Saturday, April 28, 2012

The Paralysis of Fear....

Babygirl's been sick for more than a year now.  I've been worried, saddened, angered and disappointed.  I've had a million emotions, but until this week I think I really did not have Fear. 

I've felt it before.  There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game.  She missed, and went down like a bag of bones.  There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.

But both of those times the fear was motivating.  It made me alert to the risks, and more able to take action.  It wasn't like this.  This is paralysing.

I've always thought that it's tougher to be a parent when you know what can go wrong.  Kids with eating disorders and asthma die, for sure.  But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.

In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health.  This illness, this hospitalization, were caused by medications given ostensibly to save her life.  Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today  than yesterday.  If things pick up we may go home tomorrow.  Or not.  And there is now way she's going to school for at least a week, maybe two.

I have never seen the fight so taken out of a child.  I never expected my Babygirl to look so beaten.  I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.

I make these kinds of decisions for and with patients all the time.  ALL the time.  I'm not sure how I'll be able to organize my mind to continue doing so.



  1. My heart goes out to you, Darlene. As a mom, I can't even imagine that Fear of which you are speaking. I am going through my own issues with my oldest that have been on-going through out her life. But as you so elloquently and heart wrenchingly pointed out,this isn't the regular Mom fear. I will be praying hard for you and your beautiful daughter. Sending love.

  2. Thank you for your prayers, we truly appreciate them.