"Hope is terrible. It is better not to have any hope as long as it doesn't mean to despair. To me, to despair means to fail to accept the hopelessness of one's situation. To be able to continue living a half decent life, you absolutely have to accept the situation you find yourself in and to do the best you can. Hope is evil, if it is not grounded in reality." This is what I wrote in my diary 2 years ago when struggling with some setbacks regarding my younger daughter's condition. My wife and I are in a better place now in terms of accepting our situation. That being said, there is an experimental gene therapy that we have been trying to get for my daughter for the past year, so here comes hope again, for better or worse... Trying to get through the bureaucracy of all this has been a nightmare and we are still not sure whether we will able to get her treated, with everything involved. I'm with Camus on this: hope is bad when not grounded in reality. But who defines reality?
I very much hope your daughter is doing better since you wrote this post. Let me know if I can be of any help as a non-pediatric neurologist.
I'm so glad I'm not the only one who thinks of hope with a certain amount of... skepticism (or whatever it is). I have so much sympathy for you waiting on and fighting for the treatment for your daughter. <3
I'm extremely grateful for the offer of help from someone with expertise. My daughter is not really better after the 9-mo course of vision and syntonic light therapy that we thought would alleviate her symptoms. We have an appointment with a highly recommended pediatric neurologist at the University of MN in a couple of weeks. I may message you for help in figuring out what questions to ask at this point.
"Hope is terrible. It is better not to have any hope as long as it doesn't mean to despair. To me, to despair means to fail to accept the hopelessness of one's situation. To be able to continue living a half decent life, you absolutely have to accept the situation you find yourself in and to do the best you can. Hope is evil, if it is not grounded in reality." This is what I wrote in my diary 2 years ago when struggling with some setbacks regarding my younger daughter's condition. My wife and I are in a better place now in terms of accepting our situation. That being said, there is an experimental gene therapy that we have been trying to get for my daughter for the past year, so here comes hope again, for better or worse... Trying to get through the bureaucracy of all this has been a nightmare and we are still not sure whether we will able to get her treated, with everything involved. I'm with Camus on this: hope is bad when not grounded in reality. But who defines reality?
I very much hope your daughter is doing better since you wrote this post. Let me know if I can be of any help as a non-pediatric neurologist.
P.S. I also appreciate that you've gone digging into old posts and found some things worth reading. :)
I'm so glad I'm not the only one who thinks of hope with a certain amount of... skepticism (or whatever it is). I have so much sympathy for you waiting on and fighting for the treatment for your daughter. <3
I'm extremely grateful for the offer of help from someone with expertise. My daughter is not really better after the 9-mo course of vision and syntonic light therapy that we thought would alleviate her symptoms. We have an appointment with a highly recommended pediatric neurologist at the University of MN in a couple of weeks. I may message you for help in figuring out what questions to ask at this point.