Who is Your Hero?

My sister Nicole is a junior at Boston College.  She applied for and accepted a summer job up on campus this year as an Orientation Leader.  She is having a great time introducing many future students to her beloved B.C. while hanging out with friends during free time.  We were very proud of her when she was invited into this position as she is growing and developing into a strong, confident young women each day.  I always knew Nicole loved me, but Nicole is also the quiet one, or at least compared to me she is!  We may look like twins (one with blonde highlights, one without) but I am the loud one who says what is on my mind, and Nicole is definitely more thoughtful and guarded when it comes to emotions and feelings.  She told me that she had a to give speech a few weeks ago at the beginning of the orientation, and she wanted me to read it.  She didn't tell me what it was about, but I had absolutely no idea I was going to read, and cry, and read, and cry, while seeing the raw eloquence and beauty in her essay.  What did she write about?  My Edward.... I totally didn't see this coming, because, like I said, Nicole doesn't necessarily share her feelings and thoughts as readily as others.  I asked her if I could share this on the blog, and so.............

Who is your hero? Most people say that their heroes are older than them, but my hero is my nephew, Edward, who is 16 months old. There are two dates that will always stick out in my mind about Edward. First on January 19, 2011, Edward made a grand appearance into the world four months early weighing only 1 pound 12 ounces. From the very beginning of his life Edward was a fighter. He has fought through many surgeries and developmental delays from being a preemie, but has somehow found a way to beat his odds. On his first birthday we thought that he was finally healthy, but on March 1^st, 2012 our hopes turned into fears. I will never forget this day. I was sitting in the locker room after a really hard workout and I called my mom to complain about the things that seemed like the end of the world: school, field hockey, and boys. All of sudden I heard my dad’s voice in the background which was weird because he should have been at work. My dad is the type of guy who will work until the day he dies so I instantly thought something was up. So I asked my mom why my dad was in the car and she hesitantly said, “Uhhh we are going to buy a new grill.”  I laughed and said, “What? It’s snowing out!” And to her luck my dad’s phone rang, but before she hung up with me my mom insisted that I call her after class. After my 3:00 English class, I called my mom.  At first the conversation was normal, but then she said “Nicole, I have to tell you something,” and my heart dropped. I remember everything around me froze, as I imagined horrible scenarios in my head. These thoughts began to burry me along with the snow falling around me. My mom said, “Now before I tell you, I need you to promise me that you will be strong and mature for our family right now.” When my mom said that Edward was diagnosed with bilateral retinoblastoma cancer, I couldn’t believe it. I didn’t even know that there was such a thing as eye cancer. Bilateral retinoblastoma is a rare pediatric eye cancer that affects 200-300 children in the U.S. per year. Edward has a stage two tumor in his right eye and stage three tumor in his left eye that is very close to the optic nerve, which makes it scary because it could spread to the brain. Unfortunately, you cannot take the tumors out through surgery so Edward has to do at least 6 cycles of chemotherapy  along with laser eye surgeries. If this does not work, then they might have to remove his left eye before the cancer spreads. Even though I have only known him for a year, I have grown to love Edward more than anyone in my life. All I could picture was his piercing blue eyes that melt my heart everytime I look into them. The next morning I flew to my sister’s house and I remember trying to hold myself together, but when I saw my sister through the glass door I broke down because she is my best friend in the entire world. As I buried my tears into Katie’s shoulder, she held back her tears and said, “Nicole it’s going to be alright, he’s going to get through this.” From the very beginning, my sister Katie and brother-in-law Michael have been optimistic. Instead of acting like I did, Katie and Michael searched for the best doctors for Edward while trying to crack jokes to ease the tension. The moment I finally accepted this was a reality was when I saw him receive his first chemo treatment.  It still didn’t hit me as I walked to his hospital room with my brother and mom. When I opened the door and saw his smile light up the room,  while he was hooked up to all of these machines shooting chemo into him, I felt the worst pit in my stomach that I never want to feel again. All Edward wanted to do was crawl on the floor but we had to hold him and keep him occupied for three hours while he got his chemo (which is very hard to do to a one year old who is active and close to walking). Retinoblastoma does not cause pain, but knowing all of the pain he would go through from the treatments is what brought me to my breaking point. If you look at Edward you wouldn’t even think that he has cancer because he is the happiest little boy in the world. At first this killed me, but I think it is better that he doesn’t know because he just keeps fighting for his life because that is all he has ever known. For a while I didn’t want to be happy because I felt helpless and guilty to be having fun at college while Edward fought for his vision and life. In an attempt to help with the bills that are not covered by insurance, I hosted a bar event on the last day of classes. Even though I can’t take the cancer away, I felt that this was the least that I could do. The event ended up raising over $8,000 to put towards the chemo and eye surgery bills. Before the event, I held in every emotion and fear  because I didn’t want people to feel sorry for me. However, the event made me realize that people truly wanted to help and support me and didn’t just go to drink and celebrate the last day of classes. That night I was overwhelmed by everyone’s smiles, tears, laughter, and generous donations that people forced me to take because they wanted to help. Neither the success of the event nor the amount of fun people had that night changed my attitude, rather it was the fact that none of these people have even met Edward and felt obligated to help in any way possible. This realization tore down all of the walls I put up from the beginning and gave me a sense of hope that I will be able to get through this. In the beginning I was very stubborn and thought I was strong enough to get through this by myself, but my vulnerability has allowed me to accept the support of my family and friends because without them I wouldn’t be in the right state of mind to be the best aunt to Edward.

So this I believe. I believe in the statement that “You can’t get to Easter Sunday without Good Friday.”  Even though we may not understand why bad things happen in life, these experiences help us to grow, mature, and put life into perspective. I believe that you never know how strong you are until being strong is the only choice you have. Katie, Michael, and Edward have inspired me to be optimistic and grateful for their presence in my life during this journey. Edward’s resilience, smile, and courage pushes me to be a better aunt, sister, daughter, and friend. Rather trying to decipher God’s plan for Edward and my family, I try to be the best that I can be to help my little hero beat cancer.  

Michael and I would like to thank everyone.... our parents, aunts, uncles, sisters, brothers, cousins, friends, etc. who helped distribute "Eddie T-Shirts."  We would also like to thank everyone for their overly generous donations to help with Edward's medical bills.  We are truly blessed with the support from our family, friends, and strangers, yes, STRANGERS! thus far, and each card, email, text, phone call, etc. keeps our spirits high and our hearts focused on Edward winning this battle.  Cancer is an interesting thing.... it has the ability to rip your heart out and make you feel full of love and hope at the same time.... We thank you for keeping our hearts full and our minds free of doubt.  My Edward, my hero, too.