Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 - When the girls were younger, I compared all the time. Roughly around age six I started to grieve the loss and just quit comparing. At that point, I only did it a few times per year with a deep regret. Somewhere around eight to ten, I basically just quit comparing. We were so far away from typical, there was really no comparison. A couple of months ago, I was working a booth at a dog show. Several people from the organization joined me. One brought her daughter, who sat there and talked about the dogs, how much she loved them, how she trained hers, what she liked about them, and on and on and on. She was very poised, spoke elegantly, carried herself so well. She was taller than me and just developing. She was such a sweet girl and obviously someone that would fit in the popular crowd although probably not prom queen material. Finally, I asked her age. She was just a couple of months older than my youngest and a year or so younger than my oldest. It was the first time in several years I'd made the comparison. I was totally shocked!!!! Totally! For days I was stunned. When I think of it now, I'm transported to how I felt at exactly that moment. She was definitely taller than my girls, but the girlfriend who was with her was also basically her size. (My girls are running small for their ages.) just barely speaks and Ariana communicates somewhere between four and six years of age, and even then the quality is not so good. Wow! What a shock. I remember when the girls were younger, I was totally gung-ho about doing anything and everything that might make the difference - even tried to afford a trip to Florida to swim with the dolphins to see if that would be "The Miracle" cure for mito, for my girls in particular. There was no therapy too expensive. Nothing I wouldn't try. With acceptance came an end to heroics and a certain peace. That peace was intruded upon with the realization of where we'd be by now - if . . . So, it does get easier over time. However, I doubt there will ever be a time when it's 100% no big deal. Hugs to all of us hurting, another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 - When the girls were younger, I compared all the time. Roughly around age six I started to grieve the loss and just quit comparing. At that point, I only did it a few times per year with a deep regret. Somewhere around eight to ten, I basically just quit comparing. We were so far away from typical, there was really no comparison. A couple of months ago, I was working a booth at a dog show. Several people from the organization joined me. One brought her daughter, who sat there and talked about the dogs, how much she loved them, how she trained hers, what she liked about them, and on and on and on. She was very poised, spoke elegantly, carried herself so well. She was taller than me and just developing. She was such a sweet girl and obviously someone that would fit in the popular crowd although probably not prom queen material. Finally, I asked her age. She was just a couple of months older than my youngest and a year or so younger than my oldest. It was the first time in several years I'd made the comparison. I was totally shocked!!!! Totally! For days I was stunned. When I think of it now, I'm transported to how I felt at exactly that moment. She was definitely taller than my girls, but the girlfriend who was with her was also basically her size. (My girls are running small for their ages.) just barely speaks and Ariana communicates somewhere between four and six years of age, and even then the quality is not so good. Wow! What a shock. I remember when the girls were younger, I was totally gung-ho about doing anything and everything that might make the difference - even tried to afford a trip to Florida to swim with the dolphins to see if that would be "The Miracle" cure for mito, for my girls in particular. There was no therapy too expensive. Nothing I wouldn't try. With acceptance came an end to heroics and a certain peace. That peace was intruded upon with the realization of where we'd be by now - if . . . So, it does get easier over time. However, I doubt there will ever be a time when it's 100% no big deal. Hugs to all of us hurting, another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Jean I wish I could put things into words as well as you. I just second everything you said!!!!!! Kathy, grandma to Audrey,16mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Jean I wish I could put things into words as well as you. I just second everything you said!!!!!! Kathy, grandma to Audrey,16mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Jean I wish I could put things into words as well as you. I just second everything you said!!!!!! Kathy, grandma to Audrey,16mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Good Morning Ruth, I am not sure if I see this differently or just not understanding but I see the instructor giving Mitch a belt he did earn. Maybe not to the degree of the other students but probably with more work than the other students. When J.D. first started with mito symptoms, he would work on something and tell me how hard he worked. I would say you hardly did anything and tears would come to his eyes. Now, any effort he puts into something, I tell him what a good job he has done. As talked about in another post, comparing can be cruel. Even comparing a normal child to another normal child can be a wide range of differences. We all have strengths and weaknesses. Getting that belt might the extra boost Mitch needs for his self esteem. Have a good weekend. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 Thank you . I am really being aware lately of drawing on Cameron's strengths. He is really a miracle. He should not even be with us, let alone walking around, using sign language, and tormenting his sisters LOL So, even though in many areas his is not "comparable", he is doing well and "looks great" as they say LOL May we celebrate our children and all their uniqueness this season and daily as they help us become the parents with the strongest resolve. Blessings, -----Original Message-----From: Fagan Sent: Thursday, December 19, 2002 6:56 PMTo: Mito Subject: Re: another low moment - When the girls were younger, I compared all the time. Roughly around age six I started to grieve the loss and just quit comparing. At that point, I only did it a few times per year with a deep regret. Somewhere around eight to ten, I basically just quit comparing. We were so far away from typical, there was really no comparison. A couple of months ago, I was working a booth at a dog show. Several people from the organization joined me. One brought her daughter, who sat there and talked about the dogs, how much she loved them, how she trained hers, what she liked about them, and on and on and on. She was very poised, spoke elegantly, carried herself so well. She was taller than me and just developing. She was such a sweet girl and obviously someone that would fit in the popular crowd although probably not prom queen material. Finally, I asked her age. She was just a couple of months older than my youngest and a year or so younger than my oldest. It was the first time in several years I'd made the comparison. I was totally shocked!!!! Totally! For days I was stunned. When I think of it now, I'm transported to how I felt at exactly that moment. She was definitely taller than my girls, but the girlfriend who was with her was also basically her size. (My girls are running small for their ages.) just barely speaks and Ariana communicates somewhere between four and six years of age, and even then the quality is not so good. Wow! What a shock. I remember when the girls were younger, I was totally gung-ho about doing anything and everything that might make the difference - even tried to afford a trip to Florida to swim with the dolphins to see if that would be "The Miracle" cure for mito, for my girls in particular. There was no therapy too expensive. Nothing I wouldn't try. With acceptance came an end to heroics and a certain peace. That peace was intruded upon with the realization of where we'd be by now - if . . . So, it does get easier over time. However, I doubt there will ever be a time when it's 100% no big deal. Hugs to all of us hurting, another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 Thank you . I am really being aware lately of drawing on Cameron's strengths. He is really a miracle. He should not even be with us, let alone walking around, using sign language, and tormenting his sisters LOL So, even though in many areas his is not "comparable", he is doing well and "looks great" as they say LOL May we celebrate our children and all their uniqueness this season and daily as they help us become the parents with the strongest resolve. Blessings, -----Original Message-----From: Fagan Sent: Thursday, December 19, 2002 6:56 PMTo: Mito Subject: Re: another low moment - When the girls were younger, I compared all the time. Roughly around age six I started to grieve the loss and just quit comparing. At that point, I only did it a few times per year with a deep regret. Somewhere around eight to ten, I basically just quit comparing. We were so far away from typical, there was really no comparison. A couple of months ago, I was working a booth at a dog show. Several people from the organization joined me. One brought her daughter, who sat there and talked about the dogs, how much she loved them, how she trained hers, what she liked about them, and on and on and on. She was very poised, spoke elegantly, carried herself so well. She was taller than me and just developing. She was such a sweet girl and obviously someone that would fit in the popular crowd although probably not prom queen material. Finally, I asked her age. She was just a couple of months older than my youngest and a year or so younger than my oldest. It was the first time in several years I'd made the comparison. I was totally shocked!!!! Totally! For days I was stunned. When I think of it now, I'm transported to how I felt at exactly that moment. She was definitely taller than my girls, but the girlfriend who was with her was also basically her size. (My girls are running small for their ages.) just barely speaks and Ariana communicates somewhere between four and six years of age, and even then the quality is not so good. Wow! What a shock. I remember when the girls were younger, I was totally gung-ho about doing anything and everything that might make the difference - even tried to afford a trip to Florida to swim with the dolphins to see if that would be "The Miracle" cure for mito, for my girls in particular. There was no therapy too expensive. Nothing I wouldn't try. With acceptance came an end to heroics and a certain peace. That peace was intruded upon with the realization of where we'd be by now - if . . . So, it does get easier over time. However, I doubt there will ever be a time when it's 100% no big deal. Hugs to all of us hurting, another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 Thank you . I am really being aware lately of drawing on Cameron's strengths. He is really a miracle. He should not even be with us, let alone walking around, using sign language, and tormenting his sisters LOL So, even though in many areas his is not "comparable", he is doing well and "looks great" as they say LOL May we celebrate our children and all their uniqueness this season and daily as they help us become the parents with the strongest resolve. Blessings, -----Original Message-----From: Fagan Sent: Thursday, December 19, 2002 6:56 PMTo: Mito Subject: Re: another low moment - When the girls were younger, I compared all the time. Roughly around age six I started to grieve the loss and just quit comparing. At that point, I only did it a few times per year with a deep regret. Somewhere around eight to ten, I basically just quit comparing. We were so far away from typical, there was really no comparison. A couple of months ago, I was working a booth at a dog show. Several people from the organization joined me. One brought her daughter, who sat there and talked about the dogs, how much she loved them, how she trained hers, what she liked about them, and on and on and on. She was very poised, spoke elegantly, carried herself so well. She was taller than me and just developing. She was such a sweet girl and obviously someone that would fit in the popular crowd although probably not prom queen material. Finally, I asked her age. She was just a couple of months older than my youngest and a year or so younger than my oldest. It was the first time in several years I'd made the comparison. I was totally shocked!!!! Totally! For days I was stunned. When I think of it now, I'm transported to how I felt at exactly that moment. She was definitely taller than my girls, but the girlfriend who was with her was also basically her size. (My girls are running small for their ages.) just barely speaks and Ariana communicates somewhere between four and six years of age, and even then the quality is not so good. Wow! What a shock. I remember when the girls were younger, I was totally gung-ho about doing anything and everything that might make the difference - even tried to afford a trip to Florida to swim with the dolphins to see if that would be "The Miracle" cure for mito, for my girls in particular. There was no therapy too expensive. Nothing I wouldn't try. With acceptance came an end to heroics and a certain peace. That peace was intruded upon with the realization of where we'd be by now - if . . . So, it does get easier over time. However, I doubt there will ever be a time when it's 100% no big deal. Hugs to all of us hurting, another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
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