Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi TJ Thanks especially for your words of wisdom. I do know that you know exactly what I feel like.You can send Kenny's story anytime you wish. I just can't get any sadder than I feel right now. As I stated in an earlier post my MRI results are in and they are really no further ahead as they were pretty much the same as the CT. I will be going to see a neurologist so maybe we can then get some answers. We are also seeing the genetecist on Monday the 12th to go over results from Seattle. I also had my older son to the clinic today as he was skiing in the mountains yesterday with his Dad and didn't use sunscreen so he has ended up with 1st & 2nd degree burns on his face so now he can't go out in the sun for a week. He is off school this week for spring break but he is generally a homebody so this shouldn't bother him.I always seem to be at the doctors office..will it ever end?? Take care Betty Betty- > > Betty- > > Please don't be so hard on yourself- I do know the exact feelings you are having as I too have felt the same. I need to send you Kenny's story ASAP....... if you feel you are able to read it........... I do not want to upset you further......... Please e-mail me and let me know........ I remembered , we had written a bit a while ago but I think due to my computer problems, we went no further? > > I am so sorry about that. I too though- lost a child, age 12....... Not sure if you remember all that- because of the pause in letters- and also because there are so many of us in the group- that sometimes------- it is difficult to remember who went with what, etc......... > > Betty- I felt the same exact way when Kenny died and I didn't even know at the time that he had VEDS nor myself ............. Yet I knew that I had had blood clots before and many problems that I remember stating, when I was told he was gone " It should have been me !!!!!!!!! Not Him!!!!!!!!!! I've lived with clots- bruises, etc, why him? It should be Me !!!!!!!!!! then the OMG, I gave this to him--------- and may even be handing it down to yet another child or worse - both of them ! ( After I found out I had VEDS ) > > > Gosh I wanna reach through this computer and hug you........... > > You have done nothing to tear your family apart............. > > We are all handed our crosses to bear in life Betty- it just so happens your son was one of the chosen few to be taken into the arms of Jesus for safe keeping , along with my son Kenny- where he will no longer suffer in pain............ > > I too wanted to die along with my boy......... sometimes I still do........... > > You will get through this,,,,, even though it seems so difficult but the most important thing you must do is not blame yourself that your son had this............... because, he , I am sure is honored to have a mother such as yourself- and he sure in heck wouldn't want you to feel at fault.............. he has been blessed.............. and so were you........... and even though in seperate places right now......... one day you will be reunited.......... and we will all understand why things went as they did......... > > Diabeties runs rapid in my family but for some reason , somewhere along the line, ( perhaps my bio dad - who I honestly never met )- I got pinned with it........... but ,,,, u know the pain I feel right now, the horrible loss of sleep- the many nights of severe pain............ knowing My Kenny had this problem not until after he passed makes me greatful that I am the one going through the tests/the pain and he did not have to live a life of suffering............ every Mother wants to take her childs suffering away............. perhaps this is the reason you and I are still here? > > E-mail me anytime you need to talk.......... if You feel up to it, I'll send you Kenny's story......... Perhaps together, we can lighten the path that we are left behind to tread, but realizing our babies at least are not suffering......... > > Hugs and Love- > TJ > > > 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 TJ Thanks especially for your words of wisdom. I do know that you know exactly what I feel like.You can send Kenny's story anytime you wish. I just can't get any sadder than I feel right now. As I stated in an earlier post my MRI results are in and they are really no further ahead as they were pretty much the same as the CT. I will be going to see a neurologist so maybe we can then get some answers. We are also seeing the genetecist on Monday the 12th to go over results from Seattle. I also had my older son to the clinic today as he was skiing in the mountains yesterday with his Dad and didn't use sunscreen so he has ended up with 1st & 2nd degree burns on his face so now he can't go out in the sun for a week. He is off school this week for spring break but he is generally a homebody so this shouldn't bother him.I always seem to be at the doctors office..will it ever end?? Take care Betty Betty- > > Betty- > > Please don't be so hard on yourself- I do know the exact feelings you are having as I too have felt the same. I need to send you Kenny's story ASAP....... if you feel you are able to read it........... I do not want to upset you further......... Please e-mail me and let me know........ I remembered , we had written a bit a while ago but I think due to my computer problems, we went no further? > > I am so sorry about that. I too though- lost a child, age 12....... Not sure if you remember all that- because of the pause in letters- and also because there are so many of us in the group- that sometimes------- it is difficult to remember who went with what, etc......... > > Betty- I felt the same exact way when Kenny died and I didn't even know at the time that he had VEDS nor myself ............. Yet I knew that I had had blood clots before and many problems that I remember stating, when I was told he was gone " It should have been me !!!!!!!!! Not Him!!!!!!!!!! I've lived with clots- bruises, etc, why him? It should be Me !!!!!!!!!! then the OMG, I gave this to him--------- and may even be handing it down to yet another child or worse - both of them ! ( After I found out I had VEDS ) > > > Gosh I wanna reach through this computer and hug you........... > > You have done nothing to tear your family apart............. > > We are all handed our crosses to bear in life Betty- it just so happens your son was one of the chosen few to be taken into the arms of Jesus for safe keeping , along with my son Kenny- where he will no longer suffer in pain............ > > I too wanted to die along with my boy......... sometimes I still do........... > > You will get through this,,,,, even though it seems so difficult but the most important thing you must do is not blame yourself that your son had this............... because, he , I am sure is honored to have a mother such as yourself- and he sure in heck wouldn't want you to feel at fault.............. he has been blessed.............. and so were you........... and even though in seperate places right now......... one day you will be reunited.......... and we will all understand why things went as they did......... > > Diabeties runs rapid in my family but for some reason , somewhere along the line, ( perhaps my bio dad - who I honestly never met )- I got pinned with it........... but ,,,, u know the pain I feel right now, the horrible loss of sleep- the many nights of severe pain............ knowing My Kenny had this problem not until after he passed makes me greatful that I am the one going through the tests/the pain and he did not have to live a life of suffering............ every Mother wants to take her childs suffering away............. perhaps this is the reason you and I are still here? > > E-mail me anytime you need to talk.......... if You feel up to it, I'll send you Kenny's story......... Perhaps together, we can lighten the path that we are left behind to tread, but realizing our babies at least are not suffering......... > > Hugs and Love- > TJ > > > 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 Hugs Betty- They aren't words of wisdom- they are words from feeling the same pain you are feeling...... and the ups and downs that you are having are normal- as I had them too- mercy- I still do- off/on and he's been gone since 97...... I will send along Kenny's story then via off group e-mail shortly......If it gets to be too much- set it aside until you are ready.... Although- I do know that reading others made me realize I was not alone....... I wish you were not having all these additional appointments and worries- so that you could have a break but appears that isn't to be for now- so can only make the best of it......... whenever I have to go through or do something I don't feel like doing or even have the want to ( I just keep telling myself- it could be worse ) ...... There was another happening in my area- when my son passed - that would make any mother greatful her child did not go through what she did in her loss of her daughter..... I will include that in the e-mail...... Losing someone is never easy- no matter what the age- but we have others we have to go on for..... and one of those others is ( ourselves) Our loved one wouldn't want us suffering emotionally while they are now out of pain and happy. Two of my sons get sunburnt easily too- my x never enforced sunscreen when they were in his care- the courts did nothing about this...... they would come home bad enough to be up half the night - they were so uncomfortable- doctor gave them a cream to use.... Hopefully, the kids remember how rotten that felt so they will put lotion on even if their Dad doesn't enforce it. I will be sending the offgroup letter shortly- Many Hugs ----- TJ Hi TJ Thanks especially for your words of wisdom. I do know that you know exactly what I feel like.You can send Kenny's story anytime you wish. I just can't get any sadder than I feel right now. As I stated in an earlier post my MRI results are in and they are really no further ahead as they were pretty much the same as the CT. I will be going to see a neurologist so maybe we can then get some answers. We are also seeing the genetecist on Monday the 12th to go over results from Seattle. I also had my older son to the clinic today as he was skiing in the mountains yesterday with his Dad and didn't use sunscreen so he has ended up with 1st & 2nd degree burns on his face so now he can't go out in the sun for a week. He is off school this week for spring break but he is generally a homebody so this shouldn't bother him.I always seem to be at the doctors office..will it ever end?? Take care Betty Betty- > > Betty- > > Please don't be so hard on yourself- I do know the exact feelings you are having as I too have felt the same. I need to send you Kenny's story ASAP....... if you feel you are able to read it........... I do not want to upset you further......... Please e-mail me and let me know........ I remembered , we had written a bit a while ago but I think due to my computer problems, we went no further? > > I am so sorry about that. I too though- lost a child, age 12....... Not sure if you remember all that- because of the pause in letters- and also because there are so many of us in the group- that sometimes------- it is difficult to remember who went with what, etc......... > > Betty- I felt the same exact way when Kenny died and I didn't even know at the time that he had VEDS nor myself ............. Yet I knew that I had had blood clots before and many problems that I remember stating, when I was told he was gone " It should have been me !!!!!!!!! Not Him!!!!!!!!!! I've lived with clots- bruises, etc, why him? It should be Me !!!!!!!!!! then the OMG, I gave this to him--------- and may even be handing it down to yet another child or worse - both of them ! ( After I found out I had VEDS ) > > > Gosh I wanna reach through this computer and hug you........... > > You have done nothing to tear your family apart............. > > We are all handed our crosses to bear in life Betty- it just so happens your son was one of the chosen few to be taken into the arms of Jesus for safe keeping , along with my son Kenny- where he will no longer suffer in pain............ > > I too wanted to die along with my boy......... sometimes I still do........... > > You will get through this,,,,, even though it seems so difficult but the most important thing you must do is not blame yourself that your son had this............... because, he , I am sure is honored to have a mother such as yourself- and he sure in heck wouldn't want you to feel at fault.............. he has been blessed.............. and so were you........... and even though in seperate places right now......... one day you will be reunited.......... and we will all understand why things went as they did......... > > Diabeties runs rapid in my family but for some reason , somewhere along the line, ( perhaps my bio dad - who I honestly never met )- I got pinned with it........... but ,,,, u know the pain I feel right now, the horrible loss of sleep- the many nights of severe pain............ knowing My Kenny had this problem not until after he passed makes me greatful that I am the one going through the tests/the pain and he did not have to live a life of suffering............ every Mother wants to take her childs suffering away............. perhaps this is the reason you and I are still here? > > E-mail me anytime you need to talk.......... if You feel up to it, I'll send you Kenny's story......... Perhaps together, we can lighten the path that we are left behind to tread, but realizing our babies at least are not suffering......... > > Hugs and Love- > TJ > > > 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...
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