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.

Being Honest

6 months ago I did something that drastically changed my life.  I logged into Breathe Bravely for the very first time and I began writing.  Never did I imagine a few words would transpire into something so incredible.  Never did I imagine how it would change the people I know and love, and my relationship with them.  Never did I imagine how it would change... me.

A Promise

This blog was started because it was time for me to be honest not only with myself, but with the people who unconditionally supported and fought for me at the arms distance I kept them.  It was to come clean and share this life I had so meticulously kept hidden from the world my entire life. Something I had worked so tirelessly to conceal my entire life was becoming nearly impossible to hide.  It was time I share not only a part of my beautiful life, but ALL of my beautiful life.  

I promised myself this blog would reflect my honest life and the beauty of the good, the bad, and the ugly of Cystic Fibrosis.  I found myself the past few days fighting the feeling of wanting to stuff CF and any signs of it deep within myself, away from the world.  Suddenly, I wanted to pretend it wasn't there.  

Why did I hide a huge portion of my life from the world for so long?  Why does a part of me still?  I couldn't stand the thought of the faces of the people I love when telling them less than perfect news.   I still can't.  Most days I can handle the life I have been given, and can see the beauty in every breath I take. What I can't handle is how my life impacts and hurts those I love so dearly.  But, there is no greater gift than telling those I love good news: that their fighting and support make a difference, that I'm breathing better than I have in 4 years, that I'm running, that the possibility of the future seems limitless.   I can see it on their faces: they have hope.  Most of all, I can see my reflection in their future.  The past two months have been one of the greatest gifts of my life.   

Honesty

On Tuesday after several tries, two hours, both arms used, and my body finally cooperating, I had a PICC line placed to begin a course of IV antibiotics.  I think this time has been the hardest when it has come to sharing the news.  Seeing the look of disappointment in not only myself, but in those I love truly kills me inside.  Maybe it's not their looks of disappointment, but the reflection of my own in their faces.  The last person I wanted to tell was Mark.   I felt terrible.  I felt like for the last two months we had real hope.  Hope for a future that seemed like anything was possible.  A future in which CF wasn't going to have any hold on our life.  But that's not my life, and you know what?  That's ok.  I will be grateful for every day, every memory, every relationship, every opportunity, and every breath I am given.   I am thankful for an aggressive team who wants to keep me the healthiest I have been, who care about me, and fight with me every day.  Even if that means IV antibiotics and hitting things before they turn into something really terrible again, I am so truly grateful.  Some days are rougher than others, but all are good and filled with their own beauty.  The future is filled with wondrous possibility and hope, and it's all mine.  Love to you all.

This is honesty. This is my beautiful life.  This is Cystic Fibrosis. 

Is your life an honest reflection of who you really are?

68 days

9 weeks and 5 days.

68 days.

1,362 hours. 

What has your life looked like the last 68 days?  Think of all the exciting things you've done, the places you've gone, the people you have seen.  Have you gone swimming?  To the lake? Have you spent time outside working on that tan?  Now, think about what you've been wearing these past few months.  Short sleeved shirts? Tank tops?  Swimsuit?  Now, think about how many showers you have taken in the last 68 days.

I know, you're wondering, "what the heck do those random questions have to do with anything? How many showers, really?" Yes. Really.

The Best of Days

This past Friday was an absolutely glorious day.  After 68 days of IV antibiotics, I got the "ok" from my CF Team to get my PICC line removed.  I honestly felt like a five year old on Christmas morning: so excited and giddy with anticipation for my appointment. I was overcome with joy and the possibilities that lie ahead.  Why was I so excited?

What does life for 68 days with IV antibiotics and a PICC line look like?

1.  No real showers.  I know what you're thinking, "ew." Yes, I still shower daily, don't worry.  I just can't get the 4x3 inch area of my bicep wet where my PICC line lives.  I can see you pondering such a situation.  Most people cover their arm with plastic wrap or a bag, but that means someone has to help wrap and tape it up.  It's a terrible feeling having to rely on people for such basic needs as showering.  I, however, have come very talented in the areas of being able to shower without any covering and managing not to get my PICC line wet.  I know, I am talented.  

Last IV

2.  Cardigans.  Lots of cardigans.  It's summer, and it's hot.  My morning usually consists of planning what cardigan I am going to wear for the day to cover up my PICC line.  It's 92 degrees outside, and what am I wearing? A cardigan.  I am sweating to death, but that cardigan keeps my secret hidden beneath its sleeve.  My pasty white arms yearn to see the sun.  

3.  A strict schedule: calls to Homehealth, deliveries of IVmeds every few days, weekly PICC dressing changes, trips to the clinic for lung function tests, consultations with my CF Team, every 8 hours of administrating antibiotics, and planning my day out to fit all CF's demands. 

4.  Patience.  I have learned that it seems like in an instant an infection can flare. That all the hard work and progress I've made can be so quickly undermined by an exacerbation.  That my lung function can quickly plummet 1O% after working for so long to get it up. That my body can quickly rebel.  I have learned that the fight takes patience. That I am not going to win this battle in a day: it may take 68 days, or more. That things might get worse before they get better.  There's no sense in wishing things to be different because they're not.  This is the life I have been granted and with that I am thankful for each battle and the patience to endure. 

5.  Sleeping.  When I am hooked to continuous IVs, sleeping isn't the most ideal.  My "European Satchel" comes to bed with me, and often times I awake in the middle of the night wrapped in tubing.  I also have to make sure that I don't abuse my PICC line too much with tossing, turning, or sleeping on my arm. 

PICC free

When you pick out your clothes in the morning think about having to cover your arm.  When you hop in the shower to quickly rinse off think about not getting your arm wet.   When you go to sleep think about not sleeping on a certain side.  Think about the first thing you have to do in the morning is "hook up" and how the rest of your day is going to play out.  

Excitement

Friday morning I awoke filled with so much excitement.  Excitement to reach 48% lung function.  Excitement for freedom from a strict 8 hour schedule, no cardigans, a real shower, to go swimming, to sleep untethered.  Excitement for freedom, even if I know it won't last forever.  No matter how many days I get of "freedom," I will be immensely thankful for each of them and grateful for my CF Team that has helped me reach this point.  Love to you all.

What have your last 68 days looked like?

The Great Escape

I think we have all had that feeling of wanting to pack a bag and set out on the open road, never to look back.  We are filled with a great hope that whatever we are running from won't find us wherever we are going.  We are trying to escape the weight of our world in pursuit of a place [whether physical or mental] of peace, contentment, and fulfillment. Or we are merely searching for a place to help us forget.

The Getaway

This past week Mark and I took the baby camper out for its maiden voyage of the summer.  For the most part the renovations had been finished and it was ready to take on the open road.  I don't think there was a more perfect week to be in South Dakota: encompassed by a perfect breeze, warm skies, the unwavering beauty of the cottonwood trees, and the chorus of the Missouri River waves lapping against the shoreline.  For four days I felt as if I had somehow escaped the reality of my world: my world of doctors appointments, PICC lines, IV antibiotics, pharmacy visits, phone calls, treatments, school, restlessness, the chaos of my life, decisions, disappointments, etc.  For some reason I felt as if none of it existed.  Everything was right in the world.  Sure, I still had to do treatments, take my cocktail of pills, do IV meds, study for a midterm, homework, etc, but it still seemed like I had escaped my other world for just a few moments.  Just merely existing, taking in what was around me, appreciating the mere beauty of it all, and just breathing were all that really mattered.  

As Thursday morning approached and our time to pack up the baby camper became a reality, I began to find myself getting crabby, restless, and nauseous.  I didn't want to think about my world so patiently waiting for me back in Sioux Falls: the appointments, the treatments, the renewed strength and stamina I needed to somehow find to continue to fight and win this current battle with my lungs, teaching, and class.  Following class, Thursday night I would drive straight to Minneapolis for a morning doctors appointment with my MN CF team: thrown so quickly back into the realities that are my world.  

Reality

We all try to escape, whether it is in a day dream, looking up to the sky to take in its beauty, losing ourself in a conversation with a friend, or taking off with bags packed on a quick getaway.  The one thing that still remains though, is our world is still waiting for us wherever our great escape may lead us.  We may be able to escape our life for a bit, but we cannot outrun it.  It's the only life we have been given, and it is ours to live fully. Even if it is filled with doctors appointments, PICC lines, IV antibiotics, and extra treatments: this life is all mine.  I am grateful for the little escapes, but know they cannot last forever: it's always back to life, back to reality. 

There will always be an open road in which you yearn to set out upon, leaving all the weight of your world behind.  But this is the life you have been given, you are strong enough to live it, and no one can live it like you can.  Sure, we all need an escape every once in awhile, but your true, beautiful life will always be waiting.

Are you living your life or trying to make an escape?

Stormy Skies

A crack of lightning streams across the sky while the strong roar of thunder reverberates through the earth like the deep bass of a pipe organ.   A chorus of voices sing out with each drop of rain that resounds against the window pane.  The sounds and sights of summer have returned.

Perfect Night

This past week has been filled with the most beautiful and gentle of rains.  It has also been filled with some harsh summer storms that seemed relentless and uncompromising, leaving a path of destruction behind.  What also filled this past week? Some of the most beautiful and still evenings I can remember.  The sun was beginning to set and everything seemed to glow of a beautiful pink and gold hue.  For a moment it seemed as if life was standing still, that I was holding it lightly in the palm of my hand.  I could almost hear the shifting of the sky as the stars began to replace the sun bathed sky.   For a moment, everything seemed absolutely right in the world.    

Afternoon Storm

The next morning I awoke to an intense rain only to be followed by beautiful beams of sunlight that poured out over everything.  How very quickly things changed.  One moment the trees were soaking in the warm rays of the sun, and the next, tornado sirens were proclaiming their heed of warning.  In a matter of what seemed like just moments the sky opened up and let out a great fanfare: hail, rain, thunder, lightning.  The chorus grew louder as the drops of rain and hail poured out from the sky with more power.  We watched helplessly from inside as mother nature seemed to quickly devastate the world outside the stucco walls of our home.  

Eventually the clouds lightened and began to break apart, the rain ceased, and the sound of thunder was only a subtle rumble in the distance.  Soon, the radiance of the sun painted everything it could reach.  The evening turned into another one of pure beauty and perfection. 

The Storm & CF

What does any of this have to do with CF?  The raging storms of CF have been quite merciless lately.  It seems the atmosphere is just right for the makings of harsh storm.  My PICC line is still adorning my arm and a new course of treatment is underway.  In just 3 weeks my lung function went from 5O% to 37%, all while on IV and oral antibiotic therapy.  We've changed courses and plans in hopes that something will alter the direction of this storm.  

Hail

Like the weather, the conditions of CF can change so quickly.  In just one day CF can turn the sun kissed skies into an unforgiving storm.  

Renewal

Life comes with many storms and days filled with rain, but each one of them is simply beautiful.  As the warm rains of summer pour out from the sky, the earth is renewed and replenished.  Without those storms, the sun filled days would seem less bright, and we wouldn't appreciate the true beauty in those still and beautiful nights.  We can never be sure when a storm may come, foresee how strong it will be, or how much rain will fall, but we can be certain that the sun will shine again. We can be certain there will be days of endless sunshine and beautiful still nights.  The more rain that falls just means bigger puddles to splash in, and if the stormy days seem to never end, we can always dance in the rain.  

Another Beautiful Evening

This CF storm in my life shall too pass.  The destruction caused by this storm may have lasting effects, but that doesn't mean I won't fight to rebuild what has been lost or destroyed.  There will be days with light rain, days of sunshine, and days with fierce storms, but for each day I am truly grateful.  The beauty of life is impossible without the renewing rains from a storm.  I leave you with these words from a dear friend: "Anyone who says sunshine brings happiness has never danced in the rain." Love to you all.  

What storm are you weathering?

Vitality

[Blog entry created by Mark Bonnema]

New crop of flowers

It was a beautiful day here yesterday in Sioux Falls, SD. We took advantage of it by going out and buying some flowers.  If you have ever been to our backyard in the summer, you know that we tend to go a little flower and herb crazy. We fill every square inch of our backyard with pots, buckets, chicken feeders, bushel baskets, old dresser drawers, hollowed out tree trunks, old suitcases, and any other receptacle we can find with a myriad of colorful annual flowers and herbs. Ashley is and always has been the mastermind of our backyard garden creations. I merely have to help transport them to and from the car and take all the pots into storage at the end of the season, otherwise I sit back and enjoy. 

Typically it is a delight to watch Ashley stroll the aisles at the flower shop (at least for the first hour or so…). But yesterday I could tell Ashley was pushing herself to keep going by the end of the day. Ashley was tired, sore, and fatigued. When flower shopping becomes a chore, Ashley’s health is most certainly compromising her vitality.

Waiting

Often by this time of year we are enjoying the first blossoms of our perennial plants and the trees are in full leaf. This year, however, with an abnormally windy and cold spring, the plants are sluggish and behind schedule. We keep wondering if some of our plants have died, or have yet to break dormancy for the year. At a time when our backyard gardenscape should be coming to life, we wait, watching hopefully for our garden to regain its vitality.

We have always taken our vitality for granted. Never in the six years that we have lived in our home have we waited with such longing and anticipation for the first blossoms and flowers of spring to break forth. We also have never had to wonder if Ashley will have the energy and stamina to plant the annuals and herbs at the end of the day when the rest of life’s work is done.

Last Year's Beauty

We do not have to hold out a great deal of hope that the season will turn, the weather will improve, and the full force of spring will descend onto Sioux Falls. The forecast for this upcoming week already looks much improved. We will probably even have to turn on our air conditioner by midweek! We hold out the same kind of hope for Ashley’s health and vitality. She will get through this set back as though it were merely an unseasonable stretch with the promise of “normal” waiting just around the corner.

Seasons

But with every unseasonable stretch of health, our hope is tested. “What if’s” grow larger with every setback. What if this infection does not subside? What if the antibiotics affect Ashley’s nervous system, liver, or kidneys again? What if they don't work? What if her energy and vitality do not return as quickly or to the same extent as before? Unfortunately, Ashley’s health is not as steady or predictable as the seasons. We cannot always assume that things will turn for the better or return to normal like the seasons.

Pergola last year

I hope and pray this current setback is soon nothing more than a memory, like the unseasonably cold spring. The love, support, and kindness of so many wonderful family, friends, and healthcare team members helps more than you will ever know! Thank you all.

Last year

Tomorrow is another day. There are flowers to plant! Make the most of your vitality today, and watch it blossom tomorrow!

The Cost

I have a challenge for you today.  In the course of your day pick one of the following to thoughtfully experience or think about:  pouring yourself a cup of coffee, putting your seat belt on, writing your name, playing the piano, holding a spoon, brushing your teeth, typing on a keyboard, holding a camera, or climbing out/into bed.

Do you think about the act of doing or experiencing any of these activities, ever? Is there ever really a need to do so?  For the most part, no, our bodies just respond to the will of our mind and we never think about such things as how our hands feel gripping a coffee cup, how the pen feels between your fingers, or how the soles of our feet meet the ground.

But what happens when you wake up and your body doesn't work the same as you have always known it to work? When there is trepidation in every simple action? What happens when your hands constantly feel like they're asleep: numb and tingling as if being pricked by dull hot needles?  What about when your coordination and balance are skewed and unsettled?  Suddenly, the steady and stable person you have always known has vanished, leaving you uncertain and hyper sensitive to the world around you.  

Cost

Some days I wake up and I feel like my body doesn't belong to me: it's not my own.  The very life saving medicines working to fight CF also come with a cost. My body. Every addition of a life prolonging measure and medicine comes at a price.  Some days my body feels like my own:  the body that I used to know and trust so willingly. I am the coordinated and sure footed me.  I am so grateful for days like this.  They seem utterly amazing.  Then there are days when I feel like a complete stranger in my own body: like I am meeting it for the first time.  I have to consciously think about how tightly I am gripping my toothbrush, how I must use two hands to take a drink out of a glass, how to hold a pen and write my name, and how one foot goes in front of the other.  My body is pretty tough, but some of the drugs to treat CF can brutally make my body feel beaten.  My hands, feet, and tongue feel numb.  My legs feel like jello.  My fingers tingle.  My body uncontrollably gets the "shakes." So badly, that I had a student ask why I was shaking yesterday.  The most frustrating part of it all?  My same mind feels it no longer has control over its own body.  

What do I do on these days?  Try my best to hide it from the world, grip the glass tighter, and do everything with extreme focus.  These days make me really live in each moment: I am aware of all my surroundings and how my body is working in that environment.  These days make me so grateful for the days I feel like "me." No one ever said this journey was going to be easy, and I am strong enough to live the life I have so graciously been given.  I am still loving, I am still passionate, and most of all, I am still breathing.  Every extra beautiful breath experienced with the people I love is worth the cost. Love to you all. 

Do you feel like a stranger in your own body?

  

Just Jeanette

[Blog entry created by Mark Bonnema]

Ashley as "Just Jeanette"

This past weekend Ashley sang a role in the comedic opera Too Many Sopranos. She was marvelous! The notes flew off her vocal cords and tongue with seeming ease and definite grace. I was so proud of her! She did it and she did it well. I am not an opera critic, and I must admit that I am a bit partial, but I thought the performance was wonderful. Congratulations Ashley, aka “Just Jeanette,” and congratulations to the entire cast and orchestra that was involved.

I watched for weeks as Ashley spent hours practicing, studying her score, and traveling daily to rehearsals. Finally all of her hard work was coming to fruition and it was the week of the performance. What happened but her voice began to betray her and threaten to ruin all she had worked for! Tuesday, Wednesday, and Thursday of this week, Ashley could barely speak.  Of course, Ashley did not give up, did not fret, nor become despondent.   

Rather, she kept her spirits about her and regained her lost voice with the use of tea, cough drops, rest, oral antibiotics, and steroids (prescription) in time to sing performances on both Saturday and Sunday.

Just Jeanette and Nelson Deadly

I do not know from where Ashley draws her strength and determination. I often think there must be a wellspring of life and energy within her, the way she carries on with determination day after day. Call it personality, natural endowment, or a blessing, it is impressive any way you frame it. I love her for it and I admire her for it.

Dreams

This weekend Ashley accomplished a lifelong dream of hers. She sang a role in an opera.  I am very happy and pleased for her. I certainly hope this is the first of many operatic roles she has the joy of mastering and sharing with the world.

The divas

Sometimes realizing a dream comes at a price. While Ashley works to accomplish her dreams and realize her hopes, CF is working equally as hard in her life and body. It never takes a day off. It constantly holds the threat of infection, fatigue, and pulmonary bleeding over her head. With the opera done and a dream realized, Ashley must now turn her attention to coping with CF and dealing with her body’s ailments. This morning Ashley goes to the hospital to have a PICC line inserted. IV antibiotics will follow sometime early this week. An infection is beginning to brew. It is not fair that Ashley needs to pay such a price just to pursue her dreams. I wish it were not so. I am so very proud of you Ashley, you worked hard and with a great deal of determination and persistence, you accomplished a dream.

What dreams are you pursuing? Are you willing to pay the price?

A special thank you to JoAnn Lambertz for the great photos used for today's blog!

*Ashley had asked that you all wear purple today to show the world your connection to CF.  Please share with us a photo of yourself and loved ones sporting their "purple pride."  You can either tag Ashley on Facebook, or send an email to ashleyballoubonnema@gmail.com. *