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Why I Wear Read

HAPPY HEART MONTH! Today is the beginning of an entire month dedicated to the heart!  Heart health.  Heart disease awareness.  Heart disease prevention.  Supporting, encouraging, and remembering those who've lost, those who live with, and those effected by heart defects and disease.  Today the American Heart Association has made the day National Wear Red Day.  Across the globe, people are wearing red for some of those same reasons. I will gladly, proudly, and boldly wear my red for ALL of those reasons. 29-ish years ago, I was recovering from my open heart surgery, my final surgery of three major surgeries.  I had been born with no right ventricle and several holes in my right atrium. The shunts they had put in to try and alleviate some of the problem weren't doing their job any longer. I wasn't even able to walk up the stairs in my house without having to stop several times and catch my breath. The surgery "corrected" the congenital heart defect I was born with before the strain of trying to living with one side of my heart working damaged the parts of my heart I had, before my body began to feel the effects of the lack of oxygenated blood, before my other organs began to try and compensate for the fact that my heart wasn't doing its job.  Bits and pieces of that time in my life are still vivid and clear in my mind.  Others are a bit hazy as if I am watching them from the outside, like in an old home video.  As a little girl I was confused, I was hurt, and I was angry.  So much of my energy was spent in trying to understand and trying to be something I could never and would never be.  As a teenager, that anger and frustration was deflected on to the people in my life who loved me the most.  My heart defect was no longer causing damage, but I still was.  My perspective began to shift in the winter of 2006 when my family took a trip to Boston for a college visit for my sister.  We went back to Boston Children's Hospital, which is where my open heart surgery had taken place.  The hospital had changed a lot but some of the nurses on the cardiac floor where the same ones who had cared for me when I was there.  The nurse took us to meet a little boy who had just had the same surgery I had had all those years ago.  There he was, tubes and wires everywhere, monitors beeping and machines keeping track of his signs of life.   His mom, looking tired and exhausted, was brushing the hair on his head and stroking his cheeks in all the places the medical tape and wires were not.  The nurse called her out and introduced her to me, telling her that I was patient here years ago, and had the same surgery her son had just had.  She explained to her that I was 18 years old now, healthy, and in my first year of college.  The mom touched me face, told me I was beautiful, and just cried; glancing back at her son through the window.  I saw all that I had been through in whole new way that day.  I saw my parents in the little boy's mother.  Standing by my side through every single moment, worried and exhausted but praying over me every prayer they knew how to pray.  I saw myself in that boy.  Wires, tubes, machines, completely helpless to how my body was born but so ready to fight.  In that moment I was no longer angry.  In that moment I understood.  In that moment I was completely one hundred percent okay with having a congenital heart defect.  In that moment I thought that if meeting that mom, and seeing that little boy, was my sole purpose in life, it had all been worth it.  And from that moment on, I embraced my heart defect.  From that moment on I wore my half of heart and all that I had been through as a badge of honor and with incredible pride. So today, as I kick of Heart Month by wearing my red, I have so many reasons to wear it.  I wear red for women who fight against and fight to prevent heart disease each and every day.  I wear red for the 1 in 100 babies born with congenital heart defects, fighting alongside those who are surviving and in honor of those who don't.  I wear it for the little boy I met when I visited Boston Children's, whose name I don't even know, and for his mom who stood firmly by his side through all of it.  I wear read for Brady, a little boy who spent his days in the hospital making friends and reading to and writing notes to baby me after I had my first surgery.  I wear red for Kayla, my roommate during one of my many hospital stays whose family we lost touch with over the years but survived some complications she had a few years after her surgery.  I wear red for Carol and her son Kevin, she's one heck of a heart mom and he's one heck of a heart warrior and both of them have been huge inspirations and incredible friends.  I wear red for my sister, who shares an open heart surgery scar with me and whose healthy heart does everything I can't for the both of us. I wear red for my parents, who have walked through every single step of my CHD journey with me and continue to be my biggest cheerleaders in all aspects of my life.  For all those people whose lives have been forever marked, forever changed, and forever enriched because of person with heart disease or a heart defect. For all those doctors and nurses and technicians and researchers who help to ease the difficulties and search for a cure for heart disease and heart defects.  For all those who can put their hand on their chest and feel the 'thump-thump, thump-thump' of their beating heart. That's why I wear red. What about you?  Happy Heart Month! -Emily PS: If you have a heart story, or know someone with a heart story PLEASE reach out and share!  I LOVE connect with those who wear their red for a great reason!


#heartmonth #wearread #CHDwarrior