Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Saturday, May 9, 2009

"She'll Be Fine"

When Eliza was in the NICU the thing I most hated people telling me was "she'll be fine," "everything will be OK," or one of the many variations on this theme. At first I used to say to myself "and how the hell would you know that?" Then I simply started saying it out loud to the usually well-intentioned speaker. My response was often not well received. Maybe some recent tragedies in the micropreemie world have gotten me focused on this over used phrase and poor attempt at comfort, but I have started to notice again how often people say this when they really don't know this to be true. Why do people persist in this? Maybe they think that if they say it enough it must be true and the baby will be fine? I just don't know what they are thinking.

In our little micropreemie world, the past few weeks have had a number of tragic losses and unexpected deaths of babies that were born too soon. Some of these babies had been home and relatively healthy for months, years even, yet the lingering effects of their prematurity took their lives. I wonder how many times did their mothers hear someone flippantly tell them "she'll be fine" when in fact the person had no clue as to what they were talking about. When you really think about it, telling parents "she'll be fine" is not only presumptuous, but is pretty condescending, as if the person actually knows something more about the child's condition than you the parent.

In the same vein, I often wonder why people persist in offering up some example (usually mythical) of another child who has the same problem(s) your child has, but who has triumphed miraculously over adversity. I heard a story not long ago about an alleged "21 weeker" who was now a robust 5 year old with no residual problems ("21weeker" can be loosely translated to "mother has no idea when child was conceived"). Should I walk away feeling better or worse that my 26 weeker has a bucket of problems than the mythic 21 weeker? I asked the person telling me the tale of the 21 weeker if it was possible that the mother simply chose not to divulge the problems the child had, because maybe she (like me) was tired of hearing "she'll be fine" whenever a problem was even mentioned. The person telling me this tale couldn't even accept that it was possible that the mother did what we all do, and simply told the person "she's fine" as a way to end the conversation.

So maybe the next time we want to drag out the old platitudes of "she'll be fine" or "everything will be OK" when someone tells us their child's problems, we will instead say "that sounds awful and I don't know what you are dealing with, but if I can help in any way, please let me know." Because sometimes, things just don't end up OK.

Just a suggestion.


The Gonce's said...

Thank you for voicing that! I feel very similar at times with Bree...and I have been very short with people at times. My most common thing is when I get "What's wrong with her?" (because of her feeding tube) and my new response is "What's not wrong with her?..." and I proceed to tell them all she has already overcome. Instead of concentrating on her "not normal" qualities, let's focus on her triumphs and strengths as a person. WHEW I need to get off my soap box...sorry. :)

evwmom said...

can you have this post sent in to major newspapers, magazines, news shows, etc... My thoughts are, if you don't have a micro preemie, have never seen the walls of a NICU/PICU, have never had a dr tell you there may be no other options... oh i can just go on forever! Just be there to support but keep it shut! Sorry, feeling so helpless right now.
The worst is when it is a surgery day,I have all these people wanting to be there, I know they mean well but sometimes I need to be alone with those I need at that time.

nanamarine said...

Once again, well done Anne. Give Miss Eliza Grace a big hug, and my love to you both.

Proud preemie mom said...

Well said Anne. I hate hearing "Oh he'll be fine" - I would much rather the person just look at me and say "I have no idea what to say right now". It's not so dismissive.

Sarah said...

perhaps the most ingratiating comment that has ever existed on the planet. The thing is, no one wants to accept the truth. It would mess up the false sense of security we all live in.

Anonymous said...

Wow... seems like you've been hanging out in my mind lately. Greyson came to us at 25 1/2 weeks and we are at day 48 in the NICU and I am so tired of everyone saying "I just know he will be fine" Really? Now where the heck did you dig up this confidence and please direct me to the hole! Kind of reminds me of my experience in the hospital when we learned of my HELLP syndrome. I was told that I had less than 2 weeks (I made it 6 days) and so many people said "I know you are going to get through this." Well, I got through it all right... by delivery a precious baby too early that weighed 1 pound 10 ounces.

I don't know what I want people to say but "you all are in my thoughts" would suffice rather than assuming for one second you know the pain that I am experiencing or alluding that you know the medical fate of my child's condition.

Robin Elizabeth said...

Very well said. I am sick to death of still hearinng at 3 years old. Elizabeth was hand flapping like crazy and my sister said there's nothing wrong with her, she
will be fine. That really ticked me off. The good thing is that it taught me not what to say in similar situations.

ThePreemie Experiment said...

I completely agree with you! It ranks right up there with "Well, she looks good to me."

Anne, Eliza Grace's mom said...

I often find that when I speak of Eliza's delays (disabilites?) I am harshly rebuked and told (in a hushed tone) I "must not give up hope." It is as if hope and realism are mutually exclusive. People are inexplicably unable to accept that a parent might have a realistic view of their child's potential and set realistic goals for their child yet still maintain hope that the child will reach that potential and exceed those goals.