By Kimberly Egipciaco and Caitlin McAloon, Guest Bloggers
After ten years of being an active member of the American Heart Association in my home state of Connecticut, my husband and I moved to New Jersey. I immediately felt like a fish out of water. I had left my family, my friends, and those survivors who had impacted my life. Having a corrected Congenital Heart Defect, to many, means I’m not struggling. I’m healthy. I’m well. I’ve got nothing to worry about. A lovely thought, but not quite true.
Simple tasks like running, IVF, delivery, and many other moments of my life were incredibly difficult for me because of my condition. Being born with something like this, means you don’t necessarily know any other kind of life. You just know that everything you sign up for is going to be another chance taken, another “find out in the moment” opportunity, and yet, I am a pretty daring individual all the same. But I am just that, an individual; I am one who never knew anyone like me growing up and somehow that left me feeling lonely for understanding and empathy.
With all my work with the Northern New England American Heart Association, you’d think that I had met at least one person like me. You’d think that I had met a warrior, someone that had been born fighting like myself. Alas, I met stroke patients, and heart attack victims. I met their families, held their babies, and cried over the loss of loved ones. Although empowering and sad all at the same time, there was never another me. Then, I met Caitlin.
After becoming the Northern New Jersey Go Red for Women® Passion Chair, I found a home in this new state with people who were just as passionate as me. Alas, I was still the only one with a Congenital Heart Defect, but something in me knew that I was on the verge of something big, and it happened after I was asked to be interviewed on the radio about my experience being a heart survivor. The interview would be the first one to air on National Wear Red Day in February 2016. I can remember crying tears of joy as I accepted what some might think of as a challenge, but I knew it was much more. It was a gift.
Caitlin made things easier at a time she could’ve never known I was struggling. From the moment we met, I found myself telling her things I never thought I would tell a soul. Little did I know how much I would need Caitlin in those coming months. I believed I was tough enough to make it through anything, but the worst, apparently, was yet to come.
My husband and I had suffered a terrible loss the Fall after I met Caitlin. I may have only been pregnant for 8 weeks, but it felt like my baby was already here. Javier and I had been wishing for a little one to call our own for an entire year. When we received news of our first pregnancy, we embraced it with open arms. Unfortunately, it was simply not meant to be. Our baby had a weak heart and didn’t make it past 9 weeks old. It was a blow I could never have navigated alone, and although my husband was a godsend, a bright light in the dark room of my mind, there was this suffocating feeling of guilt that I could not shake. I refused phone calls, was out of work for a week, and didn’t want to talk to anyone. I couldn’t even call my own mother to tell her. It was just too difficult….and then Caitlin called. She knew I was pregnant and now I had to tell her that I wasn’t anymore. I cried. Hard. I just remember her saying, “You know this wasn’t your fault, right? That baby’s weak heart was not your doing. You need to remember that.” How could she have known? How could she have ever realized how powerful her words were. She read the mind of a broken woman sobbing on the other end of a phone. I’ve always believed that is the reason I met Caitlin. She has been strong for me when I could not be strong for myself. When I felt that I didn’t have a right to complain, she allowed me the freedom to do so without judgment. She has one of the biggest hearts and I will forever be grateful to call her my friend and confidante.
(Kim and Chase)
When I first joined the American Heart Association, I really wasn’t sure what I was looking for. In fact, my mother encouraged me to sign up. “You have a story to tell,” she said. “Yeah, sure I do.” was my reply. I struggled but usually silently, just to my parents and immediate family. I always minimized how I was feeling because I felt like it could have been worse for me. I was seemingly “fixed”. But I knew that I could try to make a difference and spread awareness of heart health and more awareness about Congenital Heart Defect survivors. I hadn’t met another person like me which made me feel alone and I didn’t want to feel that way anymore.
In February 2016, I was invited to be on the radio and share my heart story. I read the email about ten times before realizing that this was how I would share my message with the world. I had a feeling it was going to be one of the best nights of my life, but I got so much more than I bargained for. I met a lifelong friend and that one person, who understood me.
I walked into the radio interview completely shaking, my heart was racing more than usual, and it all felt like a dream. There were so many faces and names that I knew I was too nervous to remember. What I do recall was sitting down next to a fellow survivor. Her name was Kim.
I remember thinking she was beautiful and while I can’t remember what she said to me, I immediately felt like I made a friend. We started sharing stories, laughing, and telling jokes. It was a little group of us and time was flying.
Although we have only known each other for three years, it’s as if Kim has always been there. I’m so happy to have met her at the time in my life when I did. I had always been able to manage my symptoms and feelings regarding my heart condition, but upcoming looming life events recently created a new sense of fear.
Marriage. Pregnancy. Childbirth. Writing a will. I’m so lucky and blessed to have Kim. She’s already been through these things and I feel that she is a light of hope for me to follow. I was there for her during her difficult pregnancy and felt that she was such a warrior for Congenital Heart Defect patients. In truth, she’s a trailblazer.
When we met, it felt like we needed each other. To meet someone that understood having CHD makes you stronger out of necessity. It’s life or death, breathe and keep breathing, fight or die trying.
Our friendship means the world to us both. When we are having bad days, or struggling with our mental or physical health, we understand, not to mention that we share the same interests outside of being heart warriors. There’s never a dull moment when we are together. Many times, we will go days or weeks without talking and then have an hour conversation on the phone about everything from our dogs to music to work. We have each other’s back and support each other. Everyone needs a reminder that they are strong, and we see that strength in one another. We are fighters who have such a special friendship and our story is just beginning.
(Caitlin and Sushi )
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