Realizing Hope: Looking into Love (Day 10)

There have been more moments than not this past year that I’ve held my breath. For I feared letting it go would mean this very moment is passing me by. That I’m losing this battle to hold on to all that I love. I’d silently sit with the world somehow quieted for a brief moment, with Mark next to me and our dogs (the boys) curled up between us. It was as if we were living in the middle of life’s exhale - that brief moment of stillness and calm before our body begins to vigorously pull air back into our lungs and our body is overtaken by a poetic chaos that gives us life. It’s in that brief moment I think, “these are the best of our days”. It would take everything I had in that moment to hold in the tears that wanted so desperately to overtake each breath. I’d hold my breath in hopes to make it all last a little bit longer. As if I owned the moment - forbidding to let it go.

Years ago, Mark and I learned to rarely talk definitively of the future for its realities knowingly were too painful for both of us to hear spoken aloud. We’ve learned to put on a brave face for one another, learning most of all to cherish the present and live wholly in the only thing we are guaranteed - this very moment. We live this life from still frame to still frame - holding our breath while silently pleading with a disease we know can destroy this life we both know and love so much. In those still moments, I close my eyes as I hold my breath to keep from meeting Mark’s gaze. Because in those moments I feel less than brave and that I will become undone. And, I must be brave. Reflected in his eyes are the dreams that lay dormant within our hearts and that we dare not let escape our lips. Instead, we live in a silent hope that seemingly sustains a gifted love rooted in the present. 

When the news of Trikafta first was released back in October Mark and I didn’t say much about the matter other than in light passing comments. Those comments knowingly were rooted in something deeper but that neither of us wanted to embrace. But, they were heard nonetheless. We were being protective of each other and our hearts. While out to dinner just a few days after the FDA’s approval, a couple whose foreheads and eyes were kissed with the gift of years and their hair dusted white walked into the restaurant past our booth. Mark looked at me and said, “that is going to be us someday.” My breath quickly caught on the years of built up emotion trying to escape upon hearing the sound of such a hope we for years had held silent. My mind stirred with the silent plea that such a sentence may not only be a hope, but become a living truth. That night, As it always does, my hand found Mark’s as we walked towards the door to go home, but not before I looked back towards the couple to paint a forever picture in my mind - something to hold onto along with my hope.

I’ve found myself struggling with that hope these last couple of months as Trikafta has become more and more of a possible reality, as I’ve heard incredible stories that by most would be defined as miracles. I’ve done my best to guard my heart and my mind against running wild. To stay grounded in the reality of this body - a reality that has been rooted for years in a silent resilient hope that has helped me to survive. It has helped us survive.

Having the opportunity to take a drug like Trikafta is such a gift, but one wrought with so many emotions. As I’ve struggled the last few weeks with the weight of this gift, Mark’s voice has been a steady chorus of encouragement laden in something so much deeper than hope. There was something different about his voice and the look in his eyes when there’d be talk about Trikafta. Again, I’d avoid meeting his eyes or letting the hopeful timbre of his voice crack my composed façade. When I got the message on New Year’s eve that I had been approved for Trikafta I showed Mark, and I will never forget the look in his eyes. It was a decades worth of hopes that had been buried for years suddenly finding life in his eyes. Reflected within them I saw not only myself in his present but a part of his future as well.

I realize all those dreams may still be just that - dreams. That CF may not seemingly disappear from my life and transform it into something unrecognizable. But, if I am gifted simple stability in which I can live just as I am right now for longer, a life filled with those moments in which we are merely together and I can silently think to myself, “these are the best of days”-  that will be my miracle. The only one I truly need. Love to you all today and always.



Feeling its Effects

- Day 9 -

My intention with sharing my journey through these posts was not only to write about the amazing changes I'd hopefully witness within myself and come to know as a new truth to my life and the immense gratitude I have for such an opportunity, but also to share the complex emotional journey and the knowingly not-so-good days.

This weekend my body just couldn't find a new rhythm. My stomach and joints were less than happy with me and made for long exhausting days. Being doubled over is tiring, especially when there seemingly is nothing I can do to alleviate the pain. Thankfully, my stomach has calmed down. I can only hope with the continued passing of days that this body finds its new normal - one in which these joints are tolerable. We simply press on taking all the difficult with the good.

For those of you who know me well, you know I rarely sleep. Insomnia seems to be a placeholder in my life that forbids to eradicate itself. Trikafta seems to have made my insomnia worse this last week, no matter how I try and counter it. Insomnia has been such a difficult thing in my life with CF as I know how much this body needs rest, but it simply just won't give into it. This body of mine has always had a mind of its own. Even with less sleep than usual, my mind seemingly is working more efficiently and effectively. I'm feeling less like I'm living in the middle of a daydream during the day and an intense fog. It's hard to imagine what I'd feel like if I had more than just a few hours of sleep. 

But even with those less than enjoyable additions to the weekend, there are a few things I couldn't help but be grateful for that were seemingly different. With every weather shift and front that comes through my sinuses (along with my joints) can always tell long before we see or feel them outside. Knowing a front was coming through my sinuses were not overly swollen and inflamed like they usually are. They were still a bit "stuffy" in comparison to the last week, but nothing like I'd usually experience. There was no pounding sinus headache, pressure, or pain in my teeth. And for those of you whom experience sinus issues you know how wonderful being free of such a things is.