“Hey, you know I love you very much?” I nudge my niece. We are sitting on my bed playing some game or other like we always do when she is over.

“Yea I know” She’s always reluctant for words. Then she grabs my hands softly and asks “Is it true?”

“Is what true?”

“That you’re really, really sick this time?”

I sigh. Here she is short of 11 years old and having to face a reality I wished to shelter her from. “Yes darling. Unfortunately it seems I’ve run out of lives. But hey! No worries! When I go you can have all my nail polish and jewelry okay?” And I smile hoping to remove the sadness out of the reality.

“Okay Mimi” she says and stays quiet for a while. “And Mimi?”

“Yes”

“I love you too” and she kisses my cheek. The most gentle and purest gesture that she could give. And in that kiss grants me all the love that she possesses.

I try not to look directly at her, because if I did I’d break right in front of her. But from the corner of my eyes I see her eyes water and she discretely wipes a tear. So I look up at the ceiling trying my best not to cry. And I remember that quote from the “Fault in our Stars” that says:

“Much of my life had been devoted to trying not to cry in front of people who loved me, so I knew what Augustus was doing. You clench your teeth. You look up. You tell yourself that if they see you cry, it will hurt them, and you will be nothing but a Sadness in their lives, and you must not become a mere sadness, so you will not cry, and you say all of this to yourself while looking up at the ceiling, and then you swallow even though your throat does not want to close and you look at the person who loves you and smile.”
― John Green, The Fault in Our Stars

I didn’t want to be a mere sadness.

Since about October of 2015 things began to take a downward spiral health wise for me. I was constantly hospitalized weeks at a time with symptoms so vague it was hard to diagnose. 2016 was spent for the most part on tests and more tests, and diagnosis after diagnosis. Hospital stay after hospital stay. The doctors sure that a lot of it had to do with my anatomy because of a previous surgery didn’t really have many answers. Few people had lived past all I had. A lot of it is still uncharted territory.

So when we learned during fall that I had a rare condition we met the news with mixed feelings. We could finally make sense of what had been happening. But at the same time we were diving head first into such a rare syndrome with very little medical expectations that I’d even be able to survive. It turns out my large intestine and pancreas had made the hole in my diaphragm bigger and had climbed up to my chest. This collapsed my left lung and made it very difficult to breathe. I was extremely tired, and even a walk to the kitchen would leave me breathless. Siting down for long periods was almost impossible because I was in so much pain. I spent the next months strapped mostly to bed. I couldn’t really handle going anywhere or even walking. With not enough oxygen even holding a conversation too long became unbearable.

I saw 3 surgeons before one decided that surgery was my only way of surviving. If left untreated my other organs would move up as well and would collapse my other lung. Or they would begin to strangulate with no room and cut blood supply to my body.

But this would be a majorly invasive surgery with a lot of complications in the horizon. Because of my previous surgery in 2009, I’d developed a staph infection in my blood that causes me to fight long term use of antibiotics. My body begins to fight them as viruses. This makes me very prone to infections.

Additionally, because of the previous surgery being so invasive, my body in its healing created a lot of adhesions. This would become a problem because the adhesions would hide vital veins and even position of organs. I was also highly anemic. So going in surgically was a feat. One that not just any surgeon would take on. Still surgery was scheduled to be done in 2 weeks. I had very little time to prepare.

A Friday after a doctor’s appointment though, I began to be so out of breath my sister rushed me to the hospital, by Sunday my body went into total shock when my small intestine began to strangulate and my stomach began cutting blood supply to my organs. I was dying. My original surgeon was off so the on-call surgeon was rushed and within an hour I was downstairs being prepped for surgery.

Nothing prepares you to say a final goodbye to the people you love. With only a 25% chance of making it out alive off of the surgery, we were, for lack of a better word, a mess. My stats went downhill so fast we had very little time to prepare. My brother barely made it before they wheeled me away.

So on a Sunday morning we said our goodbyes, there were promises made, kisses, hugs, and a downpour of tears none of us could stop from coming. All of our hearts were aching. I made sure that my parents wouldn’t be alone during the surgery. And I shot out a goodbye text to my best friend. I made the anesthesiologist wait till my brother arrived and I was able to say goodbye to him and my niece. And it was then I realized how truly hard it was, really, to see someone you love slowly slip away right before your eyes. And worst to realize there was nothing that you could do to stop it.

There wouldn’t have been enough time in the world that morning, even if things hadn’t happened so fast. There never is when we are saying goodbye. In my last conscious moments I couldn’t help but cry uncontrollably. I feared that I was leaving a million things unaccomplished, a dozen projects unfinished, and so many words unsaid. Being deathly sick feels like getting to the end of the book and realizing 20 pages have been ripped out and you will never know how the story ends.

But that is death. It doesn’t matter if it’s sudden or it’s been a long time coming, it will always cut off life in the middle of a sentence. And no matter how prepared for it you think you are the rest of your untold life will always be the part that is the greatest loss.

My last thoughts were a memory I held close to my heart. Me at 4 or 5 at kindergarten drop off, and how every morning held the same routine. Instead of saying a short and sweet goodbye to my mom I would always drag it on never wanting to leave her side. I’d keep running back to her time and time again and wrapping my arms around her legs and burrowing my face as far into her stomach as I could. She’d stroke my hair, kneel beside me and in between the whimpering I’d whim “Solo un besito mas”. (Just one more kiss).

Many hours later, thanks to Jehovah I was out of surgery. Everything had gone miraculously fine and with no major complications the surgeons had successfully repaired the diaphragm and put almost everything back in its place. I awoke in a haze to my family hovering over me. I was incredibly happy to see them.

I spent the next weeks slowly recuperating till they finally let me go home to finish healing. Now I wish I could say this is my happy ending. That this is the ending to this heart wrenching turmoil, never having to face it again. But unfortunately that is not the case. In 5 years the syndrome will reoccur again. Once you are prone to this type of thing it will continue to occur each time getting harder and harder to fix the diaphragm.

I could look at this as a glass half empty type situation, but I refuse to. Worry doesn’t empty tomorrow of its sorrow. Its 5 whole years that I didn’t have before. And maybe that isn’t all the time in the world. Maybe in the end I will still leave a million things left undone and a thousand words left unsaid.

But it also means 5 years of being with my loved ones. 5 more years of memories, of hugs and kisses that I would have not been granted before. And maybe that’s not a lot and it may never be enough in the eyes of many. But to me it means everything. Because if being granted the chance I’d run back EVERY time even if just for… solo un besito más.