Hand to Hold's Official Blog: Written by Parents for Parents

Discussion: How to deal with insensitivity

If I had a dime for every insensitive comment we received since embarking on our NICU journey, I’d be rich!  You definitely will grow a thicker skin over time, but that doesn’t mean that the comments will ever hurt any less.  I’ve found that very few of our friends and family truly “get” our situation and all that we’ve been through – that’s why we’ve decided this group is so very important!

Here’s an e-mail we recently received from one of you:

Last week our friends had their first baby, a little girl. The pregnancy and birth went just about as well as expected. She labored for 10 hours, hard labor for 1 hour, and delivered an almost 8 pound baby girl. Two things put hiccups in their perfect birth plan…one was that the mother’s blood pressure dropped dangerously low when given the epidural so that had to be brought back up with meds and the other was that the baby was born with the cord around her neck and had to be monitored for two hours in the nursery post delivery. These two things are scary and to the first time parent, even worse. But to hear them talk now, you would think that they were both at death’s door. The dad even said as much when he told us, “I thought I was going to lose them both.”

Now keep in mind that this couple is very good friends of ours. They saw what we went through when I ruptured at home, was rushed to the local hospital, and then was life-flighted to the closest trauma center. They watched as we delivered a 2 pound baby boy and he struggled to breathe as he was on the ventilator for a month and after 60 days in the NICU we brought him home. So, why, why, why would they be so insensitive as to act like they have a remote idea of what the fear of losing the mother or the baby is like?

I don’t want to be one of these mothers who tries to “one up” every birth I hear about. Honestly in our circle of friends and acquaintences, we’ll win that battle every time. If they think they had a traumatic trip to the hospital, let me tell my story. If they think their baby had jaundice, let us show them our pictures. If they think their emotions are crazy, try experiencing the emotions you feel the first time you have to leave the hospital with your baby in the NICU. It’s not a conversation I want to win….it’s just the facts.

But among other preemie parents, our situation is pretty darn good. For one thing, we came home with our baby. Too many others leave that hospital with empty arms. Others have feeding tubes, monitors, surgeries, and debilitating problems for the rest of their lives. We haven’t experienced that (aside from the monitor for a short time) so I can’t even begin to understand what those things are like. And in that conversation, other preemie parents “win” the one up contest.

So my question is, am I being overly-sensitive to our friends comments? Through their “woe is me” comments and normal struggles of first time parents, I’ve kept a smile on my face and offered as much comfort and encouragement to them as possible, but the moment we walk away I break down in tears that haven’t flowed this steadily in a long time. I would never have the audacity to tell them how much their words have hurt. Before I was a preemie parent, the things that happened to them in the hospital would have brought me to my knees as well. But to hear them refer to the baby’s “rough start” and act as though there was a true struggle is almost offensive to me after experiencing true life and death struggle.

I hear the words from our friend, “I thought I was going to lose them both” over and over in my head. MY husband was the one who kissed my forehead as the flight nurses tightened the gurney straps and loaded me into the airplane. MY husband had to drive 3 hours to get to my side, not knowing in that time what had happened, what would come next, and even if he would ever get the chance to see me or our baby again. MY husband could say those words and mean them, feel them, and experience them.

If anybody struggles from PTSD from having a preemie, I’m wondering if some of these feelings could be triggered from that. I haven’t been diagnosed with PTSD but I know for sure in the months after our son was born I battled depression. Sometimes, what I call “the preemieness”, absolutely consumes me. It’s pity, guilt, sadness, and now even a little bit of pretentious and of course complete joy when I look at my son…all wrapped into a crazy mom.

I don’t know that there is a question here or anything like that. I just needed to be able to share my thoughts and other parents who have experienced this as one of life’s traumas would be the only ones who can identify.

– Anonymous NICU Parent “Club” Member

We want to know what you all think… I’m sure many of you have had similar experiences (I have, which I’ll address in a future post.)  
Please weigh in and offer 
“Anonymous NICU Parent ‘Club’ Member” 
your support and advice! 
 
Feel free to comment on this post below and/or on the FB page.  

Aimee Sprik About Aimee Sprik

Aimee Sprik (IL) is mother to Connor, born unexpectedly early at 26 weeks, in December 2008, due to an infection. Connor, with his parents, survived a complicated 120-day NICU stay, which changed their lives forever. Since bringing her son finally home, she's felt passionately about volunteering her time and resources to supporting fellow NICU parents, both at the hospital where Connor was born, and by co-founding Life after NICU, an online parent support forum now moderated by Hand to Hold. You can follow Aimee on her personal blog, Sprik Space, or send her an email.

Comments

  1. Ok, here is my attempt…(Kelly)

    I dont think parents of “typical” births have a clue, and many times people become to involved in the box that they live in, that they cant see reality. I have worked in medical since I graduated high school, and I did not have a clue. In the past few years, even prior to having a child, we chose to live a simply life and drop all drama related stuff/people. With that being said, it is so easy to see that people think they are the only ones who have issues and if yours dont fall into their guidelines, they are blind to it. Plus many people thrive on drama each day. (your friends may be those types??) Many times I think we need to shield ourselves from this my letting it go in one ear and out the other. (*easier said then done at times, I know.) I, myself, being a bit truthful at times, (no filter) would responsed with “WOW how do you handle each day……) with a your are ridiculous look and my mind thinking.. jack a$$.

    When it comes to PTSD, I dont think any of us need an official diagnoises, to know we have it. My first experience was almost a year after we came home. I was at another office waiting for my hubby and looked up to see NICU RN’s and staff along with my OB and partner walking in to the building for a meeting. I froze and felt panic when seeing them all together like that. It is weird what can set it off and its ok to have those feelings. Just eb sure to acknowledge them so they dont build into bigger fears.

    Also I will admit, for a long time I had “healthy preemie guilt” I had a 31+3 who is in perfect health and came home meds/ monitor free. I hated talking to mom’s at first from the NICU because I felt guilty. Then another mom, who had a very similar story and healthy 7 year old, who was a 28+ weeker, said let it go. We are all blessed no matter how we come home.

    Hope this helps and remember we are all here because of that little clubhouse called THE NICU. Comments, questions, venting, etc all is welcomed and you maybe surprised to see who we can all help. (Kelly)

    People think once you are home from the NICU, things are not issues anymore.

  2. Some thoughts

    -Sometimes people stick their foots in their mouths. I actually don’t know anyone who hasn’t at some point, including parents of premies.

    -None of your friends think that the issues are gone once you get home from NICU. Just like people don’t anticipate having premies and don’t know how to handle it, their friends and families don’t know how to be the best support they can be. Some try to act normal so that you have something normal to hold on to and some go into full on caregiving mode. No one plans for these events.

    -Friendship is a two way street. If you invite conversations with a friend and then deny them their bad moments, their scary moments, their sad moments EVEN IF YOURS ARE WORSE then maybe it’s time to take a step back and say that you need some space to grieve. If you attack people that care about you with this kind of “but my life is worse” logic, then can you grieve? because somewhere their will always be someone that has it worse than you. BUT Of COURSE you can grieve, because this is a sad situation and just of course you friends can grieve too even if their circumstances and issues are different.

    At some point it’s important to ask yourself, “Are my friends/family being insensitive or am I just looking for a way to punish the world because I had to go through this and they didn’t?”

    I apologize if this comes across too harsh, I know there are a lot of open wounds here I only write this because there are a lot of people out there that have friends/family that are grieving that ARE trying and sometimes just say stupid things.

  3. Anonymous says:

    Your birth story is very tramatic and hopefully you won’t have to experience anything like this again. But just as it was tramatic for you, your friends was tramatic for them. I never questioned why this all happened to our family, because truthfully, why not. I am not so special that I should be excluded from this trama. My brother-in-law and sister-in-law gave birth to a preemie a couple of months ago. Their daughter was five pounds and spent eight days in the NICU. I was heartbroken for them that they had to go thru just a moment in the NICU. I heard my sister-in-law ask “Why did this happen to us, we are good people?” It really annoyed me, like I am not a good person and that is why we had a very sick preemie who spent 6 months in the NICU. She didn’t mean anything by it, this was just how she was grieving.

  4. Oh have I ever been in your shoes! What I try to do is understand that their situation was hard and stressful for them, and offer a consoling word, ‘oh man I hate the sound of those monitors’ or ‘isn’t it amazing to watch the doctors rush into action’, after all we are the experts in stressful births if we can’t understand where they are coming from who can? Most of the time the person realizes who they are talking to and backs off of the ‘our life is so difficult’ speech.

    The real tough part is forgetting/ forgiving such stupid comments later, I’m still working on that part. But if we can handle these moments with grace you can save yourself from bruising a friendship. Best of luck, like most things right now, this aint easy!

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