How has having exceptional children changed/affected your life?
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  1. #1
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    Jul 2002
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    Question How has having exceptional children changed/affected your life?

    Has it been for the better, worse or a balance of in between.

    I have to say for me, its a balance of in between. For the better in that my kids have taught me so much, strength, determination, the joy of laughter and just being who they are has taught me about life in their eyes. They've taught me that no matter what, there is always another day, always a "just around the corner" time of success. They've taught me that its okay to fail when our bodies can't do what it is suppose to do, but that its only okay to fail, if we don't give up trying for that success.

    The worse would have to be the fact that at times I do get angry that I can't do a few of the things I want to do, ie. going out to a movie with dh, going to a church service without interuption.

    What about you? How have your children changed you?

  2. #2

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    Dec 2002
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    I would have to say mainly for the worse

    Since DD has had her strokes we have lost so much. It was very hard in the beginning to accept anyway and I spent about 6 months solid living at the hospital and another 2 years being there for different appointments everyday. All through another pregnancy and small baby time as well.

    On the plus side, the doctors didn't think she would live and then told me she may never talk again and almost definately would never walk - she does both. She is very strong and willfull. I told her she would never walk (as I believe in being honest with them, without exception.) She looked straight at me and said YES I WILL!

    Still now her life was school (she loved it) reading and writing mostly, she can't do either now and hasn't attended school in 3 years. She has major brain damage, which to look at her you would NEVER guess! She can't use her right arm & hand and walks with a splint but otherwise she 'looks' like a normal 15 year old girl.

    However she is physically and verbally very abusive, where she used to be a caring and loving child. This is VERY hard.

    She also has major learning difficulties which has caused her just to give up.

    She has something the Dr's call 'sexual inhibition' which basically means she would think nothing at all of walking down the street naked, stripping off infront of anybody, and having sex with everyone! This is of course very dangerous and very worrying and in an attempt to be 'normal' (like all other teenagers) she has started to do all of these things along with smoking, drinking, taking drugs etc. All of this would be awful in any child but obviously is seriously dangerous to her. Even when you explain that if she has another stroke it will more than likely kill her and she can't afford to take uneccassary risks - she has been 'there' before and has an attitude life could be very short so I'll just get it all in now, just in case!!

    I don't know what to do with her anymore and the 'proffessionals' don't have a clue either. I feel like we have all given up and she is only in the hands of God now.

    I lost the child I knew forever, just like she had died and been replaced with a completely different person and when I think about it I can only think that it definately changed us all for the worst.

    I have to trust that there is a higher plan that I can't see right now, because I honestly think sometimes that she would have been better off if she had died at the beginning and not gone through all the medical, physical, and emotional pain that she has suffered and be left the way she is now. And I'm her MOTHER!!!! That is a dreadful thing to think and believe too. Don't get me wrong I LOVE my daughter but this has been a nightmare that we never seem to wake from and sometimes it would be nice to see a 'light'

    Oh Goodness - Sorry I raved on for so long!!!!!

  3. #3

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    My heart goes out to both of you. I know how difficult it is to watch a once "normal" child go through these changes, maybe not in the same way but in the same manner. when Ryan was dianosed with cancer, he so wanted to live! Then when he found out he couldn't beat the chemo, he started to fade away, became very selfish, hateful and arrogant. which at the time was very much acceptable to me, I mean he didn't have long to live. Now reflecting back, I wonder if I could have done anything different.
    You gals are wonderful, beautiful people I admire your strength.

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  5. #4
    Founder Sara Noel's Avatar
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    For me it has given me a deeper sense of love. I did go through a very brief time of guilt and self pity, but once I got past that, I felt even more blessed.
    Most people take for granted so many things when it comes to their children. Basic things like eating, bathing, talking, getting dressed, playing, reading, etc.
    It is a true blessing to love so deeply and in a way that not everyone is given a chance to. His victories give me more joy than I could ever feel towards anything else.
    He is what makes me special.

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