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Re: [CEREBRAL PALSY CLUB] A poem I wrote for Hunter.

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  • staci
    Thanks Erin, I had tears in my eyes when I wrote it and it all just came out I didn t really plan it...I think everyone should try to write you feelings. It
    Message 1 of 38 , Jul 17, 2006
      Thanks Erin,
      I had tears in my eyes when I wrote it and it all just came out I didn't really plan it...I think everyone should try to write you feelings. It made me feel better about everything.
      Staci Mom to Hunter 3(SQCP) and Zoe 2

      Erin Palmer <kslasmom@...> wrote:

      Thanks for such a wonderful poem, it brought tears to my eyes. Life is a struggle for our liitle angels but they really do keep on smiling. Take care.

      Erin mom Of Katie 4, spastic diplegia

      staci <flygirl_82us@...> wrote:
      Hey everybody,
      I thought you might enjoy this poem I wrote for Hunter and really all kids with any challenge like CP.

      Might as well Smile
      They see the plastic and the straps around you ankles
      They look you over in all sorts of angles.
      But I only see you boy. And your beautiful smile.

      They wonder what happened and why you walk funny.
      They wonder why you struggle up the steps when they are all running.
      But you don’t ask for my hand. You hold the rails and smile.

      They wonder why God would let you be this way.
      They wonder if they could ask him what he would say.
      But you don’t worry about such things.

      They feel sorry that you don’t have a normal life.
      They wonder if you will ever have children and a wife.
      But I dream of what your kids will be like. Will they have your Smile?

      They don’t see that everyone lives are full of trials.
      We are all only here for a little while.
      And one day we will all have perfect wings.
      But for now we might as well smile.

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    • lbruneian
      ... several years I haven t written an update on Amanda s progress, here is her story. ... born. The doctors told me that Amanda had Cerebral Palsy. They said
      Message 38 of 38 , Mar 20 1:00 AM
        --- In cerebralpalsyclub@yahoogroups.com, felicia gallo
        <felicia_gallo@...> wrote:
        > Hi Group,
        > I am here to give you an update on my daughter Amanda it has been
        several years I haven't written an update on Amanda's progress, here
        is her story.
        > My journey began on June 19, 1998, when my daughter Amanda was
        born. The doctors told me that Amanda had Cerebral Palsy. They said
        that she was very severe and had very extensive brain damage. Her
        brain scan showed that she had virtually no cortex and the color SPECT
        scan showed a devastating loss of the cortex. It also appeared that a
        large segment of the brain was missing due to brain edema. Like any
        parent I was in shock. I did not know what to do or where to turn.
        > As the days and months passed by we noticed she was not doing
        anything that she should be doing developmentally for the age of 9
        months. Her head and spine arched back and always stayed on the left
        side with her head, and her eyes were always rolled up.
        > At the age of 9 months Amanda started doing Hyperbaric Oxygen. We
        noticed that her spascity was reduced, she was sleeping better, her
        nystagma was less and her vision improved. The next brain scan showed
        that there was more blood flow to her brain. We did Hyperbaric Oxygen
        for 1 year.
        > Amanda had turned 2 years old and she was better since the
        Hyperbaric Oxygen. She still had her head arched back but it was
        less. Her eyes would roll up less and her spasticity was less also.
        However, she was still not able to walk, talk, smile, or suck her
        bottle or look at us.
        > We heard about Embryonic Stem Cell Therapy and I was very excited.
        I gave it a lot of thought about whether I should take Amanda or not,
        and I decided I would give it a try since I had nothing to loose
        because Amanda was already brain damaged enough. I followed my
        instinct and my heart.
        > We started to do Stem Cell Therapy when Amanda was 2 years old.
        Today Amanda is 8 years old and here are the changes we saw in the
        last 6 years with doing Embryonic Stem Cells.
        > Amanda was not able to suck her bottle at the age of 2 but she now
        is able to suck her bottle and her sucking coordination came back.
        Her eyes are more alive, alert and expressive. She now turns her head
        and eyes to look at me when I call her but before there was no
        response. Her hands are now more opened up too. The best thing that
        I love now is she is able to give me a huge smile. For me that smile
        means one million words! She is a lot more active and pays attention
        to what is going on around her and she understands a lot more too.
        > Amanda is now learning how to crawl, which is so amazing! She is
        able to stand up by herself for a few seconds. She wants to achieve
        it so badly that she puts all her energy into trying. We have done
        EEG'S and it has shown that her readings are much better. She is able
        to express herself with a sad face and she babbles more. I noticed
        she understand a lot more now they are periods that she does not eat
        breakfast and when I tell her if you eat daddy will play with you,
        within 10 minutes she is done her breakfast. At night she will call
        me and let me know she wants to drink, and goes back to sleep after
        her drinking this is a big step for her to call me, she is
        understanding more and more. Her brain scan showed an increase in the
        size of the cortex too. And now the best for last she mumbles "MAMA"
        which is the best gift she could give me. We have gone for more stem
        cells and Amanda is improving a lot on her babbling more new sounds
        are coming out, she could go on
        > for hours now and babble this is new for us. My husband also
        noticed when we ignore her now she will just look and say out loud
        HEY, she also is learning how to sit on her own when doing therapy,
        the therapist holds only her hands and the rest Amanda tries to
        balance herself, I thank god everyday for giving her a chance to doing
        Embryonic Stem Cells it has changed my life amazing and full of
        happiness in my heart.
        > That explains why she is my Angel, sent from heaven.
        > If you would like to see Amanda's video of her trying to sit on
        her own with her therapist I will email.
        > If I can help anyone please let me know. thank you.
        > Felicia Gallo
        > ---------------------------------
        > All new Yahoo! Mail -
        > ---------------------------------
        > Get a sneak peak at messages with a handy reading pane.
        > [Non-text portions of this message have been removed]
        Hi Felicia
        This is Lucy here all the way from Malaysia. I was really touched to
        hear your story. I have a daughter too who was diagnosed as a CP at
        aged 1. She is now 5 yrs and is still not able to stand and walk yet.
        We have PT & OT sessions at the Hospital every week but I can't
        afford to go out every week because I am working(in a private firm)
        and it would be very inconvenient to go out every week. I was thinking
        of leaving my job but then again it would definitely cause financial
        strains at home if I stop working. My daughter Marvel can sit (wobbly
        though) without support for about 15 minutes.
        I agree with you Felicia that every mum's wish for their child is to
        be able to see the first steps they take, the first words they say,
        the first expression and response they give. We don't care how late
        they are going to say their first word, their first step, etc so long
        as we see improvements and results, right? Maybe for some, it a little
        achievement but to us it is a BIG achievement. You are lucky that you
        have therapy in your country such as Hyperbaric Oxygen and Embryonic
        Stem Cell. Over here in Malaysia we do not have all those. We depend
        soley on PT and OT. Even when we want to get sponsors to purchase
        'special' custom made equipments for our special children here from
        the Welfare Dept it take years for us to wait. And what more if we
        were to purchase advance equipments such as what you have in your
        country, it would definitely be TOO expensive for us. It is truly
        heartbreaking when we want to help the best for our 'special' child
        but just can't because of financial problem. Like yours my little
        Marvel is also an angel to me, I love her very much especially when
        seeing her smile everyday in spite of the 'cross' she's carrying. I
        only pray and hope for a miracle one day that she would be able to
        walk. By the way Felicia, how much did you pay for the Hyperbaric
        Oxygen and Embryonic Stem Cell Therapy you did for Amanda? And for the
        Embryonic Stem Cell Therapy, how is the process? Does she has to
        undergo surgery or whatsoever? Is this process painful? I would love
        to see the video of Amanda sitting. Pls. email to my address below :
        Thank you and Keep in Touch
        Lucy (Malaysia)
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