Never give up…

You stare emotionless at the blur of movement in front of you, the air is soaked in high pitched noise. As a group of children sprint by, you see them excitedly scrambling over obstacles, squealing loudly with joy. ‘P’ lies…

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Institutionalised.

You see the new parents arrive in hospital, with their pristine clothes, clutching fashionable Costa coffee cups like this is just a temporary blip in their busy lives. In a way you envy them, they aren’t dishevelled, exhausted, scared of…

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Not today…

As you walk along the beach holding her hand, watching her collect shells, hearing her scream with joy as she splashes in the sea. You wonder if she’ll ever get the opportunity to get married, to have her own family,…

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Where are you?

The ‘friends’ that were there when the times were good quickly become a distant memory. No texts, no phone calls, no messages. Perhaps they are too busy posting on social media about their favourite album….People are afraid to ask how…

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Fear of the unknown…

Perhaps the hardest aspect of chronic illness is the unknown. The trajectory is so varied and so personal that it’s impossible to predict what will be experienced by each child. Living with such uncertainty breaks everyone eventually. We all learn…

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They lied, it doesn’t get easier.

You remember her being born like it was yesterday, the promises you whispered in her ear; that you’d always be there, that you’d always protect her, that’s she could be anything she wanted to be. And then all those dreams,…

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Playing God.

The decision hits you like a sledgehammer, it’s the toughest phone call you’ve ever had to make. You spent months looking for an alternative, double checking, trying to consult with the best, switching position numerous times based on new information.…

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You’re not alone.

Nothing prepares you for seeing your ‘baby’ go through things most grown ups couldn’t comprehend, let alone handle. They may be small but they remember being scared, the pain, the look in your face as you physically restrain them. It…

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Sometimes there is no happy ending.

The words ‘we’re so sorry but this isn’t going to work’ echo round the room as you try and comprehend the implications. Your hopes and dreams for your child are crushed in a sentence. You had so wanted them to…

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The call that hits you for six…

The message you have been expecting arrives, it is time. There is no more ‘waiting’. The situation is now severe. You thought you were mentally ready, you were prepared, you were wrong. You feel nauseous. Your world falls apart as…

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