Sweet Surrender by Mary Moody Read Free Book Online Page B

They construct standing frames which force the child to carry their own weight on their legs and feet while preventing them from toppling over.
    Isabella spent hours in her special standing frame and, while we questioned that she would ever walk, we knew that this daily exercise was strengthening her legs and helping them to grow. Then something devastating happened. Isabella started to have seizures. At first they were like little flutterings of the eye, but gradually they increased in intensity and frequency, and she was diagnosed with epilepsy. This was the beginning of a downward spiral. As the seizures became worse Isabella started to lose her hard-fought-for milestones. The length of time she could sit unaided diminished, and she started falling over. Once she had been quite capable of lowering herself gently to the groundwhen she felt too tired to keep sitting up, but now she just flopped down. She required a protective helmet to prevent her from damaging her skull as she fell.
    Isabella also suffers from a disorder called cyclic vomiting, which means that every few weeks her system rebels, and she simply can’t hold her food down for three or four days, or even longer. This results in extended stays in hospital because she can easily become dehydrated and unable to absorb the medication which protects her against seizures, thus putting her at risk of having a major ‘event’. Lynne stays all day and night with her during these hospital visits, in a small fold-down bed provided by the hospital. She gets up early in the morning and dashes back to their house in Blackheath to organise Caius while Ethan is getting ready for work. Caius goes to pre-school two days a week, but if he’s having an at-home day he goes back to the children’s ward with his mother and they keep Isabella company until his father has returned from work. Lynne drives him home, staying to have dinner because the hospital does not provide meals for parents, and then, no matter how tired she may be, she drives back to the hospital to spend the night with her daughter. Some nights Ethan sleeps at the hospital instead to give Lynne a break and some time alone with Caius. It’s an exhausting juggling act.
    Lynne keeps a daily diary in which she records everything that happens with Isabella. Her feeds, her medications, her bowel and bladder movements, her sleep and her general state of mind. Often little Isabella is happy and will appear engaged and interested, making eye contact and smiling broadly. At other times she is distressed by severe seizures or the nausea that is part of the cyclic vomiting. It’s heartbreaking.
    One aspect of this journey that has troubled me has been the attitudes of some – though certainly not all – members of the medical profession. Initially there seemed to be a lack of faith in Lynne and Ethan because they were young, inexperienced parents. During a couple of consultations when they reported their observations about Isabella,their version of events was doubted. Indeed there were suggestions that they had exaggerated the seriousness of Isabella’s condition, or embellished her reactions to certain feeding regimes or medications. This was outrageous, given that as her parents they were living and breathing her problems night and day while the ‘experts’ were only seeing her for ten or fifteen minutes at a time. It was in response to this that Lynne decided to keep her detailed diary.
    At one point, unconvinced that they were making accurate reports, one doctor wanted Isabella to be admitted to hospital for several weeks so she could be kept under observation. Lynne and Ethan took turns to stay with her and it didn’t take long for the nurses, and then finally the doctor, to agree that Isabella’s parents’ description of her behaviour and reactions was totally accurate.
    Lynne and Ethan decided to try for their second child when Isabella was about two and a half