Generosity

How do you show gratitude? Do you send a card? Flowers? Give a gift? A hug?

Today I am struggling. Struggling to find the words and actions to show how truly grateful I am.  How do you adequately thank someone for literally giving you another breath? For giving you the gift of life?  Not just watching from the sidelines, but actually fighting in the game?  

This morning was the Great Strides Walk in Sioux Falls.  It took all I had this morning not to be a complete emotional hot mess.


Emotion
I still am on the verge of being overcome with emotion. I still feel that lump in my throat and my eyes at a single thought of this

morning start to well with tears.  What amazing people I have in my life, and it all started with a single step several months ago by my dear friends.  I could have never imagined the emotion, the people, the support, and love that has led up to today.  How can I possibly ever thank everyone? How can I show all of you how much you truly mean to me?  I think I will go my entire life searching for the right words and suitable actions to show my gratitude.  Nothing will ever be enough.

The Act of Kindness
Today's walk was truly beautiful. Team Ashley for Sioux Falls raised over $6,OOO. Wow. This leaves me absolutely speechless.  The generosity of people has been overwhelming. All I can offer is thank you and my love to each of you.  Your generosity, love, and, support mean more than you will ever know. The event itself raised over $156,OOO.  That is absolutely amazing.  That could be the cure.  That could be one more beautiful breath. That could be another year with friends and family.  That could mean dreams.  That means hope.

There is so much good happening in this beautiful life. Thank you, from the depths of every brave breath for walking, donating, and showing endless love. All the love I possess to each of you.

How do you show your gratitude?

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?

Control

Our lives are wound together by complexities we can and cannot control. Think of your life and the influences in which you have had total control over.  Now,  think of those circumstances in which you have absolutely no control.  Those moments that are out of our control can put us to the test, make us lose faith, or cause us to cling even tighter to those aspects of our life we can directly control.

Can
I have spent a number of years striving to feel like I am in total control of my life.  Sometimes I think the more time passes, the more I try and control what's happening in my life: from the simplest parts of my life to the most complex. What simple form of control do I cling to? The color and cut of my hair.  If you have been in my life in the last year and a half you know you can never guarantee what my hair will look like: bleach blonde, dark brunette, purple, short, long, two toned, etc.  What do I have this morning scheduled? An appointment at my favorite salon with one of my favorite people, Janna. When my life feels a bit out of control and that the sands of time are slipping through my hands the tighter I try and grasp, a couple hours making me over makes me feel as if I am recharged.  I guess I feel it's easier to take on life's battles sometimes if there's a "new me" to take on the fight.



Relinquishing Control

What have I tried to endlessly hold control over for the last 27 years? CF and the part it plays in my life. What has become a harsh reality I have had to face? I can't control CF.  I ultimately cannot control what it is doing to my body.  What I can control? How I think about CF and how I let it influence my life.  CF will never fully control my life: I will always call the shots. Does CF make life a bit more difficult at times and will it continue to do so? Yes, but at the start and end to each day I know it is my life to live, CF just happens to be along for the journey.  Maybe I color and change my hair because I think that if I look in the mirror and see someone new, CF won't be there any longer as well.  The real truth is it's always there and always will be a part of my life. It's up to me to make the very best of it all.

Whether or not CF is trying to control my life, the life I live is mine and it is beautiful.  I still own each wonderful breath, each ounce of hope, and each gifted moment that turns into a memory.  Love to you all.

Color your hair purple today.

Unspoken

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do.  So throw off the bowlines.  Sail away from the safe harbor. Catch the trade winds in your sails.  Explore.  Dream.  Discover." - Mark Twain

When you look ahead 2O years what do you see?  What about 1O years from now? 5 years? What dreams live inside of you waiting to be unleashed?

To be completely honest, there's no question I dislike more than when someone asks me about the future and my dreams.  What do I say? If they only really knew the pain and fear the answer held.  If you know me, you know it's so important to me be accountable for what I say and aspire to do.   If I set my mind to it, I will accomplish it.  I do not give up.  

The Truth

Of course I have dreams, ambitions, and the hope of a life filled with no regrets, but CF often reminds me of a future of altered dreams.  A future whose seas are uncertain, riddled with looming storms, and tumultuous waters.  If you know me, you know I rarely take life seriously. I am always making a joke about the serious matters of life: humor coated in sarcasm is my specialty.  Underneath the cynicism?  Fear and uncertainty of the future.  Most recently people ask what I hope to do after I am done with my graduate degree. What dreams I have. What do I think silently to myself?  "I hope to still be breathing."  It seems any thought of the future and dreams begin with that simple thought. What if CF didn't hold me back?  It didn't infiltrate my mind with the worries and fear of the future?  What if when I thought about the future I didn't think about what will happen to the people I love and all the life I will miss? For the most part I can separate myself and hide the worry and fear and just focus on living for today.  I think back to the last year and wonder some days how the heck I survived it: physically, mentally, and emotionally.  Then I think ahead and know I don't have any other choice than to live each moment to its fullest: to set sail with no regrets.  What kind of life do I dream of living?  One that leaves a legacy of goodness, kindness, strength, passion, and love.

Growing Old
It's become hard for Mark and I to talk of the future.  By the future I mean 1O years from now, 5 years from now, even 1 year from now.  Very rarely do we talk about growing old together.  When we do, it's plagued by a deep unspoken pain within our hearts, for we both know the cold truth and reality that lies ahead of us.  You who are close to my life probably have heard me often joke about Mark's life after me.  Call it a coping method?  A way to ease the blow of the future?  I think about Mark's life without me, the future that could have been, the dreams that may never come to fruition.  I think about him waking up in the morning and me not being there, seeing traces of me everywhere he looks, seeing friends and family that won't know what to say.  I worry that he won't be ok.

 We must intentionally live day by day, being grateful for whatever we get, and making the most of each moment.  No one's future is set in stone, so make the most of each breath you are given. 

Regardless if the dreams that live within me need to be altered, or new dreams need to be created, I am grateful for each day, each opportunity, each relationship, and each breath.  Whether it's 2O, 1O, or 5 years, I will look back on my life and know I lived it with no regrets.  Love to you all. 

Don't let there be any regrets today.   Sail boldly out into the open sea. 

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

Success

What is your definition of success? Do you measure it the same as you did 1O years ago? 5 years ago? What about 6 months ago?

USD campus

This time of year is filled with graduations from universities, high schools, kindergartens, and the celebrations that culminate such festivities. It's the time of life when the future looks brighter than ever and is brimming with promise.  You're instilled with this great hope of changing the world and making it a better place: you are meant to do great things.  

Restless

When I was younger I always felt this stirring within me, this sense that there was something so much bigger than myself awaiting me in the world.  That I was meant to do something great: to be successful.  Has my definition of success changed in the past years? Yes, and it continues to change.  

Igniting a fire

Augie graduation O9'

The education I received during my undergrad only cultivated and ignited my hunger to learn and experience the world around me.  The relationships I fostered and the way in which I was challenged to think beyond myself are what has made me value every beautiful part of life: the dear people who surround me, the opportunities I am given, and every glorious breath.  I would not trade those years, those memories, or those relationships from my undergrad at Augustana for anything.  Those people and memories are still greatly influential in my life today.  I have taken everything they have instilled in me and continued on my journey to learn and experience life: hoping to do something great for the world around me.  

The stirring within me has never ceased and continues to make me restless.  My hunger for learning and constantly striving to do good has never stopped.  In any and all capacities in my life I want to spread good. Looking back over the past 5 years I have learned so much about life, the world around me, and what really matters: people, relationships, doing good, being kind, and continuing to grow as a person.  I am onto a new chapter of my life that involves working on a masters degree where I have the great opportunity to learn and experience life through so many amazing professors, mentors, students, and colleagues at USD.  I am so truly grateful to each of them for not only challenging me, but also sharing their own experiences.  

First day of grad school

Success

What does success look like to me?  Spreading goodness in everything I do.  Striving to make the lives better of those around me.  To show compassion, empathy, love, and goodness in all I do. Thank you to everyone who has impacted my life so greatly.  Success isn't about accolades, money, or titles.  It's about being happy with yourself, striving to do some good in the world, and being grateful for all that you've been given.  Success is doing small things with great love.  Love to you all.


What is your definition of success?

Adventures Await

It's this time of year when everyone is filled with such excitement for the months ahead: it is the unofficial start to summer.   After a long and brutal winter that kept everyone locked up inside, we are all itching to breathe in the fresh warm air and explore the great outdoors.  The months ahead seem ripe with endless possibilities. Take a moment and think about what excites you most about the summer months ahead? Is it spending a week at the lake?  Going on family vacation? Sitting next to the pool? Or just being able sit next to a bonfire and roast marshmallows?

About a year and half ago when CF made Mark and I face a new reality, we decided to live life very differently.  We live life in the moment and for the moment.  We don't take for granted that tomorrow with be there.  As we have experienced, things can change so quickly with CF that we tightly grasp onto today and do everything possible to make the best of those good days.  There's a lot of living we try and cram into every day because we never know what tomorrow is going to bring.  

Last year for our 5th wedding anniversary Mark surprised me with a 1969 vintage baby camper.  The weekend of our anniversary he had told me to pack a bag with just jeans, t-shirts, and sweatshirts and that we would be leaving at a certain time on Friday.   We began driving: the endless highway stretching before us and the fields beside us kissed with the summer sun.  About 35 minutes later we arrived at a state park where he pulled up to a baby camper and said, "this is ours!" Our great friends were also there with their baby camper, and the weekend was one I will cherish dearly forever.  

Now, the baby camper needed a lot of TLC, but it was all ours: great adventures awaited us. 

This last week Mark, with the help of a wonderful friend RJ, has been working endlessly to renovate the baby camper and get it ready to take out: new roof, new flooring, new paint, etc.  I am so excited for the first time we take it out this summer.  Why? Because I am living, making new memories, breathing in the world around me.  We are not waiting for life to happen, we are making life happen.  I have a chance at another wonderful summer, to spend it with the amazing people in my life, and to make beautiful memories.  Life is too short not to live in the moment that I have so graciously been given.  What will you do with the gift of today, the gift of another summer, the gift of another breath?  Love to you all.  

Take today and live.  I mean really live.  Buy yourself a baby camper and set out on an adventure.  

Priceless

How far would you be willing to go for a chance at one more breath?  To ensure you had one more chance at sharing laughter, tears, and making beautiful memories?  Would you spare no expense if it meant staying alive?

I am so truly privileged to have good health insurance and for the specialty CF programs that allow me to get the medications needed to fight CF and grant me every extra beautiful breath.  I am so grateful for my CF team that ensures I have the capability and access to what I need to fight CF: they spend countless hours dealing with my insurance company, enrolling me in or finding out information about specialty programs, and managing and adjusting my prescriptions.   But CF still comes at a high cost.  I am so very lucky to have Mark who never questions the financial burden of CF, but sees every therapy and treatment as another day together. 

By February 1st I have usually reached my insurance's deductible and out of pocket max from prescription drug costs and doctor visits.  Every January I know instead of booking a nice European vacation, I will be buying a chance at one more breath.  

The cost of 3O days to fight CF [prescription drug & therapy costs]

      Cayston.......................$6,786

      TOBI...........................$8,O12

      Pulmozyme..................$2,843

      HyperSal......................$62

      Prednisone....................$2O

      Amicar.........................$85O

      Voriconazole................$7,O15

      Mephyton.....................$349

      Pantoprazole.................$55

      Albuterol.......................$5O

      ProAir...........................$15O

      Azithromycin................$186

      Atenelol.........................$1O

      Cipro.............................$3O

      Bactrim..........................$15

      Enzymes........................$3,2OO

      Mucinex D.....................$4O

      Zantac............................$25

      Vitamin D......................$15

      CF Vitamin....................$15

      Dulera............................$25O

*This does not include the cost of IV therapy or hospital visits/ stays

Kalydeco, a new and promising therapy that corrects the underlying cause of CF costs $3O,OOO for a 3O day supply. [This medication is only effective on 4% of people with a certain CF mutation]  What would you be willing to pay to cure CF, to never worry about CF stealing another day?

 Cost of equipment and other therapies

      VEST.............................$15,OOO-$2O,OOO

      Nebulizer........................$15O

      Acupuncture...................$65/time

      Neilmed...........................$15

Travels costs for doctors appointments in Minneapolis & Sioux Falls per year.

      Hotel, Gas, Food............$2,OOO

This is my life, and I will do everything I can for one more beautiful breath.  I am so thankful for my CF team, Mark, and my family who have always done everything possible to ensure I have access to the best medical care and therapies: I owe every breath to you. The cost of living with CF? Roughly $3O,OOO a month for just prescriptions.  The chance at living? Priceless.  Love to you all.  

What are you willing to pay to live another day?

      

      

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!

Fight2Breathe

Today's blog is dedicated to an incredible individual by the name of Caleigh Haber.  I stumbled across her story last November to which I am so grateful.  Her exuberant spirit in every breath, her positivity, and fearlessness have become a part of my every day life.  She has shown me what beauty and strength look like through the eyes of CF.  She has helped me realize that I do not need to pretend anymore.  That CF includes all of me, and it makes me just as beautiful in my own way. 

Caleigh is a beautiful 23 year old from San Francisco, CA who also has Cystic Fibrosis. She is currently awaiting the call for a double lung transplant.  Just a glimpse at her blog, Facebook, or Instagram gives the world a glimpse into her passionate will to breathe bravely. 

 Please enjoy her beautiful journey:
"When I think of my journey leading up to this point of needing a double lung transplant to survive, it is similar to the process of making a warm chocolate soufflé; I've made this dozens of times in the several kitchens I have been blessed to work in. I, as well as the soufflé, start as an egg. We both enter into life with goals. Mine: to be a good person, make myself proud, be a great athlete, become a pastry chef and defy the odds of Cystic Fibrosis. The soufflé: to rise.

As our journeys proceed, we beat hard, whisking away like egg whites, working hard to develop into its purpose. I joined gymnastics and cheerleading at a young age and competed at a professional level, until moving to San Francisco to pursue my biggest dream of becoming a chef at the Le Cordon Bleu. Along the way there were set backs putting me in the hospital, but that only drove me to work harder at accomplishing a degree. I interned before and after the program, absorbing every bit of knowledge I could. Like a mise en place (for all you non-chefs mise en place is the meaning for “putting in place”. It is refers to the preparation before production begins), I gathered my skills instead of my ingredients, working sometimes 13 plus hours a day on top of my medical regimen. But, I wouldn't wish for one second of the experience to be gone. Waking up when it was still dark out to do my breathing treatments and staying up way past the point of exhaustion to be sure I was getting enough calories for the day, was worth every second in the kitchen.

After my externship, I began working as a pastry cook. The adrenaline and excitement of the fast paced kitchen brought me such passion that I would go home unable to sleep, waiting to get back into the kitchen. The feeling of accomplishment that the culinary environment would bring me while working is unimaginable to a non-foodie. Creativity, texture, temperature, taste; all the things my chefs in school would look for. Those are the things as time went by that forced me to strive increasingly harder to be the best I could.

With so much happening in my life personally and professionally, I had reached my peak. I had all the love, support and energy around me, similar to the chocolate and sugar whipping vivaciously around the yolks. Then all at once the whisk was snatched from the copper mixing bowl, and just like that I lost control of the souffles journey, my own journey as well. The feelings now are peaked whites, sugar, yolks, and chocolate in a bowl slowly being folded to combine into the next step. The ramekins are ready with sugared edges, uniform to my own career, waiting for my talent to grow. In the meantime, I'm in a bowl trapped. This disease is present but I am not powerless, it is gripping but I am brave. Though it is surely the most frightening and unsure roller coaster of my life- I am making the conscience choice to take the very front seat because I can endure and fight. My struggle makes me who I am. I take this invisible disease; naked to the uninformed eye for what it is and let it be. Now it's time with your support to enjoy life with all that it comes. To embrace the experiences and capture the moments, whatever they may be and fight through it. I've known pain, struggle, and defeat that others will never have to experience, nor should anyone. Cystic Fibrosis has made me the friend, sister, daughter, who I am today- I have accomplished many goals, but I am not finished yet, not even close." [words by Caleigh Haber]

A Love for Life
In just the 6 quick months I have been following Caleigh and her story, she has battled blood clots, blood infection, G.I. issues, CFRD [CF related Diabetes], and many unyielding effects associated with end stage lung disease. Yet, she has a love for life that is intoxicating. Many days, her posts seem as if it were my own voice being reflected on the page in front of me: dreams of the future, a thirst for life, and making every breath memorable with people so dear.  Thank you so much Caleigh.  Love to you all.

Please follow her journey to transplant with end stage CF and consider donating to her fight. 
Website & Donate: http://fight2breathe.org/
Facebook: https://www.facebook.com/fight2breathe
Instagram: http://instagram.com/fight2breathe


What is your soufflé of life?