Friday, December 25, 2009

half empty or half full?

How do you see the glass?

Half empty?
Half full?

I've been thinking about this since our drama episode with Meorah yesterday.  It was frightening.  I actually dealt with it rather well in the moment itself.  You have to stay calm during a crisis otherwise things can get so overwhelming that you become immobile.  It wasn't until much later in the evening, after we learned that the radiologist decided it wasn't NEC, that I broke down.

I got lots of support from people who knew what had happened (love our instant communication society, don't you?).  Everyone shared very similar sentiments:  I'm so glad it was a scare and that she's ok.

But she's not ok.  Neither of them are.

I ran into this when I was on bed rest as well:

"wow, you're lucky.  I'd love to be on bed rest and sleep all day"
"enjoy it now:  you won't be sleeping when the girls are here"
"must be nice to catch up on some movies and TV"

No, it wasn't nice.  It wasn't nice to be living in a state of extreme anxiety every hour of the day because you were afraid you were either going to miscarry (before week 24) or go into labor and have children with lifelong disabilities (between week 24 and 28) or go into labor and have to cope with children with probable problems and waiting years to see if any actually emerge.

Yes.  Tons of fun.  I was very rested.

As for the girls, while they are technically doing very well for what they are - 30 week premature baby girls - they are not 'ok' in general.  They would be 'ok' if they were still inside me, where they are supposed to be.  People tend to think that all they need to do is gain some weight, learn to eat, and they'll be discharged.  Things will be hunky-dory and we'll all go riding off into the sunset.

Well, no.  These early experiences are not what humans are supposed to be experiencing.  The girls are not supposed to be eating, being exposed to light, hearing alarms go off, wearing a diaper, or even being held.  These simple experiences make long-lasting changes in the wiring of the brain, which is still supposed to be growing in-utero.  We have years of early intervention to look forward to, continued re-assessments in the NICU for problems, possible PT and OT, knowing that for the next two winters we have to be very vigilant and not let the girls outside that much because if they get the flu it can be disastrous, not knowing for years if we're going to have to worry about any physical disabilities, developmental delay, or emotional disorders due to being born so early, not to mention dealing with comments by strangers about how small they are for their age, knowing they are going to be a few months behind in all their infant milestones and trying not to compare them to other people's infants....

I could go on.

I don't generally think about all that stuff because it isn't helpful.  I learned while on bed rest not to think more than about a day in advance and to just focus on what is going on now.  And I was doing pretty well with that after the girls were born until yesterday.  And even now I'm not thinking about it...until someone tells me how good the girls are doing without qualifying it, that they'll walk away without any problems, that all preemies catch up by age 2 anyway, how much more rest I must be getting with them in the hospital (???), how all they need to do is learn to eat and things will be great....

I know people are being positive and supportive.  And I know many of those statements are made out of ignorance and are not meant to be malicious.  But sometimes I also need acknowledgement that:

This is hard.  It will be hard for a long time.  Once they get home it will still be a struggle at times.

The fact that it is hard is ok with me.  I'm not railing about how unfair this is and I'm not living in guilt.  Because we can pull through and cope with it.  And no matter what, they are a blessing and beautiful and even if something does happen along the way, they are still mine and I am so very glad they are here.

Ignoring the possible struggles means also ignoring any difficulty I'm having coping with those struggles and negates any anxiety I may be feeling (oh, they're fine, you have no reason to worry).  It also ignores the girls as individuals by making blanket statements as to their well-being.  While denial can be adaptive initially, I prefer to be realistic.  I see the glass.  It may be half empty or half full, but more importantly:  what is in it and what am I going to do with it?

I have faith in my ability to get through whatever comes along.  Rather than hear positive platitudes, I'd prefer to hear people ask me how they are each doing and be interested in what I say while not poo-poo'ing any problems, tell me what a blessing they are, and that they have faith in me too.

Of course, hearing how cute they are isn't unwelcome either...


  1. Yes, this is very hard! My heart and soul are with you, every step of the way.

  2. Love this post. I am so with you on this. I hated all those blanket positive statements, like "they're going to be fine". Drove me insane. And like you, it's not becuase I was choosing to be pessimistic but rather realistic. Totally get it.