By Kelly DiMaggio
29 Mar

To My Village: Thank You

Tuesday, March 29, 2016

I’m sure we have all heard the saying, “It takes a village to raise a child,” but I feel this rings particularly true for those of us with congenital heart disease and our respective family and friends.

My open heart surgeries were performed when I was three months old, two years old, and four years old. From the get-go, a strong community of loved ones surrounded me. My parent’s friends and my grandparent’s friends became regular visitors at the hospital and were by me just as much as my immediate family. Their outpouring of love and support for my parents, who were navigating not only being first-time parents, but also first-time parents to a child with a life threatening heart condition, was unmatched.

Despite having so many people and personalities closely involved in my life, my parents strived to treat me as normally as possible, never drawing attention to my medical differences. They wanted me to experience life just like the average kid, and that I did!

I navigated elementary school, middle school, and high school relatively complication free. As I grew up and began to understand my medical identity more, I cultivated my own support group outside of my family and family friends. My best friend, Kate, has been by my side constantly since the sixth grade. What typical best friends can joke about dropping a backpack of books on your IV site right before your surgery, helping you to the bathroom in recovery, or spending the day with you in your hospital room while your husband and parents went to the cake tasting for your upcoming wedding? Not many, that’s for sure.

When I think of my life with HLHS and those integral to my journey, I think of my grandparents, my grandparents’ best friends, my parents, my parents’ best friends, and my best friends. My village.

It wasn’t until my college years that I started experiencing further complications in relation to my HLHS, such as greatly decreased oxygen levels and three blood clots in my legs. Throughout my many medical experiences one thing has remained the same: The constant presence of my own little village.

But I found myself in a situation I’d never really been in before two weeks ago. I was hooked up to all kinds of wires, having medical testing done, and staying in a medical facility overnight. This time, and for one of the only times I can remember, I was there doing it all alone. To clarify, I was just there for a sleep study. This was a non-invasive, no-risk procedure, but it still stirred up memories of prior medical procedures, complications, and hospitalizations.

I consider myself very brave when it comes to my health and was extremely surprised that I became teary that night after the technician left. I realized then just how much I truly rely on the little village I have behind me, and how blessed I truly am.

Shortly after my initially emotional reaction to being at the sleep study alone, I was reminded that my village is always with me. My phone was buzzing constantly with words of encouragement, commentary of the quality of the room I was staying in overnight, and shared laughter over the ridiculous pictures I was sending of me with wires hooked up to my head. As a general rule of thumb, I’ve really been working on detaching more from constant phone and Internet communication, but I have to say, for this scenario, it was perfect. I found myself reassured and smiling to myself as I finally drifted off to sleep.

I’m sure we can all agree, those who support us through our health trials and tribulations are simply the best. As my adult congenital heart support group calls them, our “support people” are a group unmatched. Today, and every day, I want to say thank you. I know thank you doesn’t even begin to cover it, but thank you. Thank you for showing up. Thank you for sharing. And thank you for being the village behind me.

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