I am a mom of a wonderful 16 years old young man, who became a quad (c1/c2) back in 2002 as a result of medical mistake. He is on vent 24/7, unable to move even his shoulders or seat independently. Fully dependent on someone else help.
For the last 2 years he got his HeadMouse camera and seem to be a bit happier. He learned to deal with his life by just "living in his computer". He refuses to leave our apartment because it's hard to get out and he is just bored outside. Sometimes it seems to me that he accepted his condition and the life he is having, but sometimes he talks about the future like if he had no inquiry.
But how do I accept him being a quad and having no life?! I just want to cry and only thing that is keeping me from it is unwillingness to give up. I am still hopping that some day science will help him at least have control of his upper body, so he can use his hands and be off the vent. I am so terrified about what will happen to him when I am gone. people are so thoughtless and uncaring at times, even the nurse that has been with us for over 4 years still is lazy and doesn't move extra time to fix his hands or even pull his pillow lower to make him more comfortable. And my son just so busy with his camera, that he just forgets to ask unless I just come in and do it myself. I left job because of it, I just can't stand leaving him and then when I come back he looks horrible. Sorry for the long rant, I guess I don't talk about it with anyone and it just piles up inside.
But, the bottom line... should I just stop hopping?