Sometimes Congenital Heart Disease Isn’t #1 – And That’s OK

CHD can occupy much of our lives, in times of crisis or through efforts to make a difference in the community. But sometimes it needs to take a backseat. This week, Jess Chenevert, our Marketing Director and mom to Heart Warrior Barrett, shares how CHD is just one part of our lives and that, at times, it’s necessary to temporarily step back.

When you’re in the thick of it, CHD can be all-consuming. As caregivers or patients, it can take every bit of our time, focus, worry, and energy. We reprioritize, and we put the needs of the crisis before anything or anyone else. And that’s okay. It has to be okay for us to do what we need to do to get ourselves or our loved ones through.

When you’re a parent or caregiver of a child living with CHD, you sometimes find yourself having to put your needs, your health, your relationships, your heart-healthy children secondary to the needs of your child who faces a lifelong disease with no cure. There can be a lot of guilt there because it’s unfair and it is. But you need to give yourself a break, some grace and forgiveness when that happens.

It’s also okay when CHD isn’t the center of attention. It’s okay that it doesn’t suck up all the oxygen in a room.

Maybe, your household has other situations that warrant your attention more than CHD does. I have a friend who has a child with CHD, he’s passed initial surgeries and interventions and is stable, doing well, going to school, and thriving. The crippling anxiety her heart-healthy child deals with plays a much bigger role in their day-to-day lives. Does that mean she’s not worried about her CHD kiddo? No. Does that mean she’s forgotten CHD is lifelong because she puts it on the back burner at times? No. Should she be shamed for not having a more active role in the CHD community? Hell no.

It HAS to be okay to take a break from CHD.

When my grandfather caught COVID this summer, and subsequently two bouts of pneumonia, I spent the better part of a month at his bedside 10 hours a day. I worked from my laptop when he was sleeping, and fortunately, my husband was able to take on full parenting responsibilities of our 8-year-old son. I was basically an absent parent for that month, and when my grandfather died, I was dealing with that for the next month, mentally, emotionally, and logistically. The guilt I felt (and still feel) over not spending time with my husband and kiddo was ever-present. The guilt I felt taking some time off from Conquering CHD to deal with personal issues and pressing pause on my work helping my colleagues, our volunteers, and, first and foremost, our CHD patients and families was all-consuming. There is always going to be more to do and more to worry about when it comes to CHD.

 It HAS to be okay to take a break from it.

I know dozens of patients across the lifespan, many of whom don’t engage in the CHD community.  I often find that those who don’t play an active role, whether they are teens or adults, are well informed of their condition, know their limitations, and choose to not give any more space to CHD than necessary. 

But not all patients have the luxury of choosing to not deal with CHD daily, because it’s impacting their ability to live their lives. I know some incredible teens and adults who choose to be active in the CHD community at all times. CHD has a solid place in their day-to-day lives, even when they are healthy. And if that works for them, that’s amazing because we need them to share their voice and lived experiences and move important issues forward. But burnout is real.

It HAS to be okay to take a break from CHD for a hot minute.

Sometimes, CHD isn’t the biggest thing in the room. It doesn’t have to be a part of every conversation you have. It doesn’t have to come before everything else in your life at all times.

CHD is part of your life. Your life is not CHD. There’s so much more for you, you are so much more.

Jess Chenevert joined Conquering CHD as a volunteer in 2015 and now serves as the Marketing Director. She also represents Conquering CHD in the parent community and on several national CHD committees. She was the founding President of Conquering CHD – Minnesota and now serves as a mentor and board member. Jess lives up the North Shore of Minnesota with her husband Nolan, their heart warrior son Barrett, and their puppies Penny and Bo Buckley. When not advocating for patients and families, Jess enjoys Lake Superior, hiking, singing, photography, and arts & crafts.

You can read more about the Chenevert Family’s story at:

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