A.L.
Hi A.,
I am so so sorry for your pain. It is a very difficult and painful position to be in. I am responding because my best friend has a 5 year old who has been diagnosed with Blooms disease. It is a very rare disease that will end up taking his life before his 20th birthday. We have discussed this very issue. Disciplining an ill child. The conclusion she came to is that she wants her sons life to be as "normal" as possible. In the definition of normal comes the fact that he must abide by the family rules. He now has a younger brother and my friend knows it is important to treat both of them exactly the same. She has been disciplining him the way she would if he was not ill and it works. I believe that all children want guidelines. They need to be shown limits so they feel in control, and they need the parent to hold the reigns so they do not feel out of control. As hard as it is, maybe you can think of it as doing him a favor. Making him the best person he can be and showing him he is loved no matter what.
Having an illness is very hard, sometimes I think it is harder on the parent and we feel guilty if we inflict any more pain. Discipline is set up to teach and guide not to create pain. If the house if chaotic and your son feels out of control, he is going to know you are treating him different. He has an illness, but that is part of his life that he needs to come to deal with. It is not an excuse to misbehave or be disrespectful.
I wish you all the best and hope you can find your balance between nurture and teaching. My prayers are with you and your son.
Good luck.
~A.