Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 In a message dated 3/3/04 7:14:44 PM Eastern Standard Time, kdavis@... writes: << It's a bold venture, >> Yes, but great that you have the guts to do this......many would not venture down this road. But I think it will be beneficial for all to see the choices that others make and the choices they have. I think it is important that an individual have all the facts, opinions of others, and realize that their choice should be right for them. To be honest, I have grieved a lot over the fact that I never had this choice and unknowingly passed this on to my children. I love my children and am so thankful I have them, but it is awful to see your children suffer. Both of my children have issues already, which is very scary for me. I am 38 and in quite a situation due to VEDS. I never had any issues when I was a youngster outside of severe bruising. I am left to wonder how my children will fare, not only with VEDS, but the fact that they may lose their mother. The fact that I might not be here for them if and when they suffer severe or painful complications. The fact that they could come home from school and find their mother on the floor. Anyone having children needs to consider all the issues not just a few. Someone who is not a parent cannot possibly entertain all the issues and having others tell their story helps EDSers to see the whole picture. Thanks Barb and others on staff of EDS Today! Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 SUe I do agree that everyone should have a choice and you're right getting all the facts is KEY! Because I have lost a child to this, I am torn in how I feel. Yes I have tremendous sense of guilt over the fact that i like you unknowingly passed this to him but on the other hand I had 14 beautiful years with him that I wouldn't trade for the world. He gave alot to everyone who knew him. Yes I am scared of the fact that I may not be around even though to date have had no serious medical issues but having my children was without a doubt the highlight of my life and I am so glad I had the experience. I certainly did not have enough time with my younger son and tryuly I couldn't say right now that if I had known before hand would it have changed my mind to have or not have kids?? ALl I have learned is that you have to take what hand you're dealt. It has been a huge struggle but we are getting by just the same. I am starting to ramble sorry but I have a bad cold and my head is a little fuzzy at the moment. Take care Betty EDS Today > In a message dated 3/3/04 7:14:44 PM Eastern Standard Time, > kdavis@... writes: > > << It's a bold venture, >> > > Yes, but great that you have the guts to do this......many would not venture > down this road. But I think it will be beneficial for all to see the choices > that others make and the choices they have. I think it is important that an > individual have all the facts, opinions of others, and realize that their > choice should be right for them. > > To be honest, I have grieved a lot over the fact that I never had this choice > and unknowingly passed this on to my children. I love my children and am so > thankful I have them, but it is awful to see your children suffer. Both of my > children have issues already, which is very scary for me. I am 38 and in > quite a situation due to VEDS. I never had any issues when I was a youngster > outside of severe bruising. I am left to wonder how my children will fare, not > only with VEDS, but the fact that they may lose their mother. The fact that I > might not be here for them if and when they suffer severe or painful > complications. The fact that they could come home from school and find their mother on > the floor. Anyone having children needs to consider all the issues not just > a few. Someone who is not a parent cannot possibly entertain all the issues > and having others tell their story helps EDSers to see the whole picture. > > Thanks Barb and others on staff of EDS Today! > > Hugs, > Sue > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Good stuff for others to consider, Sue. I hope the article helps your Sis too! :-) Love Lana EDS Today In a message dated 3/3/04 7:14:44 PM Eastern Standard Time, kdavis@... writes: << It's a bold venture, >> Yes, but great that you have the guts to do this......many would not venture down this road. But I think it will be beneficial for all to see the choices that others make and the choices they have. I think it is important that an individual have all the facts, opinions of others, and realize that their choice should be right for them. To be honest, I have grieved a lot over the fact that I never had this choice and unknowingly passed this on to my children. I love my children and am so thankful I have them, but it is awful to see your children suffer. Both of my children have issues already, which is very scary for me. I am 38 and in quite a situation due to VEDS. I never had any issues when I was a youngster outside of severe bruising. I am left to wonder how my children will fare, not only with VEDS, but the fact that they may lose their mother. The fact that I might not be here for them if and when they suffer severe or painful complications. The fact that they could come home from school and find their mother on the floor. Anyone having children needs to consider all the issues not just a few. Someone who is not a parent cannot possibly entertain all the issues and having others tell their story helps EDSers to see the whole picture. Thanks Barb and others on staff of EDS Today! Hugs, Sue To learn more about EDS, visit our website: http://www.ceda.ca _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 Amen- totally agree Sue- after losing my 12 yr old,,,, even at that time- without a diagnosis,,,, I felt that it should have been me- not him as I had lived many more years with horrible bruising - hospital stays etc....... then to hear he passed from an aneurysm on kidney just blew my mind......... I felt I had passed down something ....... and now that I've been diagnosed,,, I feel that way even more so........ I am so greatful to have the boys- yet I wonder deep down - had I known prior to- would I have not had any , just to avoid the risk of them getting VEDS as well. My 16 yr old does worry.......... if I take a nap and am asleep for more than 2 hrs , he will be checking on me....... that is so sweet, yet at the same time........ I keep thinking, wow what a scarey thing for a sixteen yr old to have to be worried about...... Hugs All Around- soft ones- so they don't leave bruises........ TJ EDS Today In a message dated 3/3/04 7:14:44 PM Eastern Standard Time, kdavis@... writes: << It's a bold venture, >> Yes, but great that you have the guts to do this......many would not venture down this road. But I think it will be beneficial for all to see the choices that others make and the choices they have. I think it is important that an individual have all the facts, opinions of others, and realize that their choice should be right for them. To be honest, I have grieved a lot over the fact that I never had this choice and unknowingly passed this on to my children. I love my children and am so thankful I have them, but it is awful to see your children suffer. Both of my children have issues already, which is very scary for me. I am 38 and in quite a situation due to VEDS. I never had any issues when I was a youngster outside of severe bruising. I am left to wonder how my children will fare, not only with VEDS, but the fact that they may lose their mother. The fact that I might not be here for them if and when they suffer severe or painful complications. The fact that they could come home from school and find their mother on the floor. Anyone having children needs to consider all the issues not just a few. Someone who is not a parent cannot possibly entertain all the issues and having others tell their story helps EDSers to see the whole picture. Thanks Barb and others on staff of EDS Today! Hugs, Sue To learn more about EDS, visit our website: http://www.ceda.ca ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 Amen- totally agree Sue- after losing my 12 yr old,,,, even at that time- without a diagnosis,,,, I felt that it should have been me- not him as I had lived many more years with horrible bruising - hospital stays etc....... then to hear he passed from an aneurysm on kidney just blew my mind......... I felt I had passed down something ....... and now that I've been diagnosed,,, I feel that way even more so........ I am so greatful to have the boys- yet I wonder deep down - had I known prior to- would I have not had any , just to avoid the risk of them getting VEDS as well. My 16 yr old does worry.......... if I take a nap and am asleep for more than 2 hrs , he will be checking on me....... that is so sweet, yet at the same time........ I keep thinking, wow what a scarey thing for a sixteen yr old to have to be worried about...... Hugs All Around- soft ones- so they don't leave bruises........ TJ EDS Today In a message dated 3/3/04 7:14:44 PM Eastern Standard Time, kdavis@... writes: << It's a bold venture, >> Yes, but great that you have the guts to do this......many would not venture down this road. But I think it will be beneficial for all to see the choices that others make and the choices they have. I think it is important that an individual have all the facts, opinions of others, and realize that their choice should be right for them. To be honest, I have grieved a lot over the fact that I never had this choice and unknowingly passed this on to my children. I love my children and am so thankful I have them, but it is awful to see your children suffer. Both of my children have issues already, which is very scary for me. I am 38 and in quite a situation due to VEDS. I never had any issues when I was a youngster outside of severe bruising. I am left to wonder how my children will fare, not only with VEDS, but the fact that they may lose their mother. The fact that I might not be here for them if and when they suffer severe or painful complications. The fact that they could come home from school and find their mother on the floor. Anyone having children needs to consider all the issues not just a few. Someone who is not a parent cannot possibly entertain all the issues and having others tell their story helps EDSers to see the whole picture. Thanks Barb and others on staff of EDS Today! Hugs, Sue To learn more about EDS, visit our website: http://www.ceda.ca ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 In a message dated 3/3/04 9:36:35 PM Eastern Standard Time, tabby2@... writes: << but on the other hand I had 14 beautiful years with him that I wouldn't trade for the world. >> This is the other side of the coin and precisely what I am talking about when someone needs to have all the info. Just because an individual has EDS/VEDS does not mean their life is not worthy or meaningful. I would have choose life for myself no matter how much suffering I have gone through. So, in choosing to have children this is the other consideration. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
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