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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I Want To Travel The World

If there’s one thing that I want to do in life, its to travel the world.

I want to experience every culture, see every country, and be in the shoe’s of others lives.

I want my perspective to change and grow.

I want to be amazed at all the beauty that lies within the roots of humanity.

To see how different we are, yet how similar.

To meet people who influence my mind in ways I didn’t even know were possible.

I want my breath to catch at the sight of something so magnificent.

I just want to live life so fully that I look back later in life and say, “God damn, was I lucky”.

I want an endless amount of memories from my travels, no matter how far or close they may be.

I am ready to take on this world and travel across it, as much as I can.

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Gracie’s Wish

My beautiful little sister made a wish to go to Disney World and it was finally granted!

The smiles and laughs that I have seen and heard from her, have brought so much warmth.

My sister has been through a lot in the little time that she has been on this earth. From hospitalizations to missing months of school because of Cystic Fibrosis, she is always in pain and suffering.

These moments with us on vacation are the things that I hope can make her forget about all the pain she faces on a daily basis.

I wish I could leave her in these beautiful moments forever, where she is so unbelievably happy and carefree.

I would do anything to make that possible for her.

The trip has been absolutely amazing so far. Make-A-Wish has been awesome in making sure that all of our travels have been smooth and successful (especially when it comes to getting in the express lanes for rides).

We are residing at Give The Kids The World and let me just tell you, the people who volunteer and work here are the kindest people you will ever meet.

They have really made the stay here so comfortable and stress-free.

All the volunteers want to do is help you in any way they can, whether it’s bringing your food to the table or making you ice cream or even doing your hair and nails. All they spread is love and positivity to every child and adult they interact with.

Give Kids The World has events going on constantly such as birthday parties of characters or Christmas nights. They have horseback riding, movie nights, arcades, rides, pools, golf, fishing, you name it they probably have it somewhere around here.

So far we have been to Hollywood Studios, Magic Kingdom, and Universal Studios: the Island of Adventure in just two days.

I had my go-pro with me since the beginning of our journey because I want my sister to remember these moments.

To remember that there are so many amazing moments in life that outweigh the bad.

That she has a family that loves her and adores her. A family that will always be there for her.

So I made a video, that way when the pain is too much or she just wants to look back on all the things we did, she can.

I love you, Gracie. Always.

Part 1:

Part 2:

So many memories made that will never be forgotten.

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The Super Bowl

The Eagles winning was the most amazing thing to happen to Philadelphia.

The pure excitement that came from people was contagious.

People crying, people screaming, people who were just so incredibly happy.

Although I am not a true Eagles fan (family raised me into the Giants), my heart swelled with warmth looking at everyone around me.

A smile never left my face and I made so many memories in just one day.

My friends and I decided to go to Philadelphia right after they had won the Super Bowl. We were apprehensive at first because we saw it was crazy from the news and the Snapchats people posted.

But you only live once, right?

These memories would be nothing without the amazing people in them. I am so fortunate for every single person in my life.

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Pieces.

The thing is when people are cut out of our lives, there are still pieces of them that remain.

Old photographs you try to hide, somehow ending up on your nightstand. Or clothes you find in the corner of your room that you wore at a specific moment in time with them.

Whenever I drive past a place where a memory was made, it’s like I am instantly brought back to that moment when I was with that person.

I can see my old self with them, just living a normal life.

I look back on those moments and wish that I could have told myself what I know now.

But that’s not how life works.

You are meant to go through situations in order to learn from them, as painful as they may be.

What you overcome is what helps you grow.

Grow as an individual, grow in experience, grow in love.

There will always be pieces of that person lingering within your life because they were once a major part of it.

Once you accept that and not let it weigh you down in your new life, that’s when you can truly move on.

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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.