Dating woman disabled child

10-Feb-2018 19:33

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But she will not toast her big day in champagne, nor dance the night away with friends.She will not tear open her presents, blow out candles on her cake nor laugh as we recall happy childhood memories.Yet she looked so sweet, so defenceless, so like any other infant, when out in her buggy for a cliff-top walk. We wanted a name, a condition to cling to and help us understand. The real problems, as for so many of the other 100,000 families in our situation, lay in trying to clear a path through the undergrowth of a welfare state that fails too many of the most vulnerable people First and foremost was the fight to keep her alive and in best possible health.Again and again, doctors asked the same questions about her birth and our backgrounds. We sorted her diet ourselves, rejecting pressure from doctors to give her a gastrostomy (for an artificial feeding tube) since food is one of her pleasures. Once, slowly poisoned by high dosages of the drugs keeping her alive, she lay skeletally thin on her bed with her grey face glistening with cold sweat as we prepared to say goodbye. She is a warm and affectionate girl, often smiling when she hears us, perhaps stretching out her hand or nestling her head against our shoulder.Without her, our own lives would have been so much easier but in truth, so much poorer.

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As the consultation at the clinic ended, her eyes rolled, her limbs went rigid and spasms racked her tiny body. The paediatrician examined Iona before asking a battery of questions about her and our own medical histories.We ensure she has as full a life as possible, doing things other teenagers do.She goes wheelchair dancing and has been to a club, to concerts, the theatre, even abseiling in Cornwall and to a music festival.Then there are all the battles with bureaucrats and town hall turf wars.

Meetings — so many mind-numbing meetings, such avalanches of emails — end with promises of action, but are followed by walls of silence.We had been worried Iona’s sight was not functioning, while she had also been screaming endlessly.

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