few days, a dear friend took us to Nye’s Polonaise Bar. As I walked through the doors it was as if I was transported back into another lifetime. Time suddenly stood still. The red shimmering vinyl bar stools had seen many visitors over their lifetime, the wallpaper was soaked with the songs of generations past, and the stage telling a million stories of the people whose footsteps had caressed the same path. Never have I experienced a place where one stage would be playing pop classics while in the next room a reggae band was serenading the crowds. People from every walk of life were together sharing in the simple love of music, and I suddenly became a part of that community. Music transcended the generations. By walking through those doors of Nye’s the world outside no longer seemed to exist: the stresses, the demands, the chaos all seemed to vanish to the sounds of the piano. Outside of those walls we all faced our own battles, worries, and anxieties of life, but for a few hours we could just merely bathe in the beauty that life had to offer and be renewed by the timelessness of Nye’s. 


I’ve never sung at a piano bar in my 28 years of life. I’ve always been an avid listener. Nye’s changed that. I thought to myself, “why not?” So, Vera (the 70 something staple of Nye’s) and I sang a little Judy Garland. My life has continued to take on a type of “if not now, when?” mantra as I see the impact and realities of CF confront me and those I love. Life is too short to not truly live: I must reach out and grab every experience with both hands. The simple fact was that a few months ago I couldn’t even sing at all, and for only a couple short months have I been given the gift to sing again. So you see, I had to sing. I couldn’t let that moment pass me by, because I may never be given the chance again. It didn’t matter how good or how terrible I was at singing, all that mattered was sharing in the love of music with the people I was surrounded by.

My night at Nye’s will be something I forever cherish: the people I was with, all the life I experienced, and all the music that was shared. It's a beautiful part of my life. Love to you all.



Let’s go singing.

Friday, April 24, 2015

Day 24 - Breathe Bravely Challenge

Finding the beauty in every breath.

Even the harshest of storms breathes beauty into everything it touches: renewing, transforming, and giving life. There is no doubt that it can be most destructive and devastating, but even amidst the torrential rains there is beauty. The storm is never forgotten, but instead makes the beauty just that much more vibrant in our mind.

Even though the storm of CF is ever present in my life, the beauty because of it is even more wonderful. I have come to know some of the most incredible people because of CF, and that to me is far greater than any pains CF may bring to my life. There isn’t a day that passes that I am not humbled by the passionate and caring people that are present in my life. 

Today, I had the amazing opportunity to visit some of those wonderful people: my dear friends at the Cystic Fibrosis Foundation Minnesota/Dakotas Chapter. I have the deepest appreciation and gratitude to those incredible and dear people at the Chapter: they have filled my life with so much good. These people have made it their life to fight for everyone impacted by CF: giving us all a voice and desperate to give us each another tomorrow. Honestly, without people like this I wouldn’t be alive. It’s because of people like them who started the very fight against CF that I am still here today. The team at the Minnesota/ Dakotas CF Chapter has become such a meaningful and irreplaceable part of my family, and for their presence, endless support, and kindness in my life I am so truly thankful. 


The storm of CF may ultimately cost me my final breath, but the beauty that has come into my life because of it is absolutely priceless. I wouldn’t give that up for anything. Love to you all.

What storms have brought beauty to your life?

Thursday, April 23, 2015

Day 23 - Breathe Bravely Challenge

Finding beauty in every breath.

Yes, I admit it: I was a cheerleader. I know, you're in disbelief. I'll be the first one to say it wasn't exactly my life's calling. Or was it? We all are in need of a cheerleader, someone to fight for us, to cheer us on in the hardest of times, to help us come back from defeat, to remind us of our greatest gifts, and to believe in us. It's amazing how the most simple and honest words can produce such change and empower. 
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I am so humbled and overwhelmed with gratitude for the incredible cheerleaders that I have in my life. I can only hope to reflect that kindness and continue to pass it on. I am so truly grateful to everyone who has influenced my life and continues to impact my journey in such a positive and supportive way. I am nothing without the people who have believed in me, pushed me to see beyond myself and my fears, and unrelentingly cheered me on through the best and most difficult of moments. It's a humbling place to be when you realize your very life itself wouldn't be possible without the army of cheering people who stand beside you through everything: that every breath you've been given is a true gift from others' selfless fighting. I only hope I can support and encourage every person I encounter the way I've so graciously been shown by the wonderful people that fill my life. Love to you all.


Get me my pom poms, I have some cheering to do. 

Be someone's cheerleader today.


Wednesday, April 22, 2015

Day 22 - Breathe Bravely Challenge

Finding the beauty in every breath.

Take a moment and close your eyes. Be still and just breathe. Feel that? You are alive. What a glorious feeling. Some days the beauty around us may live in the shadows of the difficulties we face and the demands of the world in which we are consumed, but at the very core of that same day lives the beauty of just breathing. 

Today, I am reminded how incredibly lucky I am for every breath that passes through my lips and fills me with life. Each day contains its own difficulties for every one of us, but each also contains so much beauty in the mere fact that we are alive and breathing. We devour the air around us without ever really stopping to just see the beauty in and of itself in every breath we take. 
At the close of every day I find myself reflecting on the past year, my journey with CF and how it has impacted every part of my life. A slight panic races through my veins. I think about that feeling of not being able to breathe again, not being able to walk across the room without gasping for air,  and the feeling of an oxygen deprived body. I then begin to think of the future and another wave of panic rushes over me. I force myself to close my eyes and just breathe, focusing on the air moving through every part of my body. I can breathe. That reflection concludes with a renewed gratitude for where I am today and the sheer simplistic beauty that lives within me: each breath a constant reminder of this incredible life I have been given.  I cannot do anything about the past, nor can I write the future as I wish, all I can do is just breathe. Love to you all. 



All we have is this very moment. Take a deep breath and feel the beauty alive within you. 

Tuesday, April 21, 2015

Day 21 - Breathe Bravely Challenge


Finding the beauty in every breath.

We each have one: it is something as unique as the very print upon our fingertip. Just like our fingerprint, we leave a bit of it everywhere we go. Its mark can be seen on everything we touch: leaving a narrative of our life. Every day a new page of our life is written and put into print. It is the very composition of our life. Some are filled with mountains of chapters and contain volumes, whiles others are short and concise: none filled with any better material than the other. What is it? It is the story of our extraordinary life.

One of the things I love most is listening to someone tell me the story of their life, and how they got to this exact moment in time. I love to hear their experiences, their happy memories, what they love, their heartaches, and to see life as it is reflected upon their faces: a culmination of what makes their life beautiful. Each story is as unique as the person telling it: comprised of suspense, suffering, celebrations, joy, and promise. The most beautiful part is that the story is still being written. None of us can change what has already been written, nor can we write the ending in advance. We can only compose one beautiful page at a time, and that page is today.
What I also love is how each one of those people have become a part of my own memoir. Their unique stories impacting my own composition of a beautiful life. Those people? You. Every page that is written in my book of life is made more beautiful because of the incredible people that fill it, and for that I am so very grateful. 

We all have a story to be told: each different and incomparable but equally as amazing. Today is a new day to be written in the story of all our lives, so start writing. I cannot wait to listen to your story. Love to you all.

Tell your story.

Monday, April 20, 2015

Day 20 - Breathe Bravely Challenge

Finding the beauty in every breath. 

As cliché as it might sound, it really does feel just like yesterday that we brought Cooper home. It's hard for me to believe that today, he turns 7 years old. Where did the years go and how did I allow them to go fleeting by so quickly? Thinking back on those years, Cooper has been such an integral part of our family. He has been through the best of times with us and the most difficult. Although, he doesn't say much (unless barking at the treat closet), his eyes and presence communicate so much. He has been a presence of comfort and stability for me through everything and continues to be. 

Although I do not recall a lot of specific memories between my brother and I, there's one thing that will always connect us: the love for a dog.  Not only will we forever be connected as brother and sister, and the fact that we both had and have CF, but we will always have this special understanding of what the love and companionship of a dog can really mean. Little did I realize that until now as I think about the last 7 years with Cooper and what his presence has brought to my life. Nate spent most all of his life living at the hospital. My childhood home was more of a vacation retreat for him, and his true home was the hospital. The room itself might have been made of cold cement and sterile tile, but it was filled with such warmth by all those who cared for him. The most incredible thing was when Nate was roughly about 13 years old, the hospital let him get a dog. Not only did the hospital let him get a dog, they let him keep the dog with him at the hospital at all times. Mystic, was a little Maltese that went everywhere and did everything with Nate. I remember throwing toys across the room and watching Mystic's little white fur bounce across the tile: I can still hear the sound of those little paws meeting the hard floor. Looking back, that dog meant everything to Nate: it meant a bit of normalcy, the comforts of a companion, and the experience of loving something and being loved in return unconditionally. After Nate died, Mystic became mine. He continued to grow up with me and be a stable and irreplaceable connection to Nate in my adolescent life. But looking back he would always be Nate's and I would not really understand the depth of that connection until now. 


Today, I packed Cooper up and we went for a ride to the dog bakery to celebrate his birthday: something I couldn't have done a mere 3 months ago. It was just him and I taking on the world. Life is truly beautiful. Sometimes I think that Cooper knows me better than anyone: there's something so truly special that we share in the silence between us. He knows what's happening, he knows what CF is doing to our lives, and most of all what CF is doing to me, yet his presence is unwavering and reassuring. He sits on the couch next to me as I do treatments, kisses the tears away during those difficult times, and brightens any and all days.  Most of all, my love for Cooper will always be a connection to Nate. Love to all you pet lovers.



Go hug your dog.