Tiny Sparrow Foundation | A Non Profit Organization » A Picture of Hope

Before I met Emma, I was living the normal life of teenager. My life consisted of waking up early in the morning and rushing to get dressed on time. Fixing my hair and putting on makeup, and occasionally, if I am lucky, getting a bite of food in on my way out the door. It included going to school, and daydreaming, going home, doing homework, being shuffled to things like soccer practice and piano lessons, and then eventually, way later than I should, go to bed. Occasionally of course, tragedy struck. Not finding the PERFECT dress for prom, a bad grade on an English test, rainy days that mess up your hair.

Just so you know, Normal is in perspective.

One day, something in me made me want to do something good for others, so I decided to visit the local Ronald McDonald house. I would drop of gifts at the door for children and walk away, feeling good about myself. Little did I know that that trip to Boston would be the beginning to a new outlook, a new perspective on life.

I walk through the doors of Ronald McDonald house and see no children, and begin to wonder if I am in the right place. Then, I see one little girl, the child who forever captured my heart and changed my life. She is bald, a NG tube coming out of her nose, and a bright colored mask on. She runs over and looks through the toys, and somehow we make our way downstairs to her room and I begin playing with her. Through talking to her mother and visiting her in the hospital, I see an entirely different normal, the normal of living with an ill child. Again, normal is always in perspective. I visit Emma thorough out her stay at Boston Children’s Hospital, and learn new things every day. Sickness. Platelets. Blood counts. ANC. Fear. Terror. Death. These words, so far out of my norm, become every day struggles for Emma, and all the children on her unit, six North. The life on 6N, so vastly different from my own, somehow hit me so very close to home. I get a glimpse of a parent’s worst nightmare, a club no one wants to be a part of. But with this horrible world of 6N, comes a type of feeling you will not find anyplace else. Hope. You feel it coming from every child’s room, radiating from every nurse simile, beaming from every bald little head, as if hope has somehow found its way in to every single IV bag. Every child on 6N was the quintessence of a hero, and the epitome of bravery. Being around this sweet girl made me realize how routine my life had become, how naive I truly was, and how, in an instant, your world as you know it can come tumbling down. Even the everyday tasks were such a struggle for my sweet little Emma. Going from her room to the playroom, a mere 10 doors down the hall would seem quite easy to any “normal”6 year old. With Emma it was a very rare occasion in which we celebrated. She would get out of bed and struggle to walk, her body so weak yet determination stronger than words. I would guide her IV pole and all her wires, and slowly yet surely make our way to the playroom. And playing was a whole other story. How could I expect her to play when she could barley walk? But again, her resilience shined through. She grabbed the blocks and began to stack them. And I realize what her life had become. I feel the need to celebrate, as this child has made such a big accomplishment. But then I compare, something you never should do with a sick child, or it will kill you. I compare her to my little cousin, who at age 6 was going to day camp, playing soccer, all things that Emma was once able to do, but now cant. Things “normal” people take for granted. The things I take for granted every day. I learn to celebrate even the smallest things, to live every day like it is a precious gift, and to cherish every moment. And every second I spend with Emma, I learn more and more. I find myself on more than one occasion, trying to hold back tears as she goes through more procedures than I can ever imagine. And every time, I expect her to cry. She gives out a little whimper, but is so much stronger that I ever thought she could be. And somehow, she keeps getting stronger. Shots, IV’s, pain, medication, restrictions, and life in a bed, has become her normal. I find myself mad, so angry that Emma is put through this. But she takes it with such grace. Such ability, with no doubt in her mind, that she will not only live, but prosper. And I think about my life. My tragedies. My struggles. How they all seem so negligible in this new world.

How sometimes, all it takes is a little girl to forever change your life for the better.

 

Our most {heartfelt} thanks to Tiny Sparrow Photographer Jill Serrano for her most beautiful photography of Ariel.