Parents, carers and disabled parents
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mum of 2 - one with spastic CP

MrsMMrsM Member Posts: 3
Hello All

I am new to this and have been advised that I need to talk to parents that are in a similar situation to myself.

My daughter is now nearly 7, she was born 15 weeks early...yep not a typo that is 15 weeks...she is an amazing lil fighter but as a result of this she has spastic CP and epilepsy, and if I am being completely honest I think she may have other learning worries.

As all parents you just want to protect your children and keep them safe, but as a parent to a disabled child you are sometimes at a loss to help them and there's nothing you can do to help.

My daughter has just had surgery and has been in a wheelchair and I have just got her a frame with wheels to help her to be up and about, I am proud of her and how far she has come in her short 6 years but there are frustrating and hard times and some times all I want to do is run away and hide and cry for a while.
So I guess all I want to know is am I normal in feeling like this??
How can I do more and help her be the best she can without getting frustrated when she doesn't want to even try things for me??

Thanks for listening...Hope someone can help or just talk to me.

MrsMx

Replies

  • Sam_ToucanSam_Toucan Member Posts: 24 Connected
    I don't think you're the only one who wants to run away and cry! I know I feel that way sometimes I bet everyone else on here does too from time to time.

    Sounds like your daughter is doing well and making progress which is good - like everyone she probably has good and bad days. For example I am personally supposed to be exercising 3 to 4 times per week, but there are days when I just can't be bothered and crash out with beer and pizza instead :-)
  • MrsMMrsM Member Posts: 3
    Hey Sam

    Pizza and beers over exercise is soo much more appealing... :) but if we don't excercise we will only become less active.
    My husband is a gym fanatic and has on occassions if got me to go...not gone quite to plan as he hoped I think.

    My daughter is now up with the frame which is excellent but not without challenges...she doesn't quite understand that excercising her new found ankle is going to open big opportunities for her...and I feel awful to have to make her do them but I do know that if I don't the surgery would not have been worth it...and if I'm honest I don't think I am steong enough to put her through it again.

    I have started to open up more to people now and talking about my worries has started to help...I was talking to a family friend the other day and she says maybe I am trying to cope with feeling guilty for making a decision for my daughter and not being sure if it is the right one.
    I think that is something I will have to deal with as time wears on for her.

    Thanks for replying to me...has helped to know that someone is listening to me babble on.

    MrsM x
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