Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Dear, dear neurosarc friend, Just tell them, they are much, much stronger than you will know! Really, my daughter is 8 years old now and she knows it very well. I have neurosarcoidosis since she was 3 years old.Sometimes she talks to her grandmother asking about me and my illness, is mommy going to die?? No, she isn't but and than they have beautiful conversations. Not telling the truth is not fair, your children will understand you and help you. Do it together, you are strong with your children! A big hug from the Netherlands, yes neurosarcoidosis could be everywere... Yvonne > > Hello everyone, > > I was recently diagnosed with neurosarc and I'm not sure how to tell my > children--ages 10, 12 and 13. They all want to know what to expect and > will be able to tell if I'm hiding any possible prognosis from them. I > haven't worked since May and have extreme pain in my extremeties. I > also have a lot of numbness, some tremor and other strange symptoms. I > haven't been much of a mom for quite some time and have recently had to > have a lot of assistance with dressing and feeding myself. Driving is > completely out of the question. It's been a big ajustment for them > because I have always been a very active and busy person who took > independance to the extreme. Any suggestions for explaining this > monster to them??? Thanks!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Dear, dear neurosarc friend, Just tell them, they are much, much stronger than you will know! Really, my daughter is 8 years old now and she knows it very well. I have neurosarcoidosis since she was 3 years old.Sometimes she talks to her grandmother asking about me and my illness, is mommy going to die?? No, she isn't but and than they have beautiful conversations. Not telling the truth is not fair, your children will understand you and help you. Do it together, you are strong with your children! A big hug from the Netherlands, yes neurosarcoidosis could be everywere... Yvonne > > Hello everyone, > > I was recently diagnosed with neurosarc and I'm not sure how to tell my > children--ages 10, 12 and 13. They all want to know what to expect and > will be able to tell if I'm hiding any possible prognosis from them. I > haven't worked since May and have extreme pain in my extremeties. I > also have a lot of numbness, some tremor and other strange symptoms. I > haven't been much of a mom for quite some time and have recently had to > have a lot of assistance with dressing and feeding myself. Driving is > completely out of the question. It's been a big ajustment for them > because I have always been a very active and busy person who took > independance to the extreme. Any suggestions for explaining this > monster to them??? Thanks!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 > Not an easy thing ever, but with oldr kids it isntquite as difficult an issue. My oldest two were both adults when it finally became necessary to have the talk, but my youngest was still 14 and had just come through a couple of years of our living with his grandmother who was dieing of bone cancer, so he was still pretty broken up about that. Needless to say it was a pretty delicate time for him, but we decided the best thing was to be as straight and direct as possible and deal with his feeligs as things came up. A dicision I would make again, he handled it much better than I would ever have expected. There weree several weeks when he would out of the blue ask me some pretty uncomfortable questions, or have conversations with me about things I wasnt even ready to face yet, but we got through it and now I really think he is stronger and better able to handle the bad times then his siblings are. So is this the best way to handle things? Dont have a damned clue, but it worked out pretty good for my son and I, for whatever thats worth, God Bless and best of luck with you situation, Id love to hear how it turns out. Stu > Hello everyone, > > I was recently diagnosed with neurosarc and I'm not sure how to tell my > children--ages 10, 12 and 13. They all want to know what to expect and > will be able to tell if I'm hiding any possible prognosis from them. I > haven't worked since May and have extreme pain in my extremeties. I > also have a lot of numbness, some tremor and other strange symptoms. I > haven't been much of a mom for quite some time and have recently had to > have a lot of assistance with dressing and feeding myself. Driving is > completely out of the question. It's been a big ajustment for them > because I have always been a very active and busy person who took > independance to the extreme. Any suggestions for explaining this > monster to them??? Thanks!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 > Not an easy thing ever, but with oldr kids it isntquite as difficult an issue. My oldest two were both adults when it finally became necessary to have the talk, but my youngest was still 14 and had just come through a couple of years of our living with his grandmother who was dieing of bone cancer, so he was still pretty broken up about that. Needless to say it was a pretty delicate time for him, but we decided the best thing was to be as straight and direct as possible and deal with his feeligs as things came up. A dicision I would make again, he handled it much better than I would ever have expected. There weree several weeks when he would out of the blue ask me some pretty uncomfortable questions, or have conversations with me about things I wasnt even ready to face yet, but we got through it and now I really think he is stronger and better able to handle the bad times then his siblings are. So is this the best way to handle things? Dont have a damned clue, but it worked out pretty good for my son and I, for whatever thats worth, God Bless and best of luck with you situation, Id love to hear how it turns out. Stu > Hello everyone, > > I was recently diagnosed with neurosarc and I'm not sure how to tell my > children--ages 10, 12 and 13. They all want to know what to expect and > will be able to tell if I'm hiding any possible prognosis from them. I > haven't worked since May and have extreme pain in my extremeties. I > also have a lot of numbness, some tremor and other strange symptoms. I > haven't been much of a mom for quite some time and have recently had to > have a lot of assistance with dressing and feeding myself. Driving is > completely out of the question. It's been a big ajustment for them > because I have always been a very active and busy person who took > independance to the extreme. Any suggestions for explaining this > monster to them??? Thanks!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 When I read your note I immediately thought I should post, then when I started to do it I experienced memories of my childhood that were very painful. But I want to help so here goes. My mom had a very bad heart condition she was in the hospital most of my life. She died when I was 12. I am 67 now and in the old days children were not allowed to visit patients. My dad and I went to the hospital each evening., I got to be great friends with the elevator operator and the cook in the kitchen. They would watch over me while my dad was visiting mom; Ever once in a while they would sneak me in to see her.but I was only allowed to stay with her for about five minutes. My mom was a great role model for me, she sure taught me lots of good things in those 5 minutes. I now understand how horrible it must have been for her also. What she told me was that her heart was very sick and that there would be times when the Doctor's might say she would only live a few hours. She said that everyone has a specific time to live on this earth, but God new what was best for each of us. She told me that she loved me more than anything in the world and would give everybit of strength she had to stay alive for me. But that she had a very bad disease in her heart that they could not cure. She told me not to be frightened by this and that we should live each day as if it were our last. She explained that some people die when they are not sick. She told me that she would not be able to do all the things that she wanted to do with me but that we would have to work hard at finding things we could do together. What I remember most the wonderful smile and look on her face when she saw me. Most of all I knew that I was really loved. I was diagnosed when my kids were 6 and 7. My husband had just graduated college at the ripe old age of 31. We had planned a three month trip accross the united states from Califoria to Pennsylvania, A week after our journey began I developed erythema nordosa on my legs. I thought I had cellulitis, this was 1971, which was the stone ages for sarcoidosis. It was a terrible time, I really had a bad time of it for about 6 months. Fortunately we had a pulmonary specialist in town that was very interested in autoimmune pulmonary disease. He was truthful and told me the good and bad that I might expect. So I sat down with my sons and explained that I had an illness that would come and go and that there would be times when I did not have the usual energy that I had in the past. I told them we would have to work hard at finding the things I was able to do with them and that they had not done anything to cause me to be sick. She made all my dresses by sewing them by hand in her hospital bed. She always put beautiful embroidered flowers on them. She told me that if things ever got hard in life and I should expect to have my alloted share of them. To imagon that I had a big strong rope, and that I should tie a big strong knot in the rope and hold on with everything I had in me and to not let go. She tried to explain her illness to me and told me she had no idea how many days she had left to live. But that I should always aremember how much loved me and that after she died she would be at my side always and athat I would not have the stolen few minutes that we had together. I was in school the day she diedl, One of my Aunts came to tell me, They called me into the hallway and told me she had died. I'm sorry that I got off my point, the whole experience is still very painful to me, I am 67 and I'm sitting here crying as I type this to you. Just say a prayer and then tell them that you want to tell them about your illness but make sure you tell them they did not do anything to cause you to get sick and that you plan on living past when yoiu will be a great grandmother. Then ask if they have any questions. In fact you might start out by asking if they had noticed that you were not feeling you best lately and wanted to know if they had any questions. Just remember the old joke about the child who went to his mother and asked "Where did I come from?" Mom then began the birds and the bees discussion, her son listened and then said I asked were did I come from Chicago or New York? .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 When I read your note I immediately thought I should post, then when I started to do it I experienced memories of my childhood that were very painful. But I want to help so here goes. My mom had a very bad heart condition she was in the hospital most of my life. She died when I was 12. I am 67 now and in the old days children were not allowed to visit patients. My dad and I went to the hospital each evening., I got to be great friends with the elevator operator and the cook in the kitchen. They would watch over me while my dad was visiting mom; Ever once in a while they would sneak me in to see her.but I was only allowed to stay with her for about five minutes. My mom was a great role model for me, she sure taught me lots of good things in those 5 minutes. I now understand how horrible it must have been for her also. What she told me was that her heart was very sick and that there would be times when the Doctor's might say she would only live a few hours. She said that everyone has a specific time to live on this earth, but God new what was best for each of us. She told me that she loved me more than anything in the world and would give everybit of strength she had to stay alive for me. But that she had a very bad disease in her heart that they could not cure. She told me not to be frightened by this and that we should live each day as if it were our last. She explained that some people die when they are not sick. She told me that she would not be able to do all the things that she wanted to do with me but that we would have to work hard at finding things we could do together. What I remember most the wonderful smile and look on her face when she saw me. Most of all I knew that I was really loved. I was diagnosed when my kids were 6 and 7. My husband had just graduated college at the ripe old age of 31. We had planned a three month trip accross the united states from Califoria to Pennsylvania, A week after our journey began I developed erythema nordosa on my legs. I thought I had cellulitis, this was 1971, which was the stone ages for sarcoidosis. It was a terrible time, I really had a bad time of it for about 6 months. Fortunately we had a pulmonary specialist in town that was very interested in autoimmune pulmonary disease. He was truthful and told me the good and bad that I might expect. So I sat down with my sons and explained that I had an illness that would come and go and that there would be times when I did not have the usual energy that I had in the past. I told them we would have to work hard at finding the things I was able to do with them and that they had not done anything to cause me to be sick. She made all my dresses by sewing them by hand in her hospital bed. She always put beautiful embroidered flowers on them. She told me that if things ever got hard in life and I should expect to have my alloted share of them. To imagon that I had a big strong rope, and that I should tie a big strong knot in the rope and hold on with everything I had in me and to not let go. She tried to explain her illness to me and told me she had no idea how many days she had left to live. But that I should always aremember how much loved me and that after she died she would be at my side always and athat I would not have the stolen few minutes that we had together. I was in school the day she diedl, One of my Aunts came to tell me, They called me into the hallway and told me she had died. I'm sorry that I got off my point, the whole experience is still very painful to me, I am 67 and I'm sitting here crying as I type this to you. Just say a prayer and then tell them that you want to tell them about your illness but make sure you tell them they did not do anything to cause you to get sick and that you plan on living past when yoiu will be a great grandmother. Then ask if they have any questions. In fact you might start out by asking if they had noticed that you were not feeling you best lately and wanted to know if they had any questions. Just remember the old joke about the child who went to his mother and asked "Where did I come from?" Mom then began the birds and the bees discussion, her son listened and then said I asked were did I come from Chicago or New York? .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Sorry that you are part of our little group, but welcome. Noone deserves Neurosarcoidosis. I have some experience with talking to my kids and I will share it with you. I was sick for 7 years before i was diagnosed and i know it was very scarry for my kids. I would have seizures, pain in my head and days when i could not get up. I was also very active and did all of the running with the kids. The first thing I told them was i would not lye to them. If i was really sick i wouldn't pretend that I wasn't but if i was just having a ruff day i would tell them that too. So that they never had to wonder if i was really sick and not telling them. My kids were really afraid that i was going to dye and i promised them that i would do every thing that i could to be as well as i could be. I didn't overwhelm them with detailes just answered every thing that i could as honestly as i could. If I didn't know i told them i would talk to the Dr and let them know. You could also take them to the Dr's office and let them ask the Dr questions. Most Dr's will do that. Hope some of this helps. Huggs and best to you, visit this group often you will find many nice, helpful and loving people here. Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Sorry that you are part of our little group, but welcome. Noone deserves Neurosarcoidosis. I have some experience with talking to my kids and I will share it with you. I was sick for 7 years before i was diagnosed and i know it was very scarry for my kids. I would have seizures, pain in my head and days when i could not get up. I was also very active and did all of the running with the kids. The first thing I told them was i would not lye to them. If i was really sick i wouldn't pretend that I wasn't but if i was just having a ruff day i would tell them that too. So that they never had to wonder if i was really sick and not telling them. My kids were really afraid that i was going to dye and i promised them that i would do every thing that i could to be as well as i could be. I didn't overwhelm them with detailes just answered every thing that i could as honestly as i could. If I didn't know i told them i would talk to the Dr and let them know. You could also take them to the Dr's office and let them ask the Dr questions. Most Dr's will do that. Hope some of this helps. Huggs and best to you, visit this group often you will find many nice, helpful and loving people here. Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center. Quote Link to comment Share on other sites More sharing options...
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