You’ve run through every pediatrician in the practice to make sure you have the one who will over-communicate with the surgeon, cardiologist, OT, PT, etc. for your child.
You decide that every heart-healthy person in your family needs to get echocardiograms (echo), just to make sure their heart function looks OK.
You dread each echo, to the point where it makes you physically ill, but as soon as your heart warrior is cleared until the next visit, all of a sudden the clouds part, colors are brighter, you can breathe again and you feel like hugging strangers.
Surgery day is the worst day of your life because you had to say goodbye to your child with a horrible question mark looming of whether you would see them again. It’s also the best day of your life once they make it out of the OR. There may be no emotional rush like the one felt when your precious child is wheeled back from surgery — drinking them in, thanking God He brought your child back to you, and feeling a burst of pride, love, joy, relief — every single emotion, all at once.
You secretly enjoy going to your heart-healthy kids’ check-ups, where the most worrisome thing will be something like how to deal with a picky eater or figuring out if they have an ear infection or not.
You suddenly go into panic-mode when your heart warrior is about to be discharged, because now that all the monitors and cords are off, you don’t have an easy way to check heart rate, sats, etc. You consider stealing a pulse ox for home.
You happen to be back in your heart warrior’s hospital for a routine checkup or to drop off a care package, and the sights and smells of the ICU make you nauseous and anxious.
You cling to the Shaun White story when your heart warrior first gets their diagnosis. I for one got a lot of encouragement from the fact that an Olympic champion has tetralogy of fallot and underwent several open-heart surgeries as a kid.
It physically hurts when you hear a heart warrior has passed away; you remember the name of every heart angel. And you secretly worry if your precious child is next.
You have seen the strength and resolve of this tiny person, and you are humbled and changed — for the rest of your life.
When/if you return to “normal life,” somehow things that once were bothersome barely faze you now.
Deep down, you know there might be someone who would love to be in your CHD situation.
You would trade places with your child without a second thought. If my daughter could have my healthy heart, I would do it. And I know you would with your heart warrior, too.
Disclaimer: I acknowledge the privilege I have as a heart mom whose child has survived three open-heart surgeries and is thriving right now. She is also not currently on oxygen or a g-tube or undergoing extensive therapies. This list is meant to extend understanding and support for all of us, no matter where we are on the CHD journey, and is not meant to be prescriptive or an overgeneralization of our collective experience. We all have different ways we deal with our heart warrior’s successes, challenges, and struggles! Please let me know what else you would add, as I’ve only been on this path since 2015.
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Getty image by Sasiistock