The Little Things

A little bit of a life update: I am currently in the hospital for a lung exacerbation and it sucks. It sucks more than the usual sucking because I had planned on traveling this week. Timing is the absolute worst especially when you try to plan things out, even more so, when you have a life-threatening lung disease.

It is now two days since I stepped foot into the emergency room of the hospital. I was in pain; every breath seemed to exert far more energy than usual, my head throbbing, sweating and then growing cold again, and my cough left me huddled in a ball trying to hinder the pain as much as I could. It honestly felt like it would never end.

With my mom by my side, we sat in the chairs waiting. My name hadn’t even been called to put in the system. I held a box of tissues in my sweaty palm while a mask covered my face making it even harder to breathe. And then the tears just came pouring down, I couldn’t stop them.

It was another one of those life-defining moments. Those moments where it seems you are looking at yourself from a third person view. Seeing myself, pale, hunched over, having shameless tears that were slowly absorbing into my mask. This was the Caity I didn’t want to see nor did I like seeing.

I wanted to be the glowy, happy Caity that only had to worry about school, her job, and the people in her life.

I wanted to be the Caity that could travel to any place and be okay.

But that wasn’t me and the reality of it all is this Caity is always going to be around. Cystic fibrosis is going to have an impact on me for the rest of my life. It will always be a part of me.

So although I may not like seeing myself in such a state, I have to accept it.

Because the thing about us, as people, is we forget that we are human beings.

Human beings that go through so much, the wear and tear of the soul and the body. Every day we are constantly faced with a challenge and it might not be a life-altering one but it still affects you and everything in your life.

You aren’t perfect and that’s 100% okay. Because it’s in those moments where you feel at your absolute worst where you truly see how strong and amazing you are. It shows that you are real and struggle and I find that beautiful.

I still don’t know for sure how long I will be in here (I will keep you all updated). I still find ways to appreciate the little things like getting sour patch kids or having amazing people come and visit me to make my day. The love from my family and friends through every platform (texts, phone calls, Facebook posts/comments, etc.) mean the world to me and I am so grateful for the people in my life.

It’s really the little things that help you push through.

Love,

Coming to Terms

Yesterday, I had a doctor’s appointment that shook me to my core.

I don’t really want to go into details but there is a lot that I need to think about with my future.

It’s crazy to think that every choice I make about my health right now, will affect how long I live.

I am only twenty-years-old and I have to consider making a living will.

How is that possible?

I have just begun my life of exploring myself and the world.

It’s in these moments where I want to go up to every person that walks by me and say, “Live your life to the fullest. Live every day like it is your last. Appreciate every moment and memory you make and never regret a thing because it was meant to happen that way for a reason. Love your body and take care of it. Treasure every breath and step you take in life, it means more than you think.”

I always try to stay positive but over the years I have realized, it’s okay not to be positive.

It’s okay to feel down about yourself or down about life.

For there to be positivity, there needs to be negativity to balance it out.

After all, the awful things that you go through in life make you appreciate the good.

It’s taking those situations and realizing that its a part of life and you just got to keep going. Keep hoping. Keep praying that it will all work out in the end.

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My Cystic Fibrosis Story

When I turned nine, the last thing I expected was to be diagnosed with a life-threatening lung disease.

All I worried about was getting good grades, hanging with my friends, and the approval of my parents.

I could paint the day of finding out I had Cystic fibrosis, perfectly in my head.

I had been with my friends at the playground, running around and playing manhunt.

When a call from my mom disrupted our game, she told the neighbor that was watching us that I had to come home immediately.

I honestly thought it had something to do with Gracie, she had just been diagnosed few weeks prior.

I was dropped off and ran right into the house. As soon as I opened that door and looked around, I knew something was very wrong.

All of my family members were crammed among the couches, dining room, and kitchen. Eyes, red and watery with lowered voices.

You could feel the tension in the room as all eyes looked at me.

I still didn’t suspect that it had anything to do with me, I just thought it was more bad news about Gracie.

Before I could get a word out to find out what had happened, my mom called me to come upstairs.

I trudged up the steps, glancing behind me, hoping that someone would crack a smile.

My mom was sat down on the bed, looking at me tenderly.

“Honey, take a seat.”

My heart was beating out of my chest as I moved towards her. It had to be something awful. Maybe Gracie is going to get admitted again and they are going to have to stay there for a long time.

My mom cleared her throat, “Dr. Kriendler called, the test results from the sweat test came back…”

I looked up at her, her eyes teary. You could tell she was trying to hold every ounce of her strength together for me.

I was praying to god that it wasn’t what I thought it was.

That there was no way that both, my sister and I, were dealt with these cards in life.

“You have Cystic fibrosis.”

All I could feel were her arms around me and sobs that I didn’t even know could come out of a human being, come out of me.

Pure devastation etched into my heart.

It was more, not knowing what Cystic fibrosis truly was and how it would affect me for the rest of my life.

I didn’t know what I wanted to do in life, but I knew that I wanted to live long enough to do them.

Whether it was being a doctor, a writer, an actor, a princess, or conquering the world in some way.

I had dreams of having a mansion and a jacuzzi.

I had dreams of having kids and meeting the love of my life.

I thought that all my dreams were gone and it broke my heart.

My whole life had been filled with average kid stuff and now I had to face things I didn’t even know were a possibility for me.

The hospital would be my second home.

I would now have to do treatments and medications to give me a longer life.

There could be a chance that I would need a lung transplant down the road.

I had to be responsible for my own health.

At only nine-years-old.

It was a rude awakening, to say the least, but I have learned a plethora of lessons since then.

Yes, Cystic fibrosis can hinder me from doing things in life.

But I will not let it.

I have so many dreams, wishes, and wants, that I am going to pursue.

I want to travel.

I want to jump out of a plane.

I want to change lives.

I want to kiss the love of my life on New Years.

I want to write a novel.

I want to have a kid.

Cystic fibrosis is not going to stop me from anything. Ever.

It is a part of my life and I can’t change that.

I have accepted it and appreciated that it has shaped me into the strong person that I am now. I have overcome so many challenges and obstacles in my life that have changed me entirely.

I have become resilient, independent, and motivated.

I wanted to live a life where I would live and love as fiercely and whole-heartedly, as I could.

And I intend to because as cliché as this sounds, life is too god damn short not to.

I have an amazing life filled with people who I genuinely love and care about.

I am surrounded by so much love and support.

I have been through the worst of situations filled with pain, sadness, and heartache but I’ve come out of it.

I did it.

I will continue to do it, to face the unthinkable, to gain more strength, become wiser, and learn from my mistakes.

Cystic fibrosis will not stop me from living the life, I choose to live.

Love,

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P.S. Here is a video I made giving a more in-depth look at my own story and cystic fibrosis.