Monday, May 7, 2012

10 Things to Remember When Giving Advice

I get multiple messages a week from preemie parents asking for advice. I don't mind it at all. I remember when we first had Jack and I was desperately scouring the internet for stories of other micro preemies. I needed to hear, to see, how kids like Jack were doing. Chances are if you've had a preemie, you did the same thing. And then a year or so later, a curious thing happens. Tables turn and instead of you asking the questions, you become the answer. 

I'm a believer that we are all each others biggest support system. Who knows this life better than we do? Who can we trust more than each other? Unfortunately, I've seen and heard of some very bad advice given to preemie parents. Heck, we've been given bad advice so many times, I can't even count! Here's my personal top 10 Things to Remember When Giving Advice. Hopefully we can all continue to learn from each other and give the best advice possible. We are in this together! 

1) Each preemie is different.

- Just because someone has a 23 weeker, it doesn't mean they will be exactly like Jack. Their struggles and triumphs may be totally different. I need to remember this when giving advice. When someone asks if Jack went through a specific type of therapy, I can give my honest and best advice based on our own experience. But always, always, give the caveat that each preemie is unique. Just because something worked for Jack, doesn't automatically mean it will work for another child. And vice versa. Just because something didn't work for Jack, doesn't mean it couldn't work for someone else. Keep this in mind when someone asks you about specific treatments, therapy techniques, and the like. 

2) Honesty is the best policy.

-From my own experience, I don't want things sugar coated. I want real. I want genuine. I want to come fully prepared to handle any situation that may arise when it comes to Jack. Doctors are very good (almost too good, sometimes) with giving non-sugar coated advice. We need to hear the reality of the situation in order to make the best decisions. Yes, it may hurt our hearts like nothing else in this life to honestly hear things. But we need to know. When I give advice to other preemie parents, I try to honestly portray the reality that comes along with having a micro preemie. But! I try not to scare them away. I let them know that no matter how hard things might be, they can do it and they are strong enough.

3) Giving advice is tricky.

-Sometimes the answer to someone's question is more negative than positive. It's natural human nature to want positive news and people come to us usually seeking the positive. But the preemie reality is that it may get worse before it gets better. It may get MUCH worse. You have to weigh the positive and the negative. After I honestly answer, I always choose to end with the positive. With the hopeful. With saying that I am praying for them (because I am). If someone takes the time to reach out to me, I take the time to respond with thoughtful advice. 

4) What would have been helpful for you to hear?

-I always, always think back to where we were a couple years ago. I think about what advice was helpful for us to hear. I think about what things made a difference and what things were not useful. There are some things better left unsaid. We heard a lot of those. I only want to give solicited advice that will be useful, not hurtful. 

5) Don't know? Pass along.

-There are times when I get questions that I have no answer to. Whether the situation wasn't in our own experience or I don't feel confident enough in the answer, I send them to someone else. Pass along those people asking for advice to someone who knows, who has had more experience.

6) Avoid lame cliches.

-Please, please avoid these. Don't say things like "it could be worse" or "I'll pray for you" (If you don't really intend to pray!).  The only cliche you are allowed to say is "the NICU is a roller coaster"... because it's the truth! In my opinion, it's better to have a genuine discussion, cliche free, that allows genuine feelings and thoughts to come out.

7) Don't judge.

This is such a hard one. Things in the NICU are not black and white. There are a million decisions happening all at once and when someone comes to you for advice, they are not wanting to be judged or made to feel bad. Specifically, the decisions going into a preemie being taken off life support are incredibly complex and immense. Yes, you can give your own miraculous story, but again, all preemies are different. Tread lightly. 

8) Don't promise things.

-Don't say things like "your baby is going to make it!" or "they will be just fine!" We don't know this. But there is one thing we do know about life in the NICU. There is death and there is life. It's all happening there and we cannot promise things to others just to make them feel better. Likewise, many micro preemies have life-long struggles. We can't promise that this won't happen. What we can say is "be strong!" and "we are thinking about you." We can let someone know how amazed we are at how well they are doing. We can marvel at the beauty of their tiny preemie. We can cheer them on when they post good news. But we can't promise easy. We can't promise all things good. 

9) One kind word can change someone's entire day. 

-Truth, people! Be kind. Tell someone what a good mama they are. Tell them you are so proud of them. Brighten their day with a kind word. 

10) Somtimes people just need to rant.  

-There, I said it. Sometimes people will come to you for "advice" but what they really want to do is vent. And that is totally OK. Let them vent and feel good knowing that they trust you enough to come to you with their emotions and issues. Who understands more than another preemie parents how incredibly frustrating this whole experience can be? 

What would you add?
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Tatum said...

Great advice! The only one I'd disagree with is the "Roller Coaster" cliche. If the NICU is a roller coaster ride, I'm never going to an amusement park again.

Becky Price said...

Thank you again, for giving me kind words when I needed them. You have a way with words

Julia said...

I don't know how many times I heard the "roller coaster " bit! I got so sick o hearing it! It must be in the training manual!! Lol.. Frankly that was one ride I couldn't wait to get off of!!! Sucked!! We are still dealing w alot of residual , potentially Lon term issues! Also I always ask my son's health care professionals to be frank w me!! Always!!

Jessi said...

Tatum, Ha! I totally agree. The roller coaster IS annoying.

Jord said...

Another great post Jessi. The worst thing we always heard and still do, "It's a preemie thing." I know that things are so different with preemies, but that seems to be the answer to all when Luke isn't doing usual stuff to people. A mom that I met during our NICU stay and I say were going to have shirts made up with that on it, because that is all we heard with our kids.

But I do agree that you just want to be "around" other parents going through a similar situation even if they aren't the same in that sense. I can't say it enough, but no one understands what it is like unless they have went through it themselves.

Not to keep going on, but I know that rule about saying things are going to be fine all too well. My mother in law went around telling everyone that Luke was going to be fine not 20 minutes after he was delivered. I am just finding this out, and all I can say is it really bothers me. People have no idea the severity of the situation, and unless you know it is better not to speak at all in this situation. said...

I used to be incredibly annoyed when people told me "one day you will look back at all this like a distant memory." First, at the time, it offered me no comfort when I was in so much pain, so tired, so afraid. Second, nobody knows the future of a micropreemie. Sure, the NICU may be a distant memory to some families, but for others (like mine) who are still facing long-term consequences and many, many specialist and therapist appointments three years later, it's not exactly a distant memory.

Anne said...

As noted in prior comments, I think the two things I most despised hearing were "she'll be fine" and "pretty soon this will all just be a memory." I was amazed at the clairvoyance some people believed they possessed. And 6 years later with thousands of hours of doctor visits, hospital visits, tests and therapies under our belt and more on the horizon, I think it is safe to say the NICU isn't a distant memory. Of course those old NICU platitudes have now been replaced with "she looks great!" But that's a whole other blog post :)

Alex said...

Couple of things I hated (and still hate) hearing...

1) Oh they are so small for 2 (Duh, I know that)

2) Wow so scary being the NICU so long (again .. seriously, it was a breeze .. blah, double duh!)

3) They are doing great now and are so healthy (outside appearances, don't always show what is going on inside .. they are still post preemies after all)

4) One person had the nerve to tell me 3 months wasn't that early for twins!! GAH!! If you don't know what to say, keep your trapper shut!!

5) Don't remind me that I didn't have the opportunity to "get fat" or "be uncomfortable" since I had the twins early. Fat and uncomfortable is what I was hoping for!!

*deep breath* Ahh I feel better! Thanks Jessi! :)

amy said...

Alex's comments totally cracked me up!!!! I cannot stop laughing!!!!

Amber said...

I am so glad I found your blog!! I just started blogging and am new to all of this. Being a mom of a preemie I am trying to find other preemie moms b/c they can all relate to NICU life and after NICU