Wednesday, June 5, 2013

Don't Know

I don't know who I am any more; where I belong; what I am doing.

Each day seems normal, but how can that be!?! Why do I still have to work, go grocery shopping, do laundry, when my daughter is dieing!  The only thing I want to do is be with DQ, TRex, and MS and spend time with them; snuggle, laugh, play.  I want to enjoy every minute of DQ's time. How is it conceivable that I'm not with her always, soaking up that love?

And yet, I go to work each day. I make her stop goofing around when it is time to go. She still has to be punished for hitting me when she doesn't get her way.

This dichotomy acts as dull scissors, tearing more than cutting through my core, removing all logic, leaving only the rough ends of emotion behind.  I sometimes check the mirror for evidence of the wounds, certain they beckon to the world in a manner only matched by flashing billboards pointing the way to tourist traps.

And at many points during the day, I get angry at myself for hosting such a billboard, screaming so only I can hear: "She is not dieing today!"

Then I convince myself that DQ is completely fine; that all of this has been a ridiculous nightmare; a mere figment of my own overactive imagination. Maybe I imagined the swelling? Maybe she isn't sick at all. The last surgery worked and I'm crazy!

But what is the truth? I meet with the hospice professionals. They make it all feel so very real and matter of fact. They treat us like the Dancing Queen "belongs" and we "belong".  But is this whole charade my fault? Could I have tricked everyone? Maybe  hospice is not right for us. Did the surgical board feel like DQ wasn't going to live simply based upon my observations? Clearly, I'm unqualified to judge anything. I can't even tell what is real any more!

I just don't know.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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