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Wednesday, December 12, 2012

Fix her

"Once you had put the pieces back together, even though you may look intact, you were never quite the same as you'd been before the fall." -Jodi Picoult

I used to get so mad when people would try to talk to me about "fixing" her.  They would say things like "You never know what the future holds. Someday they will invent a way for her to see".  I didn't want to hear any of it.  I knew they were just trying to give me hope and trying to get me to see the rainbow at the end of all this but, I couldn't hear it.  I again, being a -worst-case-scenario- girl, wanted to make myself believe that she would never be able to see.  Secretly, this was only part of me.  Secretly, I wanted to have hope.  Let's face it.  I am a nurse.  I wanted them to give her some kind of magical pill or hook her up to some kind of machine and fix her.  I just wanted so desperately to wake up one morning to a baby with vision.  I wanted someone to tell me what her future looked like and that she would be okay.  I had that tiny seed of hope for a little while.  Until one day I didn't.  Until one day the growing list of things wrong with her outweighed any hope I had of her living a "normal" life and the disappointment became too much.  Until one day, another doctor, another specialist, another therapist unknowingly squashed that little seed of hope like an insect they didn't even notice.  They never noticed that little seed of hope that I had for her future.

Let's talk about all of those specialists.  Let's talk about how to approach new parents of a special needs child.  First of all, if you're the pediatrician delivering devastating news to parents about their newborn, you should probably wait until both parents are present in the room.  Not tell the new, already hormonal mommy by herself in the hospital room.  You are changing somebodies life forever.  You are informing them of a death.  You need to be compassionate and gentle.  You need to have some kind of emotion.  Also, sometimes parents need a break in between all of the bad news.  You can't just sit parents down with a newborn and give them a 4 page list of everything they think, might be wrong with her.  I don't know.  Break it up a little.  Give us a coffee break.  Offer us some pastries.  By this I DO NOT mean send us back into your tiny overcrowded waiting room where we have already been sitting for the past 2 hours.  Your waiting room is not that cozy and I do not enjoy your uncomfortable chairs or your rude receptionist.  Obviously I'm not exactly sure how this should be approached with new parents.  But, I do know this.  They way it was done with my husband and I wasn't conducive to acceptance.

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