What not to say to a parent of a preemie….even if you are one

This is what 2 looks like!
November is Prematurity Awareness month.  It is something that we are aware of every month.  And even though, much of King Diaper's early life is in the rear view mirror, it never goes away.

Having a preemie has yielded both horrifying and kind words.  I am still amazed at what people feel the need to say to parents with a child in the NICU.  We lived through a day to day struggle for a long time before our son was stable and on a path that lead us home.  Here are a few gems that may or may not amaze you.

1.  "Do they think he is going to be retarded?"  Um…no and what if I answered yes.  How would that make you feel?  Really!?  I still cannot get past that one.  The question is, are YOU insane for asking that to any parent!?  Just this past week, Craig was getting some paperwork filled out for King Diaper.  When the lady at the desk found out that he was a preemie born at 25 weeks, she asked, "Does he have Down's Syndrome?"  Right there in front of our child!  So, it doesn't stop when you come home.  And yes, I am taking the paper work back to have a little chat with her.  I'm sorry, but my tolerance level for this one failed to exist prior to us becoming parents.  I was a public school teacher.  One of the things I learned many years ago is that every parent's child(ten) is the best they have.  They should be loved unconditionally.  Even if our child had a disability of any kind, he is ours.  We would love him, and that is all that matters to any parent.

2.  "I know exactly how you feel, my child/children were in the NICU (fill in the blank with any number less than 30 days)."  I hate to be the bearer of truly sad news.  But, you in fact don't.  I could do 30 days in the NICU in my sleep.  I had someone this past year say "Yeah, it was hell.  We spent 20 whole days in there.  How long for you?"  193.  I'm not a martyr.  But, I'm sorry the difference there is quite vast.  I would cry every time that someone we had gotten to know left the Ronald McDonald House.  I wanted to go home with our baby.  And it seemed to go on forever!  Plus we took home our baby.  There are many families that aren't that fortunate which is worse than any amount of time we spent in the NICU.  So, anyone that goes home is very blessed and should be aptly thankful for that!

3.  "He has all his parts!"  Wow!  Yep.  Go figure.

4.  "I couldn't hold my baby(ies) for (fill in the blank with any number less than 3 months) and I cried every day."  I would have given my right arm to be able to hold our baby.  I spent so many days crying at his bedside that I don't want to think about it.  It is a true gift to give birth to a baby that you can hold immediately or soon thereafter.  I loved my child through a box and on a warmer bed for over three months before he came off the vent.  Always remember that if you had a preemie that was not on the vent and could be held, you also were given a huge gift.  It is a big deal not to have a child growing in a plastic box hooked up to all of those scary tubes.  Thank God every day - even if you are in the NICU.

5.  "Your baby isn't walking.  Is something wrong with him?"  Nope.  He just got here 15 weeks early.

6.  "What are you going to do if he doesn't make it?"  (I refuse to respond to this.)

7.  "Is he on life support?"  No comment.

8.  "Do they think he will be normal?"  Again, the question is, are you normal?  Most people aren't.  Check out the mirror!  And, normal is way overrated!

9.  "What does he look like?"  A baby.

10.  "Do you mind if I ask how old you are?  Do you think that is what happened to your baby?"  No and no.  I'm 40ish and own it.

Sitting in Mommy's rocker
Before you ask, each comment has a real person attached to it.  This isn't my passive aggressive way to nudge anyone.  I just don't feel the need to humiliate anyone.  I think this has been adequately done by the offenders just by making these comments.

I won't throw in the endless grandmother comments that go right in there with this.  I even had a nurse to ask me if I was our son's grandmother.  Sorry.  I know that I looked like "who'd of thought it" on many days, but really?  That is just going too far!  No mother wants to hear that when she has already reached peak weight, has fried hair, no make up and has come to live in yoga pants.  That will top your day on a whole new level.  Try it out on someone and see how that works out for you.

I even had one person tell me how she had seen pictures of a coworker's preemie grandchild and it looked like an alien.  This person went on to tell me how people shouldn't show those pictures to anybody.  "Its just pitiful."  I'm aware of this, but this "pitiful, alien baby" is loved by someone.  It happened to be us too with our "pitiful, alien baby".   And he is beautiful now and was then.  I can remember thinking as this conversation went on, "Do people think our baby looks like an alien?"  Oh well.  Too bad.

Now before you judge me for all of these statements, don't think that I'm for one minute saying that any parent's feelings aren't real.  The NICU is a hard place.  If you are there for 6 days or 6 months.  But, please do remember that if you are a parent that spent minimal time there, the difference is vast for someone that spent a month to every day that you were there.

Equally, I remind myself often that no matter how long it seemed to go on, that we brought our baby home.  He is healthy and happy and growing.  So many families don't bring home their babies.  This will forever be worse than one single day that I spent in the NICU.

I read about parents now that have spent a year or more in the NICU.  So, even I had it easier than others.  I had someone say just this month, "Oh I know all about a preemie, my baby was 3 weeks early."  I just nodded and said "I know.  Its scary."

Plus, I know that I have at times and places I have lacked tact and may have stuck my foot in my mouth many times.  We have all done and said things we regret.  Think before you speak is said to people and quoted repeatedly for a reason.

I guess at the end of the day, people don't know what to say.  Or they want to "empathize" but it doesn't always come out that way.  Sometimes it is better to listen and say nothing.  And in our busy lives, what is happening to us is the most important thing.  It doesn't always register that someone else may be experiencing something similar or even worse.

And for all of those ridiculous things that people have said, I cannot tell you how kind people were and still are.  People that I went to college with that reached out to us telling about their experiences and how they made it through.  Friends that say things to us now like "Don't worry.  He will be fine.  My kids didn't….and look at them now."  Or the constant reminder that he is a miracle baby and that is the most important thing.

The longer that I am home and able to reflect on our experiences and what I learned from them I realize how precious life is.  We were given a gift.  I don't feel that we can take one minute for granted because it isn't guaranteed or promised to us.

Also, choose your words carefully.  Everyone out there is going through something whether you know it or not.  And while silence is golden at times it is also cruel at others.  During that time, I think Craig and I both lived for phone calls, text messages and Facebook interaction with our friends and family since we were so isolated from everything else in this world.  Those were the things that added sunshine on many dark days.

Mommy and her little guy!
We had friends that reached out to us in so many different ways and we were two hours from home.  Lives go on and our world was stopped for a long time.  But through it all, we had people to come by to visit us, sit with us through heart surgery and just for an afternoon coffee break.  There were friends that came and spent the night to hang out and visit.  Other invited us into their homes during the holidays.  These are all memories that I remember and smile because it is what helped us to make it through.

Our friends and family mean more to us now than at any time in our life.  Going through a crisis tends to make that happen.  Sometimes, we tend to move away from those series of events and begin to forget the important things.  I hope that no matter how much time passes or how old King Diaper is, that I never forget that lesson.  Because that is what matters most and trumps the list of crazy that we encounter.