Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Y'know, I've been doing this computer thing for a long, long time...since 1984. I've been on message boards since Day One and if there's one thing I've learned, you don't participate in message boards unless it's something that's significant to you...same as you don't talk much in in-person conversations if you don't have a whole lot to say about the subject (wow, was that sucky English or WHAT?). Which brings us to this listserve. With RSS kids having a whole gamut of problems, from major to minor, it would make sense that the kids who have more problems would be written about more...those are the parents who have more to be concerned about, have more at stake, have more to ask questions about, etc. Parents of kids who are, as someone said, " coasting, " or whose problems are more minor inconveniences than major health issues, won't have as many questions or issues because their children are doing relatively OK. So I could see how they might not want to post, or even subscribe, if they think they're " not at the same level " as the parents of the kids who have more issues. And " the former member " that mentioned is right...mainly seeing messages about PEG tubes and ADHD and learning disabilities and hypoglycemia is going to scare the pants off of newbies...especially those who are brand-new to everything and just coming to grips with their child's diagnosis, never mind all that it may or may not encompass. I guess that's part of the reason why I stay here...I mean, except for HAVING RSS, I have very little in common with y'all. The problems that you guys are facing are things that I...no, that my PARENTS faced over 30 years ago...and even then, my problems were relatively minor and went without treatment (heck, without diagnosis!). But if my (for lack of a better term) humor- laced " words of wisdom " can help a parent know that there IS a happy ending and that their child IS going to grow up to be a productive member of society, then I guess that the few words of advice that I CAN give, to the things that I CAN relate to, are worth my efforts. To me, I'm just an RSS kid who grew up...but I guess just being THAT is a good thing to hear for someone who's overwhelmed and scared for their child's future. -Sharon- Just an RSS kid who grew up 4'6.75 " , 94#, 38Y 3M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hey Sharon, Let me second what said!!! You are such a valuable asset to our list serve, and it would be a shame to lose your insight, and humor! I, for one, am really glad that you are here!! Hugs to you, Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair, Miralax, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 I'm glad all of you are here. Sometimes I do worry more about what's to come reading posts about things we haven't had to deal w /yet. But I tried the alternative (knowing nothing) for 3 years while we awaited a diagnosis. I laid awake in fear a lot more nights with the unknown than I have since I've joined this group. Just knowing that you're all there, some of what you've dealt with, and that Sharon did grow up get me through the fears I have about Willie. I don't know if he's a milder case. His hypoglycemia has been intense at times, he probably should have had a tube, he's met most milestones quite accurately (except speech), but he does have the majority of the indicators of RSS. This group is a huge help to me and I thank you all for your wisdom and honesty in your posts. Kathy (Jack, non-RSS, 5 and WILLIE , 3 yrs, 4 mos, 22 lbs, periactin) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Like , I love your humor. You always make me smile. And I love how you sign your name - just and RSS kid who grew up. I hope my own son feels that way someday. Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Sharon, I find your posts especially helpful. My daughter is " just an RSS kid who's growing up " without all the intervention as she has a very mild case. I know how her having RSS is for me but as she is only 5, it's hard for me to really know how it is for HER no matter how articulate a child she is. I see you very much as her future and you help me to back off some with my adult worries. About This ListServe Y'know, I've been doing this computer thing for a long, long time...since 1984. I've been on message boards since Day One and if there's one thing I've learned, you don't participate in message boards unless it's something that's significant to you...same as you don't talk much in in-person conversations if you don't have a whole lot to say about the subject (wow, was that sucky English or WHAT?). Which brings us to this listserve. With RSS kids having a whole gamut of problems, from major to minor, it would make sense that the kids who have more problems would be written about more...those are the parents who have more to be concerned about, have more at stake, have more to ask questions about, etc. Parents of kids who are, as someone said, " coasting, " or whose problems are more minor inconveniences than major health issues, won't have as many questions or issues because their children are doing relatively OK. So I could see how they might not want to post, or even subscribe, if they think they're " not at the same level " as the parents of the kids who have more issues. And " the former member " that mentioned is right...mainly seeing messages about PEG tubes and ADHD and learning disabilities and hypoglycemia is going to scare the pants off of newbies...especially those who are brand-new to everything and just coming to grips with their child's diagnosis, never mind all that it may or may not encompass. I guess that's part of the reason why I stay here...I mean, except for HAVING RSS, I have very little in common with y'all. The problems that you guys are facing are things that I...no, that my PARENTS faced over 30 years ago...and even then, my problems were relatively minor and went without treatment (heck, without diagnosis!). But if my (for lack of a better term) humor- laced " words of wisdom " can help a parent know that there IS a happy ending and that their child IS going to grow up to be a productive member of society, then I guess that the few words of advice that I CAN give, to the things that I CAN relate to, are worth my efforts. To me, I'm just an RSS kid who grew up...but I guess just being THAT is a good thing to hear for someone who's overwhelmed and scared for their child's future. -Sharon- Just an RSS kid who grew up 4'6.75 " , 94#, 38Y 3M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi nancy how are you? i remember when i got a email from destiny it was great, are you going to the convention this year as i would love to meet destiny as she sounds my kinda gal, a fiesty chick that doesnt let rss make her not heard by people, keep in touch. Christensen wrote:Sharon, I find your posts especially helpful. My daughter is " just an RSS kid who's growing up " without all the intervention as she has a very mild case. I know how her having RSS is for me but as she is only 5, it's hard for me to really know how it is for HER no matter how articulate a child she is. I see you very much as her future and you help me to back off some with my adult worries. About This ListServe Y'know, I've been doing this computer thing for a long, long time...since 1984. I've been on message boards since Day One and if there's one thing I've learned, you don't participate in message boards unless it's something that's significant to you...same as you don't talk much in in-person conversations if you don't have a whole lot to say about the subject (wow, was that sucky English or WHAT?). Which brings us to this listserve. With RSS kids having a whole gamut of problems, from major to minor, it would make sense that the kids who have more problems would be written about more...those are the parents who have more to be concerned about, have more at stake, have more to ask questions about, etc. Parents of kids who are, as someone said, " coasting, " or whose problems are more minor inconveniences than major health issues, won't have as many questions or issues because their children are doing relatively OK. So I could see how they might not want to post, or even subscribe, if they think they're " not at the same level " as the parents of the kids who have more issues. And " the former member " that mentioned is right...mainly seeing messages about PEG tubes and ADHD and learning disabilities and hypoglycemia is going to scare the pants off of newbies...especially those who are brand-new to everything and just coming to grips with their child's diagnosis, never mind all that it may or may not encompass. I guess that's part of the reason why I stay here...I mean, except for HAVING RSS, I have very little in common with y'all. The problems that you guys are facing are things that I...no, that my PARENTS faced over 30 years ago...and even then, my problems were relatively minor and went without treatment (heck, without diagnosis!). But if my (for lack of a better term) humor- laced " words of wisdom " can help a parent know that there IS a happy ending and that their child IS going to grow up to be a productive member of society, then I guess that the few words of advice that I CAN give, to the things that I CAN relate to, are worth my efforts. To me, I'm just an RSS kid who grew up...but I guess just being THAT is a good thing to hear for someone who's overwhelmed and scared for their child's future. -Sharon- Just an RSS kid who grew up 4'6.75 " , 94#, 38Y 3M Quote Link to comment Share on other sites More sharing options...
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