I recently came upon a new breed a parent: one who says her child “has a heart condition.” Naturally, like most mothers of children with congenital heart defects, I tried to ask what her child’s issues were, wanting to offer support.
Her answers were vague at best: “heart conditions.” That was my first red flag. That's not how a heart mom speaks, one who uses acronyms and vernacular that's almost its own language.
I tried to give her the benefit of the doubt; perhaps it was sensitive and she didn’t want to discuss it. However, as I've gotten to know her, I've discovered that most parts of her life are an open book – as are the other ailments from which her child suffers.
It continued to bother me as she began to more frequently compare our children, almost teasing and trivializing what he’s been through – “They could date and go to the same cardiologist.” THAT’S NOT FUNNY.
Parents of CHD children know: you don’t compare. Each child is different; they’ve been through enough already. It’s not a race or a contest to “win” how many issues your child has or how many open heart surgeries they’ve survived.
THERE IS NO PRIZE.
After some research, I discovered that treatment for her child’s “condition” was getting regular exercise and drinking water. While I was thankful for her child’s sake that that’s all it was, I wasn’t relieved. I was furious. She's a fraud.
I tell this story to ask this: Why? Why would anyone ever pretend to walk in these shoes? I wouldn’t wish my son’s history or medical future on anyone. Her words are lies; half-truths at best.
I’m disgusted. It’s an insult to my son and so many other children to talk about what they’ve been through as if your child has been through the same. YOU HAVE NO CLUE.
Do you know what the surgeries have been like? Not knowing if your child would survive – FOUR TIMES. In some cases, not knowing why they couldn’t find the problem.
The sleepless nights. The pain he suffered. The healing – both physical and mental -- he needed to fight through.
Do you know what it’s like to give your child to surgeons and know that they will literally hold his heart in their hands? And all you can do is trust them.
I have dealt with so many people over these past 15 years who have said some utterly ridiculous and insensitive things to me. It’s shameful.
But this? This is different.
I know I should let it go, but I can’t put this out of my mind. I can’t understand why anyone would ever say these things. Compare themselves to him or other children like him.
We have always worked hard to make sure Josh understands that he’s not a victim. Life does not owe him anything; he works for what he gets. He lives a “normal” life -- except when it’s not.
I know I’ll sleep better at night if I can just put this away and chalk it up to ignorance. But it’s hard.
The time is coming. When I will confront her lack of awareness and downright stupidity. I don’t think she realizes yet that she’s woken mama bear.
About Josh's Mom
By day, Stephanie is in marketing; by night and all other times in between, she's a mom and wife, and highly passionate voice for CHD fundraising and research.