If there’s one thing I won’t ever do again is apologize for how well Natalie is doing. Sometimes I use a simpler word to explain her current condition: stable. It’s quick. It’s easy. It’s straight to the point and easy to understand.
But in actuality Natalie is more than that.
Not a single day goes by where I don’t feel proud and lucky to be a “heart mom” of a kid who reminds me of why I’m so proud and lucky. Without seeing her scars you could never tell how this huge 44 1/2″ tall and 42 pound kid had a severe hypoplastic right heart. When I’ve had the chance to raise some extra CHD awareness (spreading the knowledge everywhere we go) strangers are stunned. So am I! I’m not even sure if stunned is the right word. I need a more severe word.
In the CHD world you are surrounded by such a wide mix of situations, stories, and struggles. No two stories are ever (or will ever) be the same. Then if you factor in how even cardiologists, specialists, pediatricians, and adult cardiologists depend on these current survivors as new scientific guinea pigs, well then it sort of becomes even more awesome to just blow their minds. Even they don’t have all of the answers or total understanding of how one child can pass away from a defect that another child thrives with.
She’s more than stable. She’s doing fucking fantastic. I sometimes catch myself saying “I’m sorry” more often than I ever need to. A bad habit that stretches from “I’m sorry for moving too slow”all the way to “I’m sorry that Natalie didn’t need a feeding tube”. Let’s get real here- it’s slightly uncommon to hear about children thriving and doing fantastic in the CHD world. Are there others just like Natalie? Absolutely. Are there too many not thriving like Natalie? Very sadly, yes. Everyday I feel a little guilt seep in (and on top of the guilt already piling up) when I read stories and see photos of children and adults not doing as well. Even pangs of guilt hearing about 6, 8, or even 12 multiple heart surgeries. Natalie and I sit there with her #4 and don’t know why it’s only 4. It actually makes me feel really bad. Which is probably really stupid.
Yeah. It’s definitely really stupid.