Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 , I truly appreciate your story and am so comforted by these words: It was a particular moment in time when Ann and I just looked at each other and said we wanted her to be at home with her family. If we lost her, then she would be with Jesus and my Dad and Ann's Mom and no more damned needles and ventilators and hurting and pain for her. At that point, we would have hated to lose her but would have rejoiced that her suffering was done, and all we had to do was wait for our time and then we could finally get to know the real Kennedy, albeit not on this earth. For so long we felt like we were on a holding pattern, waiting for to die. It was almost as if that would be the signal for us to get on with out lives. . .anything less than superhuman attention for her would be inhuman. We really did have to get to a point where we decided that losing her was O.K. if that meant that she could have a real quality of life and be home with us. I do so much of her medical stuff now - things that we used to hospitalize her for. I never wanted to be a nurse (still don't), but I'll do just about anything to keep her out of the hospital. Lucky for me, it isn't because we had poor care, but more because of what it does to all of us in the family - especially . Whatever 's purpose in life - she is surely fulfilling it each and every day. I really have come to believe that a short life is not always a tragedy - it is just a different path. Of course, is still alive and kicking - so one could say that I have no idea what I am talking about - and they are probably right. However, this thought process has at least allowed us to get on with life, taken pressure off of , and provided the most balanced home experience we can, under the circumstances, for our boys. Neglect is certainly not part of our plan - just careful choices. Try to take care of yourselves too...it is so easy to wake up one day totally drained with nothing left to give. It seems like these feelings come in stages and I think it is really important to pay attention to those feelings and let someone else take over for a bit. Thanks for your thoughts, and I am so glad she came out of the experience with flying colors. Please kiss for me and tell her that she has a house full of little girls down in Dixie who think she is just a real sport model. Consider it done! ML -- Lou mom to ,14 Complex I and III; Jeff,16 and Greg,10 (no symptoms) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Re: 's Story Lou - Thx for the reply - don't know why but I think you have blazed our trail for us. Please keep in touch and let us know how is doing from time to time. Holding the fort with you - Hairston Kennedy's Dad Mito CIII, vent, g-tube Re: 's Story , I truly appreciate your story and am so comforted by these words: It was a particular moment in time when Ann and I just looked at each other and said we wanted her to be at home with her family. If we lost her, then she would be with Jesus and my Dad and Ann's Mom and no more damned needles and ventilators and hurting and pain for her. At that point, we would have hated to lose her but would have rejoiced that her suffering was done, and all we had to do was wait for our time and then we could finally get to know the real Kennedy, albeit not on this earth. For so long we felt like we were on a holding pattern, waiting for to die. It was almost as if that would be the signal for us to get on with out lives. . .anything less than superhuman attention for her would be inhuman. We really did have to get to a point where we decided that losing her was O.K. if that meant that she could have a real quality of life and be home with us. I do so much of her medical stuff now - things that we used to hospitalize her for. I never wanted to be a nurse (still don't), but I'll do just about anything to keep her out of the hospital. Lucky for me, it isn't because we had poor care, but more because of what it does to all of us in the family - especially . Whatever 's purpose in life - she is surely fulfilling it each and every day. I really have come to believe that a short life is not always a tragedy - it is just a different path. Of course, is still alive and kicking - so one could say that I have no idea what I am talking about - and they are probably right. However, this thought process has at least allowed us to get on with life, taken pressure off of , and provided the most balanced home experience we can, under the circumstances, for our boys. Neglect is certainly not part of our plan - just careful choices. Try to take care of yourselves too...it is so easy to wake up one day totally drained with nothing left to give. It seems like these feelings come in stages and I think it is really important to pay attention to those feelings and let someone else take over for a bit. Thanks for your thoughts, and I am so glad she came out of the experience with flying colors. Please kiss for me and tell her that she has a house full of little girls down in Dixie who think she is just a real sport model. Consider it done! ML -- Lou mom to ,14 Complex I and III; Jeff,16 and Greg,10 (no symptoms) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Re: 's Story Lou - Thx for the reply - don't know why but I think you have blazed our trail for us. Please keep in touch and let us know how is doing from time to time. Holding the fort with you - Hairston Kennedy's Dad Mito CIII, vent, g-tube Re: 's Story , I truly appreciate your story and am so comforted by these words: It was a particular moment in time when Ann and I just looked at each other and said we wanted her to be at home with her family. If we lost her, then she would be with Jesus and my Dad and Ann's Mom and no more damned needles and ventilators and hurting and pain for her. At that point, we would have hated to lose her but would have rejoiced that her suffering was done, and all we had to do was wait for our time and then we could finally get to know the real Kennedy, albeit not on this earth. For so long we felt like we were on a holding pattern, waiting for to die. It was almost as if that would be the signal for us to get on with out lives. . .anything less than superhuman attention for her would be inhuman. We really did have to get to a point where we decided that losing her was O.K. if that meant that she could have a real quality of life and be home with us. I do so much of her medical stuff now - things that we used to hospitalize her for. I never wanted to be a nurse (still don't), but I'll do just about anything to keep her out of the hospital. Lucky for me, it isn't because we had poor care, but more because of what it does to all of us in the family - especially . Whatever 's purpose in life - she is surely fulfilling it each and every day. I really have come to believe that a short life is not always a tragedy - it is just a different path. Of course, is still alive and kicking - so one could say that I have no idea what I am talking about - and they are probably right. However, this thought process has at least allowed us to get on with life, taken pressure off of , and provided the most balanced home experience we can, under the circumstances, for our boys. Neglect is certainly not part of our plan - just careful choices. Try to take care of yourselves too...it is so easy to wake up one day totally drained with nothing left to give. It seems like these feelings come in stages and I think it is really important to pay attention to those feelings and let someone else take over for a bit. Thanks for your thoughts, and I am so glad she came out of the experience with flying colors. Please kiss for me and tell her that she has a house full of little girls down in Dixie who think she is just a real sport model. Consider it done! ML -- Lou mom to ,14 Complex I and III; Jeff,16 and Greg,10 (no symptoms) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Re: 's Story Lou - Thx for the reply - don't know why but I think you have blazed our trail for us. Please keep in touch and let us know how is doing from time to time. Holding the fort with you - Hairston Kennedy's Dad Mito CIII, vent, g-tube Re: 's Story , I truly appreciate your story and am so comforted by these words: It was a particular moment in time when Ann and I just looked at each other and said we wanted her to be at home with her family. If we lost her, then she would be with Jesus and my Dad and Ann's Mom and no more damned needles and ventilators and hurting and pain for her. At that point, we would have hated to lose her but would have rejoiced that her suffering was done, and all we had to do was wait for our time and then we could finally get to know the real Kennedy, albeit not on this earth. For so long we felt like we were on a holding pattern, waiting for to die. It was almost as if that would be the signal for us to get on with out lives. . .anything less than superhuman attention for her would be inhuman. We really did have to get to a point where we decided that losing her was O.K. if that meant that she could have a real quality of life and be home with us. I do so much of her medical stuff now - things that we used to hospitalize her for. I never wanted to be a nurse (still don't), but I'll do just about anything to keep her out of the hospital. Lucky for me, it isn't because we had poor care, but more because of what it does to all of us in the family - especially . Whatever 's purpose in life - she is surely fulfilling it each and every day. I really have come to believe that a short life is not always a tragedy - it is just a different path. Of course, is still alive and kicking - so one could say that I have no idea what I am talking about - and they are probably right. However, this thought process has at least allowed us to get on with life, taken pressure off of , and provided the most balanced home experience we can, under the circumstances, for our boys. Neglect is certainly not part of our plan - just careful choices. Try to take care of yourselves too...it is so easy to wake up one day totally drained with nothing left to give. It seems like these feelings come in stages and I think it is really important to pay attention to those feelings and let someone else take over for a bit. Thanks for your thoughts, and I am so glad she came out of the experience with flying colors. Please kiss for me and tell her that she has a house full of little girls down in Dixie who think she is just a real sport model. Consider it done! ML -- Lou mom to ,14 Complex I and III; Jeff,16 and Greg,10 (no symptoms) Quote Link to comment Share on other sites More sharing options...
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