Sweet Surrender by Mary Moody Read Free Book Online Page A

in previous generations would certainly have died – and to the devotion of her parents.
    Having Isabella in our family has quite radically changed the way I feel about fundamental life and death issues. If you had asked me a decade ago what I thought about a child who couldn’t walk, talk or sit upright for more than a couple of moments, who couldn’t chew or swallow food, and who had hearing and vision problems and therefore wasn’t capable of functioning in any way like a normal, healthy child,I would have said that particular child would be better off dead. I certainly don’t feel that way now.
    Isabella’s parents are fiercely independent and have coped with the care of their disabled child without asking for or expecting much help, even from their immediate families. From the moment it became obvious, around the age of about six months, that Isabella’s problems were much more complex than just a failure to thrive, they have assumed the mantle of responsibility and done so in an amazingly positive, good-natured and accepting manner. They have never complained about their lot even though since her birth seven years ago they have not enjoyed a peaceful night’s sleep, and have the constant worry of a child whose future appears very uncertain. I have enormous admiration for them both.
    Medically, Isabella’s condition falls into the category of ‘global developmental delays’. This is just another way of saying she has a whole cluster of different problems, some connected and some that stand alone. It took more than a year before the various government departments that support families with disabled children would offer any assistance because there had been no definitive diagnosis. In spite of testing for a wide range of disorders and syndromes, there simply wasn’t a convenient label they could put on Isabella, and therefore she fell through the cracks in terms of qualifying for support.
    Eventually it was acknowledged that she wasn’t simply suffering from delayed development and that there were many more serious symptoms that would require ongoing treatment for the rest of her life. She needed the care of so many different specialists – starting with paediatricians and gastroenterologists, and including dieticians, neurologists, speech pathologists, physiotherapists and occupational therapists. The list goes on.
    Isabella cannot ingest food normally, so finding the best sustenance for her has been a nightmare. She is fed through a tube, and her digestive system can’t tolerate rich formulas, so there is a constant process offinetuning going on in the hope that she will continue growing despite the fact that the liquid pumped into her tummy is better suited to nourishing a newborn than a seven-year-old. She has grown, certainly, but she is much, much smaller than she should be for her age. Her legs, in particular, are very short and finding clothes that fit her is always a problem.
    During the period leading up to the age of four Isabella made steady, if extremely slow, progress. She could sit for more than an hour at a time, was interested in everything around her, and had started rolling around and getting up onto all fours. We all felt certain that she was on the verge of learning to crawl. She was having intensive physiotherapy, including spending increasingly lengthy periods in a standing frame that had been designed and built specifically for her size and her needs. There is a lovely aspect to all this and it’s about volunteering. Groups of retired men – men who often have been carpenters or builders during their careers – give their time to build customised equipment for disabled children. They create special seats with trays so that the children can be well supported while playing with toys that are designed to stimulate their senses. They adapt beds and cots and wheelchairs to make them more suitable for the needs of a particular child.