Reflections from Orange Slices

This is my first post, so bear with me. I have many thoughts to share about my experience of running the 2014 Boston Marathon as part of the Genzyme Running Team for NORD. In keeping with our captain’s advice, Phil Maderia on Marathon Morning, to ‘Feed Me…”, here are my thoughts on running the 2014 Boston Marathon.

When Phil said our theme for Marathon day was “feed me”, I was instantly reminded of my earliest memories of the Boston Marathon as a little girl “literally feeding” the runners on the course orange slices from my hand outside my family home in Natick. As a little girl, I would go to the market with my Dad to get bags and bags of oranges that he would then cut the oranges for me and my two sisters and I would hand out to the runners), Orange Slices were “the thing” to hand out in the 70’s! Looking back as a young spectator the Marathon was always a great day for a family gathering, my extended Irish Italian loving Family. My Dad, being Italian, loved to over feed everyone, including the Runners on Marathon Day! My Dad believed it was our job as spectators to “feed the runners”. Hey — isn’t that what Phil advised our team on Marathon Morning, keep the mantra ….”feed me” …..with inspiration” and truly embrace the experience of the run. Feed me the strength and remember the greater good: spreading and raising awareness of NORD and Rare Diseases.

I was fed all along the course —by inspiration from my family in Natick, the loving and gracious Kimmel’s and Genzyme supporters at Mile 14, and my loving husband and Son at mile 17. It was not “my day”; it was about raising awareness of NORD and being part of something much bigger than my finish time.

I kept telling myself that I run because I can….and truly respecting it is a privilege I am blessed with. Some of you may know that I fractured three toes early in training this winter and the toes were a constant reminder to me that my nagging toe pain is Nothing compared to those dealing with rare disease. During the Marathon early on, the emotions were overwhelming at times. I was overwhelmed first in Natick when my beautiful, smart, and gifted older sister of just 3 years is now “wheelchair bound” and unable to walk due to MS,…After I hugged my entire family and I ran down the street to Natick Center, I yelled “why”, to my town center, the streets I walked as a child to middle school, church and the jewelry store,…”why??” While I chanted the word why to myself, I kept saying why Michele, Why Victoria, Why Shauna….”. I had to then pull myself together and I remembered the “feed me” advice from our captain, let the crowd inspire you. This allowed me to run through the streets of Wellesley past scream tunnel plugging on to the Church at mile 14 and our NORD Family…I could not wait to see HELEN and JOHN, Shauna and her Family, and all my Genzyme colleagues and NORD friends. I was grateful for the “feed me” the inspiration I needed to get to Heartbreak Hill. Then on to see my greatest fans; Jack and Sean. My husband Jack and one of my son’s Sean, literally feed me hugs and vitality. I was feed inspiration when I reached the Hobart street sign on Comm Ave, and knew Paul, my college freshman son.. was “feeding me from Hobart College”.

When I reached Boston College I knew the Jesuits would “feed me”, more inspiration and I quietly prayed that the next 6 miles I would be able to make my true heroes proud and finish the Boston Marathon.

I am blessed and humbled to be part of this special GRT. Thank you to the entire Running for Rare Diseases community for “feeding me” that allowed me to complete the 2014 Boston Marathon. Michele, The Kimmel’s, and Shauna you are the heroes!

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3 Responses to Reflections from Orange Slices

  1. Erica Thiel says:

    Beautiful!
    Thank you for running for those if us GRT Rare diseases pts (and all rare disease pts really)!

    Erica
    http://www.rarelydefined.blogspot.com

  2. Laurie Sperou says:

    Love your post Sharon! What hit me the most is the “why”? When being diagnosed with a rare disease, (at least as a parent), there are MANY why’s. As time goes on we live our daily lives and try not to think about the why’s but they do randomly pop up. Shauna had her full body MRI this weekend which she has twice a year to screen for osteosarcoma. Seeing my little girl all wrapped up and coping with lying still for 2 hours in this big scary machine the Why question comes back in full force! Waiting 2 days for the results and praying that everything comes back normal…Why?

    Then that phone call comes that I am so afraid to answer … normal results … a huge sigh of relief and happy tears : )

    Here are the why’s we try to focus on!
    1. Why do we have these wonderful doctors who have opened their arms to our daughter and our family! Who make sure they don’t keep us waiting longer than they have to because they know the stress we are feeling!
    2. Why do we have the best family and friends who are sharing our journey and helping us every step of the way?
    3. Why would a perfect stranger step up and run a marathon in memory of/in honor of…a person with a rare disease?

    There are a lot of good why’s because there are a LOT of good people out there like yourself! Hope we can cheer you on for many years to come!

    Much love and thanks to all of the Genzyme running team!

  3. Jessicac says:

    Sharon, this post is really beautiful! From now on, “orange slices” will be a tangible symbol in my mind for the inspiration and strength we receive from others that allows us to carry on when the going gets tough. Thank you for writing this and for being, always, such an amazing teammate and friend!

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