Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Betty - It's not your fault. Who gave it to you? > Hi all > Well yesterday was the second worst day of my life (the first being the death of our son 10 months ago) The results have finally come back from Seattle and definitely my son was positive for VEDS as I am, so of course that means that I had passed this terrible gene to him and it was I who have torn this family apart and it was I who ripped apart all our hope & dreams. When I heard this news I wanted to die along with my boy How can I live with myself knowing this came from me Whyu oh why did this happen??? I started to rebuild my faith after Danny died and now it shot to hell again I pray to God fro help and all I get is more grief and now something shows up on my CT of my brain which I then have to have an MRI which I'll find the results oin Thursday rightnow I hope there is something. How much more can I take?? > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Betty - It's not your fault. Who gave it to you? > Hi all > Well yesterday was the second worst day of my life (the first being the death of our son 10 months ago) The results have finally come back from Seattle and definitely my son was positive for VEDS as I am, so of course that means that I had passed this terrible gene to him and it was I who have torn this family apart and it was I who ripped apart all our hope & dreams. When I heard this news I wanted to die along with my boy How can I live with myself knowing this came from me Whyu oh why did this happen??? I started to rebuild my faith after Danny died and now it shot to hell again I pray to God fro help and all I get is more grief and now something shows up on my CT of my brain which I then have to have an MRI which I'll find the results oin Thursday rightnow I hope there is something. How much more can I take?? > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Betty - It's not your fault. Who gave it to you? > Hi all > Well yesterday was the second worst day of my life (the first being the death of our son 10 months ago) The results have finally come back from Seattle and definitely my son was positive for VEDS as I am, so of course that means that I had passed this terrible gene to him and it was I who have torn this family apart and it was I who ripped apart all our hope & dreams. When I heard this news I wanted to die along with my boy How can I live with myself knowing this came from me Whyu oh why did this happen??? I started to rebuild my faith after Danny died and now it shot to hell again I pray to God fro help and all I get is more grief and now something shows up on my CT of my brain which I then have to have an MRI which I'll find the results oin Thursday rightnow I hope there is something. How much more can I take?? > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Oh Betty, This is so sad! I don't know what to say except, please, please do not ever blame yourself for Danny's death!You didn't know you had this disease. You didn't intentially pass this onto him! We never know the cards we are dealt in this thing called life, and sometimes it is just so horrible and overwhelming and so deeply painful both physically and emotionally. Please don't hope for something bad to be on your head MRI. Please write me tomorrow and let me/ us know the results. If not can you write me off-line? ngsamuelson@... Big Hugs for you right now. bad genes > Hi all > Well yesterday was the second worst day of my life (the first being the death of our son 10 months ago) The results have finally come back from Seattle and definitely my son was positive for VEDS as I am, so of course that means that I had passed this terrible gene to him and it was I who have torn this family apart and it was I who ripped apart all our hope & dreams. When I heard this news I wanted to die along with my boy How can I live with myself knowing this came from me Whyu oh why did this happen??? I started to rebuild my faith after Danny died and now it shot to hell again I pray to God fro help and all I get is more grief and now something shows up on my CT of my brain which I then have to have an MRI which I'll find the results oin Thursday rightnow I hope there is something. How much more can I take?? > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Oh Betty, This is so sad! I don't know what to say except, please, please do not ever blame yourself for Danny's death!You didn't know you had this disease. You didn't intentially pass this onto him! We never know the cards we are dealt in this thing called life, and sometimes it is just so horrible and overwhelming and so deeply painful both physically and emotionally. Please don't hope for something bad to be on your head MRI. Please write me tomorrow and let me/ us know the results. If not can you write me off-line? ngsamuelson@... Big Hugs for you right now. bad genes > Hi all > Well yesterday was the second worst day of my life (the first being the death of our son 10 months ago) The results have finally come back from Seattle and definitely my son was positive for VEDS as I am, so of course that means that I had passed this terrible gene to him and it was I who have torn this family apart and it was I who ripped apart all our hope & dreams. When I heard this news I wanted to die along with my boy How can I live with myself knowing this came from me Whyu oh why did this happen??? I started to rebuild my faith after Danny died and now it shot to hell again I pray to God fro help and all I get is more grief and now something shows up on my CT of my brain which I then have to have an MRI which I'll find the results oin Thursday rightnow I hope there is something. How much more can I take?? > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Betty, I'm just so, so sorry that this was the result of the test! I can't imagine how you're feeling right now, and I certainly wish I could take some of your burden. I don't understand why some are blessed and others can't seem to get a break no matter what they do. If there IS anything I can do besides pray (which I certainly will!) I would be more than happy to do so. Just try to gain some strength by leaning on us whenever you can, Betty! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Betty - I know that passing a gene is difficult to accept without feeling some degree of guilt or remorse. This is only natural, but also unnecssary. You had neither knowledge of nor control over this. Grief from loss is part of your healing; guilt is not. There is no justification for you to feel guilt. Yes, he inherited the one bad gene from you. But he also inherited everything else of your genetic structure that made him what he was as a person, that made him the son you loved and miss. If you had known about the gene in advance and could have looked into the future to see the times of joy you had with him while he was with you, would you have then chosen to not have him at all? Would you have given up the joy and love to avoid the pain and loss? For most of my life I have been neither a spiritual nor a religious person in a conventional sense, but I have always believed that we are here for a purpose and a reason, and that purpose and reason are not just random quirks of fate. We might be here for lessons we need to learn or for things that we can teach someone else. For some, it might take a century. For others, the time will pass all too quickly. But whatever the amount of time, it is for some higher purpose, even if we can't always tell what that purpose is. I know this is no consolation, but try to put your thoughts toward the good memories; try to dwell on the positive and happy times. Remember the joy, the love, and the happiness. And if you can hold these thoughts in your mind, they will help replace the grief and pain. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 It was good to chat with you this afternoon Betty, please know that you and your family are in my prayers and thoughts! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Dear Betty, Again I find myself 'ditto'ing Mike. You did not know. You just can't beat yourself up about something you had absolutely no control over at the time. I realize that is easier said than done but maybe hearing it from others will help you move past this. Hugs, B. HEDS, New Jersey, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Betty -- I am so sorry that your Danny did have VEDS, but please do not blame yourself. Genes are something we have no control over - they are passed from generation to generation. And tho I know it seems horribly unjust and unfair, we have to deal with the ones we are born with. We all must live our lives (for however long) as well as we can. I am sure that Danny was a wonderful child and that he loved you deeply and would not want to see you suffer from guilt nor have you blame yourself. You have NOT torn your family apart nor ripped apart all your hopes and dreams -- it is a sometimes freakish thing called inheritance - and please remember you also inherited this and I'm sure you would not want that person to feel blame and guilt. Try to keep in mind all the wonderful, beautiful times you had with Danny - that is the true joy in life --------- to love and to be loved. Betty, I for one hope that your MRI comes back and shows that you are fine - please hang in there and if you need to talk, I'm here (as well as the whole group!!). Love, Patti bad genes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Betty -- I am so sorry that your Danny did have VEDS, but please do not blame yourself. Genes are something we have no control over - they are passed from generation to generation. And tho I know it seems horribly unjust and unfair, we have to deal with the ones we are born with. We all must live our lives (for however long) as well as we can. I am sure that Danny was a wonderful child and that he loved you deeply and would not want to see you suffer from guilt nor have you blame yourself. You have NOT torn your family apart nor ripped apart all your hopes and dreams -- it is a sometimes freakish thing called inheritance - and please remember you also inherited this and I'm sure you would not want that person to feel blame and guilt. Try to keep in mind all the wonderful, beautiful times you had with Danny - that is the true joy in life --------- to love and to be loved. Betty, I for one hope that your MRI comes back and shows that you are fine - please hang in there and if you need to talk, I'm here (as well as the whole group!!). Love, Patti bad genes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Betty -- I am so sorry that your Danny did have VEDS, but please do not blame yourself. Genes are something we have no control over - they are passed from generation to generation. And tho I know it seems horribly unjust and unfair, we have to deal with the ones we are born with. We all must live our lives (for however long) as well as we can. I am sure that Danny was a wonderful child and that he loved you deeply and would not want to see you suffer from guilt nor have you blame yourself. You have NOT torn your family apart nor ripped apart all your hopes and dreams -- it is a sometimes freakish thing called inheritance - and please remember you also inherited this and I'm sure you would not want that person to feel blame and guilt. Try to keep in mind all the wonderful, beautiful times you had with Danny - that is the true joy in life --------- to love and to be loved. Betty, I for one hope that your MRI comes back and shows that you are fine - please hang in there and if you need to talk, I'm here (as well as the whole group!!). Love, Patti bad genes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi Betty, My heart just aches along with you. First to lose Danny but then to feel responsible is just so much to bear. I think all of us with eds kids have gone through similar times that we feel we are to blame and are responsible for our kids illnesses, heartache, pain and even death. As so many have said, we just can't hold ourselves responsible. I know that is easier said than actually done. It all just hurts so much. You asked how much more you can take. Someone once told me that God only gives us as much as we can handle. That same person said that God was reallly pushing her when her young husband and father of her three kids lay dying. It has really stuck with me. I really wish I could think of something to help you with your renewed grief. Please try to keep your faith even though it is hard. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi Betty, My heart just aches along with you. First to lose Danny but then to feel responsible is just so much to bear. I think all of us with eds kids have gone through similar times that we feel we are to blame and are responsible for our kids illnesses, heartache, pain and even death. As so many have said, we just can't hold ourselves responsible. I know that is easier said than actually done. It all just hurts so much. You asked how much more you can take. Someone once told me that God only gives us as much as we can handle. That same person said that God was reallly pushing her when her young husband and father of her three kids lay dying. It has really stuck with me. I really wish I could think of something to help you with your renewed grief. Please try to keep your faith even though it is hard. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi Betty, My heart just aches along with you. First to lose Danny but then to feel responsible is just so much to bear. I think all of us with eds kids have gone through similar times that we feel we are to blame and are responsible for our kids illnesses, heartache, pain and even death. As so many have said, we just can't hold ourselves responsible. I know that is easier said than actually done. It all just hurts so much. You asked how much more you can take. Someone once told me that God only gives us as much as we can handle. That same person said that God was reallly pushing her when her young husband and father of her three kids lay dying. It has really stuck with me. I really wish I could think of something to help you with your renewed grief. Please try to keep your faith even though it is hard. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Here, Here Genetics and inheritance is nothing you can control, you did NOT give him VEDS on purpose, I mean he could have ended up with VEDS even if you or your husband didn't have it, he could have been a spontaneous mutation. PLEASE don't blame yourself for something you had NO control over at all, you didn't know you had passed on VEDS (did you even know YOU had it??? and even if so there was a 1 in 2 (or some such)chance that he would NOT have it. You had NO choice in this and in who got what genes. I know this probably doesn't help but it is NOT your fault and the grief you are feeling is NATURAL but the guilt is something you will have to get past as it is NOT your fault, you did NOT give him VEDS on purpose. I am thinking of you and hopin gthat your MRI comes out fine. PLEASE let us know the results. And think of all of the good times you had with your boy, he was a truly beautiful child and the time you had together was very very special. Sharon > Betty -- > > I am so sorry that your Danny did have VEDS, but please do not blame yourself. Genes are something we have no control over - they are passed from generation to generation. And tho I know it seems horribly unjust and unfair, we have to deal with the ones we are born with. We all must live our lives (for however long) as well as we can. I am sure that Danny was a wonderful child and that he loved you deeply and would not want to see you suffer from guilt nor have you blame yourself. You have NOT torn your family apart nor ripped apart all your hopes and dreams -- it is a sometimes freakish thing called inheritance - and please remember you also inherited this and I'm sure you would not want that person to feel blame and guilt. > > Try to keep in mind all the wonderful, beautiful times you had with Danny - that is the true joy in life --------- to love and to be loved. > > Betty, I for one hope that your MRI comes back and shows that you are fine - please hang in there and if you need to talk, I'm here (as well as the whole group!!). > > Love, Patti > > > bad genes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Here, Here Genetics and inheritance is nothing you can control, you did NOT give him VEDS on purpose, I mean he could have ended up with VEDS even if you or your husband didn't have it, he could have been a spontaneous mutation. PLEASE don't blame yourself for something you had NO control over at all, you didn't know you had passed on VEDS (did you even know YOU had it??? and even if so there was a 1 in 2 (or some such)chance that he would NOT have it. You had NO choice in this and in who got what genes. I know this probably doesn't help but it is NOT your fault and the grief you are feeling is NATURAL but the guilt is something you will have to get past as it is NOT your fault, you did NOT give him VEDS on purpose. I am thinking of you and hopin gthat your MRI comes out fine. PLEASE let us know the results. And think of all of the good times you had with your boy, he was a truly beautiful child and the time you had together was very very special. Sharon > Betty -- > > I am so sorry that your Danny did have VEDS, but please do not blame yourself. Genes are something we have no control over - they are passed from generation to generation. And tho I know it seems horribly unjust and unfair, we have to deal with the ones we are born with. We all must live our lives (for however long) as well as we can. I am sure that Danny was a wonderful child and that he loved you deeply and would not want to see you suffer from guilt nor have you blame yourself. You have NOT torn your family apart nor ripped apart all your hopes and dreams -- it is a sometimes freakish thing called inheritance - and please remember you also inherited this and I'm sure you would not want that person to feel blame and guilt. > > Try to keep in mind all the wonderful, beautiful times you had with Danny - that is the true joy in life --------- to love and to be loved. > > Betty, I for one hope that your MRI comes back and shows that you are fine - please hang in there and if you need to talk, I'm here (as well as the whole group!!). > > Love, Patti > > > bad genes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Here, Here Genetics and inheritance is nothing you can control, you did NOT give him VEDS on purpose, I mean he could have ended up with VEDS even if you or your husband didn't have it, he could have been a spontaneous mutation. PLEASE don't blame yourself for something you had NO control over at all, you didn't know you had passed on VEDS (did you even know YOU had it??? and even if so there was a 1 in 2 (or some such)chance that he would NOT have it. You had NO choice in this and in who got what genes. I know this probably doesn't help but it is NOT your fault and the grief you are feeling is NATURAL but the guilt is something you will have to get past as it is NOT your fault, you did NOT give him VEDS on purpose. I am thinking of you and hopin gthat your MRI comes out fine. PLEASE let us know the results. And think of all of the good times you had with your boy, he was a truly beautiful child and the time you had together was very very special. Sharon > Betty -- > > I am so sorry that your Danny did have VEDS, but please do not blame yourself. Genes are something we have no control over - they are passed from generation to generation. And tho I know it seems horribly unjust and unfair, we have to deal with the ones we are born with. We all must live our lives (for however long) as well as we can. I am sure that Danny was a wonderful child and that he loved you deeply and would not want to see you suffer from guilt nor have you blame yourself. You have NOT torn your family apart nor ripped apart all your hopes and dreams -- it is a sometimes freakish thing called inheritance - and please remember you also inherited this and I'm sure you would not want that person to feel blame and guilt. > > Try to keep in mind all the wonderful, beautiful times you had with Danny - that is the true joy in life --------- to love and to be loved. > > Betty, I for one hope that your MRI comes back and shows that you are fine - please hang in there and if you need to talk, I'm here (as well as the whole group!!). > > Love, Patti > > > bad genes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Betty, Your Danny was such a handsome young man from the photo I saw. What may I ask was the MRI results, if you feel like sharing. No you were not on a pity trip! We all care about you and we all have our bad times. Thanks for sharing your feelings. It's important for all of us to do this! That's where the help and support come from. Our Group! Sincerely, S. bad genes > Hi all > Well yesterday was the second worst day of my life (the first being the death of our son 10 months ago) The results have finally come back from Seattle and definitely my son was positive for VEDS as I am, so of course that means that I had passed this terrible gene to him and it was I who have torn this family apart and it was I who ripped apart all our hope & dreams. When I heard this news I wanted to die along with my boy How can I live with myself knowing this came from me Whyu oh why did this happen??? I started to rebuild my faith after Danny died and now it shot to hell again I pray to God fro help and all I get is more grief and now something shows up on my CT of my brain which I then have to have an MRI which I'll find the results oin Thursday rightnow I hope there is something. How much more can I take?? > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi The MRI results were kind of non-specific...something about hyperintensity spots, possibly demyelination, but my GP is sending me to a neurologist just to be sure and thank you our Danny boy was indeed a handsome boy who we miss so terribly. He had a great personality as well. I hope the appointment will be soon but you never know with specialists. My doctor though said she would try & expedite matters. Thank God for her she's been great. Betty bad genes > > > > Hi all > > Well yesterday was the second worst day of my life (the first being the > death of our son 10 months ago) The results have finally come back from > Seattle and definitely my son was positive for VEDS as I am, so of course > that means that I had passed this terrible gene to him and it was I who have > torn this family apart and it was I who ripped apart all our hope & dreams. > When I heard this news I wanted to die along with my boy How can I live with > myself knowing this came from me Whyu oh why did this happen??? I started to > rebuild my faith after Danny died and now it shot to hell again I pray to > God fro help and all I get is more grief and now something shows up on my CT > of my brain which I then have to have an MRI which I'll find the results oin > Thursday rightnow I hope there is something. How much more can I take?? > > Betty > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi The MRI results were kind of non-specific...something about hyperintensity spots, possibly demyelination, but my GP is sending me to a neurologist just to be sure and thank you our Danny boy was indeed a handsome boy who we miss so terribly. He had a great personality as well. I hope the appointment will be soon but you never know with specialists. My doctor though said she would try & expedite matters. Thank God for her she's been great. Betty bad genes > > > > Hi all > > Well yesterday was the second worst day of my life (the first being the > death of our son 10 months ago) The results have finally come back from > Seattle and definitely my son was positive for VEDS as I am, so of course > that means that I had passed this terrible gene to him and it was I who have > torn this family apart and it was I who ripped apart all our hope & dreams. > When I heard this news I wanted to die along with my boy How can I live with > myself knowing this came from me Whyu oh why did this happen??? I started to > rebuild my faith after Danny died and now it shot to hell again I pray to > God fro help and all I get is more grief and now something shows up on my CT > of my brain which I then have to have an MRI which I'll find the results oin > Thursday rightnow I hope there is something. How much more can I take?? > > Betty > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi The MRI results were kind of non-specific...something about hyperintensity spots, possibly demyelination, but my GP is sending me to a neurologist just to be sure and thank you our Danny boy was indeed a handsome boy who we miss so terribly. He had a great personality as well. I hope the appointment will be soon but you never know with specialists. My doctor though said she would try & expedite matters. Thank God for her she's been great. Betty bad genes > > > > Hi all > > Well yesterday was the second worst day of my life (the first being the > death of our son 10 months ago) The results have finally come back from > Seattle and definitely my son was positive for VEDS as I am, so of course > that means that I had passed this terrible gene to him and it was I who have > torn this family apart and it was I who ripped apart all our hope & dreams. > When I heard this news I wanted to die along with my boy How can I live with > myself knowing this came from me Whyu oh why did this happen??? I started to > rebuild my faith after Danny died and now it shot to hell again I pray to > God fro help and all I get is more grief and now something shows up on my CT > of my brain which I then have to have an MRI which I'll find the results oin > Thursday rightnow I hope there is something. How much more can I take?? > > Betty > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Betty, I am sorry to hear this. I will pray for you. Caro Quote Link to comment Share on other sites More sharing options...
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