Parents, carers and disabled parents
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The person I am becoming.

b8sb8s Member Posts: 33
Hi,
it will be three years on New years eve since it was first suggested that my little girl had developmental delay. four months later she was diagnosed with CP. I guess because this anniversary is looming, I have been reflecting on our journey so far.
When we started out i trusted everyone, was optimistic, and positive that all professionals involved would have Alice's and our family's best interests at heart. How naive I was, although Alice has some very good health professionals, we have learnt to question everything, to be pushy when we feel they are being slack, and complain when things are wrong.
I really don't like the person I am becoming. I feel I am synical, negative, and always ready for a battle.
I know this is going to be life now and with budget cuts, equipment and therapies will be even harder to get, but isn't it wrong that parents are forced to become hard and business like at a time when they should be shown understanding and caring.
I guess I'm really looking for reassurance I am not the only one that doesn't recognise themself sometimes.
charlotte

Replies

  • hilsflynnhilsflynn Member Posts: 24
    Hi Charlotte,

    I guess I never thought of it like 'the person I'm becoming' and I doubt very much that you are either. I know I see my assertive and stroppy side a lot more now. It was always there, but it tends to come out when I'm protecting others rather than myself, and hence with my beautiful boy to protect it rears it's head that much more often.

    My feelings are that I dislike that I'm made to feel like that (but it tends to pass quickly!) and I know when I'm building up to it, after a run of several things not going smoothly say, but I feel sorry for the poor soul who is next on the list to tackle...not myself.

    I still am positive and optimistic because I know the individual health professionals and therapists are all on our side and want the best, and I have built up excellent relationships with them all (I think). But you are right, things are going to get harder and certainly here we're already seeing the bite in terms of struggling to talk to individuals (because their diaries are that much more full) and I'm glad that most of the equipment we will need in the foreseeable future is sorted.

    Don't beat yourself up...you are protecting your daughter and fighting her corner and as long as you are polite and understanding of their constraints I'm sure the professionals will understand that. If the person at the receiving end works with disabled children and their families daily and don't understand that, well in my opinion I wouldn't concern myself with their feelings either.

    Best of luck
    Hilary
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