Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 brandi i think thats the prob i had there i catn understnad how we scare true all of us chargers r different some r worse than others but in my opionion take any disability and u will find that they all differ cp downs spina vifita anything and everything no one is the same r we we just arent and as people have said to me this would b a boring world if we were hugs to you all ellen in aus > > Welcome to the group. I'm not understanding this message...why do we > scare > you? > > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big > brother 5 next month, married to the best daddy in the world for 10 > years! > > The mention of my child's name might make me cry. Not mentioning my > child's > name will break my heart. Unknown > > -- help me > > I posted as a new member. You guys scare me. I have a child that took > some time to get diagnosed but he did get diagnosed. He looks normal > and does not have the ear or face abnormalities. He is just this boy > with big blue eyes. I really do not know what to say but that it did > not happen to my son. You are a gerber baby (truly). But, Igueass it > did. Why?? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Very good point Ellen...what a boring world it would be. I didn't understand the message either. I don't understand if we scare her because our children are worse off then her own???...I don't know. That actually pains my heart. I never wanted my daughter to be " worse off " . I would love to say she is " perfect " in every way. But she's not. But what I have learned, is that she is perfect in God's way. And, I am very lucky to learn life lessons that no one else will understand unless faced with this type of lifestyle. One of those lessons I've learned is seeing beyond the scary differences and accepting them as new normals. Seeing a child as different " not only hurts the child, but hurts those that love that child. This is something that I wish people could truly understand. Anyhow, Ellen I found this during one of my early morning bible studies...I wanted to share it with you. " As he went along he saw a man blind from birth. His disciples asked him, Rabbi, who sinned, this man or his parents, that he was born blind?' Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.' " - 9:1-3 Love you sweetie! , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big brother 5 next month, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 My child is no better than yours. I am so overwhelmed with everything. This is all new to me. I have never talked on a group website. I have never been on the internet this long. I just truly needed to find people that were going through what I am going through. I look on the charge syndrome web site and I see children in the worse. My child (thank god) does not have the worst condition. No trach, no apnea, no palsey, nothing. He is just the most grateful child that you could ever know. --- In CHARGE , " and Melton " wrote: > > Very good point Ellen...what a boring world it would be. > > I didn't understand the message either. I don't understand if we scare her > because our children are worse off then her own???...I don't know. That > actually pains my heart. I never wanted my daughter to be " worse off " . I > would love to say she is " perfect " in every way. But she's not. But what I > have learned, is that she is perfect in God's way. And, I am very lucky to > learn life lessons that no one else will understand unless faced with this > type of lifestyle. One of those lessons I've learned is seeing beyond the > scary differences and accepting them as new normals. Seeing a child as > different " not only hurts the child, but hurts those that love that child. > This is something that I wish people could truly understand. > > Anyhow, Ellen I found this during one of my early morning bible studies...I > wanted to share it with you. > > " As he went along he saw a man blind from birth. His disciples asked him, > Rabbi, who sinned, this man or his parents, that he was born blind?' > Neither this man nor his parents sinned,' said Jesus, 'but this happened so > that the work of God might be displayed in his life.' " - 9:1- 3 > > Love you sweetie! > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big > brother 5 next month, married to the best daddy in the world for 10 > years! > > The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 yeah im not the worst eather but i have been and still can b > > My child is no better than yours. I am so overwhelmed with > everything. This is all new to me. I have never talked on a group > website. I have never been on the internet this long. I just truly > needed to find people that were going through what I am going > through. I look on the charge syndrome web site and I see children > in the worse. My child (thank god) does not have the worst > condition. No trach, no apnea, no palsey, nothing. He is just the > most grateful child that you could ever know. --- > > In CHARGE , " and > Melton " > wrote: > > > > Very good point Ellen...what a boring world it would be. > > > > I didn't understand the message either. I don't understand if we > scare her > > because our children are worse off then her own???...I don't know. > That > > actually pains my heart. I never wanted my daughter to be " worse > off " . I > > would love to say she is " perfect " in every way. But she's not. But > what I > > have learned, is that she is perfect in God's way. And, I am very > lucky to > > learn life lessons that no one else will understand unless faced > with this > > type of lifestyle. One of those lessons I've learned is seeing > beyond the > > scary differences and accepting them as new normals. Seeing a child > as > > different " not only hurts the child, but hurts those that love that > child. > > This is something that I wish people could truly understand. > > > > Anyhow, Ellen I found this during one of my early morning bible > studies...I > > wanted to share it with you. > > > > " As he went along he saw a man blind from birth. His disciples > asked him, > > Rabbi, who sinned, this man or his parents, that he was born > blind?' > > Neither this man nor his parents sinned,' said Jesus, 'but this > happened so > > that the work of God might be displayed in his life.' " - 9:1- > 3 > > > > Love you sweetie! > > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, > and big > > brother 5 next month, married to the best daddy in the world > for 10 > > years! > > > > The mention of my child's name might make me cry. Not mentioning my > child's name will break my heart. Unknown > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2007 Report Share Posted May 27, 2007 Thank you for clarifying. I understand your pain. After two and a half years the pain is still overwhelming. I think that is why your post stung...the pain is still there. You have found the right place. This is a family that provides information, love and a sense of security and hope. Welcome. , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big brother 5 next month, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 . There are many varying degrees of CHARGE. ....Not every child has a trach, or palsy etc. I have mild CHARGE. I dont have a trach.....sorry, im not sure what to say.. > > Thank you for clarifying. I understand your pain. After two and a half > years > the pain is still overwhelming. I think that is why your post stung...the > pain is still there. > > You have found the right place. This is a family that provides > information, > love and a sense of security and hope. Welcome. > > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big > brother 5 next month, married to the best daddy in the world for 10 > years! > > The mention of my child's name might make me cry. Not mentioning my > child's name will break my heart. Unknown > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Ellen and , I have sat here for the last half hour thinking on how to reply to this new mom. It has got to be hard on her to accept CHARGE in any way.. CHARGE is so very diverse that no two can be alike. I have two CHARGErs (ages 12 and 15) here in my home and they both are so unalike in problems and looks that you would never know they had the same syndrome. One has hearing problems the other doesn't, one with vision problems the other one with endo probs the other not.. they both are in reg ed classes with RSP support.. I could go on and on with more that they are unalike than alike.. but they both have CHARGE both considered mild. Each child is a child in his or her own way. It can be hard when you have a mildly affected kid and hear the stories of families who have more involved children. When was born I was told absolute horror stories on what I had to look forward to.. blind, deaf, major medical probs and would probably not see his first birthday ... he is now 15 and a half, looking forward to college to become a paleontologist (been a dino nut since forever LOL) , Please don't be scared of us on here. That is not what is intended here.. We consider ourselves family here and you and yours are a part of our family. We are a place to fret, gripe, complain and look for answers.. and more importantly be there for you through the bad and the good.. We will be the first to congratulate any and all accomplishments. One thing you could do is contact the CHARGE Syndrome Foundation (info at the end of this email) and see about getting a CHARGE manual.. there is info in it for you and sections for doctors. Congrats on your son, he sounds lovely and I would love to know more about him. And thank you for finding us Casey Mom to 15 CHARGE, Ken 17, Dawn 28 and Kinda Mom to Forrest 12 ________________________________________________________________________________\ ____Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Casey wow i didnt know you had two CHARGErs...I know of a family in NSW that have two kids with CHARGE. They are both very different too > > Ellen and , > > I have sat here for the last half hour thinking on how to reply to this > new mom. It has got to be hard on her to accept > CHARGE in any way.. CHARGE is so very diverse that no two can be alike. I > have two CHARGErs (ages 12 and 15) > here in my home and they both are so unalike in problems and looks that > you would never know they had the same syndrome. One has > hearing problems the other doesn't, one with vision problems the other one > with endo probs the other not.. they both > are in reg ed classes with RSP support.. I could go on and on with more > that they are unalike than alike.. but they both have > CHARGE both considered mild. Each child is a child in his or her own way. > It can be hard when you have a mildly > affected kid and hear the stories of families who have more involved > children. When was born I was told absolute > horror stories on what I had to look forward to.. blind, deaf, major > medical probs and would probably not see his first > birthday ... he is now 15 and a half, looking forward to college to become > a paleontologist (been a dino nut since forever LOL) > > > , > > Please don't be scared of us on here. That is not what is intended here.. > We consider ourselves family here and you and yours > are a part of our family. We are a place to fret, gripe, complain and look > for answers.. and more importantly be there for you > through the bad and the good.. We will be the first to congratulate any > and all accomplishments. One thing you could do is contact > the CHARGE Syndrome Foundation (info at the end of this email) and see > about getting a CHARGE manual.. there is info in > it for you and sections for doctors. > > Congrats on your son, he sounds lovely and I would love to know more about > him. And thank you for finding us > > Casey > Mom to 15 CHARGE, Ken 17, Dawn 28 and Kinda Mom to Forrest 12 > > __________________________________________________________Yahoo! > oneSearch: Finally, mobile search > that gives answers, not web links. > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 PS: Normal is just a setting on a dryer Casey ________________________________________________________________________________\ ____You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta. http://advision.webevents.yahoo.com/mailbeta/newmail_html.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Right on Casey!! Beautiful point. :-) Re: help me PS: Normal is just a setting on a dryer Casey __________________________________________________________You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta. http://advision.webevents.yahoo.com/mailbeta/newmail_html.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Bel, Guess I need to clarify the boys.. only one is mine.. the other I seem to have taken in, with his mother. They were in a very abusive situation and had nowhere to go, so they are staying here til they can get on their feet. Being the only two kids with CHARGE in the county it was kinda a logical place. Casey ________________________________________________________________________________\ ____Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list&sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 , My favorite saying.. I use it a lot in my parent education classes Case Re: help me PS: Normal is just a setting on a dryer Casey __________________________________________________________You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta. http://advision.webevents.yahoo.com/mailbeta/newmail_html.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 casey i think we all find it hard to find wat to say to somepeople i no i do like for instance the ones that talk bout trachs facial palsy i dotn have that stuff but i dono people on hre that do but also sometimes its hard to know what to say when someone is sturuggling to find the answer to it it really is > > , > > My favorite saying.. I use it a lot in my parent education classes > > Case > > Re: help me > > PS: Normal is just a setting on a dryer > > Casey > > __________________________________________________________You snooze, you > lose. Get messages ASAP with AutoCheck > in the all-new Yahoo! Mail Beta. > http://advision.webevents.yahoo.com/mailbeta/newmail_html.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Casey, You always know how to respond to the tough topics and make everyone feel better. So glad that you're back on the list. It sounds like you have a busy household right now. How do the boys interact with each other? You are going to the conf. right? Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 , It is so hard to know, isn't it, how to feel, what to do when confronted with a new and " strange " situation. I am not a parent of a child with CHARGE, but I work with many children in my school. There is a broad spectrum and you may or may not find what you need here. What you should know is that this group of parents and adults with CHARGE are the most caring, compassionate and funny people you will ever meet. By coming to visit with us, you have knocked on our door and anyone is always welcome!! pam Re: help me My child is no better than yours. I am so overwhelmed with everything. This is all new to me. I have never talked on a group website. I have never been on the internet this long. I just truly needed to find people that were going through what I am going through. I look on the charge syndrome web site and I see children in the worse. My child (thank god) does not have the worst condition. No trach, no apnea, no palsey, nothing. He is just the most grateful child that you could ever know. --- In CHARGE , " and Melton " wrote: > > Very good point Ellen...what a boring world it would be. > > I didn't understand the message either. I don't understand if we scare her > because our children are worse off then her own???...I don't know. That > actually pains my heart. I never wanted my daughter to be " worse off " . I > would love to say she is " perfect " in every way. But she's not. But what I > have learned, is that she is perfect in God's way. And, I am very lucky to > learn life lessons that no one else will understand unless faced with this > type of lifestyle. One of those lessons I've learned is seeing beyond the > scary differences and accepting them as new normals. Seeing a child as > different " not only hurts the child, but hurts those that love that child. > This is something that I wish people could truly understand. > > Anyhow, Ellen I found this during one of my early morning bible studies...I > wanted to share it with you. > > " As he went along he saw a man blind from birth. His disciples asked him, > Rabbi, who sinned, this man or his parents, that he was born blind?' > Neither this man nor his parents sinned,' said Jesus, 'but this happened so > that the work of God might be displayed in his life.' " - 9:1- 3 > > Love you sweetie! > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big > brother 5 next month, married to the best daddy in the world for 10 > years! > > The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 wait wait wait... i don't have a dryer... does that mean there's nothing " normal " in my life? what else is new :-) Cole > > PS: Normal is just a setting on a dryer > > Casey > > __________________________________________________________You snooze, you > lose. Get messages ASAP with AutoCheck > in the all-new Yahoo! Mail Beta. > http://advision.webevents.yahoo.com/mailbeta/newmail_html.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Jeanie, In a way it's funny.. they stay away from each other, mostly due to .. new people in the house has upset his routine. It will be real interesting if they are still here after next week, the kids get out of school next Fri. About the conf.. still working on it...got a lot to due with my docs, I have some medical things going on with me right now . Casey ________________________________________________________________________________\ ____ It's here! Your new message! Get new email alerts with the free Yahoo! Toolbar. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 - Thank you so much for posting this bible verse. I LOVE IT! What a great way to explain it. I started out questioning why in my head 24/7, couldn't even sleep! But I learned over time how truly special really is. I can't go anywhere without sharing his story with people and telling them about him and his accomplishments etc. I believe that he touches everyone who hears about him weather they meet him or not. The bible verse is a great sumary! THANK YOU!! PROUD mom to , Dylan, (CHARGER)and Drew I > wanted to share it with you. > > " As he went along he saw a man blind from birth. His disciples asked him, > Rabbi, who sinned, this man or his parents, that he was born blind?' > Neither this man nor his parents sinned,' said Jesus, 'but this happened so > that the work of God might be displayed in his life.' " - 9:1- 3 > > Love you sweetie! > , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big > brother 5 next month, married to the best daddy in the world for 10 > years! > > The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 Casey, MacKenzie can be the same way when we get together with and Kennedy. She can't wait to see them but after a few hours she gets fussy and wants to be left alone. Although maybe it's just because she likes to be queen bee. I wonder how she'll do at the conference with many other chargers. Hope you get your medical stuff figured out. I've been looking forward to chatting over some tequila. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Casey, You are amazing. I am sure this little family is so very grateful for your little family. pam > > > > > Bel, > > Guess I need to clarify the boys.. only one is mine.. the other I seem to have > taken in, with his mother. They were in a very > abusive situation and had nowhere to go, so they are staying here til they can > get on their feet. Being the only two kids with > CHARGE in the county it was kinda a logical place. > > Casey > > __________________________________________________________Be a better > Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers > - Check it out. > http://answers.yahoo.com/dir/?link=list&sid=396545469 > http://answers.yahoo.com/dir/?link=list & sid=396545469> > > Quote Link to comment Share on other sites More sharing options...
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