Being a Heart Family is like living in a parallel universe.

Your transition into parenthood included incessant tracking of every mL consumed so you could convert it to caloric intake, monitoring O2 levels, weekly appointments, and open heart surgery looming over your heads.

On the other hand, when compared to those within the heart community, you are so lucky. Your child left the NICU for home, not the CICU. You got to adjust to newborn life together at home, not in a hospital. Your child was able to grow and gain weight before surgery, and wasn’t operated on immediately after birth.

As a heart family, your child has a complex condition that requires constant monitoring, specialists, and extra precautions. Your child is treated like they’re fragile at the pediatrician, but like a rockstar at the cardiologist.

On the other hand, when compared to those within the heart community, you are so lucky. Your child’s condition is well-managed, surgery has passed, and now the hope for only ongoing cardiology check-ups is something other families in this community would love to have.

As a heart parent, your world revolves around cardiac terminology and advocating for your child. You reconsider vacation spots due to concerns over medical care, and put off daycare as long as you possibly can to try to live in a protective bubble. But it also includes so many joys. That feeling of discharge after surgery, hearing “everything looks stable” from the cardiologist, watching your child run after a ball, and being able to watch them grow.

Being a Heart Parent is not something any parent wants. But with the title brings a joy not every parent understands.

Here’s to you, heart families, may you find comfort knowing you’re not actually alone.