Tuesday, July 8, 2014

4th of July, 2013

Kinda late, but I had to write about a date, a few days past a year ago that marked my life and though I now think back and feel absolved of most pain, the feeling back then was so much different.

It was a 4th of July in 2013, I was playing with my little niece, Julia. She was prancing around in her new pink bathing suit. She was ready to head out to the beach with her mom and Godfather.

I remember I took a photo of her and was about to post it on Instagram, but as usual, I scrolled my feed for any new photos. While I scrolled, I saw something, that pivotal moment that sank my heart and made me look at my niece for a moment, and back at what I was seeing.

There was a post from Kandee Johnson letting her viewers know about Talia Joy Castellano, the little girl who up to this point had spoken openly and fearlessly about her cancer, was suffering, in a lot of pain.
I knew that Talia had been battling neuroblastoma for a while now, but honestly, her condition, the way she carried herself, for being such a young girl, it all became a constant that just WAS. Back then, as today, I am a lover of beauty gurus on YouTube, and Talia, at a young age always represented all that was cheerful, vibrant, and talented.  That's all I saw. Up until that 4th of July, the baldness, the fact that this CHILD was battling such an aggressive disease had never registered in my head as something serious.

I remember seeing that post, and looking at my niece who was smiling, trying to pick up a wooden block with her tiny foot, being silly, being a child.  The sudden thought that Talia, not much older than my niece was on a whole different wavelength, than my child broke my heart into pieces.  That one post of awareness opened up a window of worry, doubt, anger, pain, and melancholy.  I then began to follow and spread the word and use the PrayForTalia hashtag.  I remember not being able to enjoy the rest of my fourth, it also happened to be my sister-in-law's birthday, but that one post had me anchored down to my phone.  I depended on that tiny device so much, constantly checking my Instagram, checking my Twitter, checking my Facebook in hopes of learning something new.  That night, and pretty much every night to follow, I remember always feeling incredibly sad.  I wanted to meet the girl, as if though my presence there would have made a difference, but I knew that having met her, so much as online, had already changed my life.  I prayed hard.  I prayed on my knees, I spoke out loud in hopes that a greater being, the universe or a very talented doctor heard my pleas and fixed everything.  I felt deep sadness for the weight laying on the shoulders of Talia's mother, her sister, her father, and those who had a deep bond with her.  I prayed for them too.

Ever since that fourth of July, I began to not let the little problems worry me, especially during this time.  When I had the chance, I would post a #prayfortalia post, but most nights, I kept my strong feelings about everything to myself.

And the world remained the same to me until early morning of July 16 2013.
I woke up feeling the rush that I had to get up, I was about to travel up north and my ride would be picking me up soon.  But first and foremost of course, feed my social media addiction by checking my phone.  Talia wasn't even in my head that morning.  I was simply scrolling when I saw the post; again by Kandee Johnson, saying that we no longer need to #prayfortalia but rather pray for her family.
Dumbfounded, still confused, I clicked on the tag and saw what everyone else knew.  She had passed away. I couldn't cry. I barely moved, but I lay in bed a little while longer. Not being able to understand. After about ten minutes, I finally sat down, and I thought I was gathering my strength to finally get up and pack my bag for my trip but instead I hugged my pillow and began to sob.  I'll get back to you on that in just a moment...
I packed my things and was quiet throughout my ride up north. It was another seven hours before I got to a bed in a Holiday Inn, I set my bags down and broke down again.

And now, the reason for my sobs.
Yes, I was saddened that the little girl who had fought so bravely in the face of that monster was gone.  But from the moment I found out, I didn't see it as a battle lost. At least a million people knew about it, at least half a million people had the ability to do something, to be proactive with this information, and although tragic, I was happy that word got out and that people were doing something, at the very least, letting everyone involved know that they were aware.

The reason I wept so much that day was because the people that loved her the most, her family had to live with a physical dent in their formation moving forward.  I wept because even though Talia had come to terms with the idea of a sooner than later death, her family, those older than her, had to come to terms with the idea that they would not go before her.  Not just that, but the cruelty of life, forcing everyone that loved her and everyone that knew her to watch a child struggle, give her body away to the disgustingness that is this disease, and to watch her be consumed by it without being able do a thing but be by her side.  Nothing else.  I wept because it wasn't just her, many others, so many innocent lives had gone before her, and many more have gone after, and to this day, many more are lost in the same manner. I wept because Talia Joy could have been my niece, Talia Joy could have been me as a child, it could have been my sister, my only sister, and in the future, it could just as likely be my future children who are the chosen of this atrocity. And never have I cried at such an injustice.  But I did.

It did take a few months for me to accept it.  I can't even imagine what the days thereafter was like for her closest family members but to this day, my deep and utmost sympathy and admiration goes out to them.  I remember thinking of Talia a lot during this time last year.  In the days prior to her passing I prayed and pleaded, hoping that she would maybe wake up and be clear and absolved of all cancers and live a normal life, move on to become one of the greatest human adults that the world has ever seen, and live until she became old, and pass like normal old people do.  In the days following July 16th I remember saying a prayer for her family every time I thought of her. In the months that followed I began to realize that her purpose here was to make a difference and to bring out the meaning in her middle name, Joy.

I wanted to write this because this fourth of July I had a sinking feeling in my heart, and this is probably why.  I wanted to write this to let that little girl's family know that I still think about her and I am grateful to have known about her existence and to have experienced everything, even the bad because it has changed me as a person.  Come July 16 I will still think about her and will continue to pray for her, for those past, and for those hanging on that same thread.