Looking normal ? — Scope | Disability forum
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Looking normal ?

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Aliceinwonderland
Aliceinwonderland Community member Posts: 2 Listener
edited August 2016 in Children, parents, and families
When I was 5 months pregnant with my girl Alice i found out she had spina bifida and Hydrocephas ( fluid on the brain ) and was told by professionals to abort her .. i didnt . When she was born she had 10 hour surgury to close her spine , she had a drain fitted to her brain then a vp shunt . She is 8 months old now and she is the little lady in my pic . She has no feeling from waist down and i help empty her bladder and bowls .. now whats getting to me is my family mainy older generation ...telling me how normal she looks and they regrett telling everyone i shuld abort her :( this hurt like really bad as i thought they were behind me 100% and what hurts is what if she looked different / what about when she uses her wheelchair will they think this again because she dosent fit into " the norm " ... to me she is perfect and will always be but knowing they talk different behind my back hurts :(
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  • Noah
    Noah Community member Posts: 425 Pioneering
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    It sounds like your family are trying to make themselves feel better after what clearly has been a very difficult time for you and them.

    Try not to worry about what 'might be' in the future, I'm sure with the right support, love, professional help, your daughter will continue to bring you a huge amount of joy to your life and to your family as you are able to see her continue to make progress.

    It sounds like she has already defied the odds, and proved the medics wrong, in her fight to survive.

    Regardless of how she looks, if she has to use a wheel chair or not - or any other special aids, If you keep challenging her and helping her reach the next goal, she will be a true inspiration to you and those around you.

    This will silence any critics, my advice to you, would be to keep focusing on doing your best to help her reach her full potential and I'm sure your family will be there to support you.

    I Wish you and Alice all the very best,

    Feel free to post any questions you may have on the Community forum, and we will do our best to help.

    Noah
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  • barbforshee
    barbforshee Community member Posts: 5 Listener
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    I'm in the belief that your family is ashamed of what they said and is trying to make it up by saying better things now. After this child has been around awhile and she gets her self planted into their hearts there is no way they will be saying bad things in the future wheelchair or not. You do for this child all you need to do and worry about her and only her. If they start saying mean things again you and Alice don't need them in you lives anyway. Negativity breeds negativity. Love breeds love. You and Alice just spread all you can around. 
    Barb.
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