I have a friend whose infant son is currently very sick, hospitalized, and no one knows when he might get to go home. Their situation is terrible. We're kind of new friends -- we knew each other before her son was born, but since then, I have been visiting her and her baby whenever I'm in the hospital, and I think we've bonded a bit over what it's like to be a mother of a really sick child. Recently, we had a conversation about the dumb things people have said to us.
The "stupid things to say to a mom" theme started when I was pregnant. You're so small, are you eating enough? Is your baby OK? My patients tell me all the time that strangers feel free to comment on their bodies, saying things like, Are you sure there's only one baby in there? One of my patients, obviously pregnant, told me recently that she was cornered at the grocery store by a complete stranger who, in giving her unsolicited advice, told her stories of several people she knew who had stillborn babies. This is NOT HELPFUL.
People are dumb. They say all kinds of dumb things, even to mothers of sick kids. Most comments, like the ones below, are well-meaning, but just thoughtless.
And so, inspired by a recent conversation with the friend I mentioned above, I have decided to compile a list of what not to say. Feel free to add to it. I plan to.
1. It's going to be OK.
Actually, it might not. Thank you for wanting things to be OK for me, but they aren't right now, and terrible things happen to people. Saying it's going to be OK invalidates my fears that things may not get better. Instead, say, this really sucks. Because it does.
2. Let me know if you need anything.
There are about 4 people in this world that I will actually call and tell that I need something. I'm not going to ask most people I know for anything. If you really want to help, don't ask, just bring over dinner! Watch my kids for a couple hours! Come visit us! (We're not staying in all the time because we want to.)
3. Once I knew this kid who had seizures when he was a baby, and he's fine now.
This is not comforting information. I hope every day that my son will continue to grow stronger, and that he will be fine too. But that might not happen. We don't even really know everything that's going on with him medically and developmentally, so there's no way to predict what he'll be like in 6 months, a year, 10 years. (However, My friend's kid has a great speech therapist. Would you like me to find out the name for you? is helpful.)
This will be a running list, so please share your stories if you'd like.
When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.