Tuesday, September 9, 2014

Scattered Grief

There is a catch in the back of my throat; my chest seizes up; I have difficulty breathing; then the tears well so big and fat.  I try to hold them in, but I can't.  I am balling uncontrollably in my office, at the grocery store, in my car.  There is every reason and no reason whatsoever for my walls crumbling down.

At the end of summer, I came clean on DQ's carepage about her starting morphine and having to make funeral plans.  At least I thought I was coming clean. That WAS the plan.  So many times, the stages we go through with the Dancing Queen are not real until I post it to her carepage and just as many times, I have held back when posting there.  This time, I purposefully put more out there because I hurt so much more.  It has been utterly exhausting to try and be up beat for everybody else. Yet, when I posted, I only put a fraction of the pain I felt that I needed to write that day, so I didn't really come clean.

And each day, it hurts all the more.  Putting it out there didn't help like it normally does.  It didn't cement my feelings nor give me insight like I have become accustomed. Instead, I am overtaken by waves grief, made more acute when I am pointedly asked how I am doing because the public now *knows* life is so much harder than I had let on most of the summer.

But what am I supposed to say to the random person who I have never really talked to before?  I respond with my pat answer: "I am doing as well as can be expected", but on the inside, I'm falling apart.  I posted to the carepage so I wouldn't have to explain myself to the outer rings of my social sphere. Instead, I have to explain myself more often in a way that sucks.  Just sucks.

I know life is only going to get harder and harder with each passing day.  How will I survive?  I'm not sure any more. I've only made it this far because I had no other choice, but I may not have the energy to continue.

I am so tired.

And when I sleep, my dreams are riddled with nightmares in which some evil has stolen my girl from me.  I spend my nights searching and searching for her all by myself because nobody will help.  I can never find her though.

When her cries of terror rip through the silence of the night, waking me instantly, I know that she is having the same exact dream as me.  She always does--some evil steals her away, leaving her all alone. How can I make it better for her when it won't be?

And what about TRex?  He hides; he won't talk; he won't engage. Are we losing him forever? How can I bring him back before it is too late when he always pushes away, not wanting to burden us?

How has life changed so much?

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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