Let's Talk About Love...

Being in love and in a relationship is one of the greatest gifts that life has to offer, especially for a congenital heart disease (CHD) patient. When I was born, my parents had no idea that I had Hypoplastic Left Heart Syndrome (HLHS). The doctors immediately realized I was cyanotic and something was very wrong, causing them to rush me to the NICU. Shortly after my diagnosis was confirmed, my parents were told I could be baptized and given my last rites, as they believed I only had 24 hours or so to live. Now 28 years later and here I am, happily married for just over three years!

It takes a truly special person to love someone with a chronic illness, specifically a major heart condition. I’m sure I sound like a gushy wife, but every single word couldn’t ring truer: my husband is phenomenal. He is strong for the both of us when I need him to be the most. He empathizes with me, cares for me and loves me unconditionally. There is no one I feel safer with; I would put my life in his hands in a split second. He takes over the ins and outs and to do list of our life when I’m too tired. He understands, but more importantly, he respects the limitations that come with having HLHS. I work full-time and commute, so when the weekends roll around I’m often exhausted. I require much more sleep than the average person just to function and have to be extra careful not to get sick.  I manage meds, juggle doctor’s appointments, and stress over hefty medical bills. Our reality is a bit different than a lot of those in our stage of life. While many couples our age enjoy late nights and hectic schedules, that often isn’t an option for us. Yet my husband has never once made me feel guilty for having to turn down plans or take extra precautions. He is the first to stand up for me, the first to look out for me, and does everything in his power to keep me happy and healthy. Over the past few years I’ve wrestled with some mental health issues rooted in having a chronic health condition, past traumas, and future fears. To say my husband has been there for me every step of the way would be a gross understatement.

Sharing our complicated lives and being in a relationship where “in sickness and in health” has never rung truer, is one of the greatest gifts as a CHD patient. I think I can speak for everyone when I say: to those of you who love us unconditionally, and who have chosen to share their lives with us, thank you. In the simplest, albeit most dramatic sounding terms, I live essentially with half a heart.  When I think of my marriage, and of my husband, I know that for the half a heart I have, he has double the heart. Double the love. Double the compassion. He truly makes this half a heart of mine whole.

Although our reality often does look different than others, we certainly don’t let that stop us! Mike and I are avid travelers, and both share the same passion for the beach, swimming, and snorkeling. We enjoy cooking and have committed to a heart healthy diet and lifestyle together. We love to walk, read, and spend time with our friends and family. We have strengthed our relationship by sharing in the CHD, ACHD and Adult Congenital Heart Association communities as well as becoming dedicated advocates. We chaired our local Congenital Heart Walk last year and will be doing so again this spring. We attend support groups together and recently, as I’ve been lucky enough to do some public speaking a few times, he’s been right alongside me.  The bond we have developed, and love we share, grows deeper and stronger each passing day.

I would be remiss if I didn’t close on the fact that love encompasses so much more than just a romantic relationship. I am so blessed to have family and friends who I love fiercely. They wonderfully fill so many aspects of my life and lift me up in more ways than they realize. As the adult generation of those living with congenital heart disease, we know better than anyone how precious life really is. Love is all around us and we are more than ready to relish in it. Life isn’t about how long you live, but rather, how well you live and who you share your life with. And last, but certainly not least, we must remember to love ourselves. We are unique, beautiful, special, and worthy!