Words

I have debated writing this post because I don't want it to be a negative thing or for anyone to feel bad if they have said or done any of these things. My goal in writing this is to try and help others know what to say, or not to say, to help others in difficult situations. Having a child in the NICU and losing a child are both difficult things. People want to comfort and help but often times they just don't know how. I know that I have probably said some of these or something similar at some point in my life because unless you have been through it, it is just difficult to know what to do or say. So I'm hoping this can be helpful. Please don't let this discourage you and lead you to say nothing at all. Even if you say the "wrong" thing, we forgive you, we just want to know that you are there for us. If you don't know what to say, just listen, hold a hand, or give a hug.


What not to say:

My Uncle/Aunt/cousin/dog/sister-in-law twice removed had a baby who was born at X amount of weeks and now he is completely normal. I know these kinds of statements are supposed to be reassuring, but one thing I have learned through all of this is that reassurances aren't always helpful. I had so many people tell me that everything was going to be fine with the boys, and it wasn't fine.

Also, every story is different and every story is important. I just wanted to say yeah but this is my story and my baby. It almost feels like one upping. It feels like someone saying "Yeah your story is nice, but listen to this story about this other baby who was born even earlier and went through even more".

The third part of this sentence also bothered me. I really am glad that the child you know turned out "normal" but even if Cohen doesn't turn out "normal", it doesn't change my love for him. It doesn't matter to us if he doesn't hit all his milestones exactly as every other child does. Our reality is that most likely, he won't, and we are okay with that. 

I know what you are going through. Unless you have had a NICU baby or lost a child, you probably don't know. The fear, joy, heartbreak, questions, and the unknowns are like nothing I have ever been through before.

Don't worry, everything will be fine. Like I said before, I had many well meaning people say this to me and I really came to resent it. Of course we hope and pray everything will be fine, and in our hearts we really want to believe everything will be fine, but that's not always the case.

God needed your baby/God needed another angel. No he didn't, these things happen because we live in a fallen world. God doesn't need anything.

Twins are a lot of work, think how much harder this would have been with both boys. Again, I don't care. I would have done it if there were 10 babies! I want to know what it is like to have twins. I want to know how hard it is. I don't care if a double stroller is hard to get out of the trunk and push around. I don't care if two carseats are hard to put in the car. I don't care if we would have gone through twice the number of diapers. He was my son and I would have done anything for him, no matter how hard. It couldn't have been harder than what we are going through.

You can always have more kids. When the time comes, yes we can. But they will never replace Carter.

At least you got to keep one baby. We did, and we are so thankful, but we had two babies and keeping one doesn't ease the pain of not having both.

Things that are helpful:

A lot of times there aren't words that will take away the pain. But there are things that are more helpful than others.

I am so sorry. 

I am praying for/thinking of you.

I don't know what you are going through but it must be so hard.

I don't even know what to say. That's okay, thanks for being honest. 

If the family has lost a child, call the child by name if he/she had one. Ask things about the baby, birth weight, who did they look like, etc. One of the most painful things for me was when people didn't acknowledge Carter. It made me feel like he didn't matter. It might bring some tears, but for me I am always so glad when people ask about him or to see his pictures. 

Help celebrate the small things. In the NICU, everything that most consider a small thing (the first time baby pees, opens his eyes, gets to wear clothes etc.) is a big thing. When you don't have much to hold on to, these little things are important. 

Congratulations. I can probably count on one hand the number of times I heard this after the boys were born. I realize it was a difficult situation and may not have seemed appropriate, but our boys were still born even if it wasn't the way it usually goes. 

And if words fail, as they may, hold a hand, give a hug and just listen. You don't have to have the perfect thing to say, just be there.


Was that helpful? Again, I don't write this with the intention of offending or hurting anyone who may have said these things to us or others, I just want to try and someone else's difficult situation a little easier. 


*Since writing this post, I have come to a little bit better of a place. I know that people genuinely want to help but don't always know what to say. And that's okay. I try not to hold it against people, because they truly don't know what it's like. And I forgive the people who say these things and I trust that they have good intentions when they say things*