Labels

I came to a realisation in the wee early hours this morning when Pudding was slumped next to me on the sofa snoring. (Yes, more vomiting. And yes, I’m fed up of the smell.)

I was thinking about the fact that he has possibly acquired some different labels without us even being aware of it.

When he was first given the ‘development delay’ label, I found it very difficult to take on board. It was confirmation of something that I had been worried about for a while – that he wasn’t progressing as well as his peers. It meant he was walking a different path to what I had always expected from my children. And although I had wanted to find out what was going on and had sought help, it was hard to hear those official words. But on the plus side the label also carried with it the hope that things might change – that he would catch up at some point.

Of course he was then given his primary diagnosis of Hunter Syndrome affecting the brain. We have no idea what his potential is under the clinical trial or if gene therapy ever comes available. But he is unlikely to ever catch up with other children his age. Any development he makes will be slow and achievements will continue to be hard-won.

Now he is five years old, health professionals may now be more likely to use the term cognitive impairment or learning disability. And the difference this time is I don’t mind at all. My true realisation as I’m writing this is that it just doesn’t matter. This time it’s the label that is catching up with my acceptance rather than the other way round.

He’s my Pudding, whatever the label.

 

Comments

  1. Linda Bradshaw

    HI Sally
    What a beautiful boy your child is and how wise of you to recognise labels don’t mean a thing when it comes to love. It does take some catching up (the labels) when our children are diagnosed with some horrendous unknown condition that determines growth patterns, physical or cognitive. It is hard when other children are making progress in terms of the ‘norm’ or what is expected. What I came to realise, far too late, down the long road we travelled with our daughter, was to recognise she was the best teacher I /we could ever have. I feel humbled when I think of my own slow journey of self-discovery and just how deep I had to dig – and need to keep digging – keep up – in terms of courage and unconditional love that seems to come naturally to such special young people with challenges way beyond the norm…

    1. HuntersMum

      I know I’ve still got a long way to go on acceptance! But I’m getting there. Thank you xxx

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