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Re: [Families of Angelman Syndrome] Familes I need your Help!

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  • monica carpio
    To Mrs. Sarah Good, Mrs. Sarah my the lord bless you for taking time to respond to this message. You have no idea what it means to me. I sometimes feel like I
    Message 1 of 13 , Dec 15, 2005
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      To Mrs. Sarah Good,

      Mrs. Sarah my the lord bless you for taking time to respond to this message.
      You have no idea what it means to me. I sometimes feel like I am the only
      Angel parent that feels like this and I often feel bad because i feel like a
      "Good Mother" should'nt have these bad thoughts. I really apreciate your
      support and knowing that it is not hard only for me. The emotional stress
      and the toll it take on us is sometimes bigger than some poeple can imagine.
      To be sincere I sometime even feel a little envy to read some e-mail where
      some parents describe thier little angels walking and babbeing some words.
      Like I mentioned before Ifeel like all my dreams where shattered when my
      only daughter(i have three kids and Crystal is my youngest and my little
      girl) was diag. with angelmans. I even feel a bit bitterat life. I usually
      find myself crying when I read the posts in the group, I shed tears of joy
      because I read some babies are walking and I shed tears becuase my baby is
      so so so far behind. Your know I wrote down your thought and I will make
      sure I make it my thought EVERYDAY. I would really love to share numbers and
      e-mail addresses it would be very nice to have someone to "talk" to.
      may the lord bless you and your little angel.

      Merry X-mas from "foggy" Fresno!


      >From: sara good <iamdonna42701@...>
      >Reply-To: familiesofangelmansyndrome@yahoogroups.com
      >To: familiesofangelmansyndrome@yahoogroups.com
      >Subject: Re: [Families of Angelman Syndrome] Familes I need your Help!
      >Date: Wed, 14 Dec 2005 13:55:39 -0800 (PST)
      >
      >Hi, hun! You are so brave on sharing how it really does feel. And your
      >feelings are completely normal. I have felt the same way. And still do
      >deep down. I am forced to put a smile on my face day to day because my son
      >Joshua is progressing. He can walk in a walker...not alone. And he utters
      >ma-ma and bubba. I think I speak the truth when I say it is so hard for
      >all of us Angel mothers and fathers even if our child is fortunate enough
      >to be walking or talking. And we always don't talk about how hard it is.
      >In fact I have been so depressed about exactly what you conveyed in your
      >message. I have no one to talk to about how bad I feel. How cheated I
      >feel that my son is. How frustrating each day is with him playing in the
      >toilet, not being able to tell me he is hungry, tired, or hurting. The
      >trips to theraphy with all of his equipment. The stares in restaraunts as
      >he chews on his sock or crams food in his mouth and lets it fall back out.
      >The wonder of when he will walk on
      > his own. Or if he will speak? The fear of when he gets older and the
      >more stares I will get and questions. And sometimes I even feel like my
      >life is not mine. I feel like a prisoner to my home taking care of him. I
      >love him though and although I speak the truth when I say I feel like a
      >prisoner I also feel blessed that I am able to care for him. What about
      >kindergarten for him. Life is not normal. And that is difficult to
      >accept. When I recieved the diagnosis on Josh I was relieved and scared.
      >I thought he had some rare disorder that would take his life at a young
      >age. But, to hear he had Angelmans and would hold a normal life
      >expectancy-well, this relieved me. And I was forced to put on a big smile
      >because although everyone around me supported me they did not understand.
      >I smiled and never really cried because everyone said I had so much to be
      >thankful for. That he looked fine. Yeah. I heard that. And that it
      >wasn't the end of the world. But, when I was alone I
      > felt like it was the end of our world. My chest felt heavy constantly
      >and I bawled like a baby when I was alone because I was so sad. I even
      >grew furious with God because I did not understand why he does this to
      >children. And why he chose me.
      >
      > But, it helps to get these feelings out...because they are natural. And
      >it is hard for others to understand who don't really know what you are
      >going through. But, I do. And hun it takes a while to absorb it and
      >accept it. You need to give yourself time. And it still hurts for me and
      >I still get so sad and I feel so alone but, these thoughts help me:
      > God gave you that Angel because you are special and he handed that child
      >to you because there are so many people in this world and you are one of
      >the strongest. He picked "you" to take care of that child. And God does
      >not give you any more than you can handle. I know what you mean by being
      >so strong. People have told me "I don't see how you do it. I could never
      >do it. You are strong." and I think "What choice do I have really" ?
      >
      > And another thing I keep in mind on a daily basis is that the sky is the
      >limit. Never give your Angel limits. I have not with my son. I still
      >talk to him although he may never speak. I know he understands. And I
      >walk around with him and keep up the theraphy. The little things he does
      >that would be so small and not a big to deal to others matter the most.
      >For instance I cried because he learned to climb out of his play pin. That
      >is the only age appropriate milestone he has reached so far.
      >
      > Monica, it is frustrating. It is difficult. And we need to be in this
      >group for support just like this. I want to let you know that I am here
      >and I really do understand the feelings of fear, jelousy, lonliness, hurt,
      >anger. It is hard to wake up sometimes and look at all the good. But,
      >each day if you find something to laugh about...just laugh at something
      >that is so terrible then you will get by. And I know that you are strong
      >and I know that you are a great mom! Please feel free to contact me if you
      >wish. Also if you would like to send a private email I will give you my
      >phone number and if you would like to talk I am here. I would love to have
      >someone to talk to-a friend who really understood.
      >
      >monicacarpio_3 <MONICACARPIO_3@...> wrote:
      > Good Morning to you all,
      >
      > I hope all is going well for you because for me it all seems to
      >be going down hill, ever since my daughter, Crystal, got diagnosed
      >it seems she is going back and back and back. As is, my hopes and
      >dreams seem to have been shatterd to pieces when they told me what
      >was wrong with her "Your daughter has angelmans" said the
      >genetisist doc. I was really in denail, wanting to think that this
      >was all a very bad dream, when my brain finally absorbed the gravity
      >of the matter, all I could think of was why me? What did I do? Who's
      >fault is it and why.
      >I've been a member of the group for about 2 maybe 3 months and to be
      >sincere I really envy you all for the strenth you guys have. It's
      >been about 9 months that my daughter got diagnosed and it's been so
      >darn hard, I read your post where you say that your little angels
      >are sitting-up, walking and even being able to say a couple of
      >words, and my heart just fills with rage to think that my daughter
      >does'nt do nothing but lay there with the happiest smile on her
      >sweet face. Why?
      >At this point all I feel I have is questions and no answers. Please
      >be so kind as to help me explain this situation. I know there is a
      >lot of poeple that love my daughter and there are a lot of poeple
      >that are praying for her but sometimes I jsut feel like god has
      >negclected us, esspecially her. I have all these fears,and don't
      >know what to think, What will be of my darling little angel the day
      >am gone? Who will have the love,time, and patience to take care of
      >her?
      >
      >
      >PLEASE HELP!
      >SAD,LONELY, AND CONFUSSED MOTHER IN CALIFORNIA.
      >
      >
      >
      >
      >
      >
      >
      >
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      >
      > To unsubscribe from this group, send an email to:
      > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
      >
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    • Yolonda Mclaughlin
      I TOTALLY UNDERSTAND HOW YOU FEEL BECAUSE I HAD & STILL DO HAVE THOSE EXACT SAME FEELINGS. IT S TOO BAD I CANT GIVE YOU AN ANSWER. ONLY GOD KNOWS WHY IT
      Message 2 of 13 , Dec 16, 2005
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        I TOTALLY UNDERSTAND HOW YOU FEEL BECAUSE I HAD & STILL DO HAVE THOSE EXACT
        SAME FEELINGS. IT'S TOO BAD I CANT GIVE YOU AN ANSWER. ONLY GOD KNOWS WHY IT
        HAPPENED TO YOU & ONLY GOD CAN GET YOU THROUGH THIS W/O YOU LOSING YOUR MIND
        BECAUSE SOMETIMES I FEEL JUST LIKE THATS GOING TO HAPPEN(ESPECIALLY WHEN SHE
        GETS SICK & HAS TO GO INTO THE HOSPITAL). BUT HONESTLY ALL I CAN TELL YOU IS
        TO JUST LOVE HER UP, BECAUSE SHE NEEDS YOU. AND IS ALWAYS GOING TO NEED YOU.
        JUST PRAY FOR HER EVERYDAY & PRAY FOR PEACE OF MIND FOR YOURSELF. ALL SHE
        REALLY NEEDS IS YOUR LOVE & SUPPORT. EVEN WHEN YOU FEEL SO LOW YOU CANT GET
        UP- JUST LOOK AT HER BIG SMILE & KNOW THAT IT WILL BE OKAY. BECAUSE IT COULD
        BE MUCH WORSE THAN WHAT IT IS! EVEN IF YOU DONT SEE THAT IT COULD BE. YOU
        WERE GIVEN THAT CHILD FOR A REASON. DONT QUESTION IT. JUST BE THE BEST
        MOTHER YOU CAN BE & DONT FEEL SORRY FOR HER - OR YOURSELF. ONE DAY SHE'LL
        GET UP & SHE'LL DO ALL OF THE THINGS THAT YOU HOPE & PRAY THAT SHE WILL.
        JUST HAVE FAITH. GOD HAS NOT ABANDONED YOU OR YOUR CHILD. AND HE WOULDN'T
        PUT MORE ON YOU THAN YOU CAN BEAR.IT'S JUST GOING TO TAKE TIME. DONT LOOK TO
        BLAME ANYONE FOR HER CONDITION EITHER- IT WAS JUST ONE OF THOSE FREAK THINGS
        THAT "JUST HAPPENED". MAKE THE BEST OF IT AND GIVE HER ALL OF THE LOVE &
        ATTENTION THAT YOU CAN. IT WILL BE ALRIGHT. EVEN IF YOU DONT THINK IT CAN,
        IT WILL. AND ALWAYS KEEP THE LINES OF COMMUNICATION OPEN . YOU CANT KEEP IT
        ALL INSIDE. IT DOES HELP TO TALK TO SOMEONE.DONT TURN IT IN ON YOURSELF.I
        HOPE THAT HELPS A LITTLE.
        THERES A WEBSITE CALLED NetHugs.Com. IT SENDS YOU AN INSPIRATIONAL CARD
        EVERYDAY. CHECK IT OUT. LITTLE THINGS DO MEAN A LOT.FEEL BETTER & GO KISS
        THAT LITTLE ANGEL OF YOURS. YM.

        -------Original Message-------

        From: monicacarpio_3
        Date: 12/14/05 13:13:53
        To: familiesofangelmansyndrome@yahoogroups.com
        Subject: [Families of Angelman Syndrome] Familes I need your Help!

        Good Morning to you all,

        I hope all is going well for you because for me it all seems to
        be going down hill, ever since my daughter, Crystal, got diagnosed
        it seems she is going back and back and back. As is, my hopes and
        dreams seem to have been shatterd to pieces when they told me what
        was wrong with her "Your daughter has angelmans" said the
        genetisist doc. I was really in denail, wanting to think that this
        was all a very bad dream, when my brain finally absorbed the gravity
        of the matter, all I could think of was why me? What did I do? Who's
        fault is it and why.
        I've been a member of the group for about 2 maybe 3 months and to be
        sincere I really envy you all for the strenth you guys have. It's
        been about 9 months that my daughter got diagnosed and it's been so
        darn hard, I read your post where you say that your little angels
        are sitting-up, walking and even being able to say a couple of
        words, and my heart just fills with rage to think that my daughter
        does'nt do nothing but lay there with the happiest smile on her
        sweet face. Why?
        At this point all I feel I have is questions and no answers. Please
        be so kind as to help me explain this situation. I know there is a
        lot of poeple that love my daughter and there are a lot of poeple
        that are praying for her but sometimes I jsut feel like god has
        negclected us, esspecially her. I have all these fears,and don't
        know what to think, What will be of my darling little angel the day
        am gone? Who will have the love,time, and patience to take care of
        her?


        PLEASE HELP!
        SAD,LONELY, AND CONFUSSED MOTHER IN CALIFORNIA.








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        [Non-text portions of this message have been removed]
      • monica carpio
        Thanks so much Mrs. Yolanda, I feel really bad at the thoughts that I sometimes have but it s good to know that I am not the only one that sometimes falls
        Message 3 of 13 , Dec 16, 2005
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          Thanks so much Mrs. Yolanda,

          I feel really bad at the thoughts that I sometimes have but it's good to
          know that I am not the only one that sometimes falls apart. This groups has
          helped me a lot. It's a place where I can relive some stress by letting my
          feeling s out and not being condemmed as a ''Bad mother''. I know am not
          because my daughter is well taken care of and she has all the love possible
          but it's still sometimes hard. Thanks so much for your understanding. May
          the lord bless you and your family always!

          >From: "Yolonda Mclaughlin" <yolonda.mclaughlin@...>
          >Reply-To: familiesofangelmansyndrome@yahoogroups.com
          >To: <familiesofangelmansyndrome@yahoogroups.com>
          >Subject: Re: [Families of Angelman Syndrome] Familes I need your Help!
          >Date: Fri, 16 Dec 2005 10:49:21 -0500 (Eastern Standard Time)
          >
          >I TOTALLY UNDERSTAND HOW YOU FEEL BECAUSE I HAD & STILL DO HAVE THOSE EXACT
          >SAME FEELINGS. IT'S TOO BAD I CANT GIVE YOU AN ANSWER. ONLY GOD KNOWS WHY
          >IT
          >HAPPENED TO YOU & ONLY GOD CAN GET YOU THROUGH THIS W/O YOU LOSING YOUR
          >MIND
          >BECAUSE SOMETIMES I FEEL JUST LIKE THATS GOING TO HAPPEN(ESPECIALLY WHEN
          >SHE
          >GETS SICK & HAS TO GO INTO THE HOSPITAL). BUT HONESTLY ALL I CAN TELL YOU
          >IS
          >TO JUST LOVE HER UP, BECAUSE SHE NEEDS YOU. AND IS ALWAYS GOING TO NEED
          >YOU.
          >JUST PRAY FOR HER EVERYDAY & PRAY FOR PEACE OF MIND FOR YOURSELF. ALL SHE
          >REALLY NEEDS IS YOUR LOVE & SUPPORT. EVEN WHEN YOU FEEL SO LOW YOU CANT GET
          >UP- JUST LOOK AT HER BIG SMILE & KNOW THAT IT WILL BE OKAY. BECAUSE IT
          >COULD
          >BE MUCH WORSE THAN WHAT IT IS! EVEN IF YOU DONT SEE THAT IT COULD BE. YOU
          >WERE GIVEN THAT CHILD FOR A REASON. DONT QUESTION IT. JUST BE THE BEST
          >MOTHER YOU CAN BE & DONT FEEL SORRY FOR HER - OR YOURSELF. ONE DAY SHE'LL
          >GET UP & SHE'LL DO ALL OF THE THINGS THAT YOU HOPE & PRAY THAT SHE WILL.
          >JUST HAVE FAITH. GOD HAS NOT ABANDONED YOU OR YOUR CHILD. AND HE WOULDN'T
          >PUT MORE ON YOU THAN YOU CAN BEAR.IT'S JUST GOING TO TAKE TIME. DONT LOOK
          >TO
          >BLAME ANYONE FOR HER CONDITION EITHER- IT WAS JUST ONE OF THOSE FREAK
          >THINGS
          >THAT "JUST HAPPENED". MAKE THE BEST OF IT AND GIVE HER ALL OF THE LOVE &
          >ATTENTION THAT YOU CAN. IT WILL BE ALRIGHT. EVEN IF YOU DONT THINK IT CAN,
          >IT WILL. AND ALWAYS KEEP THE LINES OF COMMUNICATION OPEN . YOU CANT KEEP IT
          >ALL INSIDE. IT DOES HELP TO TALK TO SOMEONE.DONT TURN IT IN ON YOURSELF.I
          >HOPE THAT HELPS A LITTLE.
          >THERES A WEBSITE CALLED NetHugs.Com. IT SENDS YOU AN INSPIRATIONAL CARD
          >EVERYDAY. CHECK IT OUT. LITTLE THINGS DO MEAN A LOT.FEEL BETTER & GO KISS
          >THAT LITTLE ANGEL OF YOURS. YM.
          >
          >-------Original Message-------
          >
          >From: monicacarpio_3
          >Date: 12/14/05 13:13:53
          >To: familiesofangelmansyndrome@yahoogroups.com
          >Subject: [Families of Angelman Syndrome] Familes I need your Help!
          >
          >Good Morning to you all,
          >
          > I hope all is going well for you because for me it all seems to
          >be going down hill, ever since my daughter, Crystal, got diagnosed
          >it seems she is going back and back and back. As is, my hopes and
          >dreams seem to have been shatterd to pieces when they told me what
          >was wrong with her "Your daughter has angelmans" said the
          >genetisist doc. I was really in denail, wanting to think that this
          >was all a very bad dream, when my brain finally absorbed the gravity
          >of the matter, all I could think of was why me? What did I do? Who's
          >fault is it and why.
          >I've been a member of the group for about 2 maybe 3 months and to be
          >sincere I really envy you all for the strenth you guys have. It's
          >been about 9 months that my daughter got diagnosed and it's been so
          >darn hard, I read your post where you say that your little angels
          >are sitting-up, walking and even being able to say a couple of
          >words, and my heart just fills with rage to think that my daughter
          >does'nt do nothing but lay there with the happiest smile on her
          >sweet face. Why?
          >At this point all I feel I have is questions and no answers. Please
          >be so kind as to help me explain this situation. I know there is a
          >lot of poeple that love my daughter and there are a lot of poeple
          >that are praying for her but sometimes I jsut feel like god has
          >negclected us, esspecially her. I have all these fears,and don't
          >know what to think, What will be of my darling little angel the day
          >am gone? Who will have the love,time, and patience to take care of
          >her?
          >
          >
          >PLEASE HELP!
          >SAD,LONELY, AND CONFUSSED MOTHER IN CALIFORNIA.
          >
          >
          >
          >
          >
          >
          >
          >
          >SPONSORED LINKS Family cruise special Learning disabled Disabled equipment
          >Family vacation special
          >
          >
          >
          >YAHOO! GROUPS LINKS
          >
          > Visit your group "familiesofangelmansyndrome" on the web.
          >
          > To unsubscribe from this group, send an email to:
          > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
          >
          > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
          >
          >
          >
          >
          >
          >
          >
          >[Non-text portions of this message have been removed]
          >

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        • Maria
          Hello Monica, you know Sara is right. don t give up. I know what you mean, by why me , or the feeling of how did this happen? Please read post #860 The Day
          Message 4 of 13 , Dec 17, 2005
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            Hello Monica, you know Sara is right. don't give up. I know what you
            mean, by "why me", or the feeling of how did this happen? Please
            read post #860 " The Day Reality Struck me". I wrote that one night
            sitting at my computer watching Coby sleep. I didn't know at the
            time what disability my son had. I felt so alone, and living on Guam
            I had to wait for a specialist to arrive on island. I didn't know
            until Coby was almost 5 years old. I didn't start walking until that
            time, but believe me it wasn't easy. It's true we are prisoners to
            our angels, but as soon as they smile at us its like the greatest
            feeling anyone could have. I won't lie to you, the road to helping
            our angel isn't easy, but some good will come out of it. I too talk
            to coby like he could speak, but all he really says is mum mum, and
            ada'. And everytime he plays "paint". wipes his poo-poo all over
            himself or the walls i pray its a sign that one day he'll potty. I
            get my bad times with family members when they would babysit my
            other nieces and nephew, but always seem to have an excuse not to
            babysit Coby. We have learned to just bring him with us everywhere
            we go. (except school of course)The day coby took 4 steps i cried it
            was like a miracle, and the day he kissed me when i asked, and the
            day he cried for me when i left the room. All these things i wished
            he would do, and prayed one day it will happen. and it did. it may
            seem small to others, but for me its not. I believing what my boss
            once told me. "watch what you wish for, because you might just get
            it" My son use to just lay in is playpen all day or sit in his swing
            and not complain. but now, he's all over the house exploring, and
            messing up his older brothers and sisters things! hee, hee. I got it
            cause i wished one day for him to walk, and hold on to objects.
            Don't get me wrong, there is times too at night i cry as i watch him
            sleep. i worry what will happen when i can't care for him. but never
            give up.. Miracles do happen.
            Jessica.

            --- In familiesofangelmansyndrome@yahoogroups.com, sara good
            <iamdonna42701@y...> wrote:
            >
            > Hi, hun! You are so brave on sharing how it really does feel.
            And your feelings are completely normal. I have felt the same way.
            And still do deep down. I am forced to put a smile on my face day
            to day because my son Joshua is progressing. He can walk in a
            walker...not alone. And he utters ma-ma and bubba. I think I speak
            the truth when I say it is so hard for all of us Angel mothers and
            fathers even if our child is fortunate enough to be walking or
            talking. And we always don't talk about how hard it is. In fact I
            have been so depressed about exactly what you conveyed in your
            message. I have no one to talk to about how bad I feel. How
            cheated I feel that my son is. How frustrating each day is with him
            playing in the toilet, not being able to tell me he is hungry,
            tired, or hurting. The trips to theraphy with all of his
            equipment. The stares in restaraunts as he chews on his sock or
            crams food in his mouth and lets it fall back out. The wonder of
            when he will walk on
            > his own. Or if he will speak? The fear of when he gets older
            and the more stares I will get and questions. And sometimes I even
            feel like my life is not mine. I feel like a prisoner to my home
            taking care of him. I love him though and although I speak the
            truth when I say I feel like a prisoner I also feel blessed that I
            am able to care for him. What about kindergarten for him. Life is
            not normal. And that is difficult to accept. When I recieved the
            diagnosis on Josh I was relieved and scared. I thought he had some
            rare disorder that would take his life at a young age. But, to hear
            he had Angelmans and would hold a normal life expectancy-well, this
            relieved me. And I was forced to put on a big smile because
            although everyone around me supported me they did not understand. I
            smiled and never really cried because everyone said I had so much to
            be thankful for. That he looked fine. Yeah. I heard that. And
            that it wasn't the end of the world. But, when I was alone I
            > felt like it was the end of our world. My chest felt heavy
            constantly and I bawled like a baby when I was alone because I was
            so sad. I even grew furious with God because I did not understand
            why he does this to children. And why he chose me.
            >
            > But, it helps to get these feelings out...because they are
            natural. And it is hard for others to understand who don't really
            know what you are going through. But, I do. And hun it takes a
            while to absorb it and accept it. You need to give yourself time.
            And it still hurts for me and I still get so sad and I feel so alone
            but, these thoughts help me:
            > God gave you that Angel because you are special and he handed
            that child to you because there are so many people in this world and
            you are one of the strongest. He picked "you" to take care of that
            child. And God does not give you any more than you can handle. I
            know what you mean by being so strong. People have told me "I don't
            see how you do it. I could never do it. You are strong." and I
            think "What choice do I have really" ?
            >
            > And another thing I keep in mind on a daily basis is that the
            sky is the limit. Never give your Angel limits. I have not with my
            son. I still talk to him although he may never speak. I know he
            understands. And I walk around with him and keep up the theraphy.
            The little things he does that would be so small and not a big to
            deal to others matter the most. For instance I cried because he
            learned to climb out of his play pin. That is the only age
            appropriate milestone he has reached so far.
            >
            > Monica, it is frustrating. It is difficult. And we need to be
            in this group for support just like this. I want to let you know
            that I am here and I really do understand the feelings of fear,
            jelousy, lonliness, hurt, anger. It is hard to wake up sometimes
            and look at all the good. But, each day if you find something to
            laugh about...just laugh at something that is so terrible then you
            will get by. And I know that you are strong and I know that you are
            a great mom! Please feel free to contact me if you wish. Also if
            you would like to send a private email I will give you my phone
            number and if you would like to talk I am here. I would love to
            have someone to talk to-a friend who really understood.
            >
            > monicacarpio_3 <MONICACARPIO_3@H...> wrote:
            > Good Morning to you all,
            >
            > I hope all is going well for you because for me it all seems
            to
            > be going down hill, ever since my daughter, Crystal, got diagnosed
            > it seems she is going back and back and back. As is, my hopes and
            > dreams seem to have been shatterd to pieces when they told me what
            > was wrong with her "Your daughter has angelmans" said the
            > genetisist doc. I was really in denail, wanting to think that this
            > was all a very bad dream, when my brain finally absorbed the
            gravity
            > of the matter, all I could think of was why me? What did I do?
            Who's
            > fault is it and why.
            > I've been a member of the group for about 2 maybe 3 months and to
            be
            > sincere I really envy you all for the strenth you guys have. It's
            > been about 9 months that my daughter got diagnosed and it's been
            so
            > darn hard, I read your post where you say that your little angels
            > are sitting-up, walking and even being able to say a couple of
            > words, and my heart just fills with rage to think that my daughter
            > does'nt do nothing but lay there with the happiest smile on her
            > sweet face. Why?
            > At this point all I feel I have is questions and no answers.
            Please
            > be so kind as to help me explain this situation. I know there is a
            > lot of poeple that love my daughter and there are a lot of poeple
            > that are praying for her but sometimes I jsut feel like god has
            > negclected us, esspecially her. I have all these fears,and don't
            > know what to think, What will be of my darling little angel the
            day
            > am gone? Who will have the love,time, and patience to take care of
            > her?
            >
            >
            > PLEASE HELP!
            > SAD,LONELY, AND CONFUSSED MOTHER IN CALIFORNIA.
            >
            >
            >
            >
            >
            >
            >
            >
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            >
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          • holly kopp
            Dear Crystal s Mom, You are perfectly normal. The tears, the anger, the rage, the pain, the loss of a normal childhood for your girl, no way of knowing what
            Message 5 of 13 , Dec 23, 2005
            • 0 Attachment
              Dear Crystal's Mom,

              You are perfectly normal. The tears, the anger, the rage, the pain, the loss of a "normal" childhood for your girl, no way of knowing what to expect, having to learn so much technical stuff and going for so many tests and not knowing what the future holds and the "what-if's" that make your mind spin. You just found out and it is hard. We all try to be positive an put our best stuff out there so the pain can be lessened but at the end of the day we sure didn't sign up for this. But, you know what? I promise after you have cried for as long as you need to and have been angry at some,stupid, ignorant, insensitive person who makes some wise remark about what YOU need to do it will still NOT be over but it will be less often and less intense.

              The truth is I had to wait almost three years for my son to walk. I wanted it way sooner and I realize NOW how lucky I am. But my kid hasn't said one word. Other mothers hear "Mama" but I DO envy them. I pray for the day I will be the mother whose kid can say a word or use the toilet or communicate with the PECS or sign language. I know about patience but I want so many of these things NOW!

              I am truly happy for them at the same time because those kids offer a chance that my kid just may one day do that.

              Monica, we are some very special parents but sooner or later we all need some support. There is something about having another contact parent who really knows and really cares. You sound overwhelmed right now. Do you have a pastor, a caring friend, spouse, someone you can cry and spill your guts to without being judged? Sometimes just saying it out loud makes it easier to bear. The sleepless nights and exhausting days take their toll and many of us have other children who deserve our best as well. Take time for you. Make time for you. If it means trusting and getting respite care once a week or month for a few hours so you can have a date or get you nails or hair done, then go for it. Also, a parent support group may be available in your community. These things will help you keep your sanity.

              It is hard and it is sad but I promise it gets better. All the therapies and doctors and work will pay off. I've noticed the shift in the two years since my son was diagnosed. He is now 4. I'm a totally different person now, a better person, and a tired person who has shelved some of her old hopes and dreams and come up with a new list that
              I can share with my angel.


              Once a year, I have asked for a 48 hour retreat. I check into a hotel and I am totally alone. I go hiking, knitting, reading, and praying and anything else I couldn't normally do and when I return I am trully happy to be back.

              I hope you are able to find a daily retreat and daily peace. Reading the bible has given me peace. I still cry when I read the passage where the mute will speak. I get choked up every single time and I pray to be the best mother I can be and to be kind to any other mothers and supportive. Hopefully, you are NOT cutting yourself out of outing to the McDonald's, park, church, pool, bowling alley, etc. Keep out in a regular life.

              You will be finding out who your real friends are and you will make more good ones.

              Take care,

              Holly

              monicacarpio_3 <MONICACARPIO_3@...> wrote:
              Good Morning to you all,

              I hope all is going well for you because for me it all seems to
              be going down hill, ever since my daughter, Crystal, got diagnosed
              it seems she is going back and back and back. As is, my hopes and
              dreams seem to have been shatterd to pieces when they told me what
              was wrong with her "Your daughter has angelmans" said the
              genetisist doc. I was really in denail, wanting to think that this
              was all a very bad dream, when my brain finally absorbed the gravity
              of the matter, all I could think of was why me? What did I do? Who's
              fault is it and why.
              I've been a member of the group for about 2 maybe 3 months and to be
              sincere I really envy you all for the strenth you guys have. It's
              been about 9 months that my daughter got diagnosed and it's been so
              darn hard, I read your post where you say that your little angels
              are sitting-up, walking and even being able to say a couple of
              words, and my heart just fills with rage to think that my daughter
              does'nt do nothing but lay there with the happiest smile on her
              sweet face. Why?
              At this point all I feel I have is questions and no answers. Please
              be so kind as to help me explain this situation. I know there is a
              lot of poeple that love my daughter and there are a lot of poeple
              that are praying for her but sometimes I jsut feel like god has
              negclected us, esspecially her. I have all these fears,and don't
              know what to think, What will be of my darling little angel the day
              am gone? Who will have the love,time, and patience to take care of
              her?


              PLEASE HELP!
              SAD,LONELY, AND CONFUSSED MOTHER IN CALIFORNIA.








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