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Originally Posted by Dayswalters  The newest info. Is that the specialist says he is 70% sure that my son has one of two degenerative eye diseases that involve the early break down of the optic nerve. This can only be positively diagnosed by DNA since they are caused by a genetic defect in the DNA. There is still a 30% chance that it is some other degenerative neurological disorder, however the specialist doesn't think that it is since all other neurological function tests have been normal. The only way to find out for sure is more tests.
Unfortunately, my son has decided he doesn't want anymore tests. I'm hoping he just needs a break but for the moment, he is refusing to continue. I've decided to let it go for the next few days to give him some time. If he doesn't change his mind, I'll have to figure out a way to change it for him.
Thanks again to everyone. While I am terribly sad that my son is losing his sight, I am grateful that it looks like he will be otherwise healthy. I need to know for certain what is wrong but I think I need to let him digest the info. I'll update when I know more. |
I'm so sorry your son will lose his sight. That's about as tough as it gets. I won't pretend your son hasn't been issued a body blow to his life because he has. Everything about how he lives his life will change and his stress, resentment and anger will no doubt be immense for the longest time to come. But a smart young man, and yours is, will begin to adjust to his reality and in time, even grow to accept it in a practical way.
As insensitive as this sounds right now, believe it or not, your son received just about the best news he could have with that sudden onset of bilateral blindness. He's going to live. He's not got a muscle-wasting disease that will rob him of his ability to function nor a brain malignancy that will take his life within the year. That's hugely wonderful! He'll lose his sight, yes, but he can still complete his education, get an important job, marry, walk the dog and provide for and love a family of his own, should he choose to do that. He's still got a life ahead of him and right now, that's something to hold on to and cherish.
Try not to accept this news or deal with it right now - just let the shock keep you as far from reality as it can for the time being. Let your son do the same and work it out however he wants. Make him take his sedatives so he can relax at times and get his rest. Be there for him and get him professional help if he needs it - the young sometimes can't see a way forward at first. But hold onto this - your son has a future and a real life he'll get to live.