Go Twins!

[Blog post written by Mark Bonnema]

It’s been a bit of a rough go for our favorite sports team at the Ballou-Bonnema household. The Minnesota Twins recently lost 13 games in a row.

Some of the losses were bad. Real bad, like 15 to 8 against the Toronto Blue Jays, or 10 to 0 against the Kansas City Royals. Some of the losses were SO close, like a 1-0 loss in 10 innings against the Cleveland Indians. And some losses were heart wrenching, like being up 7runs to 5 runs late in the game, only to blow the lead and suffer another loss.

Whichever way they lost, whether in spectacular or heart wrenching form, Ashley and I still tuned in. Radio, tv, mlb.com, you name it, we have the Twins schedule cued up and it’s a staple background sound to be heard in our household. Win, lose, or otherwise, we cannot help but support and love our favorite team. I can’t think of anything they could or could not do to make us stop watching or supporting (but don’t take that as a challenge, you Twins, lets not go for a 14 game losing streak…)

Sometimes watching Ashley live with CF has some similarities with watching the Twins play baseball every day. There are times Ashley is doing great, her health is wonderful, and she has no hesitations or second thoughts about doing anything. Life just flows naturally. Its like when the Twins are playing good ball, winning ball – hitting home runs, advancing the runners, getting their pitches, and painting the corners of the strike zone to the opposing team’s hitters. 

But, as the Twins losing streak reminds us, there are times that life doesn’t flow so easily or naturally when living with CF. When Ashley has a flare up and needs to take antibiotics, her joints often hurt so badly in the morning that she hates to think about getting out of bed; the mucous in her lungs is deep and tenacious, forcing frequent and painful coughs in order to clear it; infection steals her vitality and tenacity making everyday tasks an overwhelming chore.

When the Twins are down, hopefully all they need is to come out of their slump, get their heads in the game, and start making plays. Perhaps a home run or double play is all that is needed to reverse their fortunes. Ashley often has to work much harder to correct the course of her health when she is in a “slump.” It can take weeks, if not many months of extra treatments, IV antibiotics, and avoiding all potential sources of viral or bacterial infection.

Even when the Twins are down, we never stop watching, cheering, and rooting them on. We just can’t help but tune in, because we love them. The same goes for Ashley. She and I both know that we have the most wonderful and supportive, unconditional group of supporters rooting, cheering, and constantly working for the best care and treatments for Ashley. Whether her heath is on the “winning” or “losing” side, you guys are always tuned-in. You are even better than the most avid Twins fans, and for that we thank you.

Good news. The Twins won a game on Thursday night, September 1, 2016. They ended their losing streak when they beat the Chicago White Sox 8 to 5.  

In even better news - it's been a winning season here in the Ballou-Bonnema household! Every day Ashley gets and feels good is a WIN! Thanks to each of you for your steadfast support and for being a part of our team. Most importantly, thank you for our ability to trust and know you will be there tomorrow as well, no matter the score.

Go Twins, go! 

Unbreakable

It had been five months since potent combinations of IV and oral antibiotics coursed through my veins - my body beginning to feel more like my own again and I was beginning to recognize the person I saw in the mirror. My mind was running at full speed again. Each day my mind shed a little of its doubt and mistrust of its own body – unassumingly instilling the belief within me that I was invincible.

But I am not invincible, and CF is ever-present. I’d be lying if I said I hadn’t been avoiding the signs of an exacerbation, desperate to give my body the chance to show me - show CF, that I was strong and unbreakable.

Reminded

How quickly I forgot the feeling of powerful poisons coursing through my body. For three weeks my body has been inundated with powerful IV infusions, oral antibiotics, and extra treatments. Its crippling presence evident in every aching joint and fatigued step. Every morning I can feel the sunken-ness of my own eyes deepening as I force myself to fall into my life’s usual expected momentum.  My body feels heavy and struggles to keep pace with my mind. I am reminded that my body is not my own. I am reminded that beneath the surface the fight against CF threatens to break me – trading a beating from antibiotics for the mere hope of getting one more day. One more beautiful breath.

This isn’t something new I’ve experienced, but this time it does seem different. As CF and its truth steadily chip away at my being, I can’t help but reflect over these past several years and the extended and frequent courses of powerful antibiotics. Is this how I’ve always felt? Has my body always felt this beaten during such courses? I think back to last year when for sixth months straight without break my body was inundated with different powerful drugs in hopes that something would combat the life-stealing force of CF. I remember those days being difficult but it is as if their honest paralyzing sting has been replaced or freed from my memory.

Mere Hope
It’s amazing how quickly the mind chooses to release and replace those excruciating past experiences with unwavering hope. Of course, those difficult moments live deep within us always, but we move on from them – choosing not to live in our brokenness but in the beautiful hope of the present and future. We live for those moments that the body proves its strength and mends the brokenness of that which comes in the wake of living with the realities CF, or whatever difficulty we each may face. I have no doubt that this trying course of antibiotics will soon be finished and these difficult moments too, will be overcome by the unbreakable hope that lives deep within.

Today, each beautiful breath is dedicated to all those that must live with and bare witness to the truth that is CF - parents, spouses, family, friends, medical teams, and the incredibly strong, tenacious, and hopeful individuals with CF. Love to you all.

Whatever difficulty you may be facing, remember there's an unbreakable hope that lives deep within you. 

Thin Ice

There's a hesitation within my step.  My body tenses as I suddenly become aware of every cell within  my body: from my fingertips down to the soles of my feet.   I take a deep breath and gasp as I feel the pungent crisp air pass between my lips and fill my lungs.  For a moment I hold my breath and close my eyes, fearing not only to take the first step, but the journey across the uncertain ground.

Do I delicately place each step, aware of every movement I make hoping the fragile thin ice below my feet will support me?  Or do I run, seeing how far I can possibly reach before I feel or hear the ground give way?

It's time to take that first step, to set out upon the frozen sheet of icy glass and see if it will hold me.  The ground below me has been unsteady these past months, but each step I've taken has been coupled with an army of people and a barrage of potent antibiotics and medications hoping to stabilize and firm the ground beneath me.  It has been an emotional, frustrating, and exhausting endeavor to come this far, but I am amazed and so very thankful to have weathered the journey: to be able to breathe. 

Prepared to Swim

The last 161 days have consisted of two PICC lines, a sinus surgery and bronchoscopy, two visits inpatient to the hospital,  a multitude of oral medications and IV antibiotics, Influenza A, endless hours of treatments, a few drug reactions, and countless visits to my doctors.  But I have finally reached a point in which I have shown enough stability to stop IV antibiotics. It is time to see what my body will do on its own.  I'd be lying if I said I am not nervous or terrified.  It feels as if I am stepping out onto a sheet of thin ice: wondering how far I can get before the ice starts to abruptly crack beneath me, plunging me into the depths of the icy water.   How little trust I have in this body after it has betrayed me so vehemently these past months.  It is not "if" my body will betray me again, but "when."

But I must do it.  I must take a deep breath, step out onto the ice and have faith that it will hold me.  And if not, I surely can swim.

Without Fear

Wherever my steps are leading and however uncertain my path ahead may be, the journey is still most amazing. Let the brisk air pass between my lips and touch the depths of my lungs,  reminding me that I am alive . Let me not only walk without fear upon the uncertain ground, but skate across the glistening thin ice, always being a witness to the beautiful life I've been given.

Thank you to my wonderful CF team, the depth of my gratitude for each of you is immeasurable.  Thank you to my amazing friends and family who have steadfastly supported, loved, and shown me grace through this entire journey: it means more than you will ever know.  I only hope to share as much goodness as I have so graciously been shown and given.  Love to you all.

Are you walking on thin ice and prepared to swim?

Tenacity & Strength

The true strength and tenacity within ourselves are the sole make up of the people who hold us up, believe in us, and forbid to give up the fight when we are in need of saving.

As I sit across from one of my doctors at my appointment this last week, I was overcome with the emotional realization that I am not in this alone.  As I made light-hearted jokes about the future and talked about the tentative plans ahead, I knew the only reason I got to where I am today wasn't from me fighting CF alone, but from the multitude of doctors, nurses, pharmacists, friends, family members, and complete strangers holding me up, believing in every step of my journey, and always passionately fighting with me for another breath.   What an incredibly humbling thing to realize.  I wouldn't be here if it weren't for their relentless encouragement, steadfast support, and their commitment to doing everything possible to give me another tomorrow.

To Breathe
The last few months have been filled with endless IV antibiotics, countless pills, doctor visits, hospital stays, tests, blood draws, and the need for unyielding tenacity.  The last few months have held some of the most beautiful of moments and some of the most difficult.  At times, I thought I'd never feel like me again.  That with every setback came the panic and desperation to breathe, just for another day, month, or year: to merely live one more day in the life I love with the people I love.

I still feel that desperation to live, but today it is coupled with celebration.  At my appointment last week I had a FEV1(lung function) of 50%: almost double since this past November.  I have never worked harder and desperately wished more for that number.  To be able to breathe is simply amazing.  This is most likely where things will level off, but I will never stop fighting for more.

Testing the Waters
The direction and nature CF takes isn't clearly understood, nor can its future be clearly articulated.  What we do know is that with every ruthless infection and hit my body takes, it is harder to put the broken and shattered pieces of my health back together.  This shell of a body may have been left weaker and its resilience taking a brutal beating, but my determination and will are stronger than ever.  For the last 22 weeks (and counting), my body has been inundated continually with powerful cocktails of IV and oral medications in hopes of beating down the relentless drug resistant bacteria and fungus that are trying to steal my vitality, my strength, and my very future.  With that said, the time is coming in which the boundaries and limitations of my body without all these drugs needs to be tested.  I am filled with such a cacophony of emotions:
Gratefulness, for getting to this point in which I almost feel like me again.
Anxiety, for knowing the future is bound by the destruction of CF and the pain it will cause so many.
Infinite joy, for the relationships that have fed me and brought so much beauty to my life.
Nervousness, in wondering how long it will be before my body will betray me again.
Love, for the endless grace and kindness I have been shown.  
Hope, for the possibility of tomorrow.

I am so very grateful for those who have held me up through the hardest of moments, those who have celebrated each victory, those who continue to believe in my journey, and for those that have fought with me for every breath.

I am learning not to allow the past events to fill me with fear, or the unknown of the future to fill me with trepidation, but to live for the beauty that is present in this very moment.  CF may be progressively present in my life, but it will not rule by fear.  I will breathe bravely: continually renewed by the strength and tenacity that live within, knowing I am never alone in this fight.  Love to you all.

Each of our lives is filled with people who pour themselves into us, giving us strength and tenacity to endure whatever our journey may have in store.  

Thank them today.

A Love Unlike Any Other

2008

Love.  It is alive in every word given.  In every touch shared.  In every breath taken.  

Love.  It is timeless.  

Love.  It isn't easy. 

Love.  It is the core of who we are, and its reflection can be seen in the beauty, heartache, and in the hopes that fill our lives. 

Love.  It is the greatest thing any of us will ever know.  

2002

Our Unique Story

If I close my eyes, I can still see the bright blue eyes and dimples I fell in love with over 12 years ago.  It's the beginning of our story.  Even then, I knew there was a unique depth and love within Mark.  A love unlike any other.  He is one of the very few people who has always been able to look me in the eyes and see who I really am.  He's always been able to see beneath the façade I so perfectly have always tried to paint for the world.  He has always seen me for me.  He still does. 

2004

I think back to those early years.   We would spend countless hours talking about the future and all its possibilities.  CF wasn't even a thought, let alone on the roadmap of our future plans.   I can still feel that excitement for life and how anything seemed within reach.  Life and love seemed so simple.  How could I possibly know that behind it all was a love greater than I could have ever imagined?

I often think of what our life would be like without CF: what dreams we'd be chasing that we had talked of for hours 12 years ago, 6 years, or just 2 years ago. We've experienced a lot of life in these 12 years: they've held some of the most incredible and beautiful moments, and they've held some of the most heartbreaking. Through the best of days and the hardest of days though, Mark's love has always been steadfast.  He never complains about the life we've been forced to embrace, but instead continues to tirelessly fight for another tomorrow together.  Even when I look in the mirror and see pale skin, tired sunken eyes, hair that is falling out, a puffy face, and a body I don't recognize, my reflection in his eyes still tell me that I am beautiful no matter what.  In the face of CF's progressive life stealing ugliness, he sees only beauty.  He does the laundry, dishes, goes to the grocery store, cooks, makes countless runs to the pharmacy, preps antibiotics and gets up early just to help give me a break from the world of CF, and continues being a nurse long after he leaves his shift at the hospital.  Not to mention he puts up with my sassiness, dries my tears, and unquestionably supports my dreams.  He never gets upset.  He just loves.  

2010

Heartbreak & Hope

But my heart can't help but break for Mark.  At times I feel as if I have cheated him out of the life he really deserves and the love he is really worthy of.   I think of how unfair it all is for him.  What have I done to his life? After all, this is supposed to be the prime of our lives.  I think of how our life used to be built upon spontaneity and our love for adventure: traveling every weekend, going out for supper or drinks with friends, running errands day after day.  But now it is built upon keeping CF and its exhaustion in balance.  That sleepless nights aren't caused by the cries of a new baby, but because of an alarm to change IV antibiotics again.  We used to thrive on experiencing life together: constantly on the go. But now I often watch him go it alone.  Nothing broke my heart more than when I was at the U of M and every day he would go out exploring the city, always taking pictures and sending them back to me as if I were right there next to him.  But I wasn't.  I couldn't help but think of the life he'd have without me, and how CF was stealing the time we did have together.  

2014

What has Mark done to my life?  Blessed it beyond measure and given it more joy than ever thought possible. The love I have for Mark is unlike any other.  Its depth is immeasurable and the gratitude I have for him is limitless.  The beauty of my life begins with the person who is willing to start and end every day with me no matter what we face, the person who is willing to endure every easy and difficult breath, and the person who is willing to fight at the chance for another tomorrow together.  Could we have ever really known what the future would bring those 12 years ago?  No, but that's what makes it our unique story: a story rooted in a love unlike any other.  All we have is today, this very moment, and the memories that keep the fires of hope alive for tomorrow. 

Love.  Always. 

Time to Fly

Our lives are filled with monumental precipices that impact the course of our journey.  As we look out towards the horizon, we can see the moments, experiences, and choices that have all led us to this very moment in our lives.

I find myself at the edge of a new precipice.  For the last month I have been standing at the edge, terrified and resistant to take the next leap.  I've been merely free falling: desperate to cling to the life I've had, the body I could trust, and resistant to face the realities of the future.  Decisions and choices consume me that will impact every part of my life.  I would be foolish to say that CF has not impacted the way in which I've made decisions in my life, and my hunger for it all.  Despite CF and its relentless attempts to undermine the course of my journey, I've lived passionately with intent.  I have faced each precipice life has brought me to without regret.  

Passion, Intent, Hunger

I used to be a master at concealing CF, but for the past couple of years it has been making its presence more and more known in my life: making it impossible to hide.  As it progressed, I simply would throw myself into life more passionately, shutting out the truth of what was really happening, desperate to silence the deafening realities of CF ringing through my body.  But through it all, there's always been this small, stirring presence, that has lived deep within me: the voice of CF that would quietly stir and resound within.  Every time I'd hear it stirring, I'd simply push harder.  I'd fill my life with more, just to prove to myself I could do it all: graduate school, teaching, singing, road trips, a marathon of rendezvous with friends, and other spontaneous excursions just to show myself I could do it all, no matter what it was really costing.  That hunger, drive, and passion still burn passionately within, but the voice of CF within is resounding loud and clear.  As I stand on the edge of this new precipice, I can no longer run from that thunderous voice.  I must take the next leap embracing every part of who I am, fearing not the fall, but trusting that I will spread my wings and fly.

The last month has left my body vehemently fighting rampant bacteria in my lungs, Influenza A, and extreme exhaustion. The more I merely try to "push through" the more my body fights back.  My days of hitting the ground running from 7 a.m. to 1 a.m. have come drastically to a halt and are physically impossible.  Life has become an art of balancing, conserving, and expounding energy.   The last month has sparked some serious discussions about my lifestyle, my future, and the reality of the cost of what I've been putting my body through.   Simply put, I was given two choices.  Either continue doing what I've been doing and know that it could ultimately be killing me, or make some drastic lifestyle changes and learn to respect my body and get as many beautiful days as I can.  

Learning to Fly

So, here I stand at the edge of my precipice, looking out over the incredible moments, relationships, and events that have made up my beautiful life thus far.  It's time for me to take that leap, to make some changes to my life, to step off from the edge.  What is most incredible is the beautiful opportunities that lie ahead amidst the heartache of these life changes.  Through the tears I shed for the amazing life I've been able to live, I am happily grateful for all the beauty each new tomorrow holds.  I am ready to step off of this precipice, spread my wings, and fly.  Love to you all. 

We all stand at the edge, hesitant to take that leap, clinging to the ground we know.  

Take a deep breath, leap, and feel yourself fly.  It's going to be a beautiful new part of your journey.

The Greatest Gift

The worth and meaning of a gift do not come from the size of the box, its monetary value, or even the ribbon that adorns it.  Its meaning comes from how it makes you feel inside as the recipient and as the giver.  The greatest gifts are not boxes filled with things, but beautiful presents that hold so much more: love, kindness, selflessness, and gratitude.  They all make up the beautiful gift of life. 

This Christmas I have received the most beautiful of gifts.  This gift cannot fit in a box, nor can it merely be purchased: it is one of a kind and irreplaceable.  What is this magnificent gift? My life.  

Our Life

As I hand Mark a present and watch his fingers so gently tear off the wrapping paper, I can't help but be overcome with the thought of how different this Christmas could have been, in so many ways. A month ago, CF annihilated our life.  Sure, CF has always been present in our life, but never has it threatened to steal it all so quickly: to unabashedly wreak havoc on everything we know and love.  To make our life almost unrecognizable.  To be confronted with some difficult questions, realities of CF, and the possibilities of what the near and distant future might look like.  My eyes brim with tears as I think about the last month, and what it all means: the gift that is life and the people that make my days so beautiful.  Mark looks up at me and smiles, and I am reminded how truly wonderful my life is, CF and all. 

In the course of a month my lung function has steadily increased despite a new bacteria making its home in my lungs: adding itself to the already resistant team of bacteria trying to undermine every breath.  I am so grateful to my CF team for literally giving me every breath and continuing to fight with me and for me.  A month ago I couldn't walk up a few steps, take a shower, carry on a conversation, or merely walk across the room without gasping for air.  My body has been so ravaged by CF, but each day I continue to get stronger, and am so very grateful for each percent of lung function gained.  I know those devastating days will come again, and I don't think I will ever be ready for them.  I know how quickly everything can change again.  But today I celebrate each victory: walking up the steps, singing a few lines, and any signs of winning this battle against CF.  It's the most amazing gift: the gift of life.  

The Perfect Gift

This gift I have been given is immeasurable.  It is priceless.  It is irreplaceable.  It cannot be simply wrapped in a box, adorned with the most ornate bow.  This most extraordinary gift is my life: made up of beautiful breaths, unconditional love, and endless gratitude.  Love to you all.

What gift have you been given that cannot fit in a box?

Living

The most beautiful moments in life come from taking risks, making every breath count, and choosing to live.  I mean really live.  To be present in every moment.  To feel: love, pain, heartache, joy, gratitude. To feel: everything.

As I stare into the candles that cast a beautiful glow upon my cake, I think about what they really mean.  As I take a moment and look around at the people I love next to me, I can't help but wish to stop time for just a moment: to imprint the feeling of this very moment forever into my memory.  I look back at the candles flickering on the cake and and am weighed by the meaning of this birthday and all it represents.   Meaning for the past, the present, and the future.  It represents life and every moment I've been so graciously given, and every moment I have yet to be gifted.

Endless Hope
For a moment I didn't want to blow out the candles.  I wanted to bask in the glow of their hope and the gracious gift that I had been given yet another birthday.  I just wanted to exist and be thankful for being allowed this very moment, for all the people in my life, and how completely beautiful it all was.   But I knew that taking in that breath and blowing out those candles also represented another day CF had not won.  It represented the beauty of tomorrow, my next birthday, and the hope that can never be extinguished.

It would be an understatement to say that I have been overwhelmed with emotion these past few weeks.  The fragility of life, the incredible love, generosity, and support of so many amazing people, the realities of CF, decisions about the future, and such immeasurable goodness amidst uncertainty have all sent endless tears streaming down my cheeks.  These past few weeks have proven themselves to be stronger than my ability to contain my emotions: leaving me to feel every moment, relive every memory, and whole-heartedly give thanks for the beauty and people life has given me.  I have been gifted beyond measure with such beauty and goodness.

A Box of Good
For my birthday I received a box from a dear friend.  In that box contained dozens and dozens of envelopes.  But really, it contained so much more: it wasn't just a box of birthday greetings, it was a box of genuine selflessness and complete beauty.  It was a box of life and a celebration of every beautiful person that makes my life so incredibly amazing.  The morning of my birthday I opened the box and took out the first card.  I read it, only to put the lid back on and be overcome with humbling tears.  Tears for the past, the present, the future: all of them rooted in gratitude.  How did I deserve such goodness?  Have I shared any good?


Days later, I have finally opened the last card: no tears, just a deep love for life and the people I am so incredibly lucky to know.  Laughter filled my lungs and an inner smile was imprinted on my heart.  I have been gifted beyond belief.  The candles on my cake represent the life I have lived and the life I have yet to live: all a beautiful gift.  They are all filled with immense hope and goodness.  Each day I am stronger, more grateful, and filled with more love.  Thank you from the bottom of my heart to all who celebrated with me near and far: it will be a birthday that will live with me always.

A most special "Happy Birthday" from the wonderful South Dakota Chorale

Here is to a beautiful year 28.  I promise to live in each moment, be present in every beautiful breath gifted to me, and most of all, be grateful for it all.  I will truly live.  Love to you all.


Are you living? I mean really living?

All You Need is Love

[Blog entry written by Mark Bonnema]

“You can’t live on love…” This phrase passed down from generation to generation is often spoken with intent to motivate and spur young couples to make sure they consider life beyond their intensive affectionate stage and ensure they have the financial means to pay their bills and begin life largely self-sufficiently. But what happens when life takes your ability to work, your vocation, and means of livelihood and warps and twists them like lawn ornaments in a tornado? What happens when it seems all you have left is love?

Ashley is a fighter. A brave, fearless, often blindly determined fighter. Tell her she cannot do something and she will work all the harder. Music, schooling, teaching, writing, maintaining extensive friendship networks, she does it all with grace and ease. I am often amazed and even a bit jealous with how easy she makes being successful in life look. The recent exacerbation of Ashley’s lung infection (a chronic part of living with cystic fibrosis) has taken its toll on Ashley’s ability to make music, teach, go to school, and even maintain close friendships beyond text messaging. It's heartbreaking to see the activities she loves so much in life lie just out of her reach. Her health is keeping her tired, worn down, short of breath, and fighting just to heal. There is no time left for her to welcome students into her studio, to practice for her graduate vocal recital, or to sing with her favorite group of singers (the marvelous South Dakota Chorale, of course!).  Beyond breathing and trying to fight infection, sometimes it seems all Ashley has left to live on is… love.

Throughout the years we have dated and been married, Ashley’s health trials have provided difficult experiences that have taught us many invaluable lessons about how to live life. Take nothing for granted. Live fully today, but be prepared for whatever tomorrow may bring. Never give up. And finally, treasure your loved ones, hold them close – the time may arise when you need to lean on them and allow them to hold you close in return. This last lesson is one we have been experiencing daily over the past few months. As Ashley’s health has declined, we have not been able to keep up our lives as usual. School and work have taken backseat to getting Ashley through each new day. Teaching and practicing music have become dreams of treasured life-giving ventures Ashley hopes to return to someday. Cooking, dishes, laundry, decorating for Christmas… again, secondary to making sure Ashley is able to maintain her health. It seems we have been forced into a situation of “living on love.”  

                

Fortunately for us, we are blessed beyond measure. We could never count, add, figure, or determine the amount of support and love we have received from our family and friends. When life was turned upside-down and we found ourselves with an hour’s notice before heading to the hospital in Minneapolis for two weeks, nearly everyone we knew reached out with offers large and small seeking to help in ways we never knew possible, and most of all, ensure we knew we had immeasurable love and support. Blessing is a word with new meaning for us, as is the phrase, “living on love.”  When forced to live on the love, generosity, and kindness of others, the phrase takes on a meaning as beautiful as a glimpse of the sun in the mid bleak winter. Thank you to each and every one of you who have helped to fill this current time of uncertainty, fear, with love, support, laughter, and joy. You are incredible.

  (Ashley singing a few lines for the first time in weeks.)

Look in the mirror – you are incredible. Thanks for your love.

Today's Patience is Tomorrow's Possibility

Patience is not an entity in and of itself, but is a process, the act of learning to embrace a state of mind.  It's something that must be practiced, embodied, and given room to grow.

I must have patience for today, for the days ahead, and a steadfast appreciation for days past and how they have molded me.  I would be foolish to tell all of you that I haven't had moments this week when I lost sight of myself and felt a complete wreck: distraught with emotion for the future and the life I called my own a mere few weeks ago.  CF is not only getting a grasp on my lungs, but my mind as well.  I am so used to making plans for tomorrow, cramming as much life into every minute of every day, and living in overdrive.  I am having to retrain my mind as much as my body.  Most of all though, I am having to embrace patience.

Small Victories
I must embody patience for what today brings, and patience in knowing tomorrow is a new day filled with new possibility.  It may look different than I so desperately want it to, but every ounce of progress and growth is something worth celebrating.  Each day holds its own victory, no matter the size.  The smallest of good and progress overcomes any adversity.  The smallest of victories may be paired with the greatest patience, but in the face of this battle against CF any progress is a tremendous victory filled with possibility.

Today was filled with beautiful victories.  For the first time in weeks I can catch a glimpse of myself when I look in the mirror.  For the first time I feel somewhat like "me."  For the first time in weeks I do not completely fear this body which encapsulates my soul and mind.  I do not dread or fear looking in the mirror and seeing what stares back at me.   For the first time in over a week, I recognize myself.   Part of it might be my body and mind adjusting somewhat to the current mood of my lungs and life, but for sure what I see is the reflection of love, support, and unfathomable kindness I've been shown by the medical team here and the all wonderful support I've been given outside these walls by all of you.

Hope
Yesterday, my lungs showed us all some signs of improvement.  My lungs and body have a long way to go, but it's progress.  After days and days of decline and not recognizing the person from within myself, having patience for today and hope in tomorrow's possibility have brought progress and small victories.  This is going to be a long road, and there will be tough decisions and days ahead, but I am learning to dwell in patience and remain grateful for the beautiful journey that is my life.  Most of all, grateful for each wonderful person and experience whose path I have the privilege to cross.

I am so thankful for every person that is on this journey with me.  I owe my life to so many wonderful people.  I am so incredibly humbled by the generosity, love, and endless kindness I have been shown.   I am learning that the pursuit of patience holds a beauty all its own.   Love to you all.

Be patient, you never know what beautiful possibility it will give to tomorrow.