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Hi, my name is Bluebell2015!

Bluebell2015Bluebell2015 Posts: 3Member Listener
Hi! I'm a Mum to a lovely little girl who had HIE2 at birth. We are currently on the road to a cerebal palsy diagnosis as she has low trunk tone and high in her ankles. All in all, she's amazing and lights up my life!

Replies

  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Bluebell2015 and welcome to the community. It is good to have you with us.
    I am sure your little girl is glorious. I have known many children with CP and they have always seemed very beautiful to me.
    So how can we help you? You have found a safe place here and are among friends, so please don't be shy of telling us about yourself or of asking any questions. The better we get to know each other, the easier we may find ways to be of use to you.
    Warmest best wishes to you,
    Richard
  • Bluebell2015Bluebell2015 Posts: 3Member Listener
    Thank you for replying. I hope you're well.
    Although I have begun to find happiness in my new normal, I still don't know anyone in a similar position to me so I would love to talk to others. The diagnosis will not come as a shock although it hasn't been given on paper yet as such but as she suffered oxygen starvation, has muscle tone issues etc it is definitely coming. I guess I'm just looking for others to talk to and don't mind any questions, especially if I can help others have a bit of support too:)
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi again, @Bluebell2015
    and it is good to hear from you.
    If you haven't already done so, you might like to have a look at the Cerebral Palsy link under Talk about specific conditions, I'm putting it in here https://community.scope.org.uk/categories/physical-impairments-and-cerebral-palsy  You could also have a look at the Parents and carers forum here: https://community.scope.org.uk/categories/carers-of-disabled-children-and-adults  It is not unlikely that Admin will move your introductory post into one of those forums very soon, so that you will be 'nearer' to those who have much in common with you.
    One of my late daughter's several conditions was CP (but it was NOT the fatal one :smile:) and through her we met many families - in hospital or at her nursery - where the children also had cerebral palsy. What I remember most about those children is their vivid smiles and brilliant eyes.
    It is always very difficult at the beginning because, of course, we know so little about how our children are going to develop, and it is easy to become afraid. It is a tough time.
    I am sure you will find those others on here who have shared similar experiences, and I will, of course, be listening out. I am here if there is anything I can do.
    Warmest best wishes to you,
    Richard
  • Bluebell2015Bluebell2015 Posts: 3Member Listener
    Thank you so much for your reply and advice. I'm sorry to hear about your Daughter im sure she has filled your life with lots of joy. Take care, Maria 
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi @Bluebell2015, and thank you for your reply and your thoughts. My daughter's death is not something I have a problem talking about - it was, after all, a very, very long time ago now, and the truth is that she taught me a very great deal that is proving to be useful here.
    I have known and loved many children with CP and their parents and carers. Knowing them has always been a privilege, as knowing you is now.
    Warmest best wishes,
    Richard
  • Richard_ScopeRichard_Scope Posts: 1,003Member, Administrator Scope community team
    Hi @Bluebell2015 ;
    Welcome to our community it is great to have you here! Thanks @JennysDad for the great advice. I am the Specialist Information Officer for CP at Scope to please feel free to contact me with any questions, I have CP myself. I look forward to talking with you.
    Scope
    Specialist Information Officer - Cerebral Palsy
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