There’s a familiar sadness I feel as I stare out the window of this coffee shop and see colored leaves desperately clinging to their branches. They seem so delicate. So fragile. They represent a season of change. While this body isn’t one I’d recommend, I am constantly in awe of all it is able to withstand. This body is strong. Sometimes it surprises me and I wonder if it’s something that is built, cultivated, or just born unto you. I don’t mean physically strong, but the strength it has to endure the brutality of disease, of treatment, of survival. I ask myself frequently how can the body ..read more

From the wind it was carried across the miles and brought to rest upon chance,  atop a place it could be inspired to grow, a place it could dance -  A place the tiniest seed of hope only dare to take root, a place only hope dare know.  Its truth seemed insurmountable and its potential off-written. The wild world seemed wrought with unchangeable circumstances and an unfavorable position.  The week has found me within the walls of a room on 7B in preparation for another ERCP. This time, replacing the previously placed temporary stent within my bile duct with a more permanen ..read more

There once was a bird named Resilience.  She loved to greet each new sunrise with a song and watch the setting skies turn into a cacophony of painted impressionism as stars pierced through a canvas sewn by fireflies.  When the ground beneath her feet seemed unsteady and foreign, Resilience knew the only option before her was to learn how to fly. The warmth of the sun kissed sky would sweep her up over every cumulus cloud - weightless with reckless abandon. It’s only at such heights she could see this was a gift that came in the form of a vista. Would she have ever had the coura ..read more

It is a surreal time to be living with CF. To say there are a multitude of emotions I feel within a given day would be an understatement. Maybe it is the grateful vantage point I get to hold because of the dedicated work of Breathe Bravely - immersed in a community as vast as the night sky yet connected by a prescribed constellation called CF. Much of our lives have been held within a hope, a wish, that our live’s storied truth might be changeable. That our course might be charted along a different set of stars other than the one set within our genetic code.  And for many of us that cou ..read more

Thirty-seven candles. It can cast quite the radiant glow. One might even say that with each additional candle it gives us the opportunity to see what lies further before us while lighting the path from which we came. Each additional candle inspires an unmatched joy within the eyes of those who are most grateful for such a day.  December skies & Lucia Lullabyes  December knows a darkness unlike any other. But beneath the crisp clear dark skies of the winter solstice lies a silent hope. A hope that is born from the smallest spark and has the power to pull the senses to safety in a ..read more

The greatest tragedy in life is not born from the absence of living but from living a life enslaved to distraction. We exist within a restlessness that endlessly is seeking answers to questions we don't have the words to say. That restlessness slowly numbs the senses and we begin to simply exist while the ache within our soul seemingly grows more and more each day. We feel it, but simply press on chaotically in search of the answers and purpose we seek which in hope may calm our mind, heart, and spirit. That it may expose the belonging we seek within ourselves - a contented vulnerability in w ..read more

I dare to say the entirety of our lives boils down to a motivation to find the answer to one simple question: what are we seeking? Each season, each step, each decision is composed within the air of a question and motivated by an unspeakable yearning to find a balance, a harmony. A place in which the person in who we are is embraced by a silent steadied faith in who we are becoming and that in which progress has left a memory imprinted within our cells.  How do we find such a place? Will we know when we have found it or is it merely a state of mind? One in which harmony is found only wit ..read more

A few years ago on an unsuspecting late summer evening at the farm with Mark, I walked along the side of the grove as I often would do while he was busy working - walking beside a living history that had seen and withstood more seasons than I could merely ever dream to know. One foot set in front of the other, I followed an unsuspecting path left by the tires of a tractor. A path pressed into the earth and laid before me - leading me in a direction in which would uncover one of the most meaningful and beautiful experiences in my life. It continues to serve as a reminder that the most simple of ..read more

  So much of life and beautiful time we waste by being distracted by the notion of waiting. We fail to realize that living and waiting are always present within each other. That waiting is not a suspension of time, but a fueling of hope. It’s often within the season of waiting we find the truest meaning of living. It’s within the waiting we find an unmatchable peace that can enliven our senses and inspire our spirit. It’s in the waiting that we have the opportunity to make every beautiful breath extraordinary. And if we are brave enough to look, it’s within that quieted season of wai ..read more

I cried tonight. I muffled my sobs within the palms of my hands as streams from the shower above raced my tears to the drain. A rolling steam engulfed me as I felt myself within the grips of disbelief - grasping for a different truth. I cried for the life I feel we have just gotten the chance to finally live and dream about and could lose at such an unfair cost. I cried at the thought of one of us getting sick and being separated during these tough moments.  I cried at hearing the panic in your voice and reading it within your texts as we realized the scenario we feared was becoming more a ..read more