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Five

Cooper would pass away Tuesday March 29th, at 7:10 PM.
It was raining in California that day, I remember around 5:00 PM staring out the window sipping a crappy cup of hospital coffee wondering what it would be like when Cooper died. At this point in our journey Cooper was heavily medicated to keep his pain under control, he had been asleep for a day or two. I believe that he could still hear us talking to him, but he couldn’t respond, we truly lost him days before he actually passed.

At some point around 6:00 PM my mom crawled into bed with her baby boy, laying with him for what would be one last time. I sat on the other side of my baby brother holding his hand softly. We watched TV and blissfully sat in his presence, holding him, just us three.

Soon enough my Dad came back into the hospital room.
I remember the look on his face so vividly it pierces my soul every time I think about it.
He calmly said to my mom, “Mary…”
I immediately turned my head towards Coopers chest and watched as he took one of his last breaths.

My physical body was in complete disbelief.
I had emotions and pains in my body that I’ve never experienced before.
I hurled my body on top of Cooper screaming for him to come back.

And then the strangest thing happened, they started packing.
My family, my Aunt and Uncle who were graciously around the corner to help us, packed. They weren’t just packing my stuff or my families stuff, they were packing COOPERS stuff.
My mind could not comprehend what was happening.
“You mean we’re actually LEAVING him here?”
ALONE?”

As they packed up, I, still hunched over Coopers lifeless body, looked around.
I saw a white board filled with Coopers vitals and medications.
I saw Coopers XBOX and his gamer gear.
I saw suitcases and comfy sweatshirts lining the make shift air mattress my sisters and I slept on for a week, as we watched our brother die.
I saw my Dad, who had done every single thing he could to keep Cooper alive, to keep our family afloat, to save us.
I saw my Mom, who had sacrificed years of her life to live in a hospital room, who had just seen the worst of the worst, yet still had the courage to get up and believe there was something better out there for her one and only son.
I saw my sister Julia, who holds everything together with the grace of a ballerina, she promised Cooper she would be strong and she was doing just that.
I saw my sister Jenna, who suddenly became the rock everyone was leaning on, as a young teenager she took on the weight of the world for her brother and she would do it again in a heart beat.
And I saw Cooper, I’ve seen him in a million hospital beds, but not one quite like this. When I looked at him, he didn’t look like the Cooper I grew up with. Friends, he looked like Jesus. He looked like peace. He looked like heaven.

And then there was me.
There I was, holding Coopers lifeless body, never wanting to let it go.
I would of stayed there forever.
I sat there questioning every single ounce of the religion I believed in with all of me.
I sat there KNOWING my life would never be put back together again.
I sat there broken.

You see, I saw the strengths in every single one of my family members that day, except myself.
Because I never thought I would be strong enough to leave that room, walk to the elevator, get into the car, and drive away from Cooper FOREVER.

But I was.
I walked all the way down to the car and turned to my Dad and said,
“We’re just going to leave him here?”

We got in the car and left as a family of 5.

the last words

The days leading up to someone dying are very similar to the days that lead up to someone being born.
Family comes from all over to see one person.
To either say hello or say goodbye.

After we got the call that Cooper had decided it was time to stop treatment my dad and I drove the 5 hour drive to California where Cooper was staying.
Imagine it, 5 hours, complete silence, yet so many questions lingering in the air.
We arrived and headed upstairs to his room, while on our way up we noticed that my mom was in the family room with 4-5 doctors discussing all sorts of things I had no desire to hear. I gathered myself and ventured to Coopers room. I took a deep breath and entered the most peaceful room I’ve ever been in. I sat down in the chair I’ve sat in a million times, I laid my hand on top of Coopers, and he simply said “It’s time, I’m done”. Tears streaming down my face, I was truly speechless.

Not a week before this moment, Cooper had been in excruciating pain. I remember him texting me saying he couldn’t do this anymore, but I ignored his usual doubts because I would never admit to myself that he was actually telling me he was done fighting.

Over the course of a couple days family and friends from all over the United States came to see Cooper.
The most genuine state you will ever see someone in is right before the say the last words they will ever say to someone they love.
They are urgent, beautiful, and completely raw.
They are honest, bold, and astonishing.
They are the last words.

I heard a lot of people share there last words with Cooper.
I would watch people say their goodbyes, walk out of the room, and well, leave. What else were they suppose to do?
I sat near the coffee stand wondering what it would be like to say my goodbye, what it would be like to walk out of that room one last time, with just me and my last words.

He’s going to die

The night I realized Cooper was going to die.

It was just another normal night. Sitting around the table was me, my dad, and my grandma. The normal dinner conversations went something like this, “Hows Cooper?”, “Hows mom?”, “What did the doctors say?”, “What do they think is going to happen?”.
Tonight was no exception, except I pushed further, asking him what would happen if Coopers infection did not go away, what was the next step? What would happen?
I guess in hindsight me putting the pressure on my dad to answer what was going to happen was unfair, but I just couldn’t help but press on.
I NEEDED him to say the words. If they could not fix the infection, Cooper would die.

Suddenly he pushed his chair back and told my grandmother that we were going on a walk and would be back shortly.
We hadn’t even walked that far down the block when I turned to him and said, “is Cooper going to die?”
“If they can’t heal the infection, if they exhaust all options for a healthy life, then yes”

He was telling me what COULD happen, if they were unable to solve the infection. But what came over me was no longer what could happen, it was what was GOING to happen. I realized Cooper was going to die.
It was as if my whole body melted into my heart. My heart sinking in quicksand. Pulling me deeper and deeper into the ground until I finally gave up, it wasn’t worth fighting anymore because I had finally discovered the truth.

Not even a week later, my dad and I got the call that changed everything. It was my mom informing us that the infection was still there, and Cooper had decided it was time to stop treatment.
He really was going to die.

The last scene

Its March 1st, 2016. A seemingly normal day with an average amount of sadness overcoming me. I sat in my level two anatomy class patiently waiting to be dismissed so that I could immediately call my mom to check on Cooper. 99% of the time I was calling to check if he was alive, but I never said that, I asked how he was, what his pain level was like, and a bunch of other medical nonsense I pretended to understand. Mid-lecture I feel a rush of emotions coming over me, I begin to cry and am asked to leave the class.
I was standing at the front entrance of Nevada State College waiting for my phone to buzz that Cooper was okay, but it was taking longer than normal. I stood there totally stunned at where my life was in that moment, I stood completely hysterical. Before I knew it a car had pulled over and a woman was running to my side, she hugged me and said, “I have no idea what you’re going through or are about to go through, but just know that moments pass.”
She got in her car and pulled away.

Seconds later the phone rang, it was my parents telling me everything was fine I needed to go back to class, I needed to stop worrying. But everything wasn’t fine and that is the biggest lie I’ve ever been told. I know my parents were trying to protect my sisters and I, but nothing had ever been “fine”.
Cooper was having serious complications from an infection he got due to a weak immune system that would ultimately take his life, without being eligible for a clinical trial. This clinical trial was Cooper’s, and our, last hope. One last shot at him staying alive.

A month later he was dead.

In the last month of Coopers life I learned that I was being told the lie that everything would be fine.
I realized that Coopers infections were always worse that I was led on to believe.
I realized that my parents knew a lot more than what they led us to believe.
They gave me hope, they told me everything was going to be fine.
When ultimately, it was never going to be fine.
If Cooper had lived, he was just beginning a battle he would have faced the rest of his life.
If Cooper died, well, he was dead.
NEITHER option panned out to “Everything is going to be fine”.

But thats the thing about hope, as human beings we want to give hope no matter the circumstances. That’s what my parents wanted to do for my sisters and I, they wanted to create hope instead of crushing our hearts with the truth.

I’m not sure if the truth would of been any better than feeding us the lie that everything was going to be okay, and I’m not here to share the parents perspective, only the siblings.
As an adult, them telling me that “everything was going to be fine” has allowed me to become stronger. I now know that everything is NOT going to be fine a majority of the time, not that I’m trying to prepare myself for the worst, but I am being hyperaware that sometimes reality does suck.

March 1st is significant because it starts the ending scene.
The last act of the show.
The whole shabang that was Coopers life.

As part of my grieving process, I know that the past 2 years he’s been gone, I have re-lived every moment that March has to offer. I’ve slowly sat in moments that were exceptionally beautiful and moments that I wished would have never ended. I’ve replayed March 2016 for the past 2 years and this year will be no different.

I will take in every grieving moment that my mind wanders too.
I will embrace the ending scene, but this time I will quietly remind myself that everything is not going to be fine.

After-all, difficult times can define us, diminish us, or develop us.
You decide.

The Cage

Have you watched the show YOU on Netflix? If you haven’t, I highly recommend it.

However, it gave me some pretty interesting insights on life, love, and all things relationships.

[Fair warning, if you haven’t seen the show but intend to watch it, stop reading here because I giveaway some big parts of the show]

In the show, Joe has a glass box in the basement of his bookstore where he keeps first editions of specific books. He ends up using this glass box for evil; killing people and trapping Beck. Aside from the major anxiety I have picturing myself locked in a glass box, I can’t help but think that is exactly what my anxiety does to me.

It traps me in a glass cage, it locks me in, teasing me with the key. Surrounding me, are books. Books of my past, of my fears, of my anxieties, depressions, and PTSD. I can’t help but flip through them re-reading the story that is my life, wondering what I could of done better.

Eventually, Beck tricks Joe into opening the door and when he does she escapes, locking HIM in the cage.

Sometimes, when I find all the joy, when I muster up all my courage to be brave and be fully who God intended me to be, I am able to escape the box.

But then, Joe catches her and that’s where the story ends.

My story doesn’t end getting trapped in the box forever, but it is a constant cycle, in and out of the glass box. Sometimes I escape the cage and am free, then just like Joe grabbing Beck, my anxiety grapples at my throat bringing me back into the cage.

I’ve fought anxiety since I was little but never knew I had it until my freshman year of college, the same year Cooper was diagnosed with Leukemia. Since then I’ve gone through, and still go through, bouts of anxiety, depression, and my favorite, PTSD.

I often find myself trapped in the glass cage, fear haunting me from the outside. I use to sit in that box with no hope of escaping. But over the last year I’ve learned a beautiful lesson, sometimes being in that cage is for the good. It makes me stronger, because there is always a way out.

I just have to figure out HOW to escape.

If you feel trapped in a glass box because of your past, your fears, your failures. I’m not going to tell you its all going to be okay once you get out, because you’ll at some point be back in that cage.

I will tell you that IT’S OKAY. That you will find a way to escape, that you will find joy through the fear.

Keep pushing forward, keep moving towards joy, keep searching for the key that unlocks the door the to the glass cage.