Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 you knwo soemthign on ur feeling liek this kinda fel liek it right now and im a charger oen of my godo firends i knew from hosptial just died to ccf after a lung transpalnt about a year and a bit ago and there are times when i hear of these things that i dont feel so positive about life im not telling you this to make you feel sad but i want you to knwo that ;our not alone and that when soemoen special leaves its very sad and i know youd be fearing that for alissa i know thats wat e;very mum and dad frear for all of us and i know that we are all here for each other so i just wanted to tell you we are all herre for you love you hugs ellen in aus > > Dear Flo, > Twice I've read " and Elly 3 and horrible right now " ...and just have to > giggle both times. > I know, not soooooo funny for you. > But I would just love to know one or two little items of what that bunny > is > up to. It's been a long time since any " little angels " were up to stuff > in > my house. > All we get is poopy ol' adult stuff now-hardly any fun at all! > I haven't had a really juicy laugh since and the potty and the > fish > tank. > (Good thing those things were properly separated.) > If U can find a minute-please feel sorry for me and pass a tidbit on.. > Thx. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Ellen, You are an amazing person,I've been reading your emails for a week now and admire the comments,please send me a picture to my personal adress,you are such a motivation for the group bcoetzer@... Re: Advice you knwo soemthign on ur feeling liek this kinda fel liek it right now and im a charger oen of my godo firends i knew from hosptial just died to ccf after a lung transpalnt about a year and a bit ago and there are times when i hear of these things that i dont feel so positive about life im not telling you this to make you feel sad but i want you to knwo that ;our not alone and that when soemoen special leaves its very sad and i know youd be fearing that for alissa i know thats wat e;very mum and dad frear for all of us and i know that we are all here for each other so i just wanted to tell you we are all herre for you love you hugs ellen in aus > > Dear Flo, > Twice I've read " and Elly 3 and horrible right now " ...and just have to > giggle both times. > I know, not soooooo funny for you. > But I would just love to know one or two little items of what that bunny > is > up to. It's been a long time since any " little angels " were up to stuff > in > my house. > All we get is poopy ol' adult stuff now-hardly any fun at all! > I haven't had a really juicy laugh since and the potty and the > fish > tank. > (Good thing those things were properly separated.) > If U can find a minute-please feel sorry for me and pass a tidbit on.. > Thx. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Ellen, You are an amazing person,I've been reading your emails for a week now and admire the comments,please send me a picture to my personal adress,you are such a motivation for the group bcoetzer@... Re: Advice you knwo soemthign on ur feeling liek this kinda fel liek it right now and im a charger oen of my godo firends i knew from hosptial just died to ccf after a lung transpalnt about a year and a bit ago and there are times when i hear of these things that i dont feel so positive about life im not telling you this to make you feel sad but i want you to knwo that ;our not alone and that when soemoen special leaves its very sad and i know youd be fearing that for alissa i know thats wat e;very mum and dad frear for all of us and i know that we are all here for each other so i just wanted to tell you we are all herre for you love you hugs ellen in aus > > Dear Flo, > Twice I've read " and Elly 3 and horrible right now " ...and just have to > giggle both times. > I know, not soooooo funny for you. > But I would just love to know one or two little items of what that bunny > is > up to. It's been a long time since any " little angels " were up to stuff > in > my house. > All we get is poopy ol' adult stuff now-hardly any fun at all! > I haven't had a really juicy laugh since and the potty and the > fish > tank. > (Good thing those things were properly separated.) > If U can find a minute-please feel sorry for me and pass a tidbit on.. > Thx. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 All I can tell you is that things to do get better, and even 6 months from now you'll be passed a certain obstacle and on to the next. EAch time you overcome something, it makes you stronger, more confident, and able to deal with the next thing. One thing that helps me is that I get out of the house by myself once a week. I go the bookstore, get a starbucks, and sometimes all I do is read through books on kids with disabilities. Other times I meet a friend for a beer and a burger. It is the only thing that keeps me sane. You need to take time for yourself so that you can come back home feeling that you've had a release. I hope you are able to do that with the help you have! > > Ok everyone, i need a boost. I'm feeling sooooooo scared, and I feel > like I'm gonna lose it. The funny thing is that nothing triggered > these feelings. Usually a trip to emerg or a bad day at the > neurologist does the trick but I'm just sooo tired. Tired. Tired of > all of it. I have sooo much help between the ped, ot, nursing, early > intervention... you name it I got it but just want everyone to go > away! But I can't.... i need the help. I just want to cry. I just > want someone to wake me up from this dream. I usually pretty tough > but I just feel like I'm crumbling. SOrry everyone, I try to stay > positive for everyone but I'm tonight I'm letting it all out. I love > me little ALissa, I just wish I could do this all on my own. All > these people are taking over my house. God do I ever envy all you > parents out there that seem like you got a grip on all of this. Your > all soo strong. I feel soo bad for not being that strong for > Allissa. God delt me these cards for a reason. Some days I feel soo > blessed and then other days I'm lost in the dark. I think these > feelings have arised because up until now Ive been told Allissa will > have poor vision. Now I'm starting to look into her hearing and I > don't think it's gonna be a good outcome. Deaf and blind. I don't > know how to handle this anymore. Please help. You guys always know > just what to say. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 All I can tell you is that things to do get better, and even 6 months from now you'll be passed a certain obstacle and on to the next. EAch time you overcome something, it makes you stronger, more confident, and able to deal with the next thing. One thing that helps me is that I get out of the house by myself once a week. I go the bookstore, get a starbucks, and sometimes all I do is read through books on kids with disabilities. Other times I meet a friend for a beer and a burger. It is the only thing that keeps me sane. You need to take time for yourself so that you can come back home feeling that you've had a release. I hope you are able to do that with the help you have! > > Ok everyone, i need a boost. I'm feeling sooooooo scared, and I feel > like I'm gonna lose it. The funny thing is that nothing triggered > these feelings. Usually a trip to emerg or a bad day at the > neurologist does the trick but I'm just sooo tired. Tired. Tired of > all of it. I have sooo much help between the ped, ot, nursing, early > intervention... you name it I got it but just want everyone to go > away! But I can't.... i need the help. I just want to cry. I just > want someone to wake me up from this dream. I usually pretty tough > but I just feel like I'm crumbling. SOrry everyone, I try to stay > positive for everyone but I'm tonight I'm letting it all out. I love > me little ALissa, I just wish I could do this all on my own. All > these people are taking over my house. God do I ever envy all you > parents out there that seem like you got a grip on all of this. Your > all soo strong. I feel soo bad for not being that strong for > Allissa. God delt me these cards for a reason. Some days I feel soo > blessed and then other days I'm lost in the dark. I think these > feelings have arised because up until now Ive been told Allissa will > have poor vision. Now I'm starting to look into her hearing and I > don't think it's gonna be a good outcome. Deaf and blind. I don't > know how to handle this anymore. Please help. You guys always know > just what to say. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 your right ts good i was just outlinign the facts that we all have thesxe feelings ) xxxx i mean no one is perfect r they lol > > All I can tell you is that things to do get better, and even 6 months > from now you'll be passed a certain obstacle and on to the next. EAch > time you overcome something, it makes you stronger, more confident, > and able to deal with the next thing. One thing that helps me is that > I get out of the house by myself once a week. I go the bookstore, get > a starbucks, and sometimes all I do is read through books on kids with > disabilities. Other times I meet a friend for a beer and a burger. It > is the only thing that keeps me sane. You need to take time for > yourself so that you can come back home feeling that you've had a > release. I hope you are able to do that with the help you have! > > > > > > > > Ok everyone, i need a boost. I'm feeling sooooooo scared, and I feel > > like I'm gonna lose it. The funny thing is that nothing triggered > > these feelings. Usually a trip to emerg or a bad day at the > > neurologist does the trick but I'm just sooo tired. Tired. Tired of > > all of it. I have sooo much help between the ped, ot, nursing, early > > intervention... you name it I got it but just want everyone to go > > away! But I can't.... i need the help. I just want to cry. I just > > want someone to wake me up from this dream. I usually pretty tough > > but I just feel like I'm crumbling. SOrry everyone, I try to stay > > positive for everyone but I'm tonight I'm letting it all out. I love > > me little ALissa, I just wish I could do this all on my own. All > > these people are taking over my house. God do I ever envy all you > > parents out there that seem like you got a grip on all of this. Your > > all soo strong. I feel soo bad for not being that strong for > > Allissa. God delt me these cards for a reason. Some days I feel soo > > blessed and then other days I'm lost in the dark. I think these > > feelings have arised because up until now Ive been told Allissa will > > have poor vision. Now I'm starting to look into her hearing and I > > don't think it's gonna be a good outcome. Deaf and blind. I don't > > know how to handle this anymore. Please help. You guys always know > > just what to say. > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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