Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 In a message dated 11/8/00 8:27:53 AM Eastern Standard Time, patriciacarlberg@... writes: > im having problems, i tell my parents things, and they dont seem to > hear me right, what should i do? Tricia, What kind of problems are you having? Have you tried talking to friends, other relatives or since you are still in school a counselor? Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 I feel bad because before I knew what my daughter has i would tell her to put her feet down and walk flat! i would even get mad because she would complain about shoes. Now I feel terrible because she cant even wear shoes. I am very sorry that someone would say that to a child! I know now I never say anything about the way she walks. ( unless it's just plain ol silly) Kim --- Mommy2Adam@... wrote: > In a message dated 12/18/2001 12:34:05 PM Pacific > Standard Time, > trupe@... writes: > > > > My own father was ashamed of me, once telling me > that I " walked like a > > $#@^% & **! gorilla " . > > > > Wow parents can be cruel! Hope you over came this > one! > jenny > > > [Non-text portions of this message have been > removed] > > --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Kim... I know exactly how you feel.....I did the same thing. I harped on her to walk on her flat feet constantly. We'd go to the mall and we'd buy shoes and then when it came time to wear them, she'd say they hurt. I would get angry. I would tell her " how can they hurt when I asked you a hundred times how they felt when we tried them on and you said OK " . I just feel like an awful parent now. It's only been four weeks since she's been diagnosed (at 6). This past weekend we went Christmas shopping. Imagine this...my daughter is very tall and she asked if she could ride in her old umbrella stroller at the mall so her feet wouldn't hurt. Well, needless to say if I hadn't known she had CMT I would have said NO WAY! But, I let her ride and you can imagine the people staring. Here's this tall 6 year old girl riding in a stroller made for a 3 year old. It didn't bother her in the least....However, it did bother me. My heart just broke watching people look at her and laugh. I think this CMT thing is going to be harder for me than it will ever be for her. She's a trooper! Happy Holidays! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 I heard it all, too " walk RIGHT!, " " Don't Slouch! " " Clumbsy KID! " and much, worse. My dad told my brother he walked like a $#@^% & **! gorilla, TOO, maybe our dad's are related! I have way too much to say on this subject. Just wanted to tell KIm, don't feel bad or guilty when you DID NOT KNOW! If and when she is old enough, just make sure you tell her, you didn't know and you're sorry. Just some advice. It's like an attitude virus - I have a brother who STILL harbors resentment for being BORN and he's 39 years old. And my mom wasn't even diagnosed when we were born. You touched a nerve on this one, Gretchen. It's GREAT question and I think anyone who needs to release all of the bad memories should get them out of their system. It appears like most who were diagnosed as children seem to have experienced the same 'ignorance,' and seem to have been diagnosed in the early 70's and before. I'm curious, if our younger members had as much of a problem. They may have. It will be THIS new generation, the children diagnosed now, who will be much better adjusted because now we live in a time where people 'talk' about things and search for answers. And thanks tho Gretchen and , hopefully, no child with a neuromuscular disease will ever be called a $#@^% & **! gorilla, by a parent. kimberly barrera wrote: > I feel bad because before I knew what my daughter has i would tell > her to put her feet down and walk flat! i would even get mad because > she would complain about shoes. Now I feel terrible because she cant > even wear shoes. I am very sorry that someone would say that to a > child! I know now I never say anything about the way she walks. ( > unless it's just plain ol silly) Kim > --- Mommy2Adam@... wrote: > > In a message dated 12/18/2001 12:34:05 PM Pacific > > Standard Time, > > trupe@... writes: > > > > > > > My own father was ashamed of me, once telling me > > that I " walked like a > > > $#@^% & **! gorilla " . > > > > > > > Wow parents can be cruel! Hope you over came this > > one! > > jenny > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 please stop punishing yourself. I was in your daughter's position as a child, the shoes bit I remember it so well and the walking thing. My father used to make me walk he meant well at the time but they were like you - they didn't know there was anything wrong, why should they all the doctors said was I had funny feet. We didn't know I had CMT until Jan 2000 two months after my 39th birthday and by that time I was in a wheelchair. Yes if they'd known things couldv'e been so different but they didn't but it's in the past and no one can change things. You've got a real opportunity to help your daughter and as she's been diagnosed so young you CAN make a difference to her life and health. You're a fantastic mother, we know that and more importantly so does your daughter. The two of you have a big hug from me and have a wonderful Christmas because the future is definitely looking bright for you both. Love and hugs Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Benzo crazymom8592407@... ; Sent: Wednesday, December 19, 2001 1:57 PM Subject: Re: [] parents Kim... I know exactly how you feel.....I did the same thing. I harped on her to walk on her flat feet constantly. We'd go to the mall and we'd buy shoes and then when it came time to wear them, she'd say they hurt. I would get angry. I would tell her " how can they hurt when I asked you a hundred times how they felt when we tried them on and you said OK " . I just feel like an awful parent now. It's only been four weeks since she's been diagnosed (at 6). This past weekend we went Christmas shopping. Imagine this...my daughter is very tall and she asked if she could ride in her old umbrella stroller at the mall so her feet wouldn't hurt. Well, needless to say if I hadn't known she had CMT I would have said NO WAY! But, I let her ride and you can imagine the people staring. Here's this tall 6 year old girl riding in a stroller made for a 3 year old. It didn't bother her in the least....However, it did bother me. My heart just broke watching people look at her and laugh. I think this CMT thing is going to be harder for me than it will ever be for her. She's a trooper! Happy Holidays! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Heck, my mom told me " Stop that. " " You walk just like your father! " LOL Go figure huh! Jim Nash --- Judy Piersol <stronggirl2@...> wrote: > I heard it all, too " walk RIGHT!, " " Don't Slouch! " > " Clumbsy KID! " and > much, worse. My dad told my brother he walked like a > $#@^% & **! gorilla, > TOO, maybe our dad's are related! > I have way too much to say on this subject. Just > wanted to tell KIm, > don't feel bad or guilty when you DID NOT KNOW! If > and when she is old > enough, just make sure you tell her, you didn't know > and you're sorry. > Just some advice. It's like an attitude virus - I > have a brother who > STILL harbors resentment for being BORN and he's 39 > years old. And my > mom wasn't even diagnosed when we were born. You > touched a nerve on this > one, Gretchen. It's GREAT question and I think > anyone who needs to > release all of the bad memories should get them out > of their system. It > appears like most who were diagnosed as children > seem to have > experienced the same 'ignorance,' and seem to have > been diagnosed in the > early 70's and before. I'm curious, if our younger > members had as much > of a problem. They may have. It will be THIS new > generation, the > children diagnosed now, who will be much better > adjusted because now we > live in a time where people 'talk' about things and > search for answers. > And thanks tho Gretchen and , hopefully, no > child with a > neuromuscular disease will ever be called a > $#@^% & **! gorilla, by a > parent. > > > kimberly barrera wrote: > > > I feel bad because before I knew what my daughter > has i would tell > > her to put her feet down and walk flat! i would > even get mad because > > she would complain about shoes. Now I feel > terrible because she cant > > even wear shoes. I am very sorry that someone > would say that to a > > child! I know now I never say anything about the > way she walks. ( > > unless it's just plain ol silly) Kim > > --- Mommy2Adam@... wrote: > > > In a message dated 12/18/2001 12:34:05 PM > Pacific > > > Standard Time, > > > trupe@... writes: > > > > > > > > > > My own father was ashamed of me, once telling > me > > > that I " walked like a > > > > $#@^% & **! gorilla " . > > > > > > > > > > Wow parents can be cruel! Hope you over came > this > > > one! > > > jenny > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2001 Report Share Posted December 20, 2001 alisha here, my parents get mad at me if i come home early from school or don't go at all because i am in so much pain. so today instead of writing a math test i went upstairs to where the couch is in the guidence office and laid down with my walkman and a book and just tried to relax and pray that the pain would get better. when my guidence counsellor asked me if there was anyone i could call i told her that it didn't matter what happened i would get introuble because of my pain. i used to fall down a lot because i was in so much pain and i was tired plus i just couldn't hold myself up at all, i would sometimes go to the hospital incase i had hurt myself and just because i was in so much pain i wanted ANY DOCTOR TO DO SOMETHING ABOUT IT!! not much would happen and my parents would want me back in school the next day. infact about 2 or 3 years ago i spent one month at home, i missed school completely because of my pain and i was harassed everyday to go back to school. it didn't matter that i was in pain, the only thing that mattered was that i was missing school. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
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