Dating woman disabled child
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.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.The doctor stroked her hand, then in a gentle voice suggested we went to see a paediatrician. Then he broke the news all parents dread: ‘I am afraid it appears that Iona is profoundly brain-damaged.’It seemed life was over.These were the darkest of days, putting on a brave face and pretending all was fine while struggling with deep depression.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.
This is what makes daily life such a trial, that forced my wife to abandon work — the soul-destroying struggle against sclerotic public services, which costs so much time, saps so much energy and wastes so much money.
She is, of course, too big to throw around now, while carers need a hoist to help her into her wheelchair.
She still has the same lop-sided smile, although she looks young for her age and doctors estimate she is nine inches smaller than she would have been without disabilities.
We felt like zombies, deprived of sleep and tormented by fear of the future.
The screaming went on for hours; one holiday in Cornwall when nine months old, it seemed to last a week without stop. We were discovering life becomes harder, not easier, as a profoundly disabled child gets older and bigger.