Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 I got a phone call early this morning from my daughter. They finally finished the mito testing on my grandaughter's heart. It came back abnormal. There were a large amount of mitochondria present. They would never have even run the tests except my daughter insisted. Now they are going to run further tests. Hopefully they will be able to figure out the type of disorder. I really don't know how I feel. I have so many emotions going on right now. I am so very very sad that Elaine had to die for me to get any answers. I am relieved to finally have this long search nearing the end. It was only yesterday that I was reading the posts and feeling discouraged that I would ever find any answers. I am afraid of what this diagnosis means. I can no longer tell myself 'well, it could be something else'. And I feel worried for my children and grandchildren. I guess you all can understand what I am feeling. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Joanne, I'm so sorry about your news. It is a double edged sword which I can identify with. I think it's very important to deal with the mourning part of this issue but also need to tell you that we are not in control of our genes and we cannot hold ourselves responsible for this. Losing your grandchild had to have been extremely difficult and in your message, I read a sense of guilt. Please see someone who can help you work thru this. It is not your fault. Please accept my offer to be available for you privately if you just need someone to talk to. I am very familar with what you are going thru. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Joanne I can relate to your feelings, both from a personal aspect and that of my mother. I know we talked about our feelings of guilt. As Alice said, we cannot control our genes. If we had had a diagnosis before conceiving children, out decisions might have been different, but we made that decision based on the knowledge we had at the time and not looking back. Let yourself grieve for you loss of your granddaughter and for the probably that you also have it. Get professional help if you are struggling. There is nothing wrong with the way you are feeling and getting help does not show a weakness on your part. You are dealing with lots of things all at once. I'm thinking of you. laurie > > Reply-To: > Date: Mon, 21 Jun 2004 16:16:13 -0000 > To: > Subject: autopsy results > > I got a phone call early this morning from my daughter. They > finally finished the mito testing on my grandaughter's heart. It > came back abnormal. There were a large amount of mitochondria > present. They would never have even run the tests except my daughter > insisted. Now they are going to run further tests. Hopefully they > will be able to figure out the type of disorder. > I really don't know how I feel. I have so many emotions going on > right now. I am so very very sad that Elaine had to die for me to > get any answers. > I am relieved to finally have this long search nearing the end. It > was only yesterday that I was reading the posts and feeling > discouraged that I would ever find any answers. > I am afraid of what this diagnosis means. I can no longer tell > myself 'well, it could be something else'. > And I feel worried for my children and grandchildren. > > I guess you all can understand what I am feeling. > > Joanne > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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