Many times a parent of a chronically ill child is faced with decisions that must be made. Oftentimes they are not black and white. Usually they are so greyed that it is not clear if you are helping or hurting.
Most of the time, we are able to talk to the doctors and determine a good decision to make. Not all decisions are like that.
As I have experienced, it seems that I make poor decisions about my child all the time. We decide to take this medication and she’s in the hospital due to a reaction that no one anticipated. Or we are advised to take a different medication and it doesn’t work but the outcome could have drastic consequences.
All this a parent has to face. I am now faced with a decision to make and I fear to make it. On one hand I have a procedure that “could” work and in 80% of people it does. However, during the wait for it to work I have to worry about potentially dangerous outcomes and the likelihood of them rises about 40%. On the other hand we can do a risky procedure that simply scares the crap out of me. She can become disabled by doing this procedure, but if everything works out, she will be cured of this problem immediately.
It is difficult for parents of chronically ill children to make the decisions for their child. If they are wrong, they are the ones who the blame sticks to.
Be kind to us, for we are simply wandering in the dark and hoping and praying that the right decision is made.