Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 acutaly you say all the parents are storng i thing even they have these problmes to who wouldnt you dotn have answes drs dont give you encouragemnt or help its just day aftdr day isnt it i wouldnt be surprised if you werent the olnt one in fact i knwo you arent look at lesly and ameilie look at martha with katie look at all them soemdays in charge you dotn know what to expect sometimes its like a wait and see game hugs and kisses ellen in aus > > 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...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 acutaly you say all the parents are storng i thing even they have these problmes to who wouldnt you dotn have answes drs dont give you encouragemnt or help its just day aftdr day isnt it i wouldnt be surprised if you werent the olnt one in fact i knwo you arent look at lesly and ameilie look at martha with katie look at all them soemdays in charge you dotn know what to expect sometimes its like a wait and see game hugs and kisses ellen in aus > > 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...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 acutaly you say all the parents are storng i thing even they have these problmes to who wouldnt you dotn have answes drs dont give you encouragemnt or help its just day aftdr day isnt it i wouldnt be surprised if you werent the olnt one in fact i knwo you arent look at lesly and ameilie look at martha with katie look at all them soemdays in charge you dotn know what to expect sometimes its like a wait and see game hugs and kisses ellen in aus > > 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...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 , What you're feeling is quite normal from my experience. When Kennedy was just over a year old, I needed a BREAK! I was tired of the running, the people coming in all the time and I just wanted it all to stop. I decided to take that break - we took the summer off and we had some " normal " time. I stopped even coming to the listserv and checking messages for a month or two. I just wanted to let you know that you won't always feel like this; things do get better, I promise! Let it takes its' course and take a break if you need it. RE: Alissa - although it may not feel possible right now and things are terribly overwhelming when you get news like this (we were there when Kennedy was 2 months old, I remember it well.) - you will see that she will find many ways to compensate and she will amaze you with what she can and will accomplish. The good news (it's hard to believe, but there IS good news here) is that you know about the vision loss early and you will learn about her hearing loss early and you will have valuable time when she is early to foster and develop those senses to the best of their potential (with the help of professionals involved who will teach both you AND she). The earlier these challenges are discovered and begun to be addressed, the better for these kids. It's hard when you're dealing with the initial " shell-shock " when you get news like this and I think it's natural to think and imagine the worst. I know we did initially, so you're not alone. I probably didn't help much but I really wanted to respond to you this morning. I hope we get to see her again next month... Lots of love & hugs from down east (see you in a few weeks if you still want to meet!), Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 , What you're feeling is quite normal from my experience. When Kennedy was just over a year old, I needed a BREAK! I was tired of the running, the people coming in all the time and I just wanted it all to stop. I decided to take that break - we took the summer off and we had some " normal " time. I stopped even coming to the listserv and checking messages for a month or two. I just wanted to let you know that you won't always feel like this; things do get better, I promise! Let it takes its' course and take a break if you need it. RE: Alissa - although it may not feel possible right now and things are terribly overwhelming when you get news like this (we were there when Kennedy was 2 months old, I remember it well.) - you will see that she will find many ways to compensate and she will amaze you with what she can and will accomplish. The good news (it's hard to believe, but there IS good news here) is that you know about the vision loss early and you will learn about her hearing loss early and you will have valuable time when she is early to foster and develop those senses to the best of their potential (with the help of professionals involved who will teach both you AND she). The earlier these challenges are discovered and begun to be addressed, the better for these kids. It's hard when you're dealing with the initial " shell-shock " when you get news like this and I think it's natural to think and imagine the worst. I know we did initially, so you're not alone. I probably didn't help much but I really wanted to respond to you this morning. I hope we get to see her again next month... Lots of love & hugs from down east (see you in a few weeks if you still want to meet!), Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Hi I feel exactly the same most days, the phone never stops ringing, as does the door bell, so many people in your life, that you never asked for, and all the addmissions to hospital, and then today we came home and the phone starts up again, because everyone wants to get back to where they left off last time...its horrendous!! Bu remember one step at a time, each day as it comes, you must be doing a great job, it is so hard, and i too believe its for a reason, so keep going take deep breaths its going to get easier, look at the older charge mums on here, they still post and keep us uplifted, so it has to get better doesnt it!! love and hugs your way Lesleyx > > 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 22, 2006 Report Share Posted February 22, 2006 Hi I feel exactly the same most days, the phone never stops ringing, as does the door bell, so many people in your life, that you never asked for, and all the addmissions to hospital, and then today we came home and the phone starts up again, because everyone wants to get back to where they left off last time...its horrendous!! Bu remember one step at a time, each day as it comes, you must be doing a great job, it is so hard, and i too believe its for a reason, so keep going take deep breaths its going to get easier, look at the older charge mums on here, they still post and keep us uplifted, so it has to get better doesnt it!! love and hugs your way Lesleyx > > 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 22, 2006 Report Share Posted February 22, 2006 Hi I feel exactly the same most days, the phone never stops ringing, as does the door bell, so many people in your life, that you never asked for, and all the addmissions to hospital, and then today we came home and the phone starts up again, because everyone wants to get back to where they left off last time...its horrendous!! Bu remember one step at a time, each day as it comes, you must be doing a great job, it is so hard, and i too believe its for a reason, so keep going take deep breaths its going to get easier, look at the older charge mums on here, they still post and keep us uplifted, so it has to get better doesnt it!! love and hugs your way Lesleyx > > 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 22, 2006 Report Share Posted February 22, 2006 Dear , Go ahead and crumble. Give yourself a day off being Supermum and wallow. Cry and shout, whatever. I think we all need to let it all out every now and then. Being positive all the time is really hard work. I know exactly how you feel about the appointments, the visitors to your house, the fear of the unknown, all these diagnosis's coming at you. You are just as strong as the rest of us, but today you need a day off being strong. We try to keep one week per month appointment free. For " normal " time at home. Last year we also booked " off " Decemeber, the whole month, and told all education professionals we don't " do appointments " in December. We delayed all doctors too...and only permitted urgent medical appointments only. They soon got the idea! It was good to feel normal again for a while. Know that it will get better, Allissa will amaze you. But that's for later, I think right now have a good cry and you will feel a lot better. ((Hugs from the UK)) is (Mum to jacob, 2 UK) > > 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...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 , Please remember that every person here who seems so strong and has it all together, has also had their days of darkness, their days of crumbling, and their days of grief over some new aspect of CHARGE, a new loss in their lives, a new pain or loss for their child. It is good to be able to share when these times happen for you - there is no need to pretend those feelings don't exist. They do. The combination of vision loss and hearing loss is so big, I am sure it overwhelmed every parent here as they were coming to grips with it all and wondering what life would be like for their child and if they would be able to handle it. And then there is that awful word - deafblind - the images it conjures up - ugh! For me I pictured total darkness, total silence as if he were trapped in a box and I could not reach him in there. I knew communication was possible, because everyone knows the story of Helen Keller, but I didn't know If I would be able to do it for him. My biggest concern at the time was communication - when I thought of him as only deaf, it was simple. We began to learn sign language immediately - we would simply learn a language he could understand and all would progress " normally " . We would speak with each other, just through signed instead of spoken words. Then came the question about vision - how much could he really see. I celebrated every sign that he could see, because that would mean he was not deafblind and I could still learn to communicate with him. What a relief then to find out that deafblind does not mean total deafness plus total blindness. It simply refers to a combination of vision and hearing loss of some degree. Yes it is still the pits, but his world is not nearly so bleak as I imagined it might be in those early days of wondering what he would be able to see and hear, wondering how I would be able to know what he thought, what he needed, and so on. The good news about the ugly word deafblind is it can be a lifeline to support of a highly specialized field of people whose expertise is in working with children who do have a vision loss and a hearing loss. It is far less effective to have one person deal with the vision loss and one person deal with the hearing loss, a person who knows deafblindness understands the impact of the combined loss and can be the consultant who ties it all together when it comes to education, communication and so on. I know just what you don't want is another person in your life - I found that the people who understood deafblindness were worth their weight in gold, where some of the others as nice as they were and well meaning, I did not really see benefit to Dylan when they would come out. Each of us has to weigh our need for our own family time and life and the benefit the child is receiving from the support people. Sometimes we call a therapy break and have a bit of a vacation right at home - a week with no one coming to see us. Every state has connection to a Federally funded project focused on deafblindness, England has SENSE, and so on. When you are ready we will help you find the people in your area who can help - and remember these people are consultants, they come as you need them, not on a set schedule. Please allow yourself your feelings of loss, but always know in your heart that you will come through the darkness into the light and life is still beautiful and wonderful filled with moments of joy and awe that you simply cannot imagine right now. Kim On 2/21/06 10:24 PM, " matthew_steven_alissa " wrote: > 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...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 It is ohh so natural to have these ups and downs. This is the right place to let out your feelings. I know I get anxeity when I think too far in the future. i have had to learn to take it on day at a time. I also suffer from depression so I am on an antidepressant and for me this helps. I still have my melt down days and after some self indulgence in my feelings I can find a way through. I have to look at the silver lining in all situations or I cannot function. Positive thoughts are coming your way. a mom to 8yr CHARGEr and Quintin 5yr Seizure prone --- matthew_steven_alissa wrote: > 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 23, 2006 Report Share Posted February 23, 2006 I DO know how you feel and know, too, that many on this list are fully aware as well. I think sometimes we fail to say here that we (parents other than you) want to fade away, can't take it any longer, put it as you will. My husband and I have no help with now, and it's very, very hard. Of course we love her, but that doesn't really ease things sufficiently in a crunch. You must understand that you are not alone. It's not just that you can vent here. You can share your horrors; when they happen, you can share the joys --- and I can almost promise that those will come, too. Feel free to share irrational thoughts. I certainly do so. Deafblind. I remember when there was a move to adopt that label rather than dual sensory impairment or the like. I was appalled. As I've seen what can accomplish, my fears have ended. Do not fear labels. Sorry if I lecture. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Oh my goodness!! I knew I could count on everyone to cheer me up. I knew this was the place to crumble cause only you guys know what I'm going through! Thank you to EVERYONE for the wonderful, positive, insightful, and courageous words. I hope I can help any of you on a bad day too! Thanks everyone for being there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 " Do not fear labels " Thats fantastic advice! On this journey I'm on with Allissa there are and will be so many words of wisdom I will receive and this phrase will definitley stick! Thanks for the advice. > > I DO know how you feel and know, too, that many on this list are fully > aware as well. I think sometimes we fail to say here that we (parents > other than you) want to fade away, can't take it any longer, put it as you will. > My husband and I have no help with now, and it's very, very hard. Of > course we love her, but that doesn't really ease things sufficiently in a > crunch. You must understand that you are not alone. It's not just that you > can vent here. You can share your horrors; when they happen, you can > share the joys --- and I can almost promise that those will come, too. Feel > free to share irrational thoughts. I certainly do so. > Deafblind. I remember when there was a move to adopt that label rather > than dual sensory impairment or the like. I was appalled. As I've seen > what can accomplish, my fears have ended. Do not fear labels. > Sorry if I lecture. Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Thanks . Your words are priceless and no dought will help me on this journey. THanks :0) > > > 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 23, 2006 Report Share Posted February 23, 2006 Hi , are you kidding me! Your words are like scripture to me. You've been on this journey for eight years as opposed to me only 10 monthes and I hope one day.... if you drill it in my hard head enough LOL I'll get it... things will get better. And, I definitley will be taking some time off from this. Probably in the summertime. Thats a fantastic idea. I would have never came up with that on my own! Your words are more precious then you think! And of course, I would still love it if you guys could come up to my place. I would love for Rick to meet you guys and of course Kenedy. The saturday night of the weekend you guys are in town would be really great but we're flexible to whatever works best for you. Thanks > > , > What you're feeling is quite normal from my experience. When Kennedy was just over a year old, I needed a BREAK! I was tired of the running, the people coming in all the time and I just wanted it all to stop. I decided to take that break - we took the summer off and we had some " normal " time. I stopped even coming to the listserv and checking messages for a month or two. I just wanted to let you know that you won't always feel like this; things do get better, I promise! Let it takes its' course and take a break if you need it. > RE: Alissa - although it may not feel possible right now and things are terribly overwhelming when you get news like this (we were there when Kennedy was 2 months old, I remember it well.) - you will see that she will find many ways to compensate and she will amaze you with what she can and will accomplish. The good news (it's hard to believe, but there IS good news here) is that you know about the vision loss early and you will learn about her hearing loss early and you will have valuable time when she is early to foster and develop those senses to the best of their potential (with the help of professionals involved who will teach both you AND she). The earlier these challenges are discovered and begun to be addressed, the better for these kids. > It's hard when you're dealing with the initial " shell-shock " when you get news like this and I think it's natural to think and imagine the worst. I know we did initially, so you're not alone. > I probably didn't help much but I really wanted to respond to you this morning. I hope we get to see her again next month... > > Lots of love & hugs from down east (see you in a few weeks if you still want to meet!), > > > > Weir > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamily@... > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 You are sooooooo right Ellen! Thanks for your word of encouragment!--- In CHARGE , " ellen howe " wrote: > > acutaly you say all the parents are storng i thing even they have these > problmes to who wouldnt you dotn have answes drs dont give you encouragemnt > or help its just day aftdr day isnt it i wouldnt be surprised if you werent > the olnt one in fact i knwo you arent look at lesly and ameilie look at > martha with katie look at all them soemdays in charge you dotn know what to > expect sometimes its like a wait and see game hugs and kisses ellen in aus > > > > > > 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...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Thank you is, your words were precious! They got me through a rough day. :0) > > > > 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...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Kim, thank you for email. Its a keeper. I've printed it off I know I'll be reading it over and over again. Thanks for getting me through a rough day. Your thoughts and words are precious. The way you've described deafblindness, the meaning of it with charge kids, and how to swallow the definition was eye opening. Thank you for that. It makes total sense. When your having a rough day nothing makes sense but this response did so thank you for that. Take care. :0) > > > 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...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 That is fantastic advice, because Alissa is still Alissa no matter what labels are tacked on. Kim On 2/23/06 12:03 AM, " matthew_steven_alissa " wrote: > " Do not fear labels " Thats fantastic advice! On this journey I'm on > with Allissa there are and will be so many words of wisdom I will > receive and this phrase will definitley stick! Thanks for the advice. > > >> >> I DO know how you feel and know, too, that many on this list are > fully >> aware as well. I think sometimes we fail to say here that we > (parents >> other than you) want to fade away, can't take it any longer, put it > as you will. >> My husband and I have no help with now, and it's very, very > hard. Of >> course we love her, but that doesn't really ease things > sufficiently in a >> crunch. You must understand that you are not alone. It's not just > that you >> can vent here. You can share your horrors; when they happen, you > can >> share the joys --- and I can almost promise that those will come, > too. Feel >> free to share irrational thoughts. I certainly do so. >> Deafblind. I remember when there was a move to adopt that label > rather >> than dual sensory impairment or the like. I was appalled. As I've > seen >> what can accomplish, my fears have ended. Do not fear > labels. >> Sorry if I lecture. Martha >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 You are welcome, glad a little hope slipped back in as the day went on. Kim On 2/23/06 12:26 AM, " matthew_steven_alissa " wrote: > Kim, thank you for email. Its a keeper. I've printed it off I know > I'll be reading it over and over again. Thanks for getting me through > a rough day. Your thoughts and words are precious. The way you've > described deafblindness, the meaning of it with charge kids, and how > to swallow the definition was eye opening. Thank you for that. It > makes total sense. When your having a rough day nothing makes sense > but this response did so thank you for that. Take care. :0) > > >> >>> 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...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 yeah we all r ourselves no matter wat the lable is > > That is fantastic advice, because Alissa is still Alissa no matter what > labels are tacked on. Kim > > > On 2/23/06 12:03 AM, " matthew_steven_alissa " > wrote: > > > " Do not fear labels " Thats fantastic advice! On this journey I'm on > > with Allissa there are and will be so many words of wisdom I will > > receive and this phrase will definitley stick! Thanks for the advice. > > > > > >> > >> I DO know how you feel and know, too, that many on this list are > > fully > >> aware as well. I think sometimes we fail to say here that we > > (parents > >> other than you) want to fade away, can't take it any longer, put it > > as you will. > >> My husband and I have no help with now, and it's very, very > > hard. Of > >> course we love her, but that doesn't really ease things > > sufficiently in a > >> crunch. You must understand that you are not alone. It's not just > > that you > >> can vent here. You can share your horrors; when they happen, you > > can > >> share the joys --- and I can almost promise that those will come, > > too. Feel > >> free to share irrational thoughts. I certainly do so. > >> Deafblind. I remember when there was a move to adopt that label > > rather > >> than dual sensory impairment or the like. I was appalled. As I've > > seen > >> what can accomplish, my fears have ended. Do not fear > > labels. > >> Sorry if I lecture. Martha > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 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 23, 2006 Report Share Posted February 23, 2006 , This is a late reply as I am supposed to be taking a break from this list. As you can see it is not working! I just want to echo everyone else's words of encouragement and to let you know as all others have said that what you are experiencing is totally normal under the circumstances we all fall of being thrown into a complex life. It is true that those of us who may seem so strong and together have not always been so and that we all crumbled ( and sometimes still do), especially those early days of frightening phrases, unknown words, no control, etc etc etc. Please know that you do have some control and you and Alissa deserve some " normal " time. The earth will not stop spinning and she will not be adversely disadvantaged because you are taking some time out to just enjoy your baby. Those early times can be swamped and taken over. Don't forget each professional looks after Alissa only in their area of expertise so for them the whole picture may not quite come together. Well meaning and commited as they may be, I do think that sometimes they forget that the parents have to impement ALL of their specialisms and that there is only 24 hours in the day after all. I say hooray for " normality breaks " . Be assures as everyone has said that things will slow down, and that is when you too will seem to the newcomers like an old hand and so confident. In the meantime, none of us need wear the cape of super anything and we are all allowed our meltdowns when we are overwhelmed. Enjoy your girl and when it feels right, you will be right on top of those therapies. More hugs from the UK Flo (mum to - 5- CHARGE and Elly - 3 and horrible right now! Quote Link to comment Share on other sites More sharing options...
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...
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