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The Elephant in the Room
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<blockquote data-quote="BusynMember" data-source="post: 583884" data-attributes="member: 1550"><p>I can speak a little bit from experience here. Although I did not have a sick child, I had a sick husband. At age 27, right after our marriage we found out he had a very rare but hereditary condition that his father had died from at 46. Until then we had not even known his father's condition had been hereditary or it's name. I was a new bride and devestated and waited while he had both of his adrenal glands and his thyroid removed. The adrenal glands had huge tumors on both of them, although they were benign. The thyroid had slow growing cancer, but when they did tests to see if the cancer was completely gone, he tested as though it were still there somewhere...too small to see but waiting to come back. He had to take serious medication and still does. You can't function without adrenal glands or a t hyroid. He has other marks of this syndrome as well...pigeon lungs, an enlarged heart, you name it. He was a very verbally abusive man. I never ever spoke back to him because he was sick. He would often bring up he won't live a normal life span and I felt that because he was sick, I had to be nice to him, no matter how horrible he was to me or our children. It pretty much beat up my soul, if you know what I mean. I had severe mental health issues of my own, and the constant belittling and withholding of money and absolute control he held over me just made me even worse. But I still wouldn't fight his word.</p><p></p><p>One day I was so beaten up that I went for therapy to try to deal with difficult child husband. It was a group therapy situation and I told everyone how he talked to me, belittled me, refused to give me a dime, made me stay at home all the time, but that I had to be nice to him because he was sick. I immeditally got pelted with feedback from the other women. In a nutshell, as one of them said plainly, "I don't care if he's going to die tomorrow. He has no right to treat you that way and you shouldn't take it." It shocked me t hat anyone would think that I should actually stand up to this man who was so sickly (if you saw him...well, he looked sickly too. His disorder made it impossible for him to gain weight and he looked like the wind could blow him away). Every time I looked at him, I saw death an d would feel terrible and give in. I was so upset by what these women told me, which I felt had to be wrong, that I left in tears and never returned. Yet they were right and I learned that as time went on. Nobody, even if they are that ill, has a right to treat those who love him and want to make his days wonderful, like crapola. Now I do understand that there is a big difference between the bond between a husband/wife and a child. And I don't pretend it would have been just as easy for me to suddenly see the light if this had been one of my children, but the idea is the same. by the way, fate is strange. My ex is now 66 and he still tests positive for cancer cells. He still looks sickly. But he is alive and a lot of people die before 66. Not saying this is your son's case at all, just that fate is very strange. However, ex took very good care of himself. Anyhow, that's going off topic.</p><p></p><p>You would gladly make those wonderful memories with your son. I'm sure the entire family would love to give him a fabulous life and spend time with him and make the quality of his life great because they love him. There is nothing you can do if he won't accept that love and is destructive to those who have helped him and want to keep helping him. You can't just let him destroy everyone else's life and you know that because you have acted on it. Maybe you should keep a journal making sure you put down all your loving attempts to keep him in your life and how he spurned them all so that if something happens later, you can go back and read and be comforted at how hard you tried to give him the kind of life he could have had. Also, be sure to write down what he did that, if allowed, would have destroyed the rest of your family so that you remind yourself that you did the best you could. This child has had the very best from your heart and your pocket book and still gets excellent medical care that he is throwing out the window when he uses recreational drugs, but it's him doing this...not you. Are you in therapy? If so, keep going. It really helped me detach from my ex, who I felt tremendous guilt over. I needed constant reassurance that I wasn't being a biotch to this sick man. In fact, this sick man was taking advantage of and being horrible to me. </p><p></p><p>I don't know if this helped at all, but I thought I'd share. My ex had a form of the Elephant Man's disease only his tumors formed on the inside, not the outside. It is called multiple endocrine neoplasia type 2.</p></blockquote><p></p>
[QUOTE="BusynMember, post: 583884, member: 1550"] I can speak a little bit from experience here. Although I did not have a sick child, I had a sick husband. At age 27, right after our marriage we found out he had a very rare but hereditary condition that his father had died from at 46. Until then we had not even known his father's condition had been hereditary or it's name. I was a new bride and devestated and waited while he had both of his adrenal glands and his thyroid removed. The adrenal glands had huge tumors on both of them, although they were benign. The thyroid had slow growing cancer, but when they did tests to see if the cancer was completely gone, he tested as though it were still there somewhere...too small to see but waiting to come back. He had to take serious medication and still does. You can't function without adrenal glands or a t hyroid. He has other marks of this syndrome as well...pigeon lungs, an enlarged heart, you name it. He was a very verbally abusive man. I never ever spoke back to him because he was sick. He would often bring up he won't live a normal life span and I felt that because he was sick, I had to be nice to him, no matter how horrible he was to me or our children. It pretty much beat up my soul, if you know what I mean. I had severe mental health issues of my own, and the constant belittling and withholding of money and absolute control he held over me just made me even worse. But I still wouldn't fight his word. One day I was so beaten up that I went for therapy to try to deal with difficult child husband. It was a group therapy situation and I told everyone how he talked to me, belittled me, refused to give me a dime, made me stay at home all the time, but that I had to be nice to him because he was sick. I immeditally got pelted with feedback from the other women. In a nutshell, as one of them said plainly, "I don't care if he's going to die tomorrow. He has no right to treat you that way and you shouldn't take it." It shocked me t hat anyone would think that I should actually stand up to this man who was so sickly (if you saw him...well, he looked sickly too. His disorder made it impossible for him to gain weight and he looked like the wind could blow him away). Every time I looked at him, I saw death an d would feel terrible and give in. I was so upset by what these women told me, which I felt had to be wrong, that I left in tears and never returned. Yet they were right and I learned that as time went on. Nobody, even if they are that ill, has a right to treat those who love him and want to make his days wonderful, like crapola. Now I do understand that there is a big difference between the bond between a husband/wife and a child. And I don't pretend it would have been just as easy for me to suddenly see the light if this had been one of my children, but the idea is the same. by the way, fate is strange. My ex is now 66 and he still tests positive for cancer cells. He still looks sickly. But he is alive and a lot of people die before 66. Not saying this is your son's case at all, just that fate is very strange. However, ex took very good care of himself. Anyhow, that's going off topic. You would gladly make those wonderful memories with your son. I'm sure the entire family would love to give him a fabulous life and spend time with him and make the quality of his life great because they love him. There is nothing you can do if he won't accept that love and is destructive to those who have helped him and want to keep helping him. You can't just let him destroy everyone else's life and you know that because you have acted on it. Maybe you should keep a journal making sure you put down all your loving attempts to keep him in your life and how he spurned them all so that if something happens later, you can go back and read and be comforted at how hard you tried to give him the kind of life he could have had. Also, be sure to write down what he did that, if allowed, would have destroyed the rest of your family so that you remind yourself that you did the best you could. This child has had the very best from your heart and your pocket book and still gets excellent medical care that he is throwing out the window when he uses recreational drugs, but it's him doing this...not you. Are you in therapy? If so, keep going. It really helped me detach from my ex, who I felt tremendous guilt over. I needed constant reassurance that I wasn't being a biotch to this sick man. In fact, this sick man was taking advantage of and being horrible to me. I don't know if this helped at all, but I thought I'd share. My ex had a form of the Elephant Man's disease only his tumors formed on the inside, not the outside. It is called multiple endocrine neoplasia type 2. [/QUOTE]
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