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Re: [Families of Angelman Syndrome] Crystal

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  • bobbie toole
    Do you know of any support groups in your area? Check with the local school, also the hospitals might be able to guide you in the right direction to get some
    Message 1 of 13 , Dec 15, 2005
      Do you know of any support groups in your area? Check with the local school, also the hospitals might be able to guide you in the right direction to get some help. Do you have any friends that might be able to help you to care for Crystal or at least watch her for awhile so you can get out with your other kids. You have to be strong to have stuck in there this long-I am proud of you. Does your husband help any when he is there-or has he turned to work being the only way he can handle having a special child like Crystal? Do you by chance have a double stroller that you could use for the 3yr old and Crystal? We have one to get the boys in and out of Dr. appts and shopping, it really has come in handy. Much easier when you are by yourself than trying to carry them both.

      My son grew up alot when he decided to take full custody of his boys. I am very proud of him and have told him many times. I really don't know how he does it everyday. He works Monday-Friday and every other Saturday-he gets the boys up dressed and to the babysitter by 6:30am so he can drive to work and be there before 7:00am. Works all day comes home gets the boys-makes sure they are fed, bathed and takes time to play with them before it is bedtime. That is when the boys decide to go to sleep, sometimes they get in that mood to stay up all night, so he has to also to make sure they don't get hurt or anything. I keep the boys every once in awhile during the week to give him a break-but I'm not as young as I used to be and lack of sleep catches up to me very fast. I am hoping that some day he will meet a nice lady that loves him and the boys. He has meet a few but nothing steady-the boys come first to him as they should.

      You are a good Mother to all your kids, it is hard to be there by yourself and try to take care of everything. Try letting your 5 year old help more with the care of Crystal-I have 5yr old twin grand daughters that help alot with the boys. If nothing more than to sit and play beside them so thay fill included in family activities. I know it is easier said than done sometimes but just a suggestion. You have a very Mery Christmas!

      Bobbie, grandma to Kye and Jase-both angels

      monica carpio <MONICACARPIO_3@...> wrote:


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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 2 of 13 , Dec 15, 2005
        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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        >---------------------------------
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        >
        > 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.
        >
        >
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        >
        >
        >
        >
        >
        >
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        >[Non-text portions of this message have been removed]
        >

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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 3 of 13 , Dec 16, 2005
          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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          To unsubscribe from this group, send an email to:
          familiesofangelmansyndrome-unsubscribe@yahoogroups.com

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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 4 of 13 , Dec 16, 2005
            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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            [Non-text portions of this message have been removed]
          • 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 5 of 13 , Dec 17, 2005
              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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              >
              > 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.
              >
              >
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              >
              >
              >
              >
              >
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              > [Non-text portions of this message have been removed]
              >
            • 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 6 of 13 , Dec 23, 2005
                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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