Post by Amy Lombardi on Mar 31, 2009 11:52:41 GMT -5
Subject: thoughts
Name: peg davis
Date Posted: Nov 4, 08 - 10:18 PM
Email: Click here to Email
Message: hello! i've been thinking alot about some of the things people have asked and responded to and have gone over and over again in my mind to phrase it right not to offend or to seem like i am judging anyone but i feel i need to express how i feel about some of the issues--
when it comes to treating my children with any sickness i feel they have the same right to have the same treament as a "normal" person--if they get pneamonia then they should get the same chance to recover--any sickness that has a treatment i feel they are entitled to--
if a doctor says to me that since they have a terminal illness i shouldn't treat them i just go to another doctor that has the same beliefs as i do--respect for human life--not a perfect human life but just human life--
when my son was dieing i did tell him it was okay to go--i also told my daughter 5 months ago when they told me she wasn't going to live much longer--i also told her if she wanted to stay i would take care of her and love her forever--when it's there time to go they don't need our permission--one thing i've learned over and over again that i'm not the one in control--i have to make the decisions and live with them but so often it doesn't go the way i think it should!!
i feel it is their journey and we are to help them accomplish it--sometimes it is just so hard to watch and not know what to do--but maybe this is part of their journey for us to learn?
one of the most important things i have learned is what unconditional love is--Peg
Name: deborah
Date Posted: Nov 5, 08 - 6:36 AM
Message: While I respect you ,
I Want to say there is a time when quality vs quantity of life comes into play.
And even though some may not be willing to go to the extream(intabation,surgery to prolong suffering etc)doesnt mean they are not giving thier child treatment they would give a "normal"person.I am not to be put on a vent or any extream measures if that choice has to be made.
I do not think that makes me only respect "perfect" human life, vastly different ,I think it makes me respect life even more.Living vs. existing.
I have not nor will I ever deny Hilliary comfort,and normal medical care.I however will not put her on a vent to prolong her suffering and pain.I will treat illness with meds as needed,I will give her pain meds to help keep her comfortable.
And by no means will I do anything to harm Hilliary.
I am not tryng to start a debate or to offend any one ,but like you just stating how I feel.
Name: nori
Date Posted: Nov 5, 08 - 7:17 AM
Email: Click here to Email
Message: Above everything else, every person has to do what they think is best. I believe our children have ways of telling us what they would want and that we have an obligation to respect their wishes. When the time came for my boys, I had absolutely no doubt about what they wanted. Doing what I want vs what they wanted would have been selfish. Remember, you have a long life to live after they are gone and you have to be comfortable and believe you did the right thing for YOUR child. I believe that regarless of each individual's "end of life" beliefs there is not one Batten's parent who does not do everthing in their power to do the right thing for their child.
Name: Glenda Flatt
Date Posted: Nov 5, 08 - 11:40 AM
Email: Click here to Email
Message: Would like to talk to you when you have time...glendaflatt@yahoo.com
Name: katarina Calderon
Date Posted: Nov 6, 08 - 7:46 AM
Email: Click here to Email
Message: It is such a 'loaded' subject.
I really believe Nori expressed it well.
All of us as parents of Batten children make the best decisions we can, with the knowledge that we have available to us at the time.
All of us love our children immensely, that is in no doubt. Yet we all come from different upbringings/ belief systems ect. There is no 'right' or 'wrong' way.
Keep doing what you're doing. Trust yourself. Listen to your child and your heart.
It is a hard journey. My heart is with all of you.........
Name: Nancy Peterson
Date Posted: Nov 6, 08 - 8:55 AM
Email: Click here to Email
Message: Amen to that. When I post, I try to hear what was posted and direct my comments to that voice. I try to give support to the individual and not change their mind. I have probably made decisions that were wrong in the eyes of others, but each decision was made with my son's best interest, as well as the family. We all have our own passions about this disease and we are all entitled to have them. I know it is hard to hear people doing contrary to your choices and beliefs, but walk lightly and remember there is no one "right" way. The bottom line is we are here to support, not judge. Deb you are very eloquent in what you said and no one questions whether you are a good mother for your choices. I knew early on that David would go in his own time and in his own way. He was comfortable and pain free. What more could I ask for. For months I knew he was setting in place his plan. The night he left us he had just been told by his father that several unsettled matters in our family had been resolved and we were all in a good place. Yes, I believe that was what allowed him to let go. He also died without anyone present. Again, that was a David thing. He was very protective of me and his sister. I have done a lot of studying on the subject of death and dying. There is a lot more choice than most people realize. The old saying is that a person will die like they live. My mother and my son were caretakers and both had their final moment without an audience. To this day I believe it was intentional so that no one had their last memory to be the last breath. Believe me, I felt cheated, but time has taught me that they died the way they lived. This is all a huge subject with many feelings and viewpoints. We have to believe in ourselves and what we come to know is right for our children. No matter how the "day" comes, the pain is horrific and nothing we did before makes that better. To all who are in the end stages, go with your heart and your family. No decision is a wrong one in this situation. They are just different decisions. Hurrah to all the fabulous parents of Battens!
Name: peg davis
Date Posted: Nov 4, 08 - 10:18 PM
Email: Click here to Email
Message: hello! i've been thinking alot about some of the things people have asked and responded to and have gone over and over again in my mind to phrase it right not to offend or to seem like i am judging anyone but i feel i need to express how i feel about some of the issues--
when it comes to treating my children with any sickness i feel they have the same right to have the same treament as a "normal" person--if they get pneamonia then they should get the same chance to recover--any sickness that has a treatment i feel they are entitled to--
if a doctor says to me that since they have a terminal illness i shouldn't treat them i just go to another doctor that has the same beliefs as i do--respect for human life--not a perfect human life but just human life--
when my son was dieing i did tell him it was okay to go--i also told my daughter 5 months ago when they told me she wasn't going to live much longer--i also told her if she wanted to stay i would take care of her and love her forever--when it's there time to go they don't need our permission--one thing i've learned over and over again that i'm not the one in control--i have to make the decisions and live with them but so often it doesn't go the way i think it should!!
i feel it is their journey and we are to help them accomplish it--sometimes it is just so hard to watch and not know what to do--but maybe this is part of their journey for us to learn?
one of the most important things i have learned is what unconditional love is--Peg
Name: deborah
Date Posted: Nov 5, 08 - 6:36 AM
Message: While I respect you ,
I Want to say there is a time when quality vs quantity of life comes into play.
And even though some may not be willing to go to the extream(intabation,surgery to prolong suffering etc)doesnt mean they are not giving thier child treatment they would give a "normal"person.I am not to be put on a vent or any extream measures if that choice has to be made.
I do not think that makes me only respect "perfect" human life, vastly different ,I think it makes me respect life even more.Living vs. existing.
I have not nor will I ever deny Hilliary comfort,and normal medical care.I however will not put her on a vent to prolong her suffering and pain.I will treat illness with meds as needed,I will give her pain meds to help keep her comfortable.
And by no means will I do anything to harm Hilliary.
I am not tryng to start a debate or to offend any one ,but like you just stating how I feel.
Name: nori
Date Posted: Nov 5, 08 - 7:17 AM
Email: Click here to Email
Message: Above everything else, every person has to do what they think is best. I believe our children have ways of telling us what they would want and that we have an obligation to respect their wishes. When the time came for my boys, I had absolutely no doubt about what they wanted. Doing what I want vs what they wanted would have been selfish. Remember, you have a long life to live after they are gone and you have to be comfortable and believe you did the right thing for YOUR child. I believe that regarless of each individual's "end of life" beliefs there is not one Batten's parent who does not do everthing in their power to do the right thing for their child.
Name: Glenda Flatt
Date Posted: Nov 5, 08 - 11:40 AM
Email: Click here to Email
Message: Would like to talk to you when you have time...glendaflatt@yahoo.com
Name: katarina Calderon
Date Posted: Nov 6, 08 - 7:46 AM
Email: Click here to Email
Message: It is such a 'loaded' subject.
I really believe Nori expressed it well.
All of us as parents of Batten children make the best decisions we can, with the knowledge that we have available to us at the time.
All of us love our children immensely, that is in no doubt. Yet we all come from different upbringings/ belief systems ect. There is no 'right' or 'wrong' way.
Keep doing what you're doing. Trust yourself. Listen to your child and your heart.
It is a hard journey. My heart is with all of you.........
Name: Nancy Peterson
Date Posted: Nov 6, 08 - 8:55 AM
Email: Click here to Email
Message: Amen to that. When I post, I try to hear what was posted and direct my comments to that voice. I try to give support to the individual and not change their mind. I have probably made decisions that were wrong in the eyes of others, but each decision was made with my son's best interest, as well as the family. We all have our own passions about this disease and we are all entitled to have them. I know it is hard to hear people doing contrary to your choices and beliefs, but walk lightly and remember there is no one "right" way. The bottom line is we are here to support, not judge. Deb you are very eloquent in what you said and no one questions whether you are a good mother for your choices. I knew early on that David would go in his own time and in his own way. He was comfortable and pain free. What more could I ask for. For months I knew he was setting in place his plan. The night he left us he had just been told by his father that several unsettled matters in our family had been resolved and we were all in a good place. Yes, I believe that was what allowed him to let go. He also died without anyone present. Again, that was a David thing. He was very protective of me and his sister. I have done a lot of studying on the subject of death and dying. There is a lot more choice than most people realize. The old saying is that a person will die like they live. My mother and my son were caretakers and both had their final moment without an audience. To this day I believe it was intentional so that no one had their last memory to be the last breath. Believe me, I felt cheated, but time has taught me that they died the way they lived. This is all a huge subject with many feelings and viewpoints. We have to believe in ourselves and what we come to know is right for our children. No matter how the "day" comes, the pain is horrific and nothing we did before makes that better. To all who are in the end stages, go with your heart and your family. No decision is a wrong one in this situation. They are just different decisions. Hurrah to all the fabulous parents of Battens!