ABSTRACT
The practical difficulties of Milo being at best, 2 hours, away from home were stressful. Holding Milo and understanding his bodily expressions of comfort or distress was important, especially at the start of the illness. Physically, Milo was lying on a sofa or deckchair, unable to walk or talk, and was being tube-fed. The illness started as an apparently harmless 'flu bug', but within days had him writhing with pain, and calling out. In passing, and almost by mistake, a junior doctor mumbled something about "pervasive refusal syndrome", a diagnosis that had not up until now been mentioned. One joy of Milo's illness was that his sense of humour remained almost wholly intact. Physically, Milo was lying on a sofa or deckchair, unable to walk or talk, and was being tube-fed. There were times in each day when it was possible to be alone with Milo. Whichever parent was around would sit beside Milo, and spend "special time" together.
