Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Hun we have all been there!! I have even had an evil kid make fun of Eva and her ears and he was doing it to be mean! GGRRR!! I know kids can be mean and rude but remember how it was before you had her and how you may have looked at someone different and remember what you were thinking. I know I use to think, " wow that poor child " or " that poor mom " I use to work with kids so I saw them all shapes and sizes. I wish I was closer to you so we could hang out together, I would love to have more CHARGE moms closer to me too. They are hard to find and I am helping with the Childerns Hospital to get more info out there and hope to bring more people with CHARGE out there. Hugs, Crystal and Eva (11 1\2 month charger) > > Ok everyone, so ALissa just got out of the hospital on Wednesday. As > you all know, she did not pas her hearing test. I feel like the > emotions of when she was first born and we were first told she has > charge are all coming back. > > Something is happening to my train of thought. I just want to lock > myself up at home and not be around anyone. I feel really alone. I > feel noone can relate to what I'm going through. I went to a birthday > party today for my son and everyone was staring at ALissa as if she > was part of a circus. I just can't stand the staring! I don't know > how to cope with all the stares!!! I wish I can just surround myself > with CHARGE moms.... only they would understand. I feel like the > friends and family and even my own sisters to whom I'm really close > with just don't understand. I feel like I am a different person and > they all just don't get it. I feel like everyone is watching us. A > friend was over the other day and she was just staring at Alissa. I > hate it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 I don't remember how old Alissa is but when was diagnosed with hearing loss at age 1 1/2? I was surprised at how hard it hit me emotionally - she had been through so much medically but the hearing was breaking me down! I sympathize or empathize (whichever is appropriate) with your " state " and I go through ups and downs - lately more downs. I no longer go to birthday parties and really don't go anywhere because I can't take all my kids out by myself. This is a wonderful group and I wish we lived in " CHARGEland " but until that happens I surround myself with friends that love us for who we are and accept us as we are and even make accommodations as needed. It takes a village and I hope you find yours soon. Oh yeah, antidepressants provide a little breathing room...... Lori Myers Spouse - Trent, Children - (8), (5, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (3) Dallas, Texas Feeling Alone Ok everyone, so ALissa just got out of the hospital on Wednesday. As you all know, she did not pas her hearing test. I feel like the emotions of when she was first born and we were first told she has charge are all coming back. Something is happening to my train of thought. I just want to lock myself up at home and not be around anyone. I feel really alone. I feel noone can relate to what I'm going through. I went to a birthday party today for my son and everyone was staring at ALissa as if she was part of a circus. I just can't stand the staring! I don't know how to cope with all the stares!!! I wish I can just surround myself with CHARGE moms.... only they would understand. I feel like the friends and family and even my own sisters to whom I'm really close with just don't understand. I feel like I am a different person and they all just don't get it. I feel like everyone is watching us. A friend was over the other day and she was just staring at Alissa. I hate it. CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; 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 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 April 1, 2006 Report Share Posted April 1, 2006 I agree with everything Crystal wrote. I still hate it when people look at oddly, but it's also something I've never understood! As I have found more and more people " working " happily with her, I think my own acceptance has zoomed. Before we left our school district, things were bad. I think if one's CHARGEr cannot attend Perkins or something similar, it must be a matter of educating folks. We had a meeting yesterday with our Regional Center (that's a national thing but think it's called different things in different states) and the agency which will handle her adult services. I was tremendously struck by what the head of the agency said: getting involved in HER community is not a matter of taking her to WallMart, etc.; rather, it's a matter of taking her to places where she will be welcome and expected to be a part of things. I'm reminded of the theme song from the old Cheers tv program. I know that when you have a young child, that must seem a long way off. I certainly never understood it before recently. However, I think if we can bring ourselves to bring our kiddos fully into the world, we'll have less of a need to lock ourselves away. I did that for way too many years. Share your angst here. I imagine that we ALL understand completely. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 I agree with everything Crystal wrote. I still hate it when people look at oddly, but it's also something I've never understood! As I have found more and more people " working " happily with her, I think my own acceptance has zoomed. Before we left our school district, things were bad. I think if one's CHARGEr cannot attend Perkins or something similar, it must be a matter of educating folks. We had a meeting yesterday with our Regional Center (that's a national thing but think it's called different things in different states) and the agency which will handle her adult services. I was tremendously struck by what the head of the agency said: getting involved in HER community is not a matter of taking her to WallMart, etc.; rather, it's a matter of taking her to places where she will be welcome and expected to be a part of things. I'm reminded of the theme song from the old Cheers tv program. I know that when you have a young child, that must seem a long way off. I certainly never understood it before recently. However, I think if we can bring ourselves to bring our kiddos fully into the world, we'll have less of a need to lock ourselves away. I did that for way too many years. Share your angst here. I imagine that we ALL understand completely. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 I wish we could all be spared the feelings you described. Libby left the NICU after 18 days with " probable CHARGE " diagnosis - bilateral choanal atresia, PDA, ASD, and feeding problems. The other things the geneticist pointed out that we couldn't see were her low-set rotated ears with clipped helix, palmar crease, square hands, crooked little fingers, prominent forehead, deep-set eyes, small jaw. We were proud to be leaving with " probable CHARGE " because we didn't think she had CHARGE. Well, 6 months later Libby failed her sedated hearing test and I was crushed. I new that took the " probable " away from the CHARGE. Over the next 4 months, Libby had a heart cath. with showed further anomalies and we also had to place a Mic-Key button and do the Nissen. By Libby's 1st birthday, I hit rock bottom. Yes, I have seen children come into our extended families/friends since Libby's birth that have far surpassed her capabilities. I have not, however, seen that those families have felt any more blessed by their children than we have been blessed by ours. We have all struggled with the ups and downs, side-steps, jumping through hoops parts of CHARGE. I know that besides the pain Libby has endured, there's not really much that I would have changed. I enjoy every crooked smile. I wait with eager anticipation for the possibility of the next milestone. We have become understanding and compassionate where before, we were so similar to our hesitant family/friends. They will also become more compassionate and unafraid. They need you to help them know how. They were also thrown into this new arena. They just got the nose-bleed seats. Please know that you are not alone. We have never met anyone else with CHARGE. Sometimes it is lonely...but, you are not alone. Keep up with the list. It is a bit time consuming. It's worth the time. There will not be another place with more for you. I have looked. Cry when you need to...medications/counseling can help...chin up! Gross wife to Wesley and Mom to Madalyn 7-1/2 and Libby 3-1/2 CHARGEr matthew_steven_alissa wrote: Ok everyone, so ALissa just got out of the hospital on Wednesday. As you all know, she did not pas her hearing test. I feel like the emotions of when she was first born and we were first told she has charge are all coming back. Something is happening to my train of thought. I just want to lock myself up at home and not be around anyone. I feel really alone. I feel noone can relate to what I'm going through. I went to a birthday party today for my son and everyone was staring at ALissa as if she was part of a circus. I just can't stand the staring! I don't know how to cope with all the stares!!! I wish I can just surround myself with CHARGE moms.... only they would understand. I feel like the friends and family and even my own sisters to whom I'm really close with just don't understand. I feel like I am a different person and they all just don't get it. I feel like everyone is watching us. A friend was over the other day and she was just staring at Alissa. I hate it. CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; 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 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 April 1, 2006 Report Share Posted April 1, 2006 Yes, I've been there, too! was diagnosed with CHARGE at 6 weeks but wasn't diagnosed with cerebral palsy until 3 years. Let me tell you, that was a HUGE blow. Just when I thought I was over everything, this just crushed me. He had just prior to that started up on his seizures again, seizures which made him stop breathing, and we just got them under control. I had my share of anger towards others, especially those " one- upping " moms that are always at birthday parties, waiting rooms, etc. (i.e. " well MY son was playing the violin at 9 months!! " ). I used to use the shock technique to " get back at them " for the disapproving stares and/or comments. Once, one of these women's children came up to my son and was trying to speak to him. My son wasn't able to speak until about 4 or 5 years old, so he would just grunt back to the boy. The boy said " What's wrong with him? " within earshot of the mom and her friends so I said " His brain has an 'owie' on it, so it doesn't work as well as yours. " Boy, did that mother want to crawl under a rock, but the boy asked a lot of questions after that, just genuine curiosity and the other women began to be " nicer " . After that, the boy started to bring toys to my son, and try and help him do things. People stare or are scared because they don't understand. I am usually up front with people when they ask about my son, especially when they ask his age, because I know he acts much younger than he is. This usually makes ME feel better knowing they aren't wondering silently " what's wrong with this kid? " and it usually opens up to a lot of questions from the person I am speaking with. Don't get me wrong...there are times when I get really down. I think I am able to pull myself out of it quicker because I see how many people genuinely care for my son. He is so loved in school, in every school he's been to. All the children and teachers who pass him in the hallway all know him by name and sometimes people even stop us in stores to say hi to him. Hang in there. We are all in this together and I hope you can find the love and support you need here in this community like I do. Lots of hugs from the Pagan Family , , Marina, Jr., Tabitha and Christian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 , I've definitely been where you are - and I found it was when we seemed to be finding out one bad thing after another (in early days). Now those moments are more sporadic and actually kind of surprise me when they hit because I always think I handle it so well and then I have a mini-meltdown that lets me know I'm human after all and things really do still get to me at times. But, that being said, the good and amazing times that she is just a delight and so wonderful and makes my life so different than what it was before her far outweighs those rough times. It's not easy when you're going t hrough them though. I remember when K was about 6 months old, I needed a break from even the CHARGE list I was just in a funk (really!). Just remember with all the seemingly awful news that seems to be coming at you that these kids are the Kings and Queens of accommodation - they are masters at taking what they DO have and making the most of it. Lots of love & understanding coming your way, > > Ok everyone, so ALissa just got out of the hospital on Wednesday. As > you all know, she did not pas her hearing test. I feel like the > emotions of when she was first born and we were first told she has > charge are all coming back. > > Something is happening to my train of thought. I just want to lock > myself up at home and not be around anyone. I feel really alone. I > feel noone can relate to what I'm going through. I went to a birthday > party today for my son and everyone was staring at ALissa as if she > was part of a circus. I just can't stand the staring! I don't know > how to cope with all the stares!!! I wish I can just surround myself > with CHARGE moms.... only they would understand. I feel like the > friends and family and even my own sisters to whom I'm really close > with just don't understand. I feel like I am a different person and > they all just don't get it. I feel like everyone is watching us. A > friend was over the other day and she was just staring at Alissa. I > hate it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 , I've definitely been where you are - and I found it was when we seemed to be finding out one bad thing after another (in early days). Now those moments are more sporadic and actually kind of surprise me when they hit because I always think I handle it so well and then I have a mini-meltdown that lets me know I'm human after all and things really do still get to me at times. But, that being said, the good and amazing times that she is just a delight and so wonderful and makes my life so different than what it was before her far outweighs those rough times. It's not easy when you're going t hrough them though. I remember when K was about 6 months old, I needed a break from even the CHARGE list I was just in a funk (really!). Just remember with all the seemingly awful news that seems to be coming at you that these kids are the Kings and Queens of accommodation - they are masters at taking what they DO have and making the most of it. Lots of love & understanding coming your way, > > Ok everyone, so ALissa just got out of the hospital on Wednesday. As > you all know, she did not pas her hearing test. I feel like the > emotions of when she was first born and we were first told she has > charge are all coming back. > > Something is happening to my train of thought. I just want to lock > myself up at home and not be around anyone. I feel really alone. I > feel noone can relate to what I'm going through. I went to a birthday > party today for my son and everyone was staring at ALissa as if she > was part of a circus. I just can't stand the staring! I don't know > how to cope with all the stares!!! I wish I can just surround myself > with CHARGE moms.... only they would understand. I feel like the > friends and family and even my own sisters to whom I'm really close > with just don't understand. I feel like I am a different person and > they all just don't get it. I feel like everyone is watching us. A > friend was over the other day and she was just staring at Alissa. I > hate it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 , I've definitely been where you are - and I found it was when we seemed to be finding out one bad thing after another (in early days). Now those moments are more sporadic and actually kind of surprise me when they hit because I always think I handle it so well and then I have a mini-meltdown that lets me know I'm human after all and things really do still get to me at times. But, that being said, the good and amazing times that she is just a delight and so wonderful and makes my life so different than what it was before her far outweighs those rough times. It's not easy when you're going t hrough them though. I remember when K was about 6 months old, I needed a break from even the CHARGE list I was just in a funk (really!). Just remember with all the seemingly awful news that seems to be coming at you that these kids are the Kings and Queens of accommodation - they are masters at taking what they DO have and making the most of it. Lots of love & understanding coming your way, > > Ok everyone, so ALissa just got out of the hospital on Wednesday. As > you all know, she did not pas her hearing test. I feel like the > emotions of when she was first born and we were first told she has > charge are all coming back. > > Something is happening to my train of thought. I just want to lock > myself up at home and not be around anyone. I feel really alone. I > feel noone can relate to what I'm going through. I went to a birthday > party today for my son and everyone was staring at ALissa as if she > was part of a circus. I just can't stand the staring! I don't know > how to cope with all the stares!!! I wish I can just surround myself > with CHARGE moms.... only they would understand. I feel like the > friends and family and even my own sisters to whom I'm really close > with just don't understand. I feel like I am a different person and > they all just don't get it. I feel like everyone is watching us. A > friend was over the other day and she was just staring at Alissa. I > hate it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 , Hugs to you - grief is grief and it sucks! Feel what you need to feel now and know that you will make your way through it! Kim > Ok everyone, so ALissa just got out of the hospital on Wednesday. As > you all know, she did not pas her hearing test. I feel like the > emotions of when she was first born and we were first told she has > charge are all coming back. > > Something is happening to my train of thought. I just want to lock > myself up at home and not be around anyone. I feel really alone. I > feel noone can relate to what I'm going through. I went to a birthday > party today for my son and everyone was staring at ALissa as if she > was part of a circus. I just can't stand the staring! I don't know > how to cope with all the stares!!! I wish I can just surround myself > with CHARGE moms.... only they would understand. I feel like the > friends and family and even my own sisters to whom I'm really close > with just don't understand. I feel like I am a different person and > they all just don't get it. I feel like everyone is watching us. A > friend was over the other day and she was just staring at Alissa. I > hate it. > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; 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 > > 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 April 2, 2006 Report Share Posted April 2, 2006 , Hugs to you - grief is grief and it sucks! Feel what you need to feel now and know that you will make your way through it! Kim > Ok everyone, so ALissa just got out of the hospital on Wednesday. As > you all know, she did not pas her hearing test. I feel like the > emotions of when she was first born and we were first told she has > charge are all coming back. > > Something is happening to my train of thought. I just want to lock > myself up at home and not be around anyone. I feel really alone. I > feel noone can relate to what I'm going through. I went to a birthday > party today for my son and everyone was staring at ALissa as if she > was part of a circus. I just can't stand the staring! I don't know > how to cope with all the stares!!! I wish I can just surround myself > with CHARGE moms.... only they would understand. I feel like the > friends and family and even my own sisters to whom I'm really close > with just don't understand. I feel like I am a different person and > they all just don't get it. I feel like everyone is watching us. A > friend was over the other day and she was just staring at Alissa. I > hate it. > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; 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 > > 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 April 2, 2006 Report Share Posted April 2, 2006 I hope you are feeling better. I know that it is not easy. Some days are better than others. Know that you are not alone in your feelings, and your feelings aren't wrong. Sometimes people, (people who don't understand) will look at you with judgment for your feelings of being down or other feelings. Until they walk in your shoes, they will never understand how you feel. The hardest thing can be when you're own family doesn't understand. I totally get that. I do find comfort with other parents who have kids with special needs, not only CHARGE. They also have had their own struggles, sometimes much worse than ours, similar to ours, or just different. I know that doesn't make what you, me, or others have gone through less crappy, but they do understand the struggles, even if they aren't exactly the same. The most important thing to remember is that you are NOT alone. We will all struggle from time to time, but the joy our kids bring to us and to others is above and beyond anything I ever expected. Our children achieving milestones bring such a sense of joy, that our other children don't bring. I hope that makes sense. Hang in there, days ahead are brighter. -- Kim Menne mom of Raychel-9, Tyler (CHARGER)-8, -21mo, and wife of Craig, in MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I hope you are feeling better. I know that it is not easy. Some days are better than others. Know that you are not alone in your feelings, and your feelings aren't wrong. Sometimes people, (people who don't understand) will look at you with judgment for your feelings of being down or other feelings. Until they walk in your shoes, they will never understand how you feel. The hardest thing can be when you're own family doesn't understand. I totally get that. I do find comfort with other parents who have kids with special needs, not only CHARGE. They also have had their own struggles, sometimes much worse than ours, similar to ours, or just different. I know that doesn't make what you, me, or others have gone through less crappy, but they do understand the struggles, even if they aren't exactly the same. The most important thing to remember is that you are NOT alone. We will all struggle from time to time, but the joy our kids bring to us and to others is above and beyond anything I ever expected. Our children achieving milestones bring such a sense of joy, that our other children don't bring. I hope that makes sense. Hang in there, days ahead are brighter. -- Kim Menne mom of Raychel-9, Tyler (CHARGER)-8, -21mo, and wife of Craig, in MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 im often feeling alone soemtimes i wish i couldnt talk coz dad allwyas goes on about it but then i think well how would they all know wat im saying > > I hope you are feeling better. I know that it is not easy. Some days are > better than others. Know that you are not alone in your feelings, and your > feelings aren't wrong. Sometimes people, (people who don't understand) will > look at you with judgment for your feelings of being down or other > feelings. Until they walk in your shoes, they will never understand how you > feel. The hardest thing can be when you're own family doesn't > understand. I totally get that. I do find comfort with other parents who > have kids with special needs, not only CHARGE. They also have had their own > struggles, sometimes much worse than ours, similar to ours, or just > different. I know that doesn't make what you, me, or others have gone > through less crappy, but they do understand the struggles, even if they > aren't exactly the same. The most important thing to remember is that you > are NOT alone. We will all struggle from time to time, but the joy our kids > bring to us and to others is above and beyond anything I ever expected. Our > children achieving milestones bring such a sense of joy, that our other > children don't bring. I hope that makes sense. Hang in there, days ahead > are brighter. > -- > Kim Menne > mom of Raychel-9, Tyler (CHARGER)-8, -21mo, and wife of Craig, in MN > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 2, 2006 Report Share Posted April 2, 2006 im often feeling alone soemtimes i wish i couldnt talk coz dad allwyas goes on about it but then i think well how would they all know wat im saying > > I hope you are feeling better. I know that it is not easy. Some days are > better than others. Know that you are not alone in your feelings, and your > feelings aren't wrong. Sometimes people, (people who don't understand) will > look at you with judgment for your feelings of being down or other > feelings. Until they walk in your shoes, they will never understand how you > feel. The hardest thing can be when you're own family doesn't > understand. I totally get that. I do find comfort with other parents who > have kids with special needs, not only CHARGE. They also have had their own > struggles, sometimes much worse than ours, similar to ours, or just > different. I know that doesn't make what you, me, or others have gone > through less crappy, but they do understand the struggles, even if they > aren't exactly the same. The most important thing to remember is that you > are NOT alone. We will all struggle from time to time, but the joy our kids > bring to us and to others is above and beyond anything I ever expected. Our > children achieving milestones bring such a sense of joy, that our other > children don't bring. I hope that makes sense. Hang in there, days ahead > are brighter. > -- > Kim Menne > mom of Raychel-9, Tyler (CHARGER)-8, -21mo, and wife of Craig, in MN > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 2, 2006 Report Share Posted April 2, 2006 im often feeling alone soemtimes i wish i couldnt talk coz dad allwyas goes on about it but then i think well how would they all know wat im saying > > I hope you are feeling better. I know that it is not easy. Some days are > better than others. Know that you are not alone in your feelings, and your > feelings aren't wrong. Sometimes people, (people who don't understand) will > look at you with judgment for your feelings of being down or other > feelings. Until they walk in your shoes, they will never understand how you > feel. The hardest thing can be when you're own family doesn't > understand. I totally get that. I do find comfort with other parents who > have kids with special needs, not only CHARGE. They also have had their own > struggles, sometimes much worse than ours, similar to ours, or just > different. I know that doesn't make what you, me, or others have gone > through less crappy, but they do understand the struggles, even if they > aren't exactly the same. The most important thing to remember is that you > are NOT alone. We will all struggle from time to time, but the joy our kids > bring to us and to others is above and beyond anything I ever expected. Our > children achieving milestones bring such a sense of joy, that our other > children don't bring. I hope that makes sense. Hang in there, days ahead > are brighter. > -- > Kim Menne > mom of Raychel-9, Tyler (CHARGER)-8, -21mo, and wife of Craig, in MN > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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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