Saturday, April 30, 2011
We had to give Rachel one syringe of fentanyl at 10pm. She woke up after about an hours sleep with a panicked cry and looking blueish. Her cheeks and hands were cold. These 'almost' spells are almost wose than the full blown ones. (on us, that is) At least if she has a real spell, she usually sleeps for a long time because of the drugs. Now, I get anxious waiting to see if she will have a real spell yet or not. I also think all of this is just hurting more now than ever because I love her so much more than I did a year ago. I don't want her to die - I am so afraid of losing her, but I don't want her to suffer either. And I am so afraid that her death will be drawn out and painful. God, be near us tonight. Please drive away the fear that wants to take hold of me.