June 21st 2012

I remember knowing. I was walking around Saint Anthony's High School in my plaid pleated skirt and short sleeve button down, waiting for my mom, who was not supposed to be the person picking me up from my chemistry regents, she should've been at work... But she had called me and said that we were going to grandma's, a bell went off, both Jennifer and Marissa were admitted to LIJ and had been for weeks so the house was pretty much vacant, we should've been going to the hospital if we were going anywhere...
It added up and I knew. I'm not sure why I knew because Marissa was supposed to be getting better. She had been moved to the ICU and she had been intubated but this was to my understanding all so that her body could rest and she could get better. I had done the research, the median life expectancy was 37, Marissa was 27, I thought I had at least 10 more years.
My mom pulled into the Dunkin Donuts parking lot at the end of my Grandma's block, she parked the car and said to me; first, that she was so terribly sorry and then, that Marissa had not made it. I think I smiled and may have even laughed before I cried. I knew for the whole car ride, I knew while I was waiting at school, but now that it was real, now that it was said I just couldn't believe it. Not my Marissa. The first person I saw when I walked in the house was Jen, she was sitting at the dining room table, the home care nurse was there setting up her IVs and making sure she had everything she needed. Before I could say anything I was pulled into my Aunt Kathy's lap and I can still feel her tears soaking through the shoulder of my school uniform. 

I don't think that it actually hit me until we got home that night, I couldn't sleep, I couldn't stop crying, my heart wouldn't stop pounding. I wandered downstairs and ended up watching Barney re-runs from 3 am until 8 am, comfort food I guess. I remember thinking how will we make it through this, how will I make it through the funeral without her? When my Grandpa died, she held me up, she helped me write my letter to him and even placed it in his casket when I was too scared. She made sure I was alright, found ways to make me giggle, and helped my ten year old self to understand the loss our family was experiencing. But for the loss of Marissa and later the loss of Jennifer, there is no understanding, there is no explanation that can heal our broken hearts or can mend the wounds we feel from the loss of such beautiful young women. What we can do is remember and honor their lives and their spirits which shined through every smile, every laugh, and every hug. 6 years have gone by and I can barely believe it, I would give anything in the world to change it. 

To my Marissa, you are still my drive to succeed, you are still the one I think of when I need advice, and I am still your mini-me. I remember knowing, that you had left us, but more importantly I remember knowing that you had done so on your own terms, that you had been happy with all that you had accomplished, and that you had left a significant legacy behind you. I remember, now and always, your smile, your laugh, your hugs, your always pedicured toes, your willingness to befriend, and your never ending love.

Your memory is my hope.

Great Strides

In April of 2005, my Marissa got married. I was lucky enough to be a junior bridesmaid, and I struggled at 15 to find the right gift for the beautiful bride. I couldn't think of anything that would adequately reflect the love and appreciation I felt for her as a part of my life and also for inviting me to be a part of her wedding. I decided to make a contribution to the Cystic Fibrosis Foundation and to create a Great Strides  team in honor of both Marissa and Jennifer, the team name was JOY. I had a letter writing campaign in my high school resulting in a $1500 dollar donation in the girls’ name. I put together all the materials I had, including letters I had written to the administration,  letters I received back from the principal and other members agreeing to donate monies raised from Dress Down Days that year and in the future, a statement about the team  I had started, and a poem I wrote for the two of them. That May, myself, a few friends, and my mom and sister walked in the Great Strides event at Holtsville Zoo, raising even more funds for the Cystic Fibrosis Foundation. The following year was an even better turn out with more friends joining us for the walk and more funds raised, unfortunately Jennifer and Marissa were never able to participate in the walk with Team JOY, but following Marissa’s passing and Jennifer’s double lung transplant, Jen started her own team in memory and honor of her sister: team love u like an ice cream sundae, we’ve walked together as a family ever since. Jen poured her heart and soul into Great Strides after her double lung transplant; it was a tribute not only to her adoring sister but also to her donor. She was her happiest on walk day, with her friends and family gathering around to support her. She always made an effort to make the day special, whether it was making ice cream cone lollipops, ordering t-shirts, or baking cookies and making butterflies out of fondant. I know my mom has memories of going to Michael’s to find all the right and best cookie decorating tools. After Jen passed away, I think we were all unsure of whether or not we would continue to participate in the walk, and it wasn’t until we got the okay go from my Aunt Kathy that we all agreed it was the best thing to do for Jen. And so keeping in tradition of having something special, Ian and myself, and my mom and sister made a last minute effort to make t-shirts for the walk. After visiting a few craft stores and target, we were equipped with tshirts, iron on photo paper, and fabric spray paint. We made a nice assembly line in the living room and made 20 shirts for the walk. Seeing my Aunt Kathy’s face light up when she saw the t-shirts made it all the more special. So in preparation for our 8th year walking I’m writing from the laundromat in downtown Binghamton, with blue dyed fingers and another 20 t-shirts, my iron on paper is waiting at home as is my new printer ink and some fabric paint. There is no end to the love we have all felt from the these two beautiful women, and as a result there is no end to the support we offer to the cystic fibrosis foundation. I am looking forward to again gathering with Jennifer and Marissa’s friends and family to honor their memory and offer support to the continued fight against cystic fibrosis. 

Holtsville 2006

Holtsville 2007

Long Beach 2007

Hofstra 2009

Lido Beach 2010

Eisenhower Park 2011

Accomplishments

I did it, I graduated with a Master's of Science in Biomedical Anthropology. I wanted to be ambitious and as most people have heard me say one time or another, I wanted to be badass, which to me meant finishing both my bachelor's and my master's in four short years. Looking back, it was actually a very long four years. But now at the end of it, I made it, I did it. And I am badass.

In those four years, I crammed in over 150 credits of coursework, over 200 hours of lab work, countless presentations on Cystic Fibrosis, learning how to drive, over 3500 hours of work between Camp Wee Luv Em, The BonTon, Macy's and North Shore LIJ, four different CPR and first aid certifications, epipen trainings, over 40 field trips, 60 hours of crisis line trainings, 40 hours of online hotline trainings, hours of online hotline, crisis line, and advocacy shifts, growing and donating over 24 inches of my hair, over 30 doctors appointments, over 10 trips to the ER, 1 hospital admission, over 100 humira injections, I don't even want to estimate hours spent in the libraries, I do know there were multiple all-nighter's, but most importantly I crammed in lots of memories.

At the end of it, despite the challenges I faced and the times where I had I truly lost myself, I've learned who I am, who I want to be, how not to ever lose sight of that. One of my favorite artists (since the 8th grade) titled his journal: The Journey is the Destination, looking back I have a new appreciation for this. For all that I accomplished in 4 short years, it's not the degrees that are my biggest accomplishment but the hard work, the resilience, and the drive that got me there, it's my journey that has been my biggest accomplishment.