New realities

Doors are locked with the keys hidden. Likewise the windows. The bathroom locks have been removed; access to the kitchen, with its myriad dangers and anxieties, is strictly controlled. Dog walks are timed and speed-limited. Websites are checked. Food labels are hidden; conversations are censored. Phone calls are taken, on mobiles, outside, or upstairs, or somewhere out of earshot. 

These are the realities of life with our desperately ill child. We need to keep him safe from himself. One of us sleeps on his floor every night; we tell him it's because we want to keep him company. Really, it's to stop him from leaving his room in the night. These are all precautions that we feel are crucial. 

Then there are the rules. We are under instruction from the best children's hospital in the country, with advice from childhood anorexia experts. There is a strict number of calories that must be consumed daily. There is an unbending timetable for meals. There is medication; there are limits to exercise. There's a reassuring contingency plan with the amazing local paediatric ward. There's the local crisis team, mostly useless but better than nothing. 

And there are the two of us. On the steepest learning curve of our lives, we have become Ollie's full-time nurses. We are exhausted but we have no options: Ollie refuses to eat with anyone else. And currently he needs both of us for each meal. Yesterday, we both hit a wall, and we have asked for help. The waiting time for an inpatient bed is, we heard today, eight weeks. 

We are keeping our son alive. We can't stop. But I don't know how we can keep going. 


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