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3 'Helpful' Things Not to Say to a NICU Parent

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There are a lot of moments in life when someone tells you something and you just don’t know what to say. You know there aren’t any words that will make any of it better, and there’s nothing you can say, but for some reason we all have to say something.

We know we do it. We say, “It’ll be OK” or “Everything happens for a reason” or “I’m sure this will make you so much stronger” as a way to help them not feel sad or struggle. And when you’ve been on the receiving end of these sentences, which I’m sure almost every one of you has at some stage, do you kind of want to punch that person in the face? Maybe it’s just me…

I think it comes down to the fact that we say these things in an attempt to make that person feel better, but I think the only person who feels better afterwards is the person who said it. This can be multiplied tenfold when you have a baby, and then I think it’s multiplied another tenfold when you have a preemie.

I want to stress: we’re not “having a go” at anyone. We’re also not upset that people have said these things, because we know it’s coming from a place of caring, of just wanting to help in some way. I think as parents of preemies, we just want you to know that although we know where you’re coming from, sometimes we feel a little tired after these interactions.

1. “He/she’s looking really good!”

Thank you. We think he’s looking good, too. But I think we are talking about different things. As the parents, we think he’s looking pretty cute, and he’s also looking pretty good compared to where he came from. But there’s an unspoken half of that sentence: “He’s looking really good, so why do you keep saying it’s hard or he’s not fine?” Or “He’s looking good; he’ll be OK though, right?” Often you’ve seen him in a good moment — the one when we decide, yup, we can go outside the house right this minute. Or you’ve seen him not being fed, or you’ve seen him right when he’s happy and smiling. There’s a side you don’t see, but that doesn’t mean it’s not there.

Remind us our kids are miracles, that they are beating all the odds and are everyday superheroes. We love to hear that. But please understand that when we don’t jump on board with your exclamations, it’s only because we are still trudging through the tough stuff.

2. “Have you tried this?”

Our babies have doctors, nurses and all manner of specialists constantly reading and searching for new evidence on which to base their practice and their choices. That’s the thing about medicine: it has to be fully evidence-based or there’s no safety or accountability.

So as much as we appreciate your desire to help and find a cure for our situation, you’ll forgive us if we don’t embrace your ideas with open arms when you suggest we try giving our baby red wine, because a study you found on the Internet said babies who drink red wine will feed better than babies who drink white wine. It’s not only often a ridiculous idea, but it also makes us feel like you think we aren’t doing enough for our kids, aren’t trying and are just leaving it to the “professionals.” But we are trying hard to leave it to the professionals, because such a huge part of neonatal medicine is trial and error since they are still learning so much. We would rather the neonatologists who have been doing research for the past 20 years do the trial and error on our kids, not Dr. Google.

We would love if you could be our baby’s auntie, or uncle, or cousin or grandparent. Our kids have specialists; they don’t need any more. What they need are friends and relatives to spoil them and cuddle them and talk to their parents about other stuff.

3. “That’s normal.”

Things that are “normal” for a full-term baby don’t necessarily mean the same thing for a preemie. This runs alongside our struggles to identify our baby’s cues as symptomatic of a preemie baby, or any baby? We don’t know, you don’t know and specialists don’t know. So we just muddle through.

You’re telling us it’s “normal,” so we can stop worrying? We’ve had reason to worry from day one. This is our default setting now.

And after all of this, I can guarantee that sometimes we will be the ones saying something that’s no help to anyone. Because at the end of the day, we’re only human.

Follow this journey on Charlie and Oliver.

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Originally published: January 28, 2016
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