February is Heart Month! | CHD Awareness 2021

Heart Week is here! I posted Leyton’s heart story on Instagram to kick off a full month dedicated to spreading CHD awareness this week. If you’re new here, our son Leyton is currently 17 months old, and was diagnosed with both Transposition of the Great Arteries and Coarctation of the Aorta by the time he was 3 days old. You can read more about his diagnosis and the weeks that followed here.

What is Heart Month?

Beginning in 1963, during the month of February the CHD and Heart Disease communities come together to spread awareness and recognize American Heart Month. Here’s a look at the history dating back to 1915, put together by the American Heart Association.

Every year Conquering CHD, a wonderful CHD advocacy organization, hosts a social media photo challenge where every day of the month is dedicated to a different element of CHD and how it impacts heart warriors and families. Many of the accounts I follow on Instagram participate, and even those who don’t commit to the challenge, typically incorporate more CHD awareness into their social posts than usual. It’s heartwarming to see so many band together to share their stories, raise funds and awareness, and educate others about CHD.

It can also be incredibly overwhelming. I smile as I scroll my feed flooded with red hearts and the beautiful faces of heart warriors like ours, but there is also a lot of pain and trauma woven throughout every story. Ours included.

What Heart Month Means to Me

Becoming a CHD mom changed my life in ways I couldn’t have possibly prepared for. It shaped my pregnancy and postpartum experience. It gave me a new outlook on life, and it also unearthed overwhelming fears and anxiety.

As more time passes it gets harder to look at the images of Leyton in the hospital. At the time we were deep in the trenches and survival mode was all we knew. I looked at this perfect little human we created and became consumed by a fresh, new love. So deep it was almost blinding. Now I look back at the photos I proudly sent to friends and family and my heart sinks. 

I shared those images a year and a half ago wanting to shout from the rooftops, “look at my precious baby!” And now I look at them with tears in my eyes. Look at my precious baby. 

I push past that feeling and continue to share the good and the hard days, because both earned their place in our journey. 

Sharing our CHD Journey

Sharing helps families prepare and not feel so alone. It’s how we spread awareness and makes a bigger impact. Our stories fuel funding, research and medical and cardiovascular advancements. Sharing gives a voice to every life affected by CHD.

Clearly advocacy is important. It’s also important to check in with ourselves and recognize what we have the emotional bandwidth to handle at any given time. Sometimes I need to step away if an image triggers hard feelings and it becomes too much. I’ve participated in the photo challenge on the days I feel compelled to, and skipped the days where the memories are too triggering.

When I thought about what I wanted to contribute to heart month, my desire to connect with heart families continuously came to the forefront. So I’ve tailored the resources and content I’ve created around our experience as heart parents, and hope they are helpful to anyone in a similar position.

I’m also mindful of the fact that while CHD touched our whole family, it’s Leyton’s diagnosis. His body. His future. As he grows he’ll develop his own relationship with it and he gets to decide what that looks like and how he’ll express it. Just because it helps ME to share how I feel about all of it, doesn’t mean he’ll feel the same. And that’s completely ok. Until he can tell me for himself I’ll continue to share from my perspective, as it’s really the only one I have any authority over. 😉

If he turns to me one day and says he wants to be removed from social media completely, I will respect and honor that. I also want to make sure I can do that without completely erasing the work I’ve put into creating resources for other heart parents. I may not talk about it publicly but it’s something I think about a lot. I’m a mom first and foremost. His mom. And I will do anything and everything to make sure he knows I support him and put him above all else.

Upcoming Heart Month Posts

I’m working on posts for this month that touch on CHD as it relates to:

• Surgery & Recovery In-Patient Care

• Postpartum

• Breastfeeding

• Cardiac Caths and Overnight Hospital Stays

• Stress and Anxiety

• Support from Family & Friends

Thank you for being here and sharing my little corner of the internet with me. My best wishes to everyone navigating their own journey with CHD today. There’s an incredible community of people all fighting for the same cause and I’m proud to be one of them. Happy Heart Month.