“Oh, it’s like a heart murmur, right?”…no it’s not a stinkin’ murmur
Patience is one of those things that God is always working on with me. Sometimes I think he needs a bigger hammer. Anyways, maybe once you found out about a HLHS diagnosis for your child and you’re slowly understanding it all, you start telling people about it. And then you get the same kind of response from about 75% of people. I will say this, they’re SO well-meaning, but sometimes they’ve listened to 0.0005% of what you’ve just said, and it goes something like this:
Friend: “So how is everything with the babies?”
Me: “Well things are tough right now, we found out one of the twins has a serious heart defect. It’s called hypoplastic left heart syndrome and it means the left side of his heart is very underdeveloped.”
Friend: “Oh…so it’s like a murmur or something? My friend’s baby had something like that and he’s just fine…eats like a horse.”
And on and on. This is easy a couple times, but when it’s your 17th time going through this and it isn’t even lunchtime, you will want to snap and go spider monkey on them. Don’t. Take a deep breath, pat them on the shoulder, and thank them for their kind wishes. After all, they DO mean well…and you’ll feel a little smarter too.
You’ll find in your HLHS journey that most people who don’t have heart children have NO clue what you’re going through. They just don’t wrap their heads around the vastness of it all. But I will encourage you to keep talking about HLHS…be an advocate. You know what it’s like, so tell people about the experience. By you being a small-time advocate, you might spark interest with someone who will become passionate about HLHS and be the next GREAT advocate!