Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Thank you for E-mailing me. You have given me a wealth of information. I would like to E-mail mail you directly to ask you some more questions. Let me know if this is OK. Thank you and God Bless!!! Later age diagnosis , Oh my gosh, your story is ours almost! My daughter was diagnosed with CHARGE at the age of 14 also even though she has every characteristic of CHARGE, just to a lesser degree! She is now 18 and doing well! She had the coanal atresia, opened 4 times too. As an infant we found out she had the colobomas, reflux and other things. She was such a sick little one. She got hearing aids around two. Along the way new things kept popping up no one could explain. We too were told the same, that all of the things develop at the same time, yadda, yadda.... It was hard because she never fit anywhere. We often felt alone, but Patty felt it the most, especially during that age. I could go on but I think you know. Then at 14 she was properly diagnosed with CHARGE. I don't want to make you nervous, but have your daughters heart checked. Patty always had a heart murmur, but with the diagnosis they checked it out further. She had something called a PDA, " just a little hole. " Thank God they checked it out, she had had strep in her blood system 3 times, and other illnesses which could have been scary. When they fixed it (easily through arteries in the leg/hip area) the doctors were surprised how large it actually was. Just check it out, that's all. Oh, and the puberty thing was fun! It still is interesting. Check that out further. The diagnosis for Pat was a life altering change for every one of us in the family. It was such a blessing as well. Pat's education and medical interventions either changed or were finally understood. But I think the most important change was we weren't alone. I don't know where you live but another drastic important change in our lives was attending the CHARGE Conference. I couldn't believe I was standing somewhere where there were tons of " little Patty's " everywhere! The same face, the same behaviors, the same ... just with different degrees! The feelings and emotions were, and still is, indescribable. Then we went to the sessions and I couldn't believe how my daughter fit what was said or taught. I could understand my daughter more than I ever did. I can't describe to people of the importance of that unless they experience it. The conference is soon, but will can and will change your lives. If you can find any way to attend, it would really help. If not, there's another one two years from now. Time does fly! Pat is 18 and just graduated. She is still often lonely here in town, but with the diagnosis came understanding and experienced professionals from around the country. Pat was able to attend Perkins and New England Deaf/Blind Center programs. These experiences were more than miraculous. Plus there she met individuals who she remains in contact with today. She has made some really good friends. Now she is more confident and happy. Which was hard because she always has been confident! I am telling you, with the diagnosis, the conference, and all the specialist involved with CHARGE and her, life finally made so much sense. She is Empowered! It is so much easier for Patty now. It's not easy and never will be, but it is easier! Understanding goes a long way, it's unbelievable. We are no longer alone, and you aren't as well. Bonnie, Mom to a 20, Pat 18 CHARGE and wife to Lynn, I hope to see you at the conference. Is coming with you? I forget. If not don't forget to bring pictures. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 , Yes, emailing me directly is fine. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 and Bonnie, Our is 18 and we never had a clear dignosis. Just " Syndrome " . I found CHARGE by watching TV a year ago. Went back to my ENT and he said . " Oh yea, I just never put I all together. It wasn't any ones fault. Each specialist saw as she grew and was dismissed as each " problem " was corrected( the ones that could be). We still see the ENT every 6 months. I recently emailed one of 's " trach nurses " that we haven't seen in years. She emailed me back and said " Oh my gosh, CHARGE came know here years after I stopped seeing . " She now sends me names of new CHARGE families if they want. She said that she believes is a CHARGE kid. We never had a medical diagnosis. is at the age were she wants no part of genetic testing etc. Maybe some day. I know from reading the CHARGE manual that she fits cHARGE. Bonnie and All the " CHARGE family " Yes, I am going to the conference. No, is not going. Yes, I am bringing lots of pictures. I tried to put a " photo life story " (mini version) in one album. The other one I took the frame off the mantle and put all the 8X10's in an album. You can see her each year from 1 to 18. I cried so hard when I put it together. It is the first time I stopped and looked at all ages at once. What a miracle. Her 18 years have each been a miracle of their own. It's hard to belive we will take her to college on Aug. 22. School had been hard work for her, especially math. College is going to be very very hard but she is determined to succeed. Don't every tell she can't do something. Her boyfriend , ( their one year together anniversary is today) is also going to UofA. He is her biggest support system right now. School is pretty easy for him so he will be able to help ( except with her dance classes ) They are in the same dorm. Guys on odd floors, girls on even. is on 6 he is on 5. I am comforted knowing that he won't be too far away. is just another miracle that has happened to this family. I have carried on long enough. I hope every one had a nice July 4th. We did, our son Tom was home and we haven't seen him since Christmas. Blessings and Hug, Lynn Mom to Tom 24, 18 cHARGEr, and wife to Doug Ohio > , > > Oh my gosh, your story is ours almost! My daughter was diagnosed with > CHARGE at the age of 14 also even though she has every characteristic of > CHARGE, just to a lesser degree! She is now 18 and doing well! She had the coanal > atresia, opened 4 times too. As an infant we found out she had the > colobomas, reflux and other things. She was such a sick little one. She got hearing > aids around two. Along the way new things kept popping up no one could explain. > We too were told the same, that all of the things develop at the same time, > yadda, yadda.... > It was hard because she never fit anywhere. We often felt alone, but > Patty felt it the most, especially during that age. I could go on but I think > you know. Then at 14 she was properly diagnosed with CHARGE. I don't want > to make you nervous, but have your daughters heart checked. Patty always had a > heart murmur, but with the diagnosis they checked it out further. She had > something called a PDA, " just a little hole. " Thank God they checked it out, > she had had strep in her blood system 3 times, and other illnesses which could > have been scary. When they fixed it (easily through arteries in the leg/hip > area) the doctors were surprised how large it actually was. Just check it out, > that's all. Oh, and the puberty thing was fun! It still is interesting. > Check that out further. > The diagnosis for Pat was a life altering change for every one of us > in the family. It was such a blessing as well. Pat's education and medical > interventions either changed or were finally understood. But I think the most > important change was we weren't alone. > I don't know where you live but another drastic important change in > our lives was attending the CHARGE Conference. I couldn't believe I was > standing somewhere where there were tons of " little Patty's " everywhere! The same > face, the same behaviors, the same ... just with different degrees! The > feelings and emotions were, and still is, indescribable. Then we went to the sessions > and I couldn't believe how my daughter fit what was said or taught. I could > understand my daughter more than I ever did. I can't describe to people of > the importance of that unless they experience it. The conference is soon, but > will can and will change your lives. If you can find any way to attend, it > would really help. If not, there's another one two years from now. Time does > fly! > Pat is 18 and just graduated. She is still often lonely here in town, > but with the diagnosis came understanding and experienced professionals from > around the country. Pat was able to attend Perkins and New England Deaf/Blind > Center programs. These experiences were more than miraculous. Plus there she > met individuals who she remains in contact with today. She has made some > really good friends. Now she is more confident and happy. Which was hard because > she always has been confident! > I am telling you, with the diagnosis, the conference, and all the > specialist involved with CHARGE and her, life finally made so much sense. She is > Empowered! It is so much easier for Patty now. It's not easy and never will > be, but it is easier! Understanding goes a long way, it's unbelievable. > We are no longer alone, and you aren't as well. > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > Lynn, I hope to see you at the conference. Is coming with you? I > forget. If not don't forget to bring pictures. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Lynn, I cannot wait to see all the pictures...hope I find you! Weir Mom to Kennedy, 5 yr old CHARGEr, 13, 12 and wife to Graeme New Brunswick, Canada http://personal.nbnet.nb.ca/gweir http://www.chargesyndrome.ca Re: Later age diagnosis and Bonnie, Our is 18 and we never had a clear dignosis. Just " Syndrome " . I found CHARGE by watching TV a year ago. Went back to my ENT and he said . " Oh yea, I just never put I all together. It wasn't any ones fault. Each specialist saw as she grew and was dismissed as each " problem " was corrected( the ones that could be). We still see the ENT every 6 months. I recently emailed one of 's " trach nurses " that we haven't seen in years. She emailed me back and said " Oh my gosh, CHARGE came know here years after I stopped seeing . " She now sends me names of new CHARGE families if they want. She said that she believes is a CHARGE kid. We never had a medical diagnosis. is at the age were she wants no part of genetic testing etc. Maybe some day. I know from reading the CHARGE manual that she fits cHARGE. Bonnie and All the " CHARGE family " Yes, I am going to the conference. No, is not going. Yes, I am bringing lots of pictures. I tried to put a " photo life story " (mini version) in one album. The other one I took the frame off the mantle and put all the 8X10's in an album. You can see her each year from 1 to 18. I cried so hard when I put it together. It is the first time I stopped and looked at all ages at once. What a miracle. Her 18 years have each been a miracle of their own. It's hard to belive we will take her to college on Aug. 22. School had been hard work for her, especially math. College is going to be very very hard but she is determined to succeed. Don't every tell she can't do something. Her boyfriend , ( their one year together anniversary is today) is also going to UofA. He is her biggest support system right now. School is pretty easy for him so he will be able to help ( except with her dance classes ) They are in the same dorm. Guys on odd floors, girls on even. is on 6 he is on 5. I am comforted knowing that he won't be too far away. is just another miracle that has happened to this family. I have carried on long enough. I hope every one had a nice July 4th. We did, our son Tom was home and we haven't seen him since Christmas. Blessings and Hug, Lynn Mom to Tom 24, 18 cHARGEr, and wife to Doug Ohio > , > > Oh my gosh, your story is ours almost! My daughter was diagnosed with > CHARGE at the age of 14 also even though she has every characteristic of > CHARGE, just to a lesser degree! She is now 18 and doing well! She had the coanal > atresia, opened 4 times too. As an infant we found out she had the > colobomas, reflux and other things. She was such a sick little one. She got hearing > aids around two. Along the way new things kept popping up no one could explain. > We too were told the same, that all of the things develop at the same time, > yadda, yadda.... > It was hard because she never fit anywhere. We often felt alone, but > Patty felt it the most, especially during that age. I could go on but I think > you know. Then at 14 she was properly diagnosed with CHARGE. I don't want > to make you nervous, but have your daughters heart checked. Patty always had a > heart murmur, but with the diagnosis they checked it out further. She had > something called a PDA, " just a little hole. " Thank God they checked it out, > she had had strep in her blood system 3 times, and other illnesses which could > have been scary. When they fixed it (easily through arteries in the leg/hip > area) the doctors were surprised how large it actually was. Just check it out, > that's all. Oh, and the puberty thing was fun! It still is interesting. > Check that out further. > The diagnosis for Pat was a life altering change for every one of us > in the family. It was such a blessing as well. Pat's education and medical > interventions either changed or were finally understood. But I think the most > important change was we weren't alone. > I don't know where you live but another drastic important change in > our lives was attending the CHARGE Conference. I couldn't believe I was > standing somewhere where there were tons of " little Patty's " everywhere! The same > face, the same behaviors, the same ... just with different degrees! The > feelings and emotions were, and still is, indescribable. Then we went to the sessions > and I couldn't believe how my daughter fit what was said or taught. I could > understand my daughter more than I ever did. I can't describe to people of > the importance of that unless they experience it. The conference is soon, but > will can and will change your lives. If you can find any way to attend, it > would really help. If not, there's another one two years from now. Time does > fly! > Pat is 18 and just graduated. She is still often lonely here in town, > but with the diagnosis came understanding and experienced professionals from > around the country. Pat was able to attend Perkins and New England Deaf/Blind > Center programs. These experiences were more than miraculous. Plus there she > met individuals who she remains in contact with today. She has made some > really good friends. Now she is more confident and happy. Which was hard because > she always has been confident! > I am telling you, with the diagnosis, the conference, and all the > specialist involved with CHARGE and her, life finally made so much sense. She is > Empowered! It is so much easier for Patty now. It's not easy and never will > be, but it is easier! Understanding goes a long way, it's unbelievable. > We are no longer alone, and you aren't as well. > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > Lynn, I hope to see you at the conference. Is coming with you? I > forget. If not don't forget to bring pictures. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 , Some how I will find you. I have no idea how but where there is a will there is a way. I am rooming with Kim Lauger if that helps. I will be coming in Friday AM for breakfast and the rest of the weekend. Thanks for thinking of . Lynn Pierpont,Ohio > > , > > > > Oh my gosh, your story is ours almost! My daughter was > diagnosed with > > CHARGE at the age of 14 also even though she has every > characteristic of > > CHARGE, just to a lesser degree! She is now 18 and doing well! > She had the coanal > > atresia, opened 4 times too. As an infant we found out she had > the > > colobomas, reflux and other things. She was such a sick little > one. She got hearing > > aids around two. Along the way new things kept popping up no one > could explain. > > We too were told the same, that all of the things develop at the > same time, > > yadda, yadda.... > > It was hard because she never fit anywhere. We often felt > alone, but > > Patty felt it the most, especially during that age. I could go on > but I think > > you know. Then at 14 she was properly diagnosed with CHARGE. I > don't want > > to make you nervous, but have your daughters heart checked. Patty > always had a > > heart murmur, but with the diagnosis they checked it out further. > She had > > something called a PDA, " just a little hole. " Thank God they > checked it out, > > she had had strep in her blood system 3 times, and other illnesses > which could > > have been scary. When they fixed it (easily through arteries in > the leg/hip > > area) the doctors were surprised how large it actually was. Just > check it out, > > that's all. Oh, and the puberty thing was fun! It still is > interesting. > > Check that out further. > > The diagnosis for Pat was a life altering change for every > one of us > > in the family. It was such a blessing as well. Pat's education > and medical > > interventions either changed or were finally understood. But I > think the most > > important change was we weren't alone. > > I don't know where you live but another drastic important > change in > > our lives was attending the CHARGE Conference. I couldn't believe > I was > > standing somewhere where there were tons of " little Patty's " > everywhere! The same > > face, the same behaviors, the same ... just with different > degrees! The > > feelings and emotions were, and still is, indescribable. Then we > went to the sessions > > and I couldn't believe how my daughter fit what was said or > taught. I could > > understand my daughter more than I ever did. I can't describe to > people of > > the importance of that unless they experience it. The conference > is soon, but > > will can and will change your lives. If you can find any way to > attend, it > > would really help. If not, there's another one two years from > now. Time does > > fly! > > Pat is 18 and just graduated. She is still often lonely > here in town, > > but with the diagnosis came understanding and experienced > professionals from > > around the country. Pat was able to attend Perkins and New > England Deaf/Blind > > Center programs. These experiences were more than miraculous. Plus > there she > > met individuals who she remains in contact with today. She has > made some > > really good friends. Now she is more confident and happy. Which > was hard because > > she always has been confident! > > I am telling you, with the diagnosis, the conference, and > all the > > specialist involved with CHARGE and her, life finally made so much > sense. She is > > Empowered! It is so much easier for Patty now. It's not easy and > never will > > be, but it is easier! Understanding goes a long way, it's > unbelievable. > > We are no longer alone, and you aren't as well. > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > Lynn, I hope to see you at the conference. Is coming with > you? I > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 You can email me directly if you would like. I would love to talk with you. (Mom to 20 1/2 year old cHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 I feel like maybe wearing a Canadian Flag hat/shirt so new people will know it's me! We all wear name-tags so I guess we'll just be looking at people's shirts instead of their faces! Weir Mom to Kennedy, 5 yr old CHARGEr, 13, 12 and wife to Graeme New Brunswick, Canada http://personal.nbnet.nb.ca/gweir http://www.chargesyndrome.ca Re: Later age diagnosis , Some how I will find you. I have no idea how but where there is a will there is a way. I am rooming with Kim Lauger if that helps. I will be coming in Friday AM for breakfast and the rest of the weekend. Thanks for thinking of . Lynn Pierpont,Ohio > > , > > > > Oh my gosh, your story is ours almost! My daughter was > diagnosed with > > CHARGE at the age of 14 also even though she has every > characteristic of > > CHARGE, just to a lesser degree! She is now 18 and doing well! > She had the coanal > > atresia, opened 4 times too. As an infant we found out she had > the > > colobomas, reflux and other things. She was such a sick little > one. She got hearing > > aids around two. Along the way new things kept popping up no one > could explain. > > We too were told the same, that all of the things develop at the > same time, > > yadda, yadda.... > > It was hard because she never fit anywhere. We often felt > alone, but > > Patty felt it the most, especially during that age. I could go on > but I think > > you know. Then at 14 she was properly diagnosed with CHARGE. I > don't want > > to make you nervous, but have your daughters heart checked. Patty > always had a > > heart murmur, but with the diagnosis they checked it out further. > She had > > something called a PDA, " just a little hole. " Thank God they > checked it out, > > she had had strep in her blood system 3 times, and other illnesses > which could > > have been scary. When they fixed it (easily through arteries in > the leg/hip > > area) the doctors were surprised how large it actually was. Just > check it out, > > that's all. Oh, and the puberty thing was fun! It still is > interesting. > > Check that out further. > > The diagnosis for Pat was a life altering change for every > one of us > > in the family. It was such a blessing as well. Pat's education > and medical > > interventions either changed or were finally understood. But I > think the most > > important change was we weren't alone. > > I don't know where you live but another drastic important > change in > > our lives was attending the CHARGE Conference. I couldn't believe > I was > > standing somewhere where there were tons of " little Patty's " > everywhere! The same > > face, the same behaviors, the same ... just with different > degrees! The > > feelings and emotions were, and still is, indescribable. Then we > went to the sessions > > and I couldn't believe how my daughter fit what was said or > taught. I could > > understand my daughter more than I ever did. I can't describe to > people of > > the importance of that unless they experience it. The conference > is soon, but > > will can and will change your lives. If you can find any way to > attend, it > > would really help. If not, there's another one two years from > now. Time does > > fly! > > Pat is 18 and just graduated. She is still often lonely > here in town, > > but with the diagnosis came understanding and experienced > professionals from > > around the country. Pat was able to attend Perkins and New > England Deaf/Blind > > Center programs. These experiences were more than miraculous. Plus > there she > > met individuals who she remains in contact with today. She has > made some > > really good friends. Now she is more confident and happy. Which > was hard because > > she always has been confident! > > I am telling you, with the diagnosis, the conference, and > all the > > specialist involved with CHARGE and her, life finally made so much > sense. She is > > Empowered! It is so much easier for Patty now. It's not easy and > never will > > be, but it is easier! Understanding goes a long way, it's > unbelievable. > > We are no longer alone, and you aren't as well. > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > Lynn, I hope to see you at the conference. Is coming with > you? I > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 : Is the dress for the conference mostly casual? How's the weather in Ohio? Sue Grandma to Sierra 14 months Re: Later age diagnosis , Some how I will find you. I have no idea how but where there is a will there is a way. I am rooming with Kim Lauger if that helps. I will be coming in Friday AM for breakfast and the rest of the weekend. Thanks for thinking of . Lynn Pierpont,Ohio > > , > > > > Oh my gosh, your story is ours almost! My daughter was > diagnosed with > > CHARGE at the age of 14 also even though she has every > characteristic of > > CHARGE, just to a lesser degree! She is now 18 and doing well! > She had the coanal > > atresia, opened 4 times too. As an infant we found out she had > the > > colobomas, reflux and other things. She was such a sick little > one. She got hearing > > aids around two. Along the way new things kept popping up no one > could explain. > > We too were told the same, that all of the things develop at the > same time, > > yadda, yadda.... > > It was hard because she never fit anywhere. We often felt > alone, but > > Patty felt it the most, especially during that age. I could go on > but I think > > you know. Then at 14 she was properly diagnosed with CHARGE. I > don't want > > to make you nervous, but have your daughters heart checked. Patty > always had a > > heart murmur, but with the diagnosis they checked it out further. > She had > > something called a PDA, " just a little hole. " Thank God they > checked it out, > > she had had strep in her blood system 3 times, and other illnesses > which could > > have been scary. When they fixed it (easily through arteries in > the leg/hip > > area) the doctors were surprised how large it actually was. Just > check it out, > > that's all. Oh, and the puberty thing was fun! It still is > interesting. > > Check that out further. > > The diagnosis for Pat was a life altering change for every > one of us > > in the family. It was such a blessing as well. Pat's education > and medical > > interventions either changed or were finally understood. But I > think the most > > important change was we weren't alone. > > I don't know where you live but another drastic important > change in > > our lives was attending the CHARGE Conference. I couldn't believe > I was > > standing somewhere where there were tons of " little Patty's " > everywhere! The same > > face, the same behaviors, the same ... just with different > degrees! The > > feelings and emotions were, and still is, indescribable. Then we > went to the sessions > > and I couldn't believe how my daughter fit what was said or > taught. I could > > understand my daughter more than I ever did. I can't describe to > people of > > the importance of that unless they experience it. The conference > is soon, but > > will can and will change your lives. If you can find any way to > attend, it > > would really help. If not, there's another one two years from > now. Time does > > fly! > > Pat is 18 and just graduated. She is still often lonely > here in town, > > but with the diagnosis came understanding and experienced > professionals from > > around the country. Pat was able to attend Perkins and New > England Deaf/Blind > > Center programs. These experiences were more than miraculous. Plus > there she > > met individuals who she remains in contact with today. She has > made some > > really good friends. Now she is more confident and happy. Which > was hard because > > she always has been confident! > > I am telling you, with the diagnosis, the conference, and > all the > > specialist involved with CHARGE and her, life finally made so much > sense. She is > > Empowered! It is so much easier for Patty now. It's not easy and > never will > > be, but it is easier! Understanding goes a long way, it's > unbelievable. > > We are no longer alone, and you aren't as well. > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > Lynn, I hope to see you at the conference. Is coming with > you? I > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Sue, ABSOLUTELY, there is no " dress code " - you will see people in shorts & t-shirts and some in skirts, etc. It's completely up to the individual, be comfortable! I'm not sure about the weather in Ohio, I know Indianapolis was pretty hot (to me, a Canadian gal from up north!) and it's pretty close geographically so I'm assuming Ohio is pretty warm as well. One thing to bear in mind though is that the hotels are air conditioned. When I went to my first conference in Houston 4 years ago, I FROZE in the hotel as the A/C was very high and I didn't bring a single sweater with sleeves, etc as I figured " hey, it's Houston, I will be ROASTING! " .... I guess that's all I have to say about conference " wear " ... Can't wait to meet you all... Weir Mom to Kennedy, 5 yr old CHARGEr, 13, 12 and wife to Graeme New Brunswick, Canada http://personal.nbnet.nb.ca/gweir http://www.chargesyndrome.ca Re: Later age diagnosis , Some how I will find you. I have no idea how but where there is a will there is a way. I am rooming with Kim Lauger if that helps. I will be coming in Friday AM for breakfast and the rest of the weekend. Thanks for thinking of . Lynn Pierpont,Ohio > > , > > > > Oh my gosh, your story is ours almost! My daughter was > diagnosed with > > CHARGE at the age of 14 also even though she has every > characteristic of > > CHARGE, just to a lesser degree! She is now 18 and doing well! > She had the coanal > > atresia, opened 4 times too. As an infant we found out she had > the > > colobomas, reflux and other things. She was such a sick little > one. She got hearing > > aids around two. Along the way new things kept popping up no one > could explain. > > We too were told the same, that all of the things develop at the > same time, > > yadda, yadda.... > > It was hard because she never fit anywhere. We often felt > alone, but > > Patty felt it the most, especially during that age. I could go on > but I think > > you know. Then at 14 she was properly diagnosed with CHARGE. I > don't want > > to make you nervous, but have your daughters heart checked. Patty > always had a > > heart murmur, but with the diagnosis they checked it out further. > She had > > something called a PDA, " just a little hole. " Thank God they > checked it out, > > she had had strep in her blood system 3 times, and other illnesses > which could > > have been scary. When they fixed it (easily through arteries in > the leg/hip > > area) the doctors were surprised how large it actually was. Just > check it out, > > that's all. Oh, and the puberty thing was fun! It still is > interesting. > > Check that out further. > > The diagnosis for Pat was a life altering change for every > one of us > > in the family. It was such a blessing as well. Pat's education > and medical > > interventions either changed or were finally understood. But I > think the most > > important change was we weren't alone. > > I don't know where you live but another drastic important > change in > > our lives was attending the CHARGE Conference. I couldn't believe > I was > > standing somewhere where there were tons of " little Patty's " > everywhere! The same > > face, the same behaviors, the same ... just with different > degrees! The > > feelings and emotions were, and still is, indescribable. Then we > went to the sessions > > and I couldn't believe how my daughter fit what was said or > taught. I could > > understand my daughter more than I ever did. I can't describe to > people of > > the importance of that unless they experience it. The conference > is soon, but > > will can and will change your lives. If you can find any way to > attend, it > > would really help. If not, there's another one two years from > now. Time does > > fly! > > Pat is 18 and just graduated. She is still often lonely > here in town, > > but with the diagnosis came understanding and experienced > professionals from > > around the country. Pat was able to attend Perkins and New > England Deaf/Blind > > Center programs. These experiences were more than miraculous. Plus > there she > > met individuals who she remains in contact with today. She has > made some > > really good friends. Now she is more confident and happy. Which > was hard because > > she always has been confident! > > I am telling you, with the diagnosis, the conference, and > all the > > specialist involved with CHARGE and her, life finally made so much > sense. She is > > Empowered! It is so much easier for Patty now. It's not easy and > never will > > be, but it is easier! Understanding goes a long way, it's > unbelievable. > > We are no longer alone, and you aren't as well. > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > Lynn, I hope to see you at the conference. Is coming with > you? I > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Sue, I can answer the weather question. So far in July it has been 80 to 85 each day. Some areas hit 90. We have had lots of rain and storms. Ohio weather changes so you may want to ask again the week of the conference. www.newsnet5.com has good weather reports and radar. Lynn Pierpont, Ohio > > > , > > > > > > Oh my gosh, your story is ours almost! My daughter was > > diagnosed with > > > CHARGE at the age of 14 also even though she has every > > characteristic of > > > CHARGE, just to a lesser degree! She is now 18 and doing well! > > She had the coanal > > > atresia, opened 4 times too. As an infant we found out she had > > the > > > colobomas, reflux and other things. She was such a sick little > > one. She got hearing > > > aids around two. Along the way new things kept popping up no > one > > could explain. > > > We too were told the same, that all of the things develop at > the > > same time, > > > yadda, yadda.... > > > It was hard because she never fit anywhere. We often > felt > > alone, but > > > Patty felt it the most, especially during that age. I could > go on > > but I think > > > you know. Then at 14 she was properly diagnosed with CHARGE. > I > > don't want > > > to make you nervous, but have your daughters heart checked. > Patty > > always had a > > > heart murmur, but with the diagnosis they checked it out > further. > > She had > > > something called a PDA, " just a little hole. " Thank God they > > checked it out, > > > she had had strep in her blood system 3 times, and other > illnesses > > which could > > > have been scary. When they fixed it (easily through arteries > in > > the leg/hip > > > area) the doctors were surprised how large it actually was. > Just > > check it out, > > > that's all. Oh, and the puberty thing was fun! It still is > > interesting. > > > Check that out further. > > > The diagnosis for Pat was a life altering change for > every > > one of us > > > in the family. It was such a blessing as well. Pat's > education > > and medical > > > interventions either changed or were finally understood. But I > > think the most > > > important change was we weren't alone. > > > I don't know where you live but another drastic > important > > change in > > > our lives was attending the CHARGE Conference. I couldn't > believe > > I was > > > standing somewhere where there were tons of " little Patty's " > > everywhere! The same > > > face, the same behaviors, the same ... just with different > > degrees! The > > > feelings and emotions were, and still is, indescribable. Then > we > > went to the sessions > > > and I couldn't believe how my daughter fit what was said or > > taught. I could > > > understand my daughter more than I ever did. I can't describe > to > > people of > > > the importance of that unless they experience it. The > conference > > is soon, but > > > will can and will change your lives. If you can find any way to > > attend, it > > > would really help. If not, there's another one two years from > > now. Time does > > > fly! > > > Pat is 18 and just graduated. She is still often lonely > > here in town, > > > but with the diagnosis came understanding and experienced > > professionals from > > > around the country. Pat was able to attend Perkins and New > > England Deaf/Blind > > > Center programs. These experiences were more than miraculous. > Plus > > there she > > > met individuals who she remains in contact with today. She has > > made some > > > really good friends. Now she is more confident and happy. > Which > > was hard because > > > she always has been confident! > > > I am telling you, with the diagnosis, the conference, > and > > all the > > > specialist involved with CHARGE and her, life finally made so > much > > sense. She is > > > Empowered! It is so much easier for Patty now. It's not easy > and > > never will > > > be, but it is easier! Understanding goes a long way, it's > > unbelievable. > > > We are no longer alone, and you aren't as well. > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > Lynn, I hope to see you at the conference. Is coming > with > > you? I > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 I add that one of the nice things about these conferences is that we are all very comfortable with each other. No need for pretension. Not everyone always behaves appropriately in public, sometimes just the strain of traveling is too much for some families to worry about perfectly coifed hair ;-) etc. Sometimes if there is a dance some people will dress up a little more. I am not sure if that will be necessary for the Saturday night activity (Carnival). Suit yourself and most importantly dress for comfort. See you there, Anne, mom of Penina (CHARGE 6 3/4) Weir wrote: > Sue, > ABSOLUTELY, there is no " dress code " - you will see people in shorts & > T-shirts and some in skirts, etc. It's completely up to the > individual, be > comfortable! > I'm not sure about the weather in Ohio, I know Indianapolis was pretty hot > (to me, a Canadian gal from up north!) and it's pretty close > geographically > so I'm assuming Ohio is pretty warm as well. One thing to bear in mind > though is that the hotels are air conditioned. When I went to my first > conference in Houston 4 years ago, I FROZE in the hotel as the A/C was > very > high and I didn't bring a single sweater with sleeves, etc. as I figured > " hey, it's Houston, I will be ROASTING! " .... > I guess that's all I have to say about conference " wear " ... Can't > wait to > meet you all... > > Weir > Mom to Kennedy, 5 yr old CHARGEr, 13, 12 and wife to Graeme > New Brunswick, Canada > http://personal.nbnet.nb.ca/gweir > http://www.chargesyndrome.ca > > Re: Later age diagnosis > > > , > Some how I will find you. I have no idea how but where there is a > will there is a way. I am rooming with Kim Lauger if that helps. I > will be coming in Friday AM for breakfast and the rest of the > weekend. > Thanks for thinking of . > Lynn > Pierpont,Ohio > > > > > , > > > > > > Oh my gosh, your story is ours almost! My daughter was > > diagnosed with > > > CHARGE at the age of 14 also even though she has every > > characteristic of > > > CHARGE, just to a lesser degree! She is now 18 and doing well! > > She had the coanal > > > atresia, opened 4 times too. As an infant we found out she had > > the > > > colobomas, reflux and other things. She was such a sick little > > one. She got hearing > > > aids around two. Along the way new things kept popping up no > one > > could explain. > > > We too were told the same, that all of the things develop at > the > > same time, > > > yadda, yadda.... > > > It was hard because she never fit anywhere. We often > felt > > alone, but > > > Patty felt it the most, especially during that age. I could > go on > > but I think > > > you know. Then at 14 she was properly diagnosed with CHARGE. > I > > don't want > > > to make you nervous, but have your daughters heart checked. > Patty > > always had a > > > heart murmur, but with the diagnosis they checked it out > further. > > She had > > > something called a PDA, " just a little hole. " Thank God they > > checked it out, > > > she had had strep in her blood system 3 times, and other > illnesses > > which could > > > have been scary. When they fixed it (easily through arteries > in > > the leg/hip > > > area) the doctors were surprised how large it actually was. > Just > > check it out, > > > that's all. Oh, and the puberty thing was fun! It still is > > interesting. > > > Check that out further. > > > The diagnosis for Pat was a life altering change for > every > > one of us > > > in the family. It was such a blessing as well. Pat's > education > > and medical > > > interventions either changed or were finally understood. But I > > think the most > > > important change was we weren't alone. > > > I don't know where you live but another drastic > important > > change in > > > our lives was attending the CHARGE Conference. I couldn't > believe > > I was > > > standing somewhere where there were tons of " little Patty's " > > everywhere! The same > > > face, the same behaviors, the same ... just with different > > degrees! The > > > feelings and emotions were, and still is, indescribable. Then > we > > went to the sessions > > > and I couldn't believe how my daughter fit what was said or > > taught. I could > > > understand my daughter more than I ever did. I can't describe > to > > people of > > > the importance of that unless they experience it. The > conference > > is soon, but > > > will can and will change your lives. If you can find any way to > > attend, it > > > would really help. If not, there's another one two years from > > now. Time does > > > fly! > > > Pat is 18 and just graduated. She is still often lonely > > here in town, > > > but with the diagnosis came understanding and experienced > > professionals from > > > around the country. Pat was able to attend Perkins and New > > England Deaf/Blind > > > Center programs. These experiences were more than miraculous. > Plus > > there she > > > met individuals who she remains in contact with today. She has > > made some > > > really good friends. Now she is more confident and happy. > Which > > was hard because > > > she always has been confident! > > > I am telling you, with the diagnosis, the conference, > and > > all the > > > specialist involved with CHARGE and her, life finally made so > much > > sense. She is > > > Empowered! It is so much easier for Patty now. It's not easy > and > > never will > > > be, but it is easier! Understanding goes a long way, it's > > unbelievable. > > > We are no longer alone, and you aren't as well. > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > Lynn, I hope to see you at the conference. Is coming > with > > you? I > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Thanks, Lynn. I will look at the weather at the beginning of the week of the conference. My kids and I are looking forward to meeting all of you and learning more about CHARGE. Sue Grandma to Sierra 14 months (CHARGE) Re: Later age diagnosis Sue, I can answer the weather question. So far in July it has been 80 to 85 each day. Some areas hit 90. We have had lots of rain and storms. Ohio weather changes so you may want to ask again the week of the conference. www.newsnet5.com has good weather reports and radar. Lynn Pierpont, Ohio > > > , > > > > > > Oh my gosh, your story is ours almost! My daughter was > > diagnosed with > > > CHARGE at the age of 14 also even though she has every > > characteristic of > > > CHARGE, just to a lesser degree! She is now 18 and doing well! > > She had the coanal > > > atresia, opened 4 times too. As an infant we found out she had > > the > > > colobomas, reflux and other things. She was such a sick little > > one. She got hearing > > > aids around two. Along the way new things kept popping up no > one > > could explain. > > > We too were told the same, that all of the things develop at > the > > same time, > > > yadda, yadda.... > > > It was hard because she never fit anywhere. We often > felt > > alone, but > > > Patty felt it the most, especially during that age. I could > go on > > but I think > > > you know. Then at 14 she was properly diagnosed with CHARGE. > I > > don't want > > > to make you nervous, but have your daughters heart checked. > Patty > > always had a > > > heart murmur, but with the diagnosis they checked it out > further. > > She had > > > something called a PDA, " just a little hole. " Thank God they > > checked it out, > > > she had had strep in her blood system 3 times, and other > illnesses > > which could > > > have been scary. When they fixed it (easily through arteries > in > > the leg/hip > > > area) the doctors were surprised how large it actually was. > Just > > check it out, > > > that's all. Oh, and the puberty thing was fun! It still is > > interesting. > > > Check that out further. > > > The diagnosis for Pat was a life altering change for > every > > one of us > > > in the family. It was such a blessing as well. Pat's > education > > and medical > > > interventions either changed or were finally understood. But I > > think the most > > > important change was we weren't alone. > > > I don't know where you live but another drastic > important > > change in > > > our lives was attending the CHARGE Conference. I couldn't > believe > > I was > > > standing somewhere where there were tons of " little Patty's " > > everywhere! The same > > > face, the same behaviors, the same ... just with different > > degrees! The > > > feelings and emotions were, and still is, indescribable. Then > we > > went to the sessions > > > and I couldn't believe how my daughter fit what was said or > > taught. I could > > > understand my daughter more than I ever did. I can't describe > to > > people of > > > the importance of that unless they experience it. The > conference > > is soon, but > > > will can and will change your lives. If you can find any way to > > attend, it > > > would really help. If not, there's another one two years from > > now. Time does > > > fly! > > > Pat is 18 and just graduated. She is still often lonely > > here in town, > > > but with the diagnosis came understanding and experienced > > professionals from > > > around the country. Pat was able to attend Perkins and New > > England Deaf/Blind > > > Center programs. These experiences were more than miraculous. > Plus > > there she > > > met individuals who she remains in contact with today. She has > > made some > > > really good friends. Now she is more confident and happy. > Which > > was hard because > > > she always has been confident! > > > I am telling you, with the diagnosis, the conference, > and > > all the > > > specialist involved with CHARGE and her, life finally made so > much > > sense. She is > > > Empowered! It is so much easier for Patty now. It's not easy > and > > never will > > > be, but it is easier! Understanding goes a long way, it's > > unbelievable. > > > We are no longer alone, and you aren't as well. > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > Lynn, I hope to see you at the conference. Is coming > with > > you? I > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Hi! Can I ask what you did for in school? Did you have a paraprofessional work with her? Does she have a hearing loss? What school is she attending? Do they have staff available to help her due to her deficit? Sorry I am asking so many questions. Just looking for answers and curious how you handled them. Thanks , mom to Brent 17, le 14 charge?, Breanna 4 and wife to Dan Re: Later age diagnosis and Bonnie, Our is 18 and we never had a clear dignosis. Just " Syndrome " . I found CHARGE by watching TV a year ago. Went back to my ENT and he said . " Oh yea, I just never put I all together. It wasn't any ones fault. Each specialist saw as she grew and was dismissed as each " problem " was corrected( the ones that could be). We still see the ENT every 6 months. I recently emailed one of 's " trach nurses " that we haven't seen in years. She emailed me back and said " Oh my gosh, CHARGE came know here years after I stopped seeing . " She now sends me names of new CHARGE families if they want. She said that she believes is a CHARGE kid. We never had a medical diagnosis. is at the age were she wants no part of genetic testing etc. Maybe some day. I know from reading the CHARGE manual that she fits cHARGE. Bonnie and All the " CHARGE family " Yes, I am going to the conference. No, is not going. Yes, I am bringing lots of pictures. I tried to put a " photo life story " (mini version) in one album. The other one I took the frame off the mantle and put all the 8X10's in an album. You can see her each year from 1 to 18. I cried so hard when I put it together. It is the first time I stopped and looked at all ages at once. What a miracle. Her 18 years have each been a miracle of their own. It's hard to belive we will take her to college on Aug. 22. School had been hard work for her, especially math. College is going to be very very hard but she is determined to succeed. Don't every tell she can't do something. Her boyfriend , ( their one year together anniversary is today) is also going to UofA. He is her biggest support system right now. School is pretty easy for him so he will be able to help ( except with her dance classes ) They are in the same dorm. Guys on odd floors, girls on even. is on 6 he is on 5. I am comforted knowing that he won't be too far away. is just another miracle that has happened to this family. I have carried on long enough. I hope every one had a nice July 4th. We did, our son Tom was home and we haven't seen him since Christmas. Blessings and Hug, Lynn Mom to Tom 24, 18 cHARGEr, and wife to Doug Ohio > , > > Oh my gosh, your story is ours almost! My daughter was diagnosed with > CHARGE at the age of 14 also even though she has every characteristic of > CHARGE, just to a lesser degree! She is now 18 and doing well! She had the coanal > atresia, opened 4 times too. As an infant we found out she had the > colobomas, reflux and other things. She was such a sick little one. She got hearing > aids around two. Along the way new things kept popping up no one could explain. > We too were told the same, that all of the things develop at the same time, > yadda, yadda.... > It was hard because she never fit anywhere. We often felt alone, but > Patty felt it the most, especially during that age. I could go on but I think > you know. Then at 14 she was properly diagnosed with CHARGE. I don't want > to make you nervous, but have your daughters heart checked. Patty always had a > heart murmur, but with the diagnosis they checked it out further. She had > something called a PDA, " just a little hole. " Thank God they checked it out, > she had had strep in her blood system 3 times, and other illnesses which could > have been scary. When they fixed it (easily through arteries in the leg/hip > area) the doctors were surprised how large it actually was. Just check it out, > that's all. Oh, and the puberty thing was fun! It still is interesting. > Check that out further. > The diagnosis for Pat was a life altering change for every one of us > in the family. It was such a blessing as well. Pat's education and medical > interventions either changed or were finally understood. But I think the most > important change was we weren't alone. > I don't know where you live but another drastic important change in > our lives was attending the CHARGE Conference. I couldn't believe I was > standing somewhere where there were tons of " little Patty's " everywhere! The same > face, the same behaviors, the same ... just with different degrees! The > feelings and emotions were, and still is, indescribable. Then we went to the sessions > and I couldn't believe how my daughter fit what was said or taught. I could > understand my daughter more than I ever did. I can't describe to people of > the importance of that unless they experience it. The conference is soon, but > will can and will change your lives. If you can find any way to attend, it > would really help. If not, there's another one two years from now. Time does > fly! > Pat is 18 and just graduated. She is still often lonely here in town, > but with the diagnosis came understanding and experienced professionals from > around the country. Pat was able to attend Perkins and New England Deaf/Blind > Center programs. These experiences were more than miraculous. Plus there she > met individuals who she remains in contact with today. She has made some > really good friends. Now she is more confident and happy. Which was hard because > she always has been confident! > I am telling you, with the diagnosis, the conference, and all the > specialist involved with CHARGE and her, life finally made so much sense. She is > Empowered! It is so much easier for Patty now. It's not easy and never will > be, but it is easier! Understanding goes a long way, it's unbelievable. > We are no longer alone, and you aren't as well. > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > Lynn, I hope to see you at the conference. Is coming with you? I > forget. If not don't forget to bring pictures. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Thank you - I will be E-mailing you soon. I really appreciate this. (mom to Brent 17, le 14 charge?, Breanna 4 and wife to Dan) Re: Later age diagnosis You can email me directly if you would like. I would love to talk with you. (Mom to 20 1/2 year old cHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Lynn- Wow... what a mom you are... everyone here is! I just wanted to let you know that as I read what you wrote about I got chills... can you imagine how different her life would have been had YOU not been her mother?! What you've done (and continue to do) for her is inspiring. Kristi Swann Mommy to Gracie 12 weeks, wife to & Dog mom to Sophie :-) Roseville, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 , I don't mind questions. I sure wish I had had someone to ask years ago. 's cognative abilities are " average " and " below average " in math. According to the doctors 18 years ago that is just one of her many miracles. I agree. Brief ( if that is possible) history: trach went in at 6 mo. so language was next to impossible at that time. At 16 mo. she just pointed and grunted. I wasn't happy. There was no group or support to ask but thank heavens as a sp. ed. teacher I knew there had to be something out there so I started looking on my own. Ashtabula has a Speech,Hearing and Rehab. Center. I talked with them but they couldn't take until she was 2yrs. old. A wonderful speech therapist gave me a sign language book to take home and use on my own till then. It help a lot. At 2 she started special pre. school two days per week. She learned sign while Noreen worked with on ducking her chin to produce sound( all it was was noise, but it was beautiful). ( They didn't have filters then). She had play, socialization, speech and lang. therapy etc. was the first kid that they had that needed sign so the whole staff and I learned it together. Their willingness to meet her needs was fantastic. I spent the other days at home doing all the things the preschool did. Her hearing loss went undetected till she was almost three because of the trach and all the other more urgent health concerns. Hearing aids at 3 1/2 years. 45% lose bilaterally. The trach came out about the same time so language training began. By 4 1/2 most signing was gone and she spoke most needs etc. Her voice quality is and always will be airy, soft, and slightly hoarse. Speech twice a week and I worked at home. Speech and Language training in Reg. school once per week was all I could get for her.(She was language delayed till about 5th grade. She had a Speech and language IEP till then) I worked at home. till age 10 I paid privately for speech and lang. summers three times per week and I worked at home daily. To answer your question, I guess I was the parent/teacher/paraprofessional all in one for about 12 years.If you ask she will tell you I was a " Pain in the @** " I pushed her really hard to speak properly. It paid off. Since junior high has been her own advocate and asked for help as needed. attended reg. school without special assistance. She now can " make it on her own with hard work. " She had preferencial seating in school but usually didn't need it. She will attend the University of Akron. The Uof A provides tutoring services to all students( another miracle). will just have to go get it if she needs it. She should be willing to ask for help. I have said many time how blessed we have been that 's problems have been " just medical " . We missed the cognitive and behavioral issues. Until a year ago when I joined this list I never realized how blessed we have been. My friends with " normal " children seem to think I am some kind of saint to have seen through 27 surgeries. I just wish they would read the stories here. The other parents are the " saints " . Hope this helps. There is far to much to write about here. Lynn Ohio > > , > > > > Oh my gosh, your story is ours almost! My daughter was > diagnosed with > > CHARGE at the age of 14 also even though she has every > characteristic of > > CHARGE, just to a lesser degree! She is now 18 and doing well! > She had the coanal > > atresia, opened 4 times too. As an infant we found out she had > the > > colobomas, reflux and other things. She was such a sick little > one. She got hearing > > aids around two. Along the way new things kept popping up no one > could explain. > > We too were told the same, that all of the things develop at the > same time, > > yadda, yadda.... > > It was hard because she never fit anywhere. We often felt > alone, but > > Patty felt it the most, especially during that age. I could go on > but I think > > you know. Then at 14 she was properly diagnosed with CHARGE. I > don't want > > to make you nervous, but have your daughters heart checked. Patty > always had a > > heart murmur, but with the diagnosis they checked it out further. > She had > > something called a PDA, " just a little hole. " Thank God they > checked it out, > > she had had strep in her blood system 3 times, and other illnesses > which could > > have been scary. When they fixed it (easily through arteries in > the leg/hip > > area) the doctors were surprised how large it actually was. Just > check it out, > > that's all. Oh, and the puberty thing was fun! It still is > interesting. > > Check that out further. > > The diagnosis for Pat was a life altering change for every > one of us > > in the family. It was such a blessing as well. Pat's education > and medical > > interventions either changed or were finally understood. But I > think the most > > important change was we weren't alone. > > I don't know where you live but another drastic important > change in > > our lives was attending the CHARGE Conference. I couldn't believe > I was > > standing somewhere where there were tons of " little Patty's " > everywhere! The same > > face, the same behaviors, the same ... just with different > degrees! The > > feelings and emotions were, and still is, indescribable. Then we > went to the sessions > > and I couldn't believe how my daughter fit what was said or > taught. I could > > understand my daughter more than I ever did. I can't describe to > people of > > the importance of that unless they experience it. The conference > is soon, but > > will can and will change your lives. If you can find any way to > attend, it > > would really help. If not, there's another one two years from > now. Time does > > fly! > > Pat is 18 and just graduated. She is still often lonely > here in town, > > but with the diagnosis came understanding and experienced > professionals from > > around the country. Pat was able to attend Perkins and New > England Deaf/Blind > > Center programs. These experiences were more than miraculous. Plus > there she > > met individuals who she remains in contact with today. She has > made some > > really good friends. Now she is more confident and happy. Which > was hard because > > she always has been confident! > > I am telling you, with the diagnosis, the conference, and > all the > > specialist involved with CHARGE and her, life finally made so much > sense. She is > > Empowered! It is so much easier for Patty now. It's not easy and > never will > > be, but it is easier! Understanding goes a long way, it's > unbelievable. > > We are no longer alone, and you aren't as well. > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > Lynn, I hope to see you at the conference. Is coming with > you? I > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Lynn, all I can say is WOW!!!! Talk about a parent advocate--how lucky is and was to have you as a parent. I feel guuilty for not working enough with Timmy--it was alot easier when he was the only one--plus he gets so much at school he didn't want to do it at home too. see you in cleaveland. maria and the guys Re: Later age diagnosis > , > I don't mind questions. I sure wish I had had someone to ask > years ago. > 's cognative abilities are " average " and " below average " in > math. According to the doctors 18 years ago that is just one of her > many miracles. I agree. > Brief ( if that is possible) history: trach went in at 6 mo. so > language was next to impossible at that time. At 16 mo. she just > pointed and grunted. I wasn't happy. There was no group or support > to ask but thank heavens as a sp. ed. teacher I knew there had to be > something out there so I started looking on my own. Ashtabula has a > Speech,Hearing and Rehab. Center. I talked with them but they > couldn't take until she was 2yrs. old. A wonderful speech > therapist gave me a sign language book to take home and use on my > own till then. It help a lot. At 2 she started special pre. school > two days per week. She learned sign while Noreen worked with > on ducking her chin to produce sound( all it was was noise, but it > was beautiful). ( They didn't have filters then). She had play, > socialization, speech and lang. therapy etc. was the first > kid that they had that needed sign so the whole staff and I learned > it together. Their willingness to meet her needs was fantastic. I > spent the other days at home doing all the things the preschool > did. Her hearing loss went undetected till she was almost three > because of the trach and all the other more urgent health concerns. > Hearing aids at 3 1/2 years. 45% lose bilaterally. The trach came > out about the same time so language training began. By 4 1/2 most > signing was gone and she spoke most needs etc. Her voice quality is > and always will be airy, soft, and slightly hoarse. Speech twice a > week and I worked at home. > Speech and Language training in Reg. school once per week was > all I could get for her.(She was language delayed till about 5th > grade. She had a Speech and language IEP till then) I worked at > home. till age 10 I paid privately for speech and lang. summers > three times per week and I worked at home daily. To answer your > question, I guess I was the parent/teacher/paraprofessional all in > one for about 12 years.If you ask she will tell you I was > a " Pain in the @** " I pushed her really hard to speak properly. It > paid off. Since junior high has been her own advocate and > asked for help as needed. > attended reg. school without special assistance. She now > can " make it on her own with hard work. " She had preferencial > seating in school but usually didn't need it. > She will attend the University of Akron. The Uof A provides > tutoring services to all students( another miracle). will just > have to go get it if she needs it. She should be willing to ask for > help. > I have said many time how blessed we have been that 's > problems have been " just medical " . We missed the cognitive and > behavioral issues. Until a year ago when I joined this list I never > realized how blessed we have been. My friends with " normal " children > seem to think I am some kind of saint to have seen through 27 > surgeries. I just wish they would read the stories here. The other > parents are the " saints " . > Hope this helps. There is far to much to write about > here. > Lynn > Ohio > > > > > > , > > > > > > Oh my gosh, your story is ours almost! My daughter was > > diagnosed with > > > CHARGE at the age of 14 also even though she has every > > characteristic of > > > CHARGE, just to a lesser degree! She is now 18 and doing well! > > She had the coanal > > > atresia, opened 4 times too. As an infant we found out she had > > the > > > colobomas, reflux and other things. She was such a sick little > > one. She got hearing > > > aids around two. Along the way new things kept popping up no > one > > could explain. > > > We too were told the same, that all of the things develop at > the > > same time, > > > yadda, yadda.... > > > It was hard because she never fit anywhere. We often > felt > > alone, but > > > Patty felt it the most, especially during that age. I could go > on > > but I think > > > you know. Then at 14 she was properly diagnosed with CHARGE. I > > don't want > > > to make you nervous, but have your daughters heart checked. > Patty > > always had a > > > heart murmur, but with the diagnosis they checked it out > further. > > She had > > > something called a PDA, " just a little hole. " Thank God they > > checked it out, > > > she had had strep in her blood system 3 times, and other > illnesses > > which could > > > have been scary. When they fixed it (easily through arteries in > > the leg/hip > > > area) the doctors were surprised how large it actually was. > Just > > check it out, > > > that's all. Oh, and the puberty thing was fun! It still is > > interesting. > > > Check that out further. > > > The diagnosis for Pat was a life altering change for > every > > one of us > > > in the family. It was such a blessing as well. Pat's education > > and medical > > > interventions either changed or were finally understood. But I > > think the most > > > important change was we weren't alone. > > > I don't know where you live but another drastic important > > change in > > > our lives was attending the CHARGE Conference. I couldn't > believe > > I was > > > standing somewhere where there were tons of " little Patty's " > > everywhere! The same > > > face, the same behaviors, the same ... just with different > > degrees! The > > > feelings and emotions were, and still is, indescribable. Then we > > went to the sessions > > > and I couldn't believe how my daughter fit what was said or > > taught. I could > > > understand my daughter more than I ever did. I can't describe > to > > people of > > > the importance of that unless they experience it. The > conference > > is soon, but > > > will can and will change your lives. If you can find any way to > > attend, it > > > would really help. If not, there's another one two years from > > now. Time does > > > fly! > > > Pat is 18 and just graduated. She is still often lonely > > here in town, > > > but with the diagnosis came understanding and experienced > > professionals from > > > around the country. Pat was able to attend Perkins and New > > England Deaf/Blind > > > Center programs. These experiences were more than miraculous. > Plus > > there she > > > met individuals who she remains in contact with today. She has > > made some > > > really good friends. Now she is more confident and happy. > Which > > was hard because > > > she always has been confident! > > > I am telling you, with the diagnosis, the conference, and > > all the > > > specialist involved with CHARGE and her, life finally made so > much > > sense. She is > > > Empowered! It is so much easier for Patty now. It's not easy > and > > never will > > > be, but it is easier! Understanding goes a long way, it's > > unbelievable. > > > We are no longer alone, and you aren't as well. > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > Lynn, I hope to see you at the conference. Is coming with > > you? I > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 , Don't ever feel guilty!!!!. Tom was in school all day. My husband was working, and I was literally stuck at home with till she was 4yrs old because only two friends would learn to suction the trach. They would stay with her for an hour or two only. ( My mom was just a little to old and nervous to help). If I didn't do something it wouldn't get done. No one thought she need home nursing care so I was it. I went back to teaching once started first grade. It worked well because we had the same vacations, snow days, summers etc. Lynn > > > > , > > > > > > > > Oh my gosh, your story is ours almost! My daughter was > > > diagnosed with > > > > CHARGE at the age of 14 also even though she has every > > > characteristic of > > > > CHARGE, just to a lesser degree! She is now 18 and doing well! > > > She had the coanal > > > > atresia, opened 4 times too. As an infant we found out she had > > > the > > > > colobomas, reflux and other things. She was such a sick little > > > one. She got hearing > > > > aids around two. Along the way new things kept popping up no > > one > > > could explain. > > > > We too were told the same, that all of the things develop at > > the > > > same time, > > > > yadda, yadda.... > > > > It was hard because she never fit anywhere. We often > > felt > > > alone, but > > > > Patty felt it the most, especially during that age. I could go > > on > > > but I think > > > > you know. Then at 14 she was properly diagnosed with CHARGE. I > > > don't want > > > > to make you nervous, but have your daughters heart checked. > > Patty > > > always had a > > > > heart murmur, but with the diagnosis they checked it out > > further. > > > She had > > > > something called a PDA, " just a little hole. " Thank God they > > > checked it out, > > > > she had had strep in her blood system 3 times, and other > > illnesses > > > which could > > > > have been scary. When they fixed it (easily through arteries in > > > the leg/hip > > > > area) the doctors were surprised how large it actually was. > > Just > > > check it out, > > > > that's all. Oh, and the puberty thing was fun! It still is > > > interesting. > > > > Check that out further. > > > > The diagnosis for Pat was a life altering change for > > every > > > one of us > > > > in the family. It was such a blessing as well. Pat's education > > > and medical > > > > interventions either changed or were finally understood. But I > > > think the most > > > > important change was we weren't alone. > > > > I don't know where you live but another drastic important > > > change in > > > > our lives was attending the CHARGE Conference. I couldn't > > believe > > > I was > > > > standing somewhere where there were tons of " little Patty's " > > > everywhere! The same > > > > face, the same behaviors, the same ... just with different > > > degrees! The > > > > feelings and emotions were, and still is, indescribable. Then we > > > went to the sessions > > > > and I couldn't believe how my daughter fit what was said or > > > taught. I could > > > > understand my daughter more than I ever did. I can't describe > > to > > > people of > > > > the importance of that unless they experience it. The > > conference > > > is soon, but > > > > will can and will change your lives. If you can find any way to > > > attend, it > > > > would really help. If not, there's another one two years from > > > now. Time does > > > > fly! > > > > Pat is 18 and just graduated. She is still often lonely > > > here in town, > > > > but with the diagnosis came understanding and experienced > > > professionals from > > > > around the country. Pat was able to attend Perkins and New > > > England Deaf/Blind > > > > Center programs. These experiences were more than miraculous. > > Plus > > > there she > > > > met individuals who she remains in contact with today. She has > > > made some > > > > really good friends. Now she is more confident and happy. > > Which > > > was hard because > > > > she always has been confident! > > > > I am telling you, with the diagnosis, the conference, and > > > all the > > > > specialist involved with CHARGE and her, life finally made so > > much > > > sense. She is > > > > Empowered! It is so much easier for Patty now. It's not easy > > and > > > never will > > > > be, but it is easier! Understanding goes a long way, it's > > > unbelievable. > > > > We are no longer alone, and you aren't as well. > > > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > > > Lynn, I hope to see you at the conference. Is coming with > > > you? I > > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Kristi, I just did what I had to do. I don't think of myself as anything unusual. When was 6 mo. old and they put her trach in I was terrified. I told the doctor, " I will never master the care and be able to take her home. " I actually walked out of the room in the middle of a lesson crying and yelling " I can't! " The mom of the trach baby in the next bed came after me, took me by the shoulders and shook me. She said, " If you don't care for her, no one will! " Her baby died in spite of the trach. I have never forgotten that mom or the lesson I learned that day. I agree ever parent, friend, family member that helps with a special child are a hero! Give Gracie a hug for me. Lynn > Lynn- > Wow... what a mom you are... everyone here is! I just wanted to let you know > that as I read what you wrote about I got chills... can you imagine how > different her life would have been had YOU not been her mother?! What you've > done (and continue to do) for her is inspiring. > > > Kristi Swann > Mommy to Gracie 12 weeks, wife to & Dog mom to Sophie :-) > Roseville, CA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 lynn, once liam hits pre-k that is my plan--to sub so that I can choose when I want to work--drs. appts, school things for the boys, etc. plus I'll get my foot in the door if i ever want to go back full time. well, it's bedtime here, time to get the munchkins in bed--and then me!!! Re: Later age diagnosis > , > Don't ever feel guilty!!!!. Tom was in school all day. My husband > was working, and I was literally stuck at home with till she > was 4yrs old because only two friends would learn to suction the > trach. They would stay with her for an hour or two only. ( My mom > was just a little to old and nervous to help). If I didn't do > something it wouldn't get done. No one thought she need home nursing > care so I was it. I went back to teaching once started first > grade. It worked well because we had the same vacations, snow days, > summers etc. > Lynn > > > > > > > , > > > > > > > > > > Oh my gosh, your story is ours almost! My daughter > was > > > > diagnosed with > > > > > CHARGE at the age of 14 also even though she has every > > > > characteristic of > > > > > CHARGE, just to a lesser degree! She is now 18 and doing > well! > > > > She had the coanal > > > > > atresia, opened 4 times too. As an infant we found out she > had > > > > the > > > > > colobomas, reflux and other things. She was such a sick > little > > > > one. She got hearing > > > > > aids around two. Along the way new things kept popping up no > > > one > > > > could explain. > > > > > We too were told the same, that all of the things develop at > > > the > > > > same time, > > > > > yadda, yadda.... > > > > > It was hard because she never fit anywhere. We often > > > felt > > > > alone, but > > > > > Patty felt it the most, especially during that age. I could > go > > > on > > > > but I think > > > > > you know. Then at 14 she was properly diagnosed with > CHARGE. I > > > > don't want > > > > > to make you nervous, but have your daughters heart checked. > > > Patty > > > > always had a > > > > > heart murmur, but with the diagnosis they checked it out > > > further. > > > > She had > > > > > something called a PDA, " just a little hole. " Thank God they > > > > checked it out, > > > > > she had had strep in her blood system 3 times, and other > > > illnesses > > > > which could > > > > > have been scary. When they fixed it (easily through > arteries in > > > > the leg/hip > > > > > area) the doctors were surprised how large it actually was. > > > Just > > > > check it out, > > > > > that's all. Oh, and the puberty thing was fun! It still is > > > > interesting. > > > > > Check that out further. > > > > > The diagnosis for Pat was a life altering change for > > > every > > > > one of us > > > > > in the family. It was such a blessing as well. Pat's > education > > > > and medical > > > > > interventions either changed or were finally understood. > But I > > > > think the most > > > > > important change was we weren't alone. > > > > > I don't know where you live but another drastic > important > > > > change in > > > > > our lives was attending the CHARGE Conference. I couldn't > > > believe > > > > I was > > > > > standing somewhere where there were tons of " little Patty's " > > > > everywhere! The same > > > > > face, the same behaviors, the same ... just with different > > > > degrees! The > > > > > feelings and emotions were, and still is, indescribable. > Then we > > > > went to the sessions > > > > > and I couldn't believe how my daughter fit what was said or > > > > taught. I could > > > > > understand my daughter more than I ever did. I can't > describe > > > to > > > > people of > > > > > the importance of that unless they experience it. The > > > conference > > > > is soon, but > > > > > will can and will change your lives. If you can find any way > to > > > > attend, it > > > > > would really help. If not, there's another one two years > from > > > > now. Time does > > > > > fly! > > > > > Pat is 18 and just graduated. She is still often > lonely > > > > here in town, > > > > > but with the diagnosis came understanding and experienced > > > > professionals from > > > > > around the country. Pat was able to attend Perkins and New > > > > England Deaf/Blind > > > > > Center programs. These experiences were more than miraculous. > > > Plus > > > > there she > > > > > met individuals who she remains in contact with today. She > has > > > > made some > > > > > really good friends. Now she is more confident and happy. > > > Which > > > > was hard because > > > > > she always has been confident! > > > > > I am telling you, with the diagnosis, the conference, > and > > > > all the > > > > > specialist involved with CHARGE and her, life finally made so > > > much > > > > sense. She is > > > > > Empowered! It is so much easier for Patty now. It's not > easy > > > and > > > > never will > > > > > be, but it is easier! Understanding goes a long way, it's > > > > unbelievable. > > > > > We are no longer alone, and you aren't as well. > > > > > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > > > > > Lynn, I hope to see you at the conference. Is coming > with > > > > you? I > > > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 I meant to say, and forgot to add I often feel the same way about timmy concerning his prosthesis and hearing aides, orthotics etc. parents can take out--but not sure could put in--especially the eye. others need to learn--just in case, but.... maria Re: Later age diagnosis > , > Don't ever feel guilty!!!!. Tom was in school all day. My husband > was working, and I was literally stuck at home with till she > was 4yrs old because only two friends would learn to suction the > trach. They would stay with her for an hour or two only. ( My mom > was just a little to old and nervous to help). If I didn't do > something it wouldn't get done. No one thought she need home nursing > care so I was it. I went back to teaching once started first > grade. It worked well because we had the same vacations, snow days, > summers etc. > Lynn > > > > > > > , > > > > > > > > > > Oh my gosh, your story is ours almost! My daughter > was > > > > diagnosed with > > > > > CHARGE at the age of 14 also even though she has every > > > > characteristic of > > > > > CHARGE, just to a lesser degree! She is now 18 and doing > well! > > > > She had the coanal > > > > > atresia, opened 4 times too. As an infant we found out she > had > > > > the > > > > > colobomas, reflux and other things. She was such a sick > little > > > > one. She got hearing > > > > > aids around two. Along the way new things kept popping up no > > > one > > > > could explain. > > > > > We too were told the same, that all of the things develop at > > > the > > > > same time, > > > > > yadda, yadda.... > > > > > It was hard because she never fit anywhere. We often > > > felt > > > > alone, but > > > > > Patty felt it the most, especially during that age. I could > go > > > on > > > > but I think > > > > > you know. Then at 14 she was properly diagnosed with > CHARGE. I > > > > don't want > > > > > to make you nervous, but have your daughters heart checked. > > > Patty > > > > always had a > > > > > heart murmur, but with the diagnosis they checked it out > > > further. > > > > She had > > > > > something called a PDA, " just a little hole. " Thank God they > > > > checked it out, > > > > > she had had strep in her blood system 3 times, and other > > > illnesses > > > > which could > > > > > have been scary. When they fixed it (easily through > arteries in > > > > the leg/hip > > > > > area) the doctors were surprised how large it actually was. > > > Just > > > > check it out, > > > > > that's all. Oh, and the puberty thing was fun! It still is > > > > interesting. > > > > > Check that out further. > > > > > The diagnosis for Pat was a life altering change for > > > every > > > > one of us > > > > > in the family. It was such a blessing as well. Pat's > education > > > > and medical > > > > > interventions either changed or were finally understood. > But I > > > > think the most > > > > > important change was we weren't alone. > > > > > I don't know where you live but another drastic > important > > > > change in > > > > > our lives was attending the CHARGE Conference. I couldn't > > > believe > > > > I was > > > > > standing somewhere where there were tons of " little Patty's " > > > > everywhere! The same > > > > > face, the same behaviors, the same ... just with different > > > > degrees! The > > > > > feelings and emotions were, and still is, indescribable. > Then we > > > > went to the sessions > > > > > and I couldn't believe how my daughter fit what was said or > > > > taught. I could > > > > > understand my daughter more than I ever did. I can't > describe > > > to > > > > people of > > > > > the importance of that unless they experience it. The > > > conference > > > > is soon, but > > > > > will can and will change your lives. If you can find any way > to > > > > attend, it > > > > > would really help. If not, there's another one two years > from > > > > now. Time does > > > > > fly! > > > > > Pat is 18 and just graduated. She is still often > lonely > > > > here in town, > > > > > but with the diagnosis came understanding and experienced > > > > professionals from > > > > > around the country. Pat was able to attend Perkins and New > > > > England Deaf/Blind > > > > > Center programs. These experiences were more than miraculous. > > > Plus > > > > there she > > > > > met individuals who she remains in contact with today. She > has > > > > made some > > > > > really good friends. Now she is more confident and happy. > > > Which > > > > was hard because > > > > > she always has been confident! > > > > > I am telling you, with the diagnosis, the conference, > and > > > > all the > > > > > specialist involved with CHARGE and her, life finally made so > > > much > > > > sense. She is > > > > > Empowered! It is so much easier for Patty now. It's not > easy > > > and > > > > never will > > > > > be, but it is easier! Understanding goes a long way, it's > > > > unbelievable. > > > > > We are no longer alone, and you aren't as well. > > > > > > > > > > Bonnie, Mom to a 20, Pat 18 CHARGE and wife to > > > > > > > > > > Lynn, I hope to see you at the conference. Is coming > with > > > > you? I > > > > > forget. If not don't forget to bring pictures. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 It can be quite frustrating for me as well with two kiddos with problems so close together. It was funny in a way when I found out I was pregnant with , my youngest, that day I was having a friend take me to the hospital for a CT scan for Kai because Troy was at work and doing his billion it seemed like classes, he teaches an average of 11 a semester, but anyway, she was like so when are you guys going to have another kid. Well Kai was barely one when she asked. Well I told her when ever God sends us another one I guess. Luckily the CT scan was cancelled so no xray exposure but still I was pissed off cause I was stranded and had to wait for a ride home from the medical center but I found out that night I was pregnant. It was like a test I guess if I was ready. But I get " oh man I don't know how you do it with two special needs kids. " Well I don't have a choice. They are the ones who have to go thru it and if I didn't do it who would. But people are amazed at my answer when I say that. It's like come on, if you have a spouse with cancer, you usually take care of them right, why not take care of a special needs kid. They are shocked too that I'm not an emotional mess all the time and I'm so " together " . They don't see me when I cry for an hour cause the day has been too stressful or me getting angry at people for being stupid, medical wise. Or me having to yell at the insurance company for a stupid mistake on the filing party part. I am just me. I am not an angel or a saint. I just am a mom who loves her children dearly and would do anything for them so they have the best life possible. They are the truly courageous ones. They are the angels. They go thru some scary crap and yet most of them, after the scary part is over, smile and are so happy. I am just the mom, they are the fighters. Plus I have an amazing husband who hold me up when I am tired of fighting. If I didn't have him, I couldn't be so " strong " Liz SAVE 20% on Gasoline <A HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 In a message dated 10/07/2003 03:57:24 GMT Standard Time, momonamission@... writes: > It bothers me when people treat me like a saint when I know that I am not. > I am not a perfect parent to either of my kids, but I do the best I can. > Although Aubrie is a doll, she is not any more or less special than any other > child. And I am not an exceptional parent just because I have her. > > Gee-- does that all make sense? It's something that gnaws at me a bit > whenever someone brings it up to me. > > Michele, That makes perfect sense to me. It's exactly how I feel about it all. It also bothers me when people say ' special children go to special parents'. If that were truly the case then why are there so many 'special' kids in care? I sometimes feel that I have so much to live up to and feel a bit of a fraud as I don't feel in any way 'special'. Jack is my son and I love him unconditionally (as I do my daughter), no matter what his problems are. Elaine Mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 It can be quite frustrating for me as well with two kiddos with problems so close together. It was funny in a way when I found out I was pregnant with , my youngest, that day I was having a friend take me to the hospital for a CT scan for Kai because Troy was at work and doing his billion it seemed like classes, he teaches an average of 11 a semester, but anyway, she was like so when are you guys going to have another kid. Well Kai was barely one when she asked. Well I told her when ever God sends us another one I guess. Luckily the CT scan was cancelled so no xray exposure but still I was pissed off cause I was stranded and had to wait for a ride home from the medical center but I found out that night I was pregnant. It was like a test I guess if I was ready. But I get " oh man I don't know how you do it with two special needs kids. "  Well I don't have a choice. They are the ones who have to go thru it and if I didn't do it who would. But people are amazed at my answer when I say that. It's like come on, if you have a spouse with cancer, you usually take care of them right, why not take care of a special needs kid. They are shocked too that I'm not an emotional mess all the time and I'm so " together " . They don't see me when I cry for an hour cause the day has been too stressful or me getting angry at people for being stupid, medical wise. Or me having to yell at the insurance company for a stupid mistake on the filing party part. I am just me. I am not an angel or a saint. I just am a mom who loves her children dearly and would do anything for them so they have the best life possible. They are the truly courageous ones. They are the angels. They go thru some scary crap and yet most of them, after the scary part is over, smile and are so happy.  I am just the mom, they are the fighters. Plus I have an amazing husband who hold me up when I am tired of fighting. If I didn't have him, I couldn't be so " strong " Liz SAVE 20% on Gasoline <A HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Gotta chime in here. So many people express to me their admiration etc as if I am a saint for loving and caring for Aubrie. I don't think so. As Lynn said, " I just did what I had to do " . Don't we all? Isn't that what any parent would do? And isn't there always even more that we think we could be doing if only?? But then I see many children whose parents don't have the time or energy to do the things that so many of us here do. I don't necessarily fault them for it. I can't put myself in their shoes and judge their situation. I like to think that every parent is doing the best that they can do. But some children do miss out because their parents are not informed or are not skilled advocates or whatever. When I see those kids, I realize that we are doing more than some parents. There is something that makes us the kind of parents that go to a list like this, seek information, spend time and energy above and beyond for our kids... But we are probably the same kind of parents to our nondisabled children too. Before Aubrie, I read all the " typical " parenting books. Now my bedside is filled with spec ed related books. It bothers me when people treat me like a saint when I know that I am not. I am not a perfect parent to either of my kids, but I do the best I can. Although Aubrie is a doll, she is not any more or less special than any other child. And I am not an exceptional parent just because I have her. Gee-- does that all make sense? It's something that gnaws at me a bit whenever someone brings it up to me. Michele W mom to Aubrie (5 yrs) CHaRgE and (11 yrs) Re: Later age diagnosis Kristi, I just did what I had to do. I don't think of myself as anything unusual. When was 6 mo. old and they put her trach in I was terrified. I told the doctor, " I will never master the care and be able to take her home. " I actually walked out of the room in the middle of a lesson crying and yelling " I can't! " The mom of the trach baby in the next bed came after me, took me by the shoulders and shook me. She said, " If you don't care for her, no one will! " Her baby died in spite of the trach. I have never forgotten that mom or the lesson I learned that day. I agree ever parent, friend, family member that helps with a special child are a hero! Give Gracie a hug for me. Lynn > Lynn- > Wow... what a mom you are... everyone here is! I just wanted to let you know > that as I read what you wrote about I got chills... can you imagine how > different her life would have been had YOU not been her mother?! What you've > done (and continue to do) for her is inspiring. > > > Kristi Swann > Mommy to Gracie 12 weeks, wife to & Dog mom to Sophie :-) > Roseville, CA > > > Quote Link to comment Share on other sites More sharing options...
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