OK, just about
So, for the record, the last week has been ok. It hasn’t been terrible and it hasn’t been great. It’s been bearable. No huge leaps forward, no lurches backwards. Both physically and mentally, Ollie’s been stable. He was weighed and measured, and found to have grown a couple of centimetres, but his weight has stayed exactly in proportion with his height. He hasn’t had any flashbacks. His school attendance wasn’t great - three and a half days - but it wasn’t awful. Homework dramas didn’t spiral too far out of control. Things were bearable.
Our lives are carefully stage-managed, and it seems to keep things working. Every weekend I work out our meal plan for the week, adhering to both Ollie’s rules and to those given to us by his ward when he was an inpatient. No consecutive days of the same carb for our main meal; I alternate meals that have potatoes, rice, pasta, or noodles as the carb. Always two serving spoons of carbs, two of protein, and one of vegetables. Fat is used for cooking but not sneaked into sauces: the calorie value of each meal has to be roughly equivalent. The family eats together, and everyone eats the same food, just in different amounts. Our teenager eats significantly more than Ollie, which Ollie finds comforting.
The meal plan is stuck to the side of a kitchen cupboard. It is non-negotiable. Alongside it is the list of activity tokens: the extra food and drinks that Ollie needs to offset extra activity. It lists each day of the week and takes into account school PE & games, football and rugby practices and matches, and it is also non-negotiable. Below the list, Ollie’s meds are organised by day and time.
Ollie finds homework stressful but he insists on doing it, even though his SENCO has told him that he can be excused from it. His school is a grammar school and homework is plentiful. Ollie needs one-to-one help and in order to manage this, we have split the work between the family. During weekdays, I help Ollie with all subjects except maths. His brother has been financially rewarded for taking on the task of maths tutor. At weekends, my husband is on homework duty. Sometimes homework is fine. Sometimes it causes a meltdown, and Ollie becomes enraged by a small mistake. We’ve all learned to weather the storms. We allow anger but not bad language directed at people. It works, just about.
Ollie’s meal, snack and medication times are fixed, as is his bedtime. The rest of family life ticks on around him. It’s ok. It’s not great. But it’s not terrible. For the most part, there’s not much violence, or screaming, or fear. That’s a definite improvement on the spring of this year. But it’s not relaxed, or normal, and nothing is spontaneous. Perhaps we shouldn’t even think about normality yet. Earlier this year we thought Ollie would die, or at the very least spend the year in hospital, and we had zero hope of him going to school. So every day is a win, even if it feels like a slog.
This weekend Ollie played his first rugby match for the school’s A-team. They won convincingly, 35-0. He also played football and was part of an amazing 11-1 victory. These are fantastic achievements. Yet today, Monday morning, he was unable to go to school, as the anorexia voice howled in his head. He spent six hours curled up on the landing, silent and dark, before coming back to us filled with remorse for his behaviour. If I’d had to review these days, two would have been four stars, and today would have been a one star. Overall? It’s been ok. Just about.