The Unsettled Sea of Stability

Within me lies a ceaseless current that fiercely drifts between the unpredictable seas of desperate contentment and self-resolve. It’s a tumultuous tide that finds a constant tension between passionately wanting and expecting more of myself and gratefully embracing all that I have. A strong current is rooted in a reality that lies just beyond sight at water’s edge – a devastating cliff silently existing beyond my view. I am sailing amidst the dark in unknown and unpredictable waters, always cautious of becoming too comfortable with life, as I know the course of life can quickly change.

A Restless Current

The salty seas of CF are steady right now. This past Friday at my CF appointment I blew a FEV1 of 50% (lung function). My last three lung function tests in the last five months have all been within a percent or so of each other. The resounding theme of such a number being the word “stability.” I’d be lying if there wasn’t an underlying current of disappointment. I know, it’s unfounded and ridiculous. So, you must be wondering the reason for such a restless current of disappointment? Shouldn’t I be relishing in the waves of life’s present stability? I should, and there is an undeniable part of myself that truly does cherish these beautiful moments of stability.

But, I crave progress and gain as I feel it distances me from the realities of CF. It makes the existence of CF in my life less harsh and painful. In every quiet moment of stability I feel as if I’m further being pushed out into open water – more exposed and vulnerable. Maybe it’s because I have seen and felt how quickly the unforgiving storms of life can rage - engulfing me in its crippling powerful wake. Maybe it’s because I’ve tirelessly fought for every breath of stability - always consumed not with the question of “if” but “when” another storm will overwhelm me. Maybe it’s because I’ve seen the price I and those I love have had to pay and the changes we’ve all had to endure just to cling to stability - always seeing the reflection of my own disappointment in their faces when I am not able to tell them of any gain. Maybe it’s because within this time of stability I realize more and more what can all be lost. 

Along this journey, harbored deep within me is also a constant guilt. I recognize how incredibly lucky I am - always knowing I could be sailing a very different sea of CF right now. How can I be so wholly grateful for every beautiful breath while still wanting more - desperate for any sort of positive progress? I know there are so many people with CF that would do anything for such stability and 50%. I want calm seas and more beautiful breaths for all of us.

Change

The past year has come with great self-reflection and many life changes. An ever-present desperation to live fully in every moment was working against me. For most of my life I ignored my tired body, constantly pushing harder to try and distance myself from the progressing undeniable realities of CF in my life. As a storm of CF would rage, I’d batten down the hatch and sail myself unknowingly further into the storm, thinking ultimately I would sail through the tumult of CF. But I never fully sailed through, I just steadied the boat – always knowing the seas below me were waiting for the right winds to catch me off guard. And with unforgiving force they did, threatening to quickly capsize me and plummet me into the powerful stormy seas of CF.

But I continued sailing – my fervent sight always set upon the horizon and calm waters. Some difficult decisions were made that January of 2015 and little did I know more would only follow. Those months were incredibly difficult but these days of stability are filled with their own unique struggles. Even within this stability are brutal reminders of the progressive and unrelenting disease of CF within my body. But the most difficult thing that challenges me? Protecting me from myself. I’m constantly trying to restrain myself from easily falling back into the deep seeded belief that I am invincible and unbreakable. I’m constantly striving to keep this ship balanced upon the unfair waters of CF that lie below. To get to this point of stability, it has taken great work and dedication. I know it’s this cautious self-awareness and this strict self-discipline that have allowed these steady tides of stability. I know I will never out-sail CF, but I can do my best to weather each current that I’m graciously given.

Stay the Course

I’m learning to embrace this stability while always charting my journey upon an endless hope and contentment. I must not misinterpret lifeless stagnancy for stability. After all, my life is anything but lifeless. Each beautiful breath is filled with more life than ever. Today I will graciously cling to the stability of 50% all while tirelessly fighting to keep it. Love to you all.



Keep your eyes on the horizon and enjoy today’s steady waters.

Finding Your Voice

The voice.  It is the purest reflection of one's self and is the instrument from which our passions pour. It carries our emotions, gives wings to the thoughts that resonate within, and transforms our ideas into purpose.  It embodies the complexity of our entire being, yet it is born out of a simple beautiful breath.  

Defining Who I Am

Singing has been at the very core of who I am for as long as I can remember. Just like CF, it has always been a part of me. It is the very spark that lives within me and renews my soul. While there is truly nothing else that feeds my soul the way singing does, it isn't singing itself that has made my life so incredibly full.  It is the people I have gotten to make such amazing music with and the act of lending my voice to something greater than myself that truly gives meaning to my life. For the last 10 years I have passionately drown myself in studying music: receiving my bachelors degree in vocal music and currently pursuing the last months of my masters degree in vocal music. It hasn't been easy by any means, but the reward and inner joy I get from feeling the air pass through my lips and the song of my heart being painted upon each breath is incomparable.  To be honest, my ability to sing has always meant that I am still alive both physically and mentally.  It has represented that CF is not winning: that I am stronger than CF. Of course, CF has made singing difficult at times, but that just means with each painful breath I know I am alive.  It has forced me to treasure those moments when my body feels "normal" and the air seems to just flow from within.  But it has also made me fight even harder through those moments I feel powerless and as if CF is trying to destroy the song of life that sustains me. The entirety of who I am has been defined upon my voice and my pursuits as a musician. So what do you do when that very thing that has defined you is torn from your life? When that very thing that feeds your soul and gives you life seems merely impossible?

Sing A Song

I sang for the first time in over 5 months just a few weeks ago. There's nothing I've been mourning more these last few months than the loss of my voice. For much of that time it was difficult to speak, let alone sing. There's nothing I wanted more desperately than to just merely open my mouth and have a note escape from my lips. Not only was I desperate to breathe, but I was desperate for the song that lived within to be freed again. I always knew my voice would be undermined by CF sooner or later, and ultimately be devastated because of it, but I never could have prepared myself for the heartache and loss I've felt over it actually happening. It seems I've had to relearn just how to simply breathe again, not to mention sing. But, I am singing again. I know it will never be the same, as this last CF battle has left my body so different. But I am singing and that's all that matters. Whatever the future may hold, the voice within me will always continue to sing, it just might be a different song. 

1 Year

Regardless of what CF has stolen from me, the song within me will be ever present.  I will forever be finding my voice, in whatever medium that may be. A year ago I published the first entry to this very blog. Little did I know what would lie before me. I had started the blog as a way to allow those I know and love into my life and see who I really am: to unveil a part of me that I had hidden from the world my entire life. It had become more and more impossible for me to keep hiding and running from the realities that are CF. This blog is not about me, and I realize that even more every day. It's about all of you: about the goodness, the love, and the endless support you have all shown me. That my voice's purpose is to reflect the beauty that is so present in every breath I am given. 

I've always defined myself by the use of my voice: the expression of the song that lives within me and that illustrates my life. I am realizing that I have not lost my voice at all, but instead it is just being used differently. That finding my voice is merely looking inside myself, breathing bravely, and sharing the song that fills my soul in spite of CF. 

Thank you to each and every one of you for being a part of this incredible journey with me: for believing in me. I am left humbled beyond words and filled with endless gratitude for each of you. My life is so beautiful, and I am truly thankful for each beautiful breath that I have been given and each song I've been able to sing.   Love to you all.  

Sing it, shout it, write it: breathe bravely and find your voice. When you find it anything is possible.



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Illumination of Gratitude

To be humbly grateful for every moment, relationship, and breath both past and present, while still holding out hope for all the greatness yet to come, is something I will forever strive to embody and illuminate.

In the darkest and most difficult of days, the glow of gratitude that burns within can seem as if it grows dimmer with each setback, each realization that I am not in control, and each panic stricken gasp for air. To say these past few weeks have been difficult, incredibly emotional, and frustrating would be an understatement.

A Stranger
I am a mess of emotion.  I have found it harder and harder to keep my emotions in check, to paint a stoic, strong, and graceful façade on the for world, and to hide my own growing disappointment in myself and my lack of control over CF.   Never once have I ever felt that CF has had control over me. Never has CF threatened to dampen the glow of life from within, never have I felt it has threatened to get the best of me.  Until today.  CF is relentlessly attacking my body and mind.  My body aches with every breath, cough, and movement as if every rib and muscle is bruised beyond beating.  Not to mention the beating my body has been taking from antibiotics and medications coursing through my veins.  The worst part of it all isn't the battle raging within my body, it's the battle raging within my mind: feeling like a complete stranger and prisoner in my own skin.

In the last week there has been a new PICC line placed, signs eluding to liver damage, the severe side effects of a brutal new drug, the evaluation and stopping of most antibiotics because of stress on my liver, increased exhaustion, low Blood Saturation levels, and continued low lung function that forbids to give me any reprieve.  I can't help but ruminate over what I did wrong, where I took a misstep, or how I could have allowed CF to take such control over me when mere months ago I was feeling the best I have in years.

Illumination
Amidst it all, I still am filled with so much gratitude.  I am grateful for any level of normalcy that distracts me from the reality of CF, anything that makes me momentarily forget:  grad school, friends, teaching, travel, living for the hope that tomorrow is a new day.  I will awake with the hope that I will sing again, that I will drink in air without thought, that I will climb the stairs without every muscle burning, or my body betraying me.  Through the best of days and the hardest of days I will always be grateful.  I will smile through the tears,

Through the mess of emotion there still burns a steadfast glow of gratitude from deep within.  That light can never be extinguished no matter what CF throws at me.  In the most difficult of moments, the smallest ounce of light will always pierce the darkness.

My life is rooted in the endless gratitude I have for each of you.  I am grateful for every single beautiful breath, no matter how deep.  For every endearing word of love and support.  For every meaningful hug that is held for just an extra moment.  For my CF team who means more than they'll ever know.  For my friends and family who tirelessly fight beside me.  For Mark and his unyielding commitment to being strong for me.  For each person who believes in my future.  For each beautiful moment that has made up my amazing life thus far.  With great love and thanks to you all.

Let your life be illuminated by gratitude.  What are you grateful for?

Invisible

Cystic Fibrosis is considered an invisible disease, yet it is anything but.  Meaning, I look perfectly healthy to the unknowing eye, while silently a battle within rages.  CF may be concealed beneath the façade of my body, conveniently hidden from the world around me, but underneath it all it is a relentless disease trying its best to undermine me from within: trying to silently steal every breath.

I've spent a majority of my life keeping any signs of CF concealed from the world around me: hiding my dark eyes and pale skin beneath pounds of makeup, wearing clothes to hide my barreled chest, being conscious of how much I am coughing in public, wearing long sleeves to hide a PICC line, and mindfully deflecting attention from myself in hopes of protecting the ones I love from the realities of CF.   CF may seem invisible to the untrained eye, but it is not.  It's a silent, yet deadly force that affects the lives of so many in my life.

What Lies Beneath

As my CF progresses, it is becoming more and more difficult to conceal.  It may be still invisible to most of the world, but as I look in the mirror, it's anything but invisible. I see CF peering back at me through my own tired, sunken eyes.  I see it in the eyes and faces of the people close to me: a tinderbox of emotion bursting within the silence of their gaze.  I fear that they can see straight into me as our eyes meet. I fear they can see the mess of emotion churning within me, the exhaustion, the relentless war reeking havoc within: that my body is betraying me.  But most of all, I fear they will see how weak I truly am.  

This morning things are as usual: I will go out into the world with makeup carefully painted upon my face to hide the exhaustion that darkens my eyes and paleness of my skin.  The world will see me as healthy, never hovering for a minute on the thought that each breath I am given is such a gift.  CF will be invisible.  

But this afternoon I will walk through the doors of the hospital and be embraced by people I so greatly love and trust with my life.  People who see and know the invisible side of me: my CF Team. People who work so tirelessly to give me another tomorrow, who so endlessly support me every day in every part of my life.  People who help pick up the pieces as I continually try to max out every ounce of life.  My Team never gives up hope.  For each of them, I will always be so truly grateful. 

So, with the guidance of my CF Team, I will be undergoing sinus surgery and a bronchoscopy this afternoon.  I shall be having a bit of an "inpatient retreat" as we monitor my lungs post anesthesia and post surgery. 

My Beautiful Life

It still seems unbelievable to me at times, that my body is literally silently destroying itself from within.  For the most part, my reflection tells me there can't be anything possibly wrong, or if I see any signs of CF, I do my best to simply cover them up.  If it is invisible to the world and to myself it doesn't exist, right? But when I am faced with the images of what lie beneath this façade, the pain, and signs of sheer exhaustion, I am forced to know a different truth.  Invisible or not, I will always have hope that it someday will be completely invisible. 

This morning I will put a smile on my face, be grateful for every moment, every person, and every breath life has granted me.  I am grateful for the life I have been given: the visible and invisible.  Today is just another part of my beautiful journey.  Love to you all. 

What is "invisible" in your life?

Seasons of Life

Sometimes when you go out into the world with the intention of looking for a way to help others, you end up finding yourself.

New Time

It's my very favorite time of the year: the peonies are blooming. Just like the peonies blossom in the Spring, unfolding their beauty for all to enjoy, they only last for a short time.  The most wonderful part though? They will bloom again next Spring.   Just like the peonies, my journey must continue to the next season of life. After 2 more postings, my stretch of daily writing with Breathe Bravely will come to an end. Just like the seasons return though, I too, shall return to Breathe Bravely when the winds of life stir within me, needing to be shared.

Words cannot adequately describe this journey of these past two months.  In the beginning I thought I was just educating my friends and family about CF, giving a voice to other people with CF, and divulging a portion of my life I had only allowed a very few close people a glimpse into.  There is no possible way I could have known what this experience would mean and how it would change me.  Has it changed you?

Honesty
 How has it changed me?  I don't feel like I am lying to everyone anymore.  Not that I was ever being "dishonest," but I worked so hard and endlessly to hide CF from everyone.   I think about how exhausting it was, now that I am looking back at it all: 27 years of denial and trying to bury it away from the world.  As CF progressed, the harder I fought to paint myself up and put on a good face for everyone.  To be honest, I did it for myself, too.  Some days require a bit more make-up to fool the world, but I have become pretty darn good at hiding the shortness of breath, exhaustion, fear, and pain stirring within. The best compliment? People being shocked, astounded, or simply saying, "I had absolutely no idea."  I have hidden the truths of CF from a lot of people for a long time: even the closest of people in my life.  I never want the people I love to worry, especially about me.  I don't want them to look at me with heartache in their eyes thinking, "that's so sad" or "how is she really doing?" CF is a part of my and will continue to be more so as the seasons change.  That's my life.  Each wonderful moment made possible because of each beautiful breath.  The breaths will get shorter, the fight will get more intense, but my love, gratitude, and passion for life will only grow.  Just as I am so thankful for the season of Peonies, I too am thankful for this season of honesty.  

More
What else has this blog shown me?  Just how many truly amazing people I have in my life and how much good there is in the world.  My life is beyond beautiful.  I see the beauty of my life reflected in your smile, your hug, your kind words, your laughter, your tears.  I only hope I can pay forward and repay all the love and kindness I have been shown.  Thank you to my friends, family, my CF team: each beautiful breath I take is because of you.  Love to you all.

How has this experience impacted you? Be honest.

"One isn't necessarily born with courage, 

but one is born with potential. 

Without courage, we cannot practice any other virtue with consistency. 

We can't be kind, true, merciful, generous, or HONEST."

-Maya Angelou

Sorry

[Blog entry created by Mark Bonnema]

Another restless night. When will sleep come?
Another coughing spell. When will the inflammation settle down?
Another bought of pain. When will we find a safe and effective pain reliever?
Another infection. When will the PICC line come out?
Another drop in lung function. When will things go in the right direction?
Just another day in the life of Ashley Ballou-Bonnema.

I would give anything for Ashley to have one good night's rest, free from the steroid-induced insomnia and coughing spells that wake her up when she finally does find sleep. I would go to the ends of the earth to find the elixir that brings peace to her lungs and ceases her relentless cough. I would spend every waking moment extracting bacteria cells from her ravaged lungs, if only I could. The disease and its slow, steady advance on Ashley's life often leaves me feeling helpless. I bear witness to the sleepless nights, the coughing, pain, and shortness of breath. But there is very little I can do to alleviate Ashley's suffering.

What can I do? How can I help? I try to offer counsel and encouragement, but I have no idea how much energy and will-power she has exerted just getting out of bed and getting ready for the day. I cannot fully relate or understand what it is like to live with the disease each and every day. I try to soothe and ease the pain by rubbing her back and aching joints, but it is merely a temporary solution to a chronic problem. The pain always returns. I try to help keep her nutrition status up by cooking meals that she enjoys and that are high in calories. Still, her weight falters. What can I do? How can I help?

Helpless
Over the years I have learned to accept my role as spouse and supporter, as the one who bears witness  to the struggle, but can do very little to lighten the burden. Ashley often apologizes to me, apologizes for 'being a burden,' or for 'holding us back,' or 'for being sick,' as though I blame her and hold her at fault for how CF affects her life. She does not realize that I am the one who feels sorry, helplessly so. Sorry I cannot do more. Sorry I cannot find the answer or the cure. Sorry I cannot make the disease and all its symptoms go away.

If you know Ashley at all, you know that she has little to no time for pity, sorrow, and helplessness. While I am confessing my feelings of helpless in relation to Ashley's relentless battle with CF, Ashley and I intentionally choose to live life with as few regrets as possible. Each and every day is a new day filled with the promises of togetherness, adventure, and challenge. How do I best help, support, and love Ashley as we daily adventure through life? By treating her like she is normal. By refusing to see her as "sick," and by never treating her as though she were incapable or a burden.

Normal

Ashley longs for normalcy- to be treated like everyone else. She wants to be seen for the person she is rather than the health condition she bears. She longs for people to relate to her according to her personality, character, abilities, accomplishments, and potential. She hopes people see a beautiful, brave, spirit-filled woman with things to offer this world. She just wants to be "normal."

While our life is anything but normal and we cannot ignore the effects of CF in Ashley's life (doing so would be life threatening!), Ashley does not let CF define her life and I very intentionally follow her lead. I choose to treat Ashley as Ashley for the beautiful person that she is. When we need to deal with the challenges of CF and face it head-on, we do. But in the moments between, we live and cherish life together.

How do I help? What can I do? Even though she is anything but, I treat Ashley as though she is normal.

How wide are the boundaries on your "normal?" Can you stretch them today? What, or who, might you see anew?

The Gift of Life

Today has been set aside specifically to remember and pay tribute to those who have given us the freedom to live such beautiful lives.  We also take this time to remember all the loved ones we have lost over the years: flooding our thoughts with memories of their laughter, smiles, and the impact they have left on our lives.

Who are you thinking about today?  What did you love most about them? What do you miss?  What if a part of that person still lived on: gave new life?  Yes, I am talking about being an organ donor. 

In end stages of lung disease caused by CF the number one option for survival is a double lung transplant. Sure, the general population thinks that a lung transplant will easily cure everything: solve the problem of CF, but it doesn't.  A common question I am asked is, "why don't you just a lung transplant?" The surgery itself is highly risky, and then there is recovery, coupled with the fears of chronic rejection.    But what do you
do when that may be your only hope? What if it was your only option at another  2, 5, or 1O more years with the people you love? It was your only chance at any future? Your only possibility to breathe in more breath?

The Truth in Numbers

5O% of people die waiting on the transplant list due to shortage of available donors.  About 15O people with CF received a lung transplant last year.  8O% of People with CF who get the call for a match and survive the transplant, are still alive after the first year.  5O% are alive after 5 years, and only 1/3 of them are alive at 1O years. A lung transplant does not cure CF.  People with CF require 2 lungs, otherwise one would infect the other. The new lungs will not have CF, but the rest of the body's organs are still ravaged by the disease: kidneys, liver, pancreas, etc.  Also, there is a great risk of developing lung infections because of the immune system being suppressed.  Post transplant 6O + pills a day must be taken for anti-rejection purposes.  The body sees a new set of lungs as a foreign intrusion and tries to rid itself of the unfamiliar and what it thinks are a danger.   These drugs suppress the immune system to hopefully allow the body to take to the new lungs.  Antibiotic-resistant bacteria that infected the old lungs may still be present the sinuses and upper respiratory tract, causing the new lungs to take on the life threatening bacteria again.  Infection and chronic rejection are serious, common, and deadly factors of having a lung transplant.  

When the time comes and CF has progressed to end stage, a person with CF is confronted with whether or not to begin the journey of getting on the transplant list.  The CF team will go through extensive evaluations to make sure someone's body and mind are strong enough to endure the physical and mental demands of a lung transplant. The body has to be strong enough to be able to endure the high risk surgery, and then be strong enough to withstand the shock of recovery: physical and mental. 

My Choice

Years ago I would have told you firmly that I would never even consider a lung transplant being an option: I never thought I would actually need one, or that when when the time presented itself I must have reached "my time."  Denial is a beautiful thing until you're confronted with the hard truth that sometimes is your life.  At this moment my current lungs are stable and "healthy" enough to not have to discuss the option of a transplant.  But that day will come, and I will be confronted with the desperation of wanting so badly to be given more time. What would I do with the promise and hope of 5 more years? 1O years? More?  When that time comes I don't know what will happen or what we [me, Mark, my CF team] will decide, but for now at times the question itself plagues my mind.  With every set back, drop in lung function, PICC line, the future of making that decision becomes more real.  For now, I need to do everything I can to keep these lungs as "healthy" as they possibly can be, for as long as possible.

Hope

There are lots of people that are living long great lives because of a lung transplant: no longer having to breathe bravely for every moment to live.  They are no longer bound to watch the world pass them by, or feel as if time is slipping through their hands.  The honest truth about organ donation is someone else's life must be lost in order for someone else to gain.  We have all experienced loss in our lives, but what if that life we lost could still live on?  What if in that tragic loss there was some good that could be done? What if our grief gave someone else hope?  What if it gave a child its mother? A husband his wife?  A family its daughter? A best friend?  

Today we are celebrating the lives of those we have lost and for those who have given us our freedom.  We all have the power to give freedom.  Freedom from oxygen tanks, hospital beds, life support, and infections.  Please join me and become an organ donor: check the box. We have the power to give life.  

What would you do for extra time with the people you love? To live?

Please take the time to watch this moving documentary chronicling Eva's journey to transplant.  It sheds a whole new light into the physical, mental, and emotional journey of CF.  It can be found on Netflix.  

65_RedRoses

Outrunning CF

For the last six months I have solely been running on adrenaline: pushing my mind and body more and more each day trying to outrun CF.  The busier I stay and the more I try and pack into my day the less room there is for CF.  It may sound crazy, but I have mastered it pretty well.

The minute I slow down or let my guard down, CF seems to come at me with a vengeance.  It sneaks up on me and attacks my body with everything its got. What do I do?  Fight.  I have too much life to live to let CF get in the way. 

After pushing my body beyond its limits for the past 6 months and living on adrenaline, my body crashed on me this week.  Even 2 weeks into IV therapy my body decided to revolt.  Monday night I spent the entire night coughing, feeling I couldn't catch my breath and there was a 25 lb weight sitting on my chest.  My body was chilled and sweating, and I ached all over. When I tried to get out of bed I could hardly walk down the stairs without feeling my knees and ankles were going to give out.  My eyes hurt to even open them and it was difficult to focus on anything.  How could this be happening? How could my body be doing this to me?  It seems the harder I push my body and the longer I try to outrun CF, the greater the debt I seem to have to "pay" to CF when I do slow down for a moment.  It's always waiting in the corner to seek its revenge, waiting for me to let my guard down.

I am pretty strong willed and minded: usually thinking I can "outthink" CF or overcome it with my mind and shear will.  That is until it fights back with everything its got, catching me off guard, and reminding me of its presence in my life.  CF may be present, but it will never be more powerful than my will to live fully and breathe deeply.  I will pay my debt today, but tomorrow is a new day that will be all mine.  I will lace up my running shoes and outrun CF.  There is too much life to live to let CF dictate my life.  Weeks like this make me appreciate the days when I feel like I am in charge of my life, when I feel like I own each beautiful breath.   Love to you all. 

What are you trying to outrun?

Sunshine On My Shoulders

Take a moment to step outside and close your eyes. Quiet your mind listen to the world around you.  What do you hear? Feel?  There is nothing I love more than stepping outside this time of year and feeling the warmth of sunshine upon my face.  This morning I hear the chirp of the cardinal and the coo of a morning dove.


I and a large majority of people who call the midwest home are pretty naturally fair skinned, but our complexion becomes even more "lily white" during the winter months when the sun's rays are less powerful and we are shut up in doors.  It seems my skin becomes so pasty white it is almost reflective when it sees the sun for the first time in the Spring.  One of my very favorite things also in the Spring is to sit beneath our pergola or in the swing Mark made out of an old victorian bed frame.  For a brief moment life seems to stop and all is right in the world.


Photosensitivity 
What if after ten minutes of soaking in the sun's warmth your skin begins to burn or you start to break out in hives from the heat?  Your cheeks begin to get hot, the scalp of your part begins to singe, and the tops of your hands and feet begin to redden and get bumpy.  The sun your skin so loves and craves only inflicts a lasting distress.  My skin for the last decade or so has been more and more sensitive to the sun, but in the last year and a half some of the medications that are now part of my daily life to fight CF make my skin extra sensitive to the sunlight and cause it to easily burn.  How do I fight back? I wear high SPF sunscreen, long sleeves, sunglasses, a big floppy hat Mark bought me, and sit in the shade.  Gone are the days of a golden summer sun kissed glow. Pale and pasty are my new tan, or if I am in the sun too long, the shade of a steamed lobster.

I still crave the sun.  I still love closing my eyes and feeling the warmth on my cheeks. I love being still for a few moments, forcing myself to feel and hear the beauty all around me, to let the world seem like it is all mine for just a moment.  Love to you all.

Step outside today and bask in the beauty of the sun's warmth, but don't forget your floppy hat.

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!