Dark Nights of the Soul.....

Staying up all night to comfort a child in pain is a dark, dark thing.  It's one thing to hold the hand of a daughter in labor.  The pain is intense, but the outcome is so joyous a prospect that there is no bottom to the well of support and understanding available. 

For a sick child with chronic pain there is no such well.  Dealing day to day with a child who is dealing day to day with chronic pain uses up reserves of compassion and tolerance.  It's not that you are tired of or angry at the child.  You are tired of and angry at the pain.  Hugs and hand-holding only get you so far, and both of you end up not even wanting to acknowledge the pain.  It becomes the elephant in the room.  It becomes the elephant sitting on your optimism, your hope, your resiliency.

Add a new, acute pain to this scenario and you have a recipe for exhaustion and despair.  Holding my Babygirl through night after night of pain triggered by the spinal tap hit me below the belt somewhere. 

"Breathe through it, baby.  If you can't breathe, talk - it will hurt less than crying does." 

And talk she did.  About how much she hates the pain.  How tired she is of the pain.  How much she HATES kidney failure, transplants, and hospitals.  How much she fears abandonment, death, and being left alone.  How she has nightmares about these things, and what those nightmares look like.

Dark nights of the soul, indeed. 

Everyone who knows Babygirl is amazed by how well she has handled her illness.  But now I know better.  It's time to get some outside help.

DeeDee