When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

We received a care kit when we were in-patient for my daughter’s heart surgery, but I just couldn’t process or handle another thing coming at me during that time. Fast forward several years and we began to get involved with events with Conquering CHD and we found a wonderful community. We were ready to be a part of the Heart family, make connections, raise awareness, and give back however we had capacity. Once the OH chapter of Conquering CHD was disbanded, we migrated over to the CHAOC with our leaders Gina, Bree, and Stephanie.

Can you share with us your heart hero journey? 

There’s not one event or experience that defines our relationship with the Heart Community. It really has been all about the friendships that all four of us have made, and the familiar faces that we see each time we engage with the CHAoC. We have the thread of CHD weaving us together, but it’s a springboard to an overall support system that can help us navigate through anything we face in life. I love seeing the social media posts reaching out for help and the immediate responses with assistance. I also love that we have a group of advocates at Cincinnati Children’s that know our families and truly care about us.

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

We love any events that involve the Heart Community. We cherish the fact that when we attend these events, we are able to see friends from near and far that we may not have the opportunity to see on a regular basis. It’s a great opportunity to catch up with existing friends and make new connections, and offer support to those just embarking on this journey. We love any event that allows for the kids to have a blast engaging with each other, but simultaneously gives the adults a chance to unwind and talk with one another. The recent Family Night Out at MPH was a great new event, but our favorite event is always the September Heart walk.

For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?

First of all, we are so fortunate to be located where we are with THE BEST Children’s Hospital in the nation, a great organization like the CHAoC, and the American Heart Association. You are in the right place and we are all here for you!

Secondly, don’t be afraid to reach out. Post your questions on social media or ask the CHAoC leads to connect you with someone who may have a way to support what you need.

Third – please come to events! It is hard to make time for everything given how busy all of our families are, but this is a great community to prioritize getting involved with. The CHAoC leads put A LOT of effort into planning and executing the events, so please show them your appreciation by engaging with posts and coming to events when you are READY to do so, which brings me to my last point.

Finally – you need to do what’s right for you. If you feel overwhelmed with everything going on and don’t feel you are ready to engage, that’s OK! We didn’t get involved right away because we were processing what was happening and just trying to get by one day at a time. However, as time went on, the fog lifted and we were ready to get involved. You will get the most out of the events and information if you are in the right space mentally and emotionally.

What is your favorite summer activity you like to do with your family?

We love traveling and being by water any time we can! We love to try new experiences. This year we went to Red River Gorge for the first time to explore and hike and we can’t wait to go back.

Are there any quotes or mantras that you live by?

“There’s a future me who is glad I never gave up.”
“Difficult roads often lead to beautiful destinations.”
“When you reach the end of your rope, tie a knot in it and hang on!”