The wonder of it all…

As I sit here and reflect on how this past month on Trikafta has been for me, the most gorgeous, breath-taking snowflakes are falling steadily in their own peaceful rhythm. A soft snowfall. Serenity. All things are made new. It sparks a deep perspective within my soul. In all we are given..the joys, sorrow, struggles, confusion, frustrations, clarity.. life is so beautiful. All my troubles disappear. My heart is rejoicing. Everything is covered in the awe-inspiring magic that is snow.

Growing up, my family went on ski trips every February. As a kid, snow feels even more enchanting. We would leave our state, enter another and soon witness all things covered in a glorious white blanket. Add the peace of the mountains in view and there lies my true contentment with and in everything. The bite in the cold air with each breath, seeing your breath! Hearing the crunch in each step. The pine trees veiled in white. The entire earth glistening like diamonds when the sun came out. Excitement would consume me. I remember how seeing the first sight of snow would create my heart to skip a beat! Once we arrived to our destination, got to our lodge, figured out sleeping arrangements, etc., it was usually bedtime. All the fun awaited for us come morning.

I have such fond memories from these ski trips. I remember distinctively being scared in the beginning learning how to ski. When I was 5, I actually broke my leg on a bunny slope. If even that, I think it was just a small little snow hill. My Dad started teaching me at an early age, to share his love of skiing with me and my brother. I used to ski between his legs as he would hold me giving verbal cues as to how to move my skis. I had many fun times getting accustomed to the ski lift. I remember telling my Mom or Dad to hold me as the chair came around so I wouldn’t fall. Getting on and off I had my share of falling! I had to conquer that fear and just do it! Silly now that I think about it. I was fairly tiny and seeing that big chair come around the corner at me at what I felt was light speed, was a bit nerve-wracking.

Over time, my Dad would hold a ski pole out to the side for me to grab onto with both my hands and ski with him. Observe his skis. Watch and learn. Feel the snow hitting my skis and all the sounds. To turn, to snow plow, etc., all the basic ski techniques. I loved every minute of it. I felt so important, wanted to make my Dad proud as I listened to him guide me. Gradually he’d encourage me to let go and ski solo. He would continue to hold his ski pole out for me if I needed. I had the best teacher. I remember skiing by myself for the first time. Freedom and thrill! As the years went by I was given my own ski poles, bigger skis and even goggles. Like the grown-ups. Time for me to do this thing on my own. I was ready, nervous and ecstatic. I still wanted my Dad by my side though.

One particular time I recall like it was yesterday. My Dad and I had a day of it on the slopes. Everything felt so perfect. I was skiing on my own next to my Dad. We would always take the blue (beginner) runs. This particular path we were on was smooth sailing. We reached an open meadow. So peaceful. Next was a breath-taking path surrounded by trees. We came upon some little snow moguls. I absolutely loved skiing on them! I wanted to do this path again and again. Somehow though, along the way, we took a wrong turn. I don’t know how. We hit a black (expert) run and as we turned, we realized we were at the top of the face of the mountain. I sensed immediately this wasn’t good because there weren’t many other skiers around. Fear overtook me. There was no turning back.

My stomach dropped as I looked down. I felt sick. The look on my Dad’s face was not comforting. Even in his Stetson Billy the Kid hat that distinguished him from all the other skiers, his face displayed uneasiness. When I saw his reaction, I wanted to cry. He knew I was scared. We stood there for what seemed forever. He comforted and encouraged me “We can do this Sis. We are going to take it slow. Just listen to everything I say and do as I do.” I tried to remain calm but every time I looked down all I could think of was “I can’t do this.” My Dad’s strength in that moment carried me. He couldn’t hold onto me. I had to face this obstacle on my own. It was icy in spots. If either of us fell or lost control, it was a very long, steep drop.

We began moving laterally and side stepping in our skis, very slowly, leaning into the mountain as we did. I was so frightened. The wind picked up and pierced my skin. My Dad was trying to get us to a point where we could possibly ski downhill again. It wasn’t happening. We would take breaks, standing there on what felt like a cliff, my Dad yelling “Don’t look down, just look at your skis and focus”. So I did. We continued on, it felt like the longest journey on snow and ice. After awhile, knowing that it wasn’t getting any easier, and tears starting to fall from my eyes, my Dad said to me “Sit. Just lean to one side, skis in front, and slowly go down.” Maybe that wasn’t the smartest but I obeyed my Dad. He held out one of his ski poles. I grabbed it. We then scooted very carefully the remaining way down. He never left my side.

Once we made it to the bottom, relief reigned over us. My muscles hurt. Every inch of my body was tense. My mind was tired. I know my Dad felt all these things as well. I also felt so accomplished. My Dad said to me “Sis, look at what we just did…” he pointed behind us as my eyes wandered up the mountain face. We did it. We made it to the bottom in one piece. I don’t recall how long it took us, but it felt like an eternity. My Mom finally saw us and came over to us quickly. Concerned about where we’d been and the amount of time gone, my Dad looked at her and said “Your girl just tackled that” pointing back again. I said “Dad, WE tackled it together.”

We called it a day. We spent the evening out enjoying a meal as a family at one of my favorite restaurants, walked up and down the strip taking in the adorable little shops, grabbing some hot cocoa, and taking in the lights. On several rare occasions, we witnessed night skiers. Glancing up the mountain, they gracefully were making their way down with lights. They may have been holding flares. I don’t know how they did it without falling. They were the experts. They were on the face. The face we had just conquered. What another fascinating, entrancing view to witness.

Thinking about how nervous I felt in that moment with my Dad, not knowing the outcome, unsure how we were going to navigate our path, in some ways, mirrored how I felt starting Trikafta. Honestly, I did not know what to expect. Would it work for me? Would it create unwanted side affects? Any difficulties and I could possibly have to discontinue taking it. If so, I’ll have to face those unwanted changes. That is still a concern down the road.

I completed one month post Trikafta follow up labs. Thankfully, (oh so thankfully) results revealed my liver enzyme levels are normal, as well as kidneys and everything else they checked. I have Budd-Chiari Syndrome. It is a rare disorder characterized by narrowing and obstruction (occlusion) of the veins of the liver (hepatic veins). As a result, I am on a blood thinner indefinitely. This places me at higher risks for liver complications. I was relieved all is well so far. Hoping and praying it stays this way.

I continue to feel… inexplicably incredible. Hardly coughing. Minuscule to nonexistent mucus. If any, it’s clear to pale yellow. Mind-blowing. I brought up some junk along with a little blood the other day. At first I panicked. Then instant relief came over me with the reminder “Better out than in!” and “Oh hey remember me? It’s been awhile! I’m still here.” That small amount (maybe the size of a pea) and color was the most I’ve coughed up since the first week of Trikafta. Unreal. I’ve had two nothing short of amazing runs (for me) this week. The new life I’m feeling and breathing in my lungs with each step is something else. My workouts do not consist of spitting up green junk (marking my path with my mucus) and stopping to catch my breath. I didn’t realize until the other day how winded I used to get when running with my two pups. I’m not experiencing that hardly at all anymore. I think my dogs are just as happy as I am with these changes within me when we go on adventures together. I think they can sense something is different. I still have more energy. I am noticing gains, in so many ways. I am starting my days earlier. More productivity. Which I thrive on.

Where will Trikafta take me? Only time will tell. Like freshly fallen snowflakes blanketing the earth, making all things new, Trikafta continues to reveal this newness in me. As I watch the snow covering the ground, trees, all of nature…I am left in amazement. Which brings forth peace and reflection for how immensely grateful I am for this past month, for how I feel, and how my life is different thus far. My mindset is joyous…I feel a tangible hope in my soul from three is exciting! I am engulfed in astonishment every morning. This isn’t a cure, some things will obviously remain. But for now, right here in this moment, I will hold onto all that is happening. I give so many thanks above for this medication. I feel like that little girl I once was in the snow and in her skis…being captivated by the beauty and wonder of it all. And someday, I plan to find myself on the slopes again, breathing in the smell of the snow and pine, permitting the crisp mountain air to delightfully claim my new-life-in-each-breath lungs. Pure elation. Who is with me?

2 thoughts on “The wonder of it all…

  1. Just amazing!!! I want to share your blogs with Ayn’s Dad. He hasn’t read about how amazing it is so far! He will also love the skiing story about you and your dad. So happy for you!!!!

    Liked by 1 person

  2. Share away! Thank you. My blog before this one I was talking about Ayn. I don’t know if you read it but she is the friend I mentioned – we ran the 100 miles a month together. ❤️


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