Posted by Karen (152.163.194.213) on June 10, 2000 at 10:57:15:
In Reply to: developing a strategic plan to find a CH cure posted by tom findlay (tartan) on June 10, 2000 at 08:34:32:
Your post brought tears to my eyes! You know what? Knowing that people like you and everyone else here are out there helps tremndously! Steve is very excited about the *friends* he has met just from my first post. He is not feeling so alone now.
One thing I have come to learn over the years is that it can seem that life just is not fair, especially to the *good* people in the world. Things we cannot change we must accept and until there ever is a cure the first step Stephen needs to make is accept that he has this condition. It's a tough thing to ask of a 9yr old child.
I am of the firm belief that knowledge is power and plan on educating Steve fully about his condition so when he is in the position where he needs to explain it to someone he can without reservations or concern about giving misinformation. His biggest fear is not being believed knowing what he is talking about should help with that fear. The first person we will be dealing with and educating his is teacher who blantantly showed she thought he was lying all the times he asked her to go to the nurse. She has no idea how horrible and worried this made him feel.
Thank you for your compassion, it really means so much to us, more than you can probably imagine.