To Have and To Hold: Living and Loving with CF

Time, it is a gift that is unassumingly stolen from us with every breath we take. It silently turns summer into fall, moments into memories, and days into decades. We wish it away while desperately clinging to it- hoping to grip it tightly within the safety of our entangled fingers. But time is not ours to keep – it’s untamable and the very currency for which we trade to write the story of our unique and beautiful lives.

Love & CF

Eight years later I can still feel the words brushing against my lips as I said, “to have and to hold from this day forward.” Forward. If only we truly understood what “forward” would mean and how time would become the most precious thing we shared. I think back to the day of our wedding and how excited we both were to see what the future had in store for us. How nothing seemed impossible. But that excitement was forced to change into a deep silent hope - burning in place of our love’s original expectation. As we find ourselves celebrating another year together, I find myself thinking of how much our lives have changed. How much we have changed. Or, most of all, how much the realities of this life and the constraints of time have changed us.

At times, that change within us is all too apparent. Even more so, at times it is too difficult to fully acknowledge and it’s easier to merely exist within the comfortable shell of living in the moment – attempting to shield ourselves from that in which has changed us and the uncertainties of a love laden with cystic fibrosis. We dare not dream too far into the future or hope too ambitiously for the pain we might face seems unbearable because the tomorrow we wish for may not look the way we had dreamed: a future in which CF silently existed amidst our full and limitless life together.  So, we learn to survive with the life and love we’ve been given.

Survive
We survive by living in the moment: taking the days as they come for the goodness that they are. We own those moments. They are all ours and can’t be stolen from us. Within those moments lives an unspoken belief deep within both of us - a desperate wish that we are the keepers of all time and makers of each moment. It’s a way in which we cope with the realities of the life we’ve been gifted. For time is against us and threatens to unapologetically challenge the love and dreams in which we naively set our life upon all those years ago. If we live in the moment than the inevitable difficulties of the future seem impossible. Our life together feels untouchable. In that moment, all we need is what we have: each other. If we live in the moment it numbs the pains of forced changed and deafens the tick of unyielding time. In that very moment there is no sadness, disappointment, or pain- only the love we have for each other and the gratitude for this life together.

Forward
But life is meant to be lived moving forward – inhaling every beautiful breath that is gifted to us and endlessly hoping for more to share. It’s meant to be unabashedly dreamed, even if those dreams are forced to change. Even if we change. This life together might not be what we had originally envisioned together all those years ago, but the only thing that truly matters is that we’re doing this life together – writing our own unique story, loving without regret, learning to live fully in every moment we are given, and take these beautiful days as they are given to us. For today is undoubtedly the best day of our life together, as was the day before, and the day before that. Here’s to another year together and fully living and loving in each beautiful moment while believing in the beauty and hope of tomorrow. Love to you, my Marky – the one who has never questioned our life together and this ever-changing journey we are on.

Love to you all.

How has your life and love changed?

Grownup Christmas List

[Blog post written by Mark Bonnema] 

“Well I’m all grown up now…”  Ok, I know several of my friends and family may take exception to that statement, but at the least, I’ve grown up physically. It would be a bit odd to see someone my size sitting on Santa’s lap.  The line quoted earlier is from the song "My Grownup Christmas List" and goes on to say, “I’m not a child, but my heart still can dream.” As an adult, I somehow find the restraint each year to avoid crawling up onto Santa’s lap, but I certainly resonate with the notion that my heart still can dream.

Generally speaking, our Christmas lists tend to get a bit more abstract and immaterial as we grow older.  Time with family and friends, relief for those who are hurting, happiness, peace, and a host of other positive emotional states are among the things on our grownup list of Christmas wishes.

I am thrilled and overjoyed that within the CF community, many persons and families living with CF have received their Christmas wish this year! Advances in drug therapies and treatments at the genetic level, such as Kalydeco, and Orkambi are allowing some people with CF who have specific genetic mutations to live with a greatly reduced symptom burden. Breathing is easier, the threat of lung infection is decreased, lung function is increased, and life is improved! It may not come with a bow or ribbon, but these developments in treatment certainly have been a wish fulfilled for many people living with CF this Christmas.  

But not everyone is eligible for the new breakthrough drugs because they do not have the specific genetic mutation that the drugs treat. These people living with CF continue to hope and wish for a cure or definitive treatment this Christmas. They continue to hope and wish that the next drug breakthrough will treat their genetic mutation, giving them improvements in quality and quantity of life. Some are even left hoping and wishing that the next breakthrough will come before it is too late.  This is my grownup Christmas wish. I long with all my heart for Ashley and so many others also living with CF to experience symptom free living, to be able to breathe long and free and deep.

Sometimes wishes come true. Sometimes great and beautiful things happen to fulfill our adult Christmas wishes.  More often than not, however, it seems we are forced to recycle the same wishes year after year, as progress ebbs and flows, with fruition lying always just out of reach. Should we give up on wishing? Be "more realistic," or temper our hopes so as to avoid the disappointment of unrealized dreams? Certainly not.

I think that the ability to wish and hope is great gift in and of itself. Wishing keeps us looking forward, it allows our imaginations run wild, chasing an image of a better and more beautiful future. That which we allow ourselves to imagine, we can work together to build and achieve.  

So I’m all grown up now, but I’m certainly not done wishing and dreaming. My wish this Christmas is for a cure for all persons living with cystic fibrosis. Thank you to everyone else out there who shares this wish with me and continues to work so very hard each every day to help this wish come true…  we will keep wishing and working until CF stands for Cure Found!

What are you wishing for this Christmas?     

Give something special and memorable to someone you love. Donate any amount to the nonprofit Breathe Bravely in honor of someone and get a personal message sent to them from Ashley. How?

Step 1. Donate at www.breathebravely.org/donate

Step 2. Send Ashley an email at breathe.bravely@gmail.com with donor and recipient information.

If You’re Happy and You Know It…

[Blog entry created by Mark Bonnema]

CF changes everything – health, breathing, relationships, hopes, dreams, even your definition of ‘happy.’  Happiness is….  a loaded question with a million different answers. Perhaps that’s why we all pursue after it, as though it is either elusive or always morphing. Either way, it is not something that we can grasp and hold onto, for the tighter we grasp the more elusive it becomes.

The act of dreaming together has always made Ashley and I happy. Dreams of walking hand in hand down a Parisian street, fresh baked aromas pouring out of the patisserie, countless hours of admiration in the Louvre, and delectables around every corner. Or perhaps sharing wishes for the backyard… landscapes, hardscapes, a wood fired oven, and area for lounging and basking in the summer sun. Likewise, dreams of camping bring us happiness. Lazy days, slow cooked meals, cool nights with a fire and s’mores… life is good.

Ashley and I still love to dream. It still makes us happy. But recently, it feels more and more like our dreams may stay need to remain just that - dreams. CF finds a way to interrupt our dreams, reminding us of the realities of life with a chronic and progressive disease. Paris is not where we want to be if Ashley begins coughing up blood, not to mention, the demands of walking miles each day through the Paris streets would utterly exhaust her lungs and body. Camping remains a lovely dream; we are always looking for updates to our baby camper, but we also worry about Ashley acquiring a fungal lung infection from the fungal spores that abound in nature. As for lounging in the sun in the back yard, well, the antibiotics cause Ashley’s skin to be very sensitive and prone to sunburn. We joke that she is “allergic to the sun.” The harder we dream, the harder CF pulls on the reigns.

Fortunately, and I truly believe this, happiness is a state of mind. As the difficult realities of life with CF intrude into our lives, robbing us of being able to realize some of our dreams, we adjust our mindset and find new reasons to be happy.  Elusive and always morphing, as life changes, so do the things that make us happy - a day when breathing comes easy and pain is controlled, an extra boost of energy that allows us to make a full trek through Target, or an evening together by the fireplace curled up with the boys (yes, I mean our dogs). 

Easy for me to say, while I am not the one living with CF. However, seeing Ashley’s steely resolve to live happy (and breathe bravely) each and every day no matter the effects of CF on her body and everyday life is enough to keep me looking on the bright side and seeing opportunities for happiness all around me.

If you are happy and you know it… it’s a choice. Don’t wait for happiness to find you. Don’t wait for all your dreams to be realized. Find reason each and every day to smile, be content, celebrate, and be filled with joy. CF may intrude into our lives and rob us of some of our hopes and dreams, but it can never take away our ability to choose happiness.

If you’re happy and you know it… good choice.