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Mild CP

MacPheeMacPhee Posts: 2Member Listener
Hi, my name is Yvonne, my son was born 30 wks premature, spent 6 wks in neonatal unit, he had interventracle hemorrhaging On both sides of his brain a grade 1 the other went grade 2 which resolved itself by the time he would have been 38wks.  He is now 2yrs, he has been seen by a peadiatrion who said that he is showing signs of mild cp & has sent for an mri scan, myself & my husband are so worried, I noticed that there are people here that are adults & have been living with mild cp. & not known &  I guess I just wanted to know how you've coped, or just to speak to someone else that's going through this, I know that diagnosis hasn't been confirmed yet but I'm just getting a bit down, & feel so alone, my husband and Mum have been fantastic but I know my husband is worried too, thank you for reading 

Replies

  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello Yvonne, @MacPhee, and welcome to the community. We're very glad to have you.
    You've been through, and are going through, an awful time. I know. The little girl in the photograph here is my daughter Jenny, but the first thing I should tell you about her is that there was nothing mild about Jenny's CP and she had many other, more serious conditions, one of which proved fatal. I would not want you for a moment to panic and think that CP had anything to do with her passing <3  It didn't.
    One of the hardest parts of the many hard parts there are to your experience and mine is the 'not knowing'. Feeling alone and feeling down are both a legitimate part of what you are experiencing. I am perfectly happy to walk down this road with you if it would be of any help.
    During my daughter's life I met and got to know a good many children with CP and their parents, and they've all been admirable people. In most cases the CP would not have been classified as 'mild' but either 'moderate' or 'severe', and many of those children have gone on to attend mainstream school and to succeed and be happy in their lives.
    Please, by all means, talk to me if I may be able to help, and check out the links on the broad purple band lower down the page. I'm pasting one, from the Talk about Cerebral palsy forum here so that you can have a look at it: https://community.scope.org.uk/categories/physical-impairments-and-cerebral-palsy
    You are very much among friends here. Talk to us, let us learn how we can best help and support you.
    Warmest, warmest best wishes to you,
    Richard
  • MacPheeMacPhee Posts: 2Member Listener
    Hi Richard, thank you for your reply, firstly I am so sorry to hear what you have been through & going through with the loss of your child I could never begin to imagine how you must feel, it puts things into perspective for me, thankyou it's probably what I needed to realise that it isn't all that bad, I guess I just needed someone else to tell me, thankyou
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hi Yvonne, @MacPhee
    and thank you for your reply. If there's one thing I've learned, it is that there is no sort of 'competition' when it comes to our children. Because this is your child we are talking you will feel as much hurt, anxiety and distress as anyone can.
    What you are going through is likely to feel just as desperate to you as anything I went through, and that's perfectly reasonable.
    The first thing you have to do is to love yourself, go easy on yourself, and take your time. And if you're hurting, I could not be more willing to listen and offer what support I can.
    I should perhaps have said that Jenny died a quarter of a century ago, so it is something I have learned to live with  :) What matters to me now is that others might benefit from elements of my experience.
    Warmest best wishes to you, to your mum and your husband, and,of course, to your no doubt beautiful son.
    Richard
  • han156han156 Posts: 8Member Listener
    Hi Yvonne 
    I am 27 and I was diagnosed with mild CP at 18 months. I’m not really sure where to start telling you about my experiences, but I will happily answer any questions you have and I would like you to know that overall, living with mild CP has not held me back
  • Richard_ScopeRichard_Scope Posts: 1,662Administrator Scope community team
    @MacPhee ;
    Thanks for reaching out and joining our community. I am sorry to read that you have had a tough time. There are lots of community users that live with mild CP and will have lots of good advice. I have CP but it is not mild so my experience may be different, although I am always availbale to assist you in anyway I can!
    Scope
    Specialist Information Officer - Cerebral Palsy
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