Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 .......and standing (even sort of) on top of all our obstacles..... pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Bonnie- Give Patty a high five from me! This winter, we had one really big snowstorm. We had the highest drifts from the snowplows that I've seen since my childhood. Aubrie needed help, but she climbed up there and loved being " king of the mountain " . It was so neat. With her balance and weakness, I don't know that I would have let her do it without us right there as a safety net. But it sure was fun to see her up there. I have the same image of Patty on top of her boulder! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 bonnie you are right thats what i try to do i look for the good things i do find bad things oh yes i do but with in it i find soem good stuff:) soemtimes with bad things good stuff comes hmmmm give patty a hug for me ellen > > Bonnie- > Give Patty a high five from me! This winter, we had one really big > snowstorm. We had the highest drifts from the snowplows that I've seen > since my childhood. Aubrie needed help, but she climbed up there and > loved > being " king of the mountain " . It was so neat. With her balance and > weakness, I don't know that I would have let her do it without us right > there as a safety net. But it sure was fun to see her up there. I have > the > same image of Patty on top of her boulder! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 bonnie you are right thats what i try to do i look for the good things i do find bad things oh yes i do but with in it i find soem good stuff:) soemtimes with bad things good stuff comes hmmmm give patty a hug for me ellen > > Bonnie- > Give Patty a high five from me! This winter, we had one really big > snowstorm. We had the highest drifts from the snowplows that I've seen > since my childhood. Aubrie needed help, but she climbed up there and > loved > being " king of the mountain " . It was so neat. With her balance and > weakness, I don't know that I would have let her do it without us right > there as a safety net. But it sure was fun to see her up there. I have > the > same image of Patty on top of her boulder! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 bonnie you are right thats what i try to do i look for the good things i do find bad things oh yes i do but with in it i find soem good stuff:) soemtimes with bad things good stuff comes hmmmm give patty a hug for me ellen > > Bonnie- > Give Patty a high five from me! This winter, we had one really big > snowstorm. We had the highest drifts from the snowplows that I've seen > since my childhood. Aubrie needed help, but she climbed up there and > loved > being " king of the mountain " . It was so neat. With her balance and > weakness, I don't know that I would have let her do it without us right > there as a safety net. But it sure was fun to see her up there. I have > the > same image of Patty on top of her boulder! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 yea Patty!!! Bit of good news > With all the pain, fear and sadness of what happened with these sweet > little > children I thought I'd share a bit of joy. > > Patty has yet another ear infection and her balance has been worse than > normal. (Which is always yucky anyway.) We ended up going to the park > for a hike > in the woods this afternoon. Fresh air does wonders. When we first moved > here two years ago Patty needed to hold my arm for balance just to walk > the path. > The roots, rocks, and all the other stuff in the woods throws things out > of > whack and she had to hold on just to walk. We go there so often that she > is > now totally independent. She knows where everything is and what to > expect. > Last fall we were thrilled that she climbed on top of a rock that's about > 2 feet > high. Wow, that was just great. > > But there's this other rock there........ It's a huge boulder, about ten > feet high. The angle to climb up it is about a 45 degree angle but she's > never > been able to climb up no matter how hard she tried and boy did she ever. > That > boulder and Patty have had a great battle going on. She wanted to attain > the > ultimate goal on reaching the top. > > Well, even with the infection and all today was her day. Patty finally > climbed on to the top of that boulder. Not only that she kind of stood on > top too. > > > Yes, there is great pain. We should know that and hold it closely. We > should pray for these babies and their families. I don't think any of us > should > let that go. But please remember to see the joy in life as well. > Sometimes > there's more than just joy, there's miracles. > > Ours is - Patty climbed a boulder today. > > I'll try to send the picture to ! > > > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Good going Patty! The never give up spirit will always win through. You know Bonnie, Patty will never be forgotten in this household. Every time we see running, she could be Patty running down the corridor in Miami. It is so funny, and only started running last summer after we had returned so we were quite gobsmacked to see the identical CHARGE run. We too went walking in some woods today and all she wanted to do was run. Unfortunately, as much as she was enjoying herself, Elly put an end to it when (me and my big mouth) I made some remark about bears in the woods. That was the end of that walk as Elly was suddenly too tired to walk and in floods of tears and I had to carry her back (serves me right)! Wouldn't you know it, the child with CHARGE is fearless and the one without is scared of her own shadow! Big hug to Patty and say congrats on her achievemet and perseverance. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Les, Patty's success is her own. She forces me to continually grow in that fighting spirit but you are right in that she requires tons and tons of tenderness. You would never know it by talking to her. She hides that sensitive part and puts on that tough face for almost everyone. But her heart is just as sensitive as anyone else's. All I can say is love is greater than anything in this world. She gives it times ten. As long as I continue to earn it. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Les, Patty's success is her own. She forces me to continually grow in that fighting spirit but you are right in that she requires tons and tons of tenderness. You would never know it by talking to her. She hides that sensitive part and puts on that tough face for almost everyone. But her heart is just as sensitive as anyone else's. All I can say is love is greater than anything in this world. She gives it times ten. As long as I continue to earn it. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Les, Patty's success is her own. She forces me to continually grow in that fighting spirit but you are right in that she requires tons and tons of tenderness. You would never know it by talking to her. She hides that sensitive part and puts on that tough face for almost everyone. But her heart is just as sensitive as anyone else's. All I can say is love is greater than anything in this world. She gives it times ten. As long as I continue to earn it. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Flo, You guys are often in our thoughts. Patty asks how you and your family are all the time. When you write updates I tell Patty. Ha I laughed about the running. The CHARGE walk (or now run!) can never be mistaken for anything else. That should be another CHARGE criteria! So should the perseverance! Love the bears in the woods drama. I can't tell you how many times I've done stuff like that. Still doing it actually. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Bonnie Patty clearly has the true grit, and the fighting spirit of her mom, why else could she have managed this wonderful achievement, its all the years of your tenderness that have made Patty this determined, I hope I am as successful as you have been when Amelie grows up. Well done Patty, to see this picture would be nice. Love Les x > > Good going Patty! The never give up spirit will always win through. > > You know Bonnie, Patty will never be forgotten in this household. Every > time we see running, she could be Patty running down the corridor > in > Miami. It is so funny, and only started running last summer after > we had returned so we were quite gobsmacked to see the identical CHARGE > run. > > We too went walking in some woods today and all she wanted to do was run. > Unfortunately, as much as she was enjoying herself, Elly put an end to it > when (me and my big mouth) I made some remark about bears in the woods. > That was the end of that walk as Elly was suddenly too tired to walk and > in > floods of tears and I had to carry her back (serves me right)! Wouldn't > you > know it, the child with CHARGE is fearless and the one without is scared > of > her own shadow! > > Big hug to Patty and say congrats on her achievemet and perseverance. > > Flo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Bonnie Patty clearly has the true grit, and the fighting spirit of her mom, why else could she have managed this wonderful achievement, its all the years of your tenderness that have made Patty this determined, I hope I am as successful as you have been when Amelie grows up. Well done Patty, to see this picture would be nice. Love Les x > > Good going Patty! The never give up spirit will always win through. > > You know Bonnie, Patty will never be forgotten in this household. Every > time we see running, she could be Patty running down the corridor > in > Miami. It is so funny, and only started running last summer after > we had returned so we were quite gobsmacked to see the identical CHARGE > run. > > We too went walking in some woods today and all she wanted to do was run. > Unfortunately, as much as she was enjoying herself, Elly put an end to it > when (me and my big mouth) I made some remark about bears in the woods. > That was the end of that walk as Elly was suddenly too tired to walk and > in > floods of tears and I had to carry her back (serves me right)! Wouldn't > you > know it, the child with CHARGE is fearless and the one without is scared > of > her own shadow! > > Big hug to Patty and say congrats on her achievemet and perseverance. > > Flo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Bonnie, I am laughing at this final statement: " As long as I continue to earn it. " Ain't it the truth!!!!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Bonnie, I am laughing at this final statement: " As long as I continue to earn it. " Ain't it the truth!!!!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Bonnie, I am laughing at this final statement: " As long as I continue to earn it. " Ain't it the truth!!!!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Thank you Bonnie for the wonderful image of Patty on that boulder! Go Patty go! Sharon from West Oz , >With all the pain, fear and sadness of what happened with these sweet little >children I thought I'd share a bit of joy. > >Patty has yet another ear infection and her balance has been worse than >normal. (Which is always yucky anyway.) We ended up going to the >park for a hike >in the woods this afternoon. Fresh air does wonders. When we first moved >here two years ago Patty needed to hold my arm for balance just to >walk the path. > The roots, rocks, and all the other stuff in the woods throws things out of >whack and she had to hold on just to walk. We go there so often that she is >now totally independent. She knows where everything is and what to expect. >Last fall we were thrilled that she climbed on top of a rock that's >about 2 feet >high. Wow, that was just great. > >But there's this other rock there........ It's a huge boulder, about ten >feet high. The angle to climb up it is about a 45 degree angle but >she's never >been able to climb up no matter how hard she tried and boy did she ever. That >boulder and Patty have had a great battle going on. She wanted to attain the >ultimate goal on reaching the top. > >Well, even with the infection and all today was her day. Patty finally >climbed on to the top of that boulder. Not only that she kind of >stood on top too. > > >Yes, there is great pain. We should know that and hold it closely. We >should pray for these babies and their families. I don't think any >of us should >let that go. But please remember to see the joy in life as well. Sometimes >there's more than just joy, there's miracles. > >Ours is - Patty climbed a boulder today. > >I'll try to send the picture to ! > > >Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
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