Please Heal My Child…

I sit, praying, hoping, loving, watching…How can this disease steel so much from my child.  I find myself looking for signs of improvement…only to find that he still has signs throughout his skin and his actions.  Parker is currently in adrenal failure…barely traces of cortisol in his blood.  I watch him sleep, for his stomach to rise up and down as the bi-pap machine pressing air in and out of his lungs.  Sometimes the movement is so subtle that I feel I have to lay my hand on him…just to check, as I hold my own breath until I feel the soft rise and fall.

I look at his hand and feet…full of swelling with a mixture of red, purple, blue, grey, and white.  His vessels thick and at the surface, as if they will bust out of his skin.  Tiny bruises trickle across his neck and shoulder.  His face…beat red in one moment and pale grey in the next. 

He doesn’t really want to talk…he just wants to be left alone…to sleep and distract himself with videos.  As his Hizentra infusion flows in him, I pray that it boosts him enough to heal.
Lily (our dog) is right by his side…she knows….dogs always know.

Why does this disease try to overcome our child…he is incredibly strong, completely determined to ride through this…always hoping that JA will stop hurting. 

Today he is really dizzy.  He is still having sweats and chills.  

The emotion is in the silence… with love in my heart, please heal my child.