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Thread: any disabled mom's out there?

  1. #41
    And you have posted about having sex as well. Strange deal.
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

  2. #42
    Quote Originally Posted by november
    And you have posted about having sex as well. Strange deal.
    I guess she read a lot about that also.
    Very weird.
    If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


    Sometimes it is easier to widen doors than it is to open minds.

  3. #43
    Senior Member Mona~on~wheels's Avatar
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    I have hereditary spastic paraparesis and have 2 toddlers. Emma is 2 1/2 and Angela is 15 months. I'm a single mommy who is using a wheelchair most of the time. My oldest daughter has the same disorder I do and uses a walker to get around and uses catheters everyday.

    I'd love to chat with other disabled mommies!

    Jessie
    lie?


    Quote Originally Posted by jessie.gray
    Thanks! I just try to take it one day at a time.
    I didn't even know I had passed the gene onto Emma until I got her tested when she was 2. For a couple months before that, she had been falling down more often, complained of her legs hurting (many sleepless nights for me), and she started to have bladder and bowel incontinence. Her results came back positive for spastic paraparesis. Angela was tested at the same time, and she was negative.

    Right now, Emma uses a Snug Seat walker to get around with, wears AFO leg braces (just like mommy), and uses intermittent hydrophillic catheters 4 times a day. She also still is having to wear cloth diapers for the bowel accidents and small urine leaks thoughout the day. A lady online that makes fitted cloth diapers made us some that had Dora The Explorer on them, as well as Grover and Elmo. Emma really likes them, since they look more like undies. We mostly use Sandy's Fitteds and Fuzzi Bunz cloth diapers and Bumkins diaper covers. The only thing we had to get use to was the cathing. Emma would cry everytime we'd have to do that, but now exclaims to my relative that she pees just like mama. Both girls are also still breastfeeding to get more of the immune benefits from the milk.

    Both girls love to get rides on my wheelchair. I'm the only mom in the family who is disabled and has a child that's disabled, so its nice to talk to others.

    Jessie
    passing genes to a kid that doesn't exist? lies?

    When you lie to people it's like making fun of them.

    To go into such detail about sick children & elaborate like above is more than a little fabrication to sell products.

    I'm glad you prayed and God forgave you.
    I hope this means you've changed your ways and aren't deceiving people any more.

  4. #44
    This is unbelievable. People never cease to amaze me.
    Last edited by JerseyGirl; 08-14-2008 at 01:37 PM.
    Live Every Day Like It's Your Last!

    C3-C4 and T12-L1 since July 1988

  5. #45
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by Mona~on~wheels
    lie?




    passing genes to a kid that doesn't exist? lies?

    When you lie to people it's like making fun of them.

    To go into such detail about sick children & elaborate like above is more than a little fabrication to sell products.

    I'm glad you prayed and God forgave you.
    I hope this means you've changed your ways and aren't deceiving people any more.
    I have definetly learned my lesson big time. I honestly wish I hadn't even told anyone this lie. All weekend long until Tuesday, I was so upset about lying that I was physically ill, and I don't want to feel like that again.

    In terms of sex, I have not had actual vaginal intercourse, but have had other forms of sex, which I didn't care for.
    Again, I am very sorry for the confusion and annoyance that this whole thing has caused, big time!

    Jessie
    Last edited by jessie.gray; 08-18-2008 at 04:11 PM.

  6. #46
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    T7-8 since Feb 2005

  7. #47
    Quote Originally Posted by jessie.gray
    I have definetly learned my lesson big time. I honestly wish I hadn't even told anyone this lie. All weekend long until Tuesday, I was so upset about lying that I was physically ill, and I don't want to feel like that again.

    In terms of sex, I have had oral sex and anal sex a couple of time (anal sex prior to my ileostomy surgery), but no vaginal intercourse.
    Again, I am very sorry for the confusion and annoyance that this whole thing has caused, big time!

    Jessie
    Hi Jessie,

    We all make mistakes. Yours was a strange one but a mistake nonetheless. I can sense your remorse, try not to be too hard on yourself.

    I'm relieved that you don't have any kids with HSP. Be careful, you don't want to bear any children if there's a chance they will inherit the disease. From my quick research, your offspring may have a 50/50 chance of getting the bad gene. Not good.

    Now about the sex thing. TMI... wayyy to much!

    Take it easy,

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  8. #48
    Senior Member Timaru's Avatar
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    Jessie.

    Don't beat yourself up too much over this, you were dealt a rotten hand at birth and have mixed what you wish for with reality.

    You're not the first to do this nor will you be the last.

    Straighten out any confusion you've caused with this and then put it behind you.

    All the best,

    Jonathan.

  9. #49
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by bob clark
    Hi Jessie,

    We all make mistakes. Yours was a strange one but a mistake nonetheless. I can sense your remorse, try not to be too hard on yourself.

    I'm relieved that you don't have any kids with HSP. Be careful, you don't want to bear any children if there's a chance they will inherit the disease. From my quick research, your offspring may have a 50/50 chance of getting the bad gene. Not good.

    Now about the sex thing. TMI... wayyy to much!

    Take it easy,

    Bob.
    The lady who changes the dressing on my PICC Line said the same thing in terms of having kids with HSP. She even asked me if my brother and sister had ever got tested and I said no, because they never showed any signs of the defect. She told me that if I do decide to have kids in the future, I should definetly get genetic testing done and all sorts of stuff like that to make sure the child won't have HSP. All I know is that no one should ever have to deal with having HSP, 'cause it sucks royaly.
    My Mom has been trying to talk me into donating my body to science after I die, so they can possibly find a cure for it, but I'm still undecided on that.

  10. #50
    Jessie-
    I think Jonathan's words are very wise, I wish you the best in the future.

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