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Re: [Families of Angelman Syndrome] Digest Number 17

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  • Stacey Vogele
    We are still new in the ball game and sometimes, you just live day to day. My best advice for long-distance friends, is to show you support and/or care. Call
    Message 1 of 6 , Mar 4 5:25 PM
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      We are still new in the ball game and sometimes, you just live day to day.
      My best advice for long-distance friends, is to show you support and/or
      care. Call or email to let them know you are there. Offer to do any
      research that they may not have time to do because they are busy with caring
      for their child. Just call once in awhile to let them vent. At first the
      grief is over-powering. Both the child's life and your own pass before your
      eyes. All the dreams you had for your child vaporize. At least they do
      when the diagnosis actually sinks in, and depending on the severity of how
      the child is affected. After a time, the pain seems to lessen as I focused
      on my child and her medical care and contuing to search for more medical
      knowledge and answers. Now I deeply love our daughter and I understand that
      there is some purpose for her coming to us. I always appreciate hearing
      from others how special parents of handicapped children are. Some people
      are insulted when they are told, "God chose you to be the parents." I never
      have been offended, I thought it was a nice idea that for some strange
      reason, he picked me to be the best Mom I can for our disabled daughter.
      Our child has made us both better parents, more understanding and patient,
      and a stronger marriage. Something we didn't expect. My best friends email
      me and/or check in with us. They are still willing to come and visit when
      they can, and not act afraid of our daughter. Hope this helps.

      Stacey Vogele
      Mother to 22 month old Tana, clinical angelman's, severely affected
      ----- Original Message -----
      From: <familiesofangelmansyndrome@yahoogroups.com>
      To: <familiesofangelmansyndrome@yahoogroups.com>
      Sent: Tuesday, March 04, 2003 4:14 AM
      Subject: [Families of Angelman Syndrome] Digest Number 17


      > To unsubscribe from this group, send an email to:
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      >
      > ------------------------------------------------------------------------
      >
      > There is 1 message in this issue.
      >
      > Topics in this digest:
      >
      > 1. Friend of newly diagnosed
      > From: "lshoveinbrown <lshoveinbrown@...>"
      <lshoveinbrown@...>
      >
      >
      > ________________________________________________________________________
      > ________________________________________________________________________
      >
      > Message: 1
      > Date: Mon, 03 Mar 2003 19:14:41 -0000
      > From: "lshoveinbrown <lshoveinbrown@...>"
      <lshoveinbrown@...>
      > Subject: Friend of newly diagnosed
      >
      > We just found out our very good friends have had their 2 1/2 year old
      > son diagnosed. We live in CO and they're in TX. Any ideas on how
      > best to show support, how to help them through the initial shock of
      > their discovery, as well as support long term?
      >
      >
      >
      > ________________________________________________________________________
      > ________________________________________________________________________
      >
      >
      >
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    • Laura Shovein-Brown
      Stacey- Your wisdom, kindness and strength bring a new braveness to others who are recently introduced AS. Thank you very much for writing me back and please
      Message 2 of 6 , Mar 4 9:26 PM
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        Stacey-
        Your wisdom, kindness and strength bring a new braveness to others who are recently introduced AS. Thank you very much for writing me back and please let me know if there is any other way you think I could be helpful.
        One of the things I've been interested in researching is respite care to give the young couple a night out someday...any ideas?
        Thanks again,
        Laura
        Stacey Vogele <SVOGELE@...> wrote:We are still new in the ball game and sometimes, you just live day to day.
        My best advice for long-distance friends, is to show you support and/or
        care. Call or email to let them know you are there. Offer to do any
        research that they may not have time to do because they are busy with caring
        for their child. Just call once in awhile to let them vent. At first the
        grief is over-powering. Both the child's life and your own pass before your
        eyes. All the dreams you had for your child vaporize. At least they do
        when the diagnosis actually sinks in, and depending on the severity of how
        the child is affected. After a time, the pain seems to lessen as I focused
        on my child and her medical care and contuing to search for more medical
        knowledge and answers. Now I deeply love our daughter and I understand that
        there is some purpose for her coming to us. I always appreciate hearing
        from others how special parents of handicapped children are. Some people
        are insulted when they are told, "God chose you to be the parents." I never
        have been offended, I thought it was a nice idea that for some strange
        reason, he picked me to be the best Mom I can for our disabled daughter.
        Our child has made us both better parents, more understanding and patient,
        and a stronger marriage. Something we didn't expect. My best friends email
        me and/or check in with us. They are still willing to come and visit when
        they can, and not act afraid of our daughter. Hope this helps.

        Stacey Vogele
        Mother to 22 month old Tana, clinical angelman's, severely affected
        ----- Original Message -----
        From: <familiesofangelmansyndrome@yahoogroups.com>
        To: <familiesofangelmansyndrome@yahoogroups.com>
        Sent: Tuesday, March 04, 2003 4:14 AM
        Subject: [Families of Angelman Syndrome] Digest Number 17


        > To unsubscribe from this group, send an email to:
        > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
        >
        >
        > ------------------------------------------------------------------------
        >
        > There is 1 message in this issue.
        >
        > Topics in this digest:
        >
        > 1. Friend of newly diagnosed
        > From: "lshoveinbrown <lshoveinbrown@...>"
        <lshoveinbrown@...>
        >
        >
        > ________________________________________________________________________
        > ________________________________________________________________________
        >
        > Message: 1
        > Date: Mon, 03 Mar 2003 19:14:41 -0000
        > From: "lshoveinbrown <lshoveinbrown@...>"
        <lshoveinbrown@...>
        > Subject: Friend of newly diagnosed
        >
        > We just found out our very good friends have had their 2 1/2 year old
        > son diagnosed. We live in CO and they're in TX. Any ideas on how
        > best to show support, how to help them through the initial shock of
        > their discovery, as well as support long term?
        >
        >
        >
        > ________________________________________________________________________
        > ________________________________________________________________________
        >
        >
        >
        > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
        >
        >


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      • Kathy Leonard
        Hi Laura, I guess I missed the first post on this, but if you are interested in researching respite care for your friend, let me know what state they live in
        Message 3 of 6 , Mar 5 7:42 AM
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          Hi Laura,

          I guess I missed the first post on this, but if you are interested in researching respite care for your friend, let me know what state they live in and I can get you the info. Not only is respite care available, but there are state waiver programs, and extra insurance to pay for equipment and such available if they qualify.

          Again, let me know where your friend lives and I will post the links





          Kathy
          Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

          Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



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        • Laura Shovein-Brown
          Hi Kathy- Thanks so much for your encouraging message. My friends live in Houston, TX. I m sure they will be excited to hear about your information. Many
          Message 4 of 6 , Mar 5 7:30 PM
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            Hi Kathy-
            Thanks so much for your encouraging message. My friends live in Houston, TX. I'm sure they will be excited to hear about your information.
            Many thanks,
            Laura
            Kathy Leonard <candlecrazy_1999@...> wrote:
            Hi Laura,

            I guess I missed the first post on this, but if you are interested in researching respite care for your friend, let me know what state they live in and I can get you the info. Not only is respite care available, but there are state waiver programs, and extra insurance to pay for equipment and such available if they qualify.

            Again, let me know where your friend lives and I will post the links





            Kathy
            Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

            Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



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          • Kathy Leonard
            Hi Laura, Sorry it took me so long to respond to this,,, i ve been a little busy but here are the link. http://www.mhmr.state.tx.us/default.html This will
            Message 5 of 6 , Mar 6 12:06 PM
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              Hi Laura,

              Sorry it took me so long to respond to this,,, i've been a little busy but here are the link.

              http://www.mhmr.state.tx.us/default.html

              This will explain the services and let you know what is available for your friend. I didn't look over this site but it should have what is called the Medicaid Waiver Program. If you friend has any questions i can connect her with a local person in her area. Do you know if she is a member of the Angelman Syndrome Foundation?

              Remember, as a friend of this person sometimes when she calls you she just wants someone to listen. Your a great friend to be checking into this for her.

              Let me know if you have any questions or i can help you or your friend in any way.





              Kathy
              Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

              Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



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            • Laura Shovein-Brown
              Thank you, Kathy! I forwarded the information to my friends and really appreciate you taking the time to be so helpful. Bless you and your family! Laura Kathy
              Message 6 of 6 , Mar 9 2:53 PM
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                Thank you, Kathy! I forwarded the information to my friends and really appreciate you taking the time to be so helpful.
                Bless you and your family!
                Laura
                Kathy Leonard <candlecrazy_1999@...> wrote:
                Hi Laura,

                Sorry it took me so long to respond to this,,, i've been a little busy but here are the link.

                http://www.mhmr.state.tx.us/default.html

                This will explain the services and let you know what is available for your friend. I didn't look over this site but it should have what is called the Medicaid Waiver Program. If you friend has any questions i can connect her with a local person in her area. Do you know if she is a member of the Angelman Syndrome Foundation?

                Remember, as a friend of this person sometimes when she calls you she just wants someone to listen. Your a great friend to be checking into this for her.

                Let me know if you have any questions or i can help you or your friend in any way.





                Kathy
                Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

                Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



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