Friday, June 14, 2013

Awkward Encounters

The weather this week has been hit or miss, but there were 2 days that were nice and I was able to take Judith to our local park for a bit so she could burn off some energy outside.  Despite the very heavy rains and storms yesterday morning and the rain overnight, I decided that today would probably be a good day to go again since it was likely it wouldn't be as crowded.  So I packed her in the car, and we drove across town to the park, realizing that we would have the playground to ourselves as there wasn't anyone there at the time.

We were the only ones there for a good 10-15 minutes, and then 2 other ladies brought kids to play.  I was all over the place because my little spider monkey decided to climb to the highest parts of the structure (yep, I'm that parent) and kept acting like she was going to come down the poles instead of sliding down the slides like I kept encouraging her to do.  Finally she stopped threatening to walk over the edges and decided to play in some of the small puddles at the top of the slides.  One of the other women saw her, and struck up a conversation with me.

It didn't take long before the inevitable comments started to come.  We're literally talking a matter of a minute or less.  There was the initial exchange of "Awww, she's so cute!", and no sooner was that out of the lady's mouth the comments came.  "Oh, how old is she?  She can't be 2 yet!"  I said, "Uh, she's actually 2.5."

"No way!  She's so tiny!" The lady said.

In my head, I cringed.  But after 2.5 years of dealing with these types of comments, I'm prepared, and the speech is second nature.  "Yeah, she's a preemie," I explained.

Then the other questions followed, just like I figured they would, and I knew it would be exhausting.  I'm a fairly patient person, but having been through this so many times before I had to brace myself a bit so I could ensure I stayed patient.

"How early was she?"
"11 weeks early, she was 29 weeks gestationally."

"How big was she?"
"2 lbs."
"2 lbs?!  No way!  That's sooooooooo tiny!" (I thought, "why thank you for observing that!  I had no clue!")

"How long was she in the hospital?"
"2 months."

"Wow, that must've been really hard having her there for 2 months!"
"Yeah, it was rough." (although I was thinking, "No shit it was really hard!  I know we had it easier than some, but there were still some incredibly difficult and scary moments, and she almost died at the end of her NICU stay,")

"Did she have an easy stay?"
"She did relatively well."  (again thinking similar thoughts to what I stated above)

"How long did she have glasses for?  Is that a preemie thing?  How do they even know they have problems with their eyes?!"
::insert explanation about her vision here::

And then there was the statement that really caught me off guard:  "Wow!  She looks so healthy now!  That's so wonderful that she's such a healthy little girl!"

If I had a sound track for the moment, you'd hear that sound a needle makes scratching across a record. What the hell do you say to something like that?  I mumbled something along the lines of, "Uh, yes.  Yes she is!" and politely excused myself, wandering over to the slide to make sure Judith wasn't trying to lick the water off of it (and yes, I actually caught her doing it once and almost had a fit thinking about who-knows-what being in the water).  I just couldn't bring myself to go into how she's doing well right now, but she's not really completely healthy and is battling a life threatening, life shortening disease.

I'm usually pretty open about some things, because I see it as a teachable moment for many people, and a moment where I can try to bring some awareness to the issues.  Especially with something like CF, because so many people I've encountered have a lot of outdated information about the disease and don't realize how far research has come in recent years (which is understandable, because let's face it: before Judith's diagnosis, I harbored many of the same outdated pieces of information).  But something today stopped me.  Part of it was annoyance with all of the preemie talk, because at this point it's staler than a week old donut.  Part of it was irritation with overly nosy strangers who don't always check their filters before speaking and keep pressing and pressing for details while staring at my child like she's some sort of side show.  And part of it was not wanting to deal with more nosy questions and having to explain so many details about the disease when I would rather be playing with Judith at that moment.

Doing things like trips to the park are breaks for us from our regular CF routines, and it does help give us a sense of "normalcy" that we don't always get.  So while I'm patient and always polite to strangers who are asking questions, I don't think people really understand that craving for normalcy unless they've been through a situation like having a premature child or one who has a genetic disease/physical disability/mental disability/insert whatever special need here.  And frankly, at this point in the game, I really thought we had put a lot of these situations behind us, but I guess we'll still be dealing with some awkward encounters for a while.


  1. I'm sorry you have to deal with this so often, Becca. I really hate when strangers are chatting with me asking questions/making small talk, so I can only imagine that it's triply awful for you. <3

  2. People are always saying how healthy Cameron looks (or even go so far to say how healthy he is) (including my MIL). This includes while he was battling pseudomonas. Some people just don't get it. I guess they mean well, but it drives me batty.