REMEMBERING NICOLAS PEREZ
Children's Brain Tumor Foundation
Newsletter on Grief During the Holidays
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Kind, caring, thoughtful, friendly, funny, silly, sweet, courteous, positive, brave and strong are just some of the words to describe Nicolas. He was full of life, love and joy and was a friend to everyone. Our story is not unlike many others with a child with a brain tumor diagnosis. It began abruptly during a middle of the night trip to the ER with a headache and vomiting. I can still remember the Dr.’s piercing words, “I’m so sorry Mrs. Perez, your son has a brain tumor and may need emergency surgery as early as tonight”. In an instant my heart stopped, all my blood stopped flowing, and my mind went blank. And as quick as it all stopped… it all started right back up again and I went into what a lot of us will call “mom-mode, or auto-pilot”. It is amazing, this newfound ability to function in this mode while your heart feels as if it was ripped from your chest.
I have always had a glass half-empty way of thinking but quickly learned by observing Nicolas in the ambulance, in the hospital before and after surgery, leaving him in the operating room, leaving him countless times at radiation, procedures, MRI and CT scan suites ,I could see that despite his eyes wide with fear; he remained calm and composed and somehow always managed to smile. It became evident early on that we all had to be strong and positive for him so that he could endure all that was needed to help treat him. I had my “mom-mode” but in many ways, he had his “Nick-mode”. Every step of the way, including at the very start of his battle at 10 years old, we would explain what the next phase of procedures would be. He would pause for a moment to think about it and maybe show a glimmer of concern but then bounce right back into “Nick-mode” and somehow we were able to move forward with each challenge as a family.
Nicolas’ older brother Xavier played an extremely important part of Nicolas’ care and keeping things as close to normal as possible. He would still goof around with him, play rough like they always used to, play video games, watch movies, and play basketball with him. Many times, he would put aside his own plans and wants to be there for his brother. I know that it was at times difficult for him and maybe he didn’t always understand why his brother needed extra time, love, and attention but at the end of the day, it brought us all closer together and they were the best of friends.
I’ve always believed strongly in the saying, “Hope for the best but prepare for the worst”. In this time, I thought of it often. Although we hoped for a cure, despite his cancer coming back with a vengeance twice after initial diagnosis, I always imagined that if these were the last weeks, months, or years we had with our son then we need to get busy living life. And that we did. Our best medicine was living our life as close to normal and spending every moment we could together. We still took our summer trips to Orlando, albeit with wheelchair in tow and some adjustments to some ride choices. We still had our Sunday morning Dad and sons basketball games at the park, sometimes Nicolas sat along the side with me and watched, but we still went, we still had laughs and made memories.
There were many things he was not able to realize in his short 13 years, but there were some amazing things he did. By donating his cornea, he was able to give the gift of sight to two people. And on December 2, 2014, he was made an Honorary Knick by The Garden of Dreams and The New York Knicks. He will always be my hero.
Nicolas wanted to become a neuro-surgeon and help kids like himself and he also wanted to be a kung-fu master and teacher like his father. He loved life while it was his gift to enjoy. Remember just that, life is a gift and not a burden. There can be joy and happiness, albeit just a glimmer and you can have a glass half full if you just believe it.
Written by: Elisabeth Perez
