Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Lesley, You are not selfish at all. I think it's normal to feel this way. I too am feeling very sad, emotional and vulnerable at the moment. There have been too many babes loosing their fight both here and on the Heart support groups Jack is facing more open heart in the near future and it is terrifying me this time. Ignorance is bliss sometimes. ((((((Hugs)))))) Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Lesley, You are not selfish at all. I think it's normal to feel this way. I too am feeling very sad, emotional and vulnerable at the moment. There have been too many babes loosing their fight both here and on the Heart support groups Jack is facing more open heart in the near future and it is terrifying me this time. Ignorance is bliss sometimes. ((((((Hugs)))))) Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Les- Quite normal to being feeling that sledge hammer. Aubrie was never been in quite as medically fragile state as your Amelie, and still I used to feel that dread. I used to worry that every fever was the last pneumonia... I worried ... but it helped to ensure that we were proactive with her care and didn't take anything for granted. There wasn't a fever that went unattended or unexplained. If I hadn't had that fear, who knows if we'd have been so thorough. I also remember times when it wasn't so much that I applied that worry and dread to Aubrie, but that I just had a hard time going on with my daily life knowing that all around the world there were parents and children (CHARGE or otherwise) facing life-threatening frightening moments every second of every day. If I let myself think about the pain happening around the world, I wouldn't want to get out of bed! I think this is just something you have to allow yourself to get through. Somehow, your mama's brain has to figure out how to live with the knowledge that your child faces things that no parent wants their child to face. Our kids have greater odds of lots of bad things, but we can't dwell on those or we'd go nuts. There is nothing you can do to change it... except all the things you are doing to make the best medical decisions you can. So worrying yourself sick won't help. I think the Serenity Prayer comes in nicely here: Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and wisdom to know the difference. Hugs to you and all the other moms with babies in the hospital. These are scary times for you. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Les- Quite normal to being feeling that sledge hammer. Aubrie was never been in quite as medically fragile state as your Amelie, and still I used to feel that dread. I used to worry that every fever was the last pneumonia... I worried ... but it helped to ensure that we were proactive with her care and didn't take anything for granted. There wasn't a fever that went unattended or unexplained. If I hadn't had that fear, who knows if we'd have been so thorough. I also remember times when it wasn't so much that I applied that worry and dread to Aubrie, but that I just had a hard time going on with my daily life knowing that all around the world there were parents and children (CHARGE or otherwise) facing life-threatening frightening moments every second of every day. If I let myself think about the pain happening around the world, I wouldn't want to get out of bed! I think this is just something you have to allow yourself to get through. Somehow, your mama's brain has to figure out how to live with the knowledge that your child faces things that no parent wants their child to face. Our kids have greater odds of lots of bad things, but we can't dwell on those or we'd go nuts. There is nothing you can do to change it... except all the things you are doing to make the best medical decisions you can. So worrying yourself sick won't help. I think the Serenity Prayer comes in nicely here: Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and wisdom to know the difference. Hugs to you and all the other moms with babies in the hospital. These are scary times for you. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Lesley, You, Amelie, and the rest of the Chan Clan have been heavy on my mind this week, as well, with all of this very sad news. I am sure that all of this loss must be so hard for you (and the other families with little ones in precarious health). While I have no deep words of wisdom to pass on from any personal experience, know you are on my mind and in my heart. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Lesley, You, Amelie, and the rest of the Chan Clan have been heavy on my mind this week, as well, with all of this very sad news. I am sure that all of this loss must be so hard for you (and the other families with little ones in precarious health). While I have no deep words of wisdom to pass on from any personal experience, know you are on my mind and in my heart. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Lesley, You, Amelie, and the rest of the Chan Clan have been heavy on my mind this week, as well, with all of this very sad news. I am sure that all of this loss must be so hard for you (and the other families with little ones in precarious health). While I have no deep words of wisdom to pass on from any personal experience, know you are on my mind and in my heart. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Michele and Pam Comforting posts, i do feel vulnerable and a little fragile, and Darren had told me not to read on this weekend after the two little babes had gone, because I was distressed, but I could not manage to stay away, and Michele, your so right! I think this is why this listserv as sad as this weekend has been, is my saving grace,i need it more than ever, I just wish and I know I have wished this so many times......., but i wish I could fast forward Amelies life out of this danger period, although i read sometimes and dont want to face the growing up charge stuff, i want to get out of the surgical arena, i am sure the other new charge mums probably feel the same, and you have all felt it too, its just awful and sad. thanks for the words of wisdom, Les x > Lesley, > You, Amelie, and the rest of the Chan Clan have been heavy on my mind this > week, as well, with all of this very sad news. I am sure that all of this > loss must be so hard for you (and the other families with little ones in > precarious health). While I have no deep words of wisdom to pass on from > any personal experience, know you are on my mind and in my heart. > > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Michele and Pam Comforting posts, i do feel vulnerable and a little fragile, and Darren had told me not to read on this weekend after the two little babes had gone, because I was distressed, but I could not manage to stay away, and Michele, your so right! I think this is why this listserv as sad as this weekend has been, is my saving grace,i need it more than ever, I just wish and I know I have wished this so many times......., but i wish I could fast forward Amelies life out of this danger period, although i read sometimes and dont want to face the growing up charge stuff, i want to get out of the surgical arena, i am sure the other new charge mums probably feel the same, and you have all felt it too, its just awful and sad. thanks for the words of wisdom, Les x > Lesley, > You, Amelie, and the rest of the Chan Clan have been heavy on my mind this > week, as well, with all of this very sad news. I am sure that all of this > loss must be so hard for you (and the other families with little ones in > precarious health). While I have no deep words of wisdom to pass on from > any personal experience, know you are on my mind and in my heart. > > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Michele and Pam Comforting posts, i do feel vulnerable and a little fragile, and Darren had told me not to read on this weekend after the two little babes had gone, because I was distressed, but I could not manage to stay away, and Michele, your so right! I think this is why this listserv as sad as this weekend has been, is my saving grace,i need it more than ever, I just wish and I know I have wished this so many times......., but i wish I could fast forward Amelies life out of this danger period, although i read sometimes and dont want to face the growing up charge stuff, i want to get out of the surgical arena, i am sure the other new charge mums probably feel the same, and you have all felt it too, its just awful and sad. thanks for the words of wisdom, Les x > Lesley, > You, Amelie, and the rest of the Chan Clan have been heavy on my mind this > week, as well, with all of this very sad news. I am sure that all of this > loss must be so hard for you (and the other families with little ones in > precarious health). While I have no deep words of wisdom to pass on from > any personal experience, know you are on my mind and in my heart. > > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Elaine so glad its not just a 'me thing' and you and probably others are feeling the same,when Ryoto's mum talked about the CPR in ICU i felt physically sick, and guilty that amelie had been through it at xmas, and its just so unfair, As for Jack and heart surgery no words of comfort because we both know its all so worrying, and this weekend is a dreadful reminder of the facts and things do go wrong. My only comfort is that in my 12 months with my extended charge family, this has not hapened before now, and so hopefully god will be kind to our little chargers as he has taken two together, and he wont want anymore for a long time. I will keep Jack in my prayers, and hope you managed to get your direct payments sorted out, mine is still pending!! but doesnt seem important anymore!! nothing does really just Amelie X hugs back Les x > Lesley, > You are not selfish at all. I think it's normal to feel this way. I too am > feeling very sad, emotional and vulnerable at the moment. There have been > too > many babes loosing their fight both here and on the Heart support groups > > Jack is facing more open heart in the near future and it is terrifying me > this time. Ignorance is bliss sometimes. > ((((((Hugs)))))) > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Elaine so glad its not just a 'me thing' and you and probably others are feeling the same,when Ryoto's mum talked about the CPR in ICU i felt physically sick, and guilty that amelie had been through it at xmas, and its just so unfair, As for Jack and heart surgery no words of comfort because we both know its all so worrying, and this weekend is a dreadful reminder of the facts and things do go wrong. My only comfort is that in my 12 months with my extended charge family, this has not hapened before now, and so hopefully god will be kind to our little chargers as he has taken two together, and he wont want anymore for a long time. I will keep Jack in my prayers, and hope you managed to get your direct payments sorted out, mine is still pending!! but doesnt seem important anymore!! nothing does really just Amelie X hugs back Les x > Lesley, > You are not selfish at all. I think it's normal to feel this way. I too am > feeling very sad, emotional and vulnerable at the moment. There have been > too > many babes loosing their fight both here and on the Heart support groups > > Jack is facing more open heart in the near future and it is terrifying me > this time. Ignorance is bliss sometimes. > ((((((Hugs)))))) > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Elaine so glad its not just a 'me thing' and you and probably others are feeling the same,when Ryoto's mum talked about the CPR in ICU i felt physically sick, and guilty that amelie had been through it at xmas, and its just so unfair, As for Jack and heart surgery no words of comfort because we both know its all so worrying, and this weekend is a dreadful reminder of the facts and things do go wrong. My only comfort is that in my 12 months with my extended charge family, this has not hapened before now, and so hopefully god will be kind to our little chargers as he has taken two together, and he wont want anymore for a long time. I will keep Jack in my prayers, and hope you managed to get your direct payments sorted out, mine is still pending!! but doesnt seem important anymore!! nothing does really just Amelie X hugs back Les x > Lesley, > You are not selfish at all. I think it's normal to feel this way. I too am > feeling very sad, emotional and vulnerable at the moment. There have been > too > many babes loosing their fight both here and on the Heart support groups > > Jack is facing more open heart in the near future and it is terrifying me > this time. Ignorance is bliss sometimes. > ((((((Hugs)))))) > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Lesley, It is not selfish at all. I think that even under non-remarkable circumstances such as CHARGE, whenever we hear of people we know of passing away, it reminds us of our own mortality. How much more so when something as precarious as our children's health is concerned? Don't be too hard on yourself for feeling the vulnerability with all you have gone through with Amelie. I still sometimes have that horrible feeling even now is nearly 6 as there is always something lurking with our kids to make us feel nervous. And Elaine, is there a date yet for Jack's surgery? Hope it all goes well whenever the day arrives. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Lesley, It is not selfish at all. I think that even under non-remarkable circumstances such as CHARGE, whenever we hear of people we know of passing away, it reminds us of our own mortality. How much more so when something as precarious as our children's health is concerned? Don't be too hard on yourself for feeling the vulnerability with all you have gone through with Amelie. I still sometimes have that horrible feeling even now is nearly 6 as there is always something lurking with our kids to make us feel nervous. And Elaine, is there a date yet for Jack's surgery? Hope it all goes well whenever the day arrives. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Lesley, It is not selfish at all. I think that even under non-remarkable circumstances such as CHARGE, whenever we hear of people we know of passing away, it reminds us of our own mortality. How much more so when something as precarious as our children's health is concerned? Don't be too hard on yourself for feeling the vulnerability with all you have gone through with Amelie. I still sometimes have that horrible feeling even now is nearly 6 as there is always something lurking with our kids to make us feel nervous. And Elaine, is there a date yet for Jack's surgery? Hope it all goes well whenever the day arrives. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Families of Ryoto and Rebekah, I am so sorry to hear of your losses. This is such a sad time in CHARGE land. My thoughts and prayers are with you during this trying time. Your little ones will always be remembered here. , mom to Makenna (5yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 it is scary but my belief is that shes been so close befor and she hasnt gone then so shes unlikely to now well that swat i hope for:) thats what i hope for everyone in here and i hope that when one has to go that they go with out pain im not that religous but i do know pain and i know the pain the families go through to im just an ordinary person with charge hugs ellen > > It's normal. > > And it never really goes away. The intensity surely subsides but still it > kind of lives under your skin. You forget it's there but it's there just > the > same. > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Thanks to you all, all such comforting words of wisdom, and Ellen sums up the whole thing 'JUST AN ORDINARY PERSON WITH CHARGE' Ellen you make it all seem so normal and OK, Yuka theres never a post of yours i dont read and not cry, such a beautiful way of putting things, but We did have a bad night... seperate post Amelie is back in hospital!!! and so my worrying gets worse I am afraid. Les > it is scary but my belief is that shes been so close befor and she hasnt > gone then so shes unlikely to now well that swat i hope for:) thats what i > hope for everyone in here and i hope that when one has to go that they go > with out pain im not that religous but i do know pain and i know the pain > the families go through to im just an ordinary person with charge hugs > ellen > > > > > > It's normal. > > > > And it never really goes away. The intensity surely subsides but still it > > kind of lives under your skin. You forget it's there but it's there just > > the > > same. > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Thanks to you all, all such comforting words of wisdom, and Ellen sums up the whole thing 'JUST AN ORDINARY PERSON WITH CHARGE' Ellen you make it all seem so normal and OK, Yuka theres never a post of yours i dont read and not cry, such a beautiful way of putting things, but We did have a bad night... seperate post Amelie is back in hospital!!! and so my worrying gets worse I am afraid. Les > it is scary but my belief is that shes been so close befor and she hasnt > gone then so shes unlikely to now well that swat i hope for:) thats what i > hope for everyone in here and i hope that when one has to go that they go > with out pain im not that religous but i do know pain and i know the pain > the families go through to im just an ordinary person with charge hugs > ellen > > > > > > It's normal. > > > > And it never really goes away. The intensity surely subsides but still it > > kind of lives under your skin. You forget it's there but it's there just > > the > > same. > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Thanks to you all, all such comforting words of wisdom, and Ellen sums up the whole thing 'JUST AN ORDINARY PERSON WITH CHARGE' Ellen you make it all seem so normal and OK, Yuka theres never a post of yours i dont read and not cry, such a beautiful way of putting things, but We did have a bad night... seperate post Amelie is back in hospital!!! and so my worrying gets worse I am afraid. Les > it is scary but my belief is that shes been so close befor and she hasnt > gone then so shes unlikely to now well that swat i hope for:) thats what i > hope for everyone in here and i hope that when one has to go that they go > with out pain im not that religous but i do know pain and i know the pain > the families go through to im just an ordinary person with charge hugs > ellen > > > > > > It's normal. > > > > And it never really goes away. The intensity surely subsides but still it > > kind of lives under your skin. You forget it's there but it's there just > > the > > same. > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
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