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?

Three Simple Words

Everything is different. Three simple words that will live within me for the rest of my days and upon every breath that I am given. Tears still fill my eyes as those three words resonate in my mind. I can hear the tone in Mark’s voice as he said them, and I can trace the painful and loving honesty in which they were born to an uncontrollable truth that silently fills our life together. The uncontrollable truth called cystic fibrosis. Indeed, everything is different, but it was an honest difference I thought only I could see.

Why are those words so difficult to hear? Because I didn’t know the differences that existed intrinsically within me were noticeable to the outside world, most of all to those I love. I thought I had hidden them deep within the most cavernous parts of my being for no one to see or experience. But I was reminded that it’s not just me enduring the barrage of potent antibiotics and the effects of CF, but that their impact is much farther reaching. That their devastation silently touches all those present in my life. Suddenly, I felt exposed and like I had failed. I had failed at protecting those I love from me, from CF. Most of all, however, I felt as if I failed at protecting Mark.

The Difference Within

I don’t think Mark fully knew the extent of those three simple words and the depth of their meaning. Just how different is everything? How different am I?  Here’s an honest glimpse: 

For five weeks potent drugs saturated every ounce of my being – unknowingly permeating every part of my conscious and unconscious existence. Toxic drugs laden with a desperate unspoken hope silently infiltrated my body from within - making me slowly feel like a stranger within my own body. With every infiltration of antibiotics it seemingly gets harder to navigate this body that feels as if it’s becoming more and more foreign to me. I don’t recognize this body that has accompanied me for more than 29 years. As these drugs always seem to silently strip me of myself, I feel a bit of who I am slowly slip through my fingers. I desperately try to hold onto any familiar part of my existence. I push myself harder, constantly trying to prove to myself that I am in control - holding onto anything recognizable within myself. But there are times such powerful drugs and CF feel as if they are whitewashing every part of me – stealing my thoughts, focus, vibrancy, and self-trust.

I anxiously retreat away from the world, terrified that I am unrecognizable not only to myself but to those I love as well. Terrified that I will fail to be the person they need and lovingly know. I do my best to pretend all is fine. I do my best to pretend and prove that I am better than fine. Desperately trying to prove that no matter the merciless pounding from CF itself and the antibiotics I take, I am immovable, unshakable, and unstoppable – all in hopes of protecting those I love from the wake of CF. Even now, I feel a devastating (and knowingly ridiculous) disappointment in myself and my inability to hide such differences and protect those I love from myself and CF.

 

To Be Me

My heart turns back to Mark, thinking of what he’s silently endured and wondering the extent of such pain I have unknowingly caused him through the years. He has never shown any anger, disappointment, or remorse for this life with me - no matter how different everything at times may seem. He may never know the true impact of those three simple words, but I will always remember their deep and life-changing meaning that were born of the deepest love and honesty.

I know at the core of my being I can’t fully protect him or those I love from the brutal realities and effects of CF. It’s a truth itself just like CF. Yes, indeed, everything is different, but one thing will always remain the same: the endless gratitude that fills my very existence. My gratitude for every beautiful breath that I am given and the beautiful love that fills my life. Love to you all.

What has someone said to you that has left you 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.