When stable means turbulent

I haven't posted for a while. The last ten days have been so turbulent that every time I try, the day's events change everything. There are also some things that I feel I can't write about as they are active situations, with possible legal repercussions. 

Essentially Ollie remains stable. His weight is increasing, but he is still mute, and is broadly the same as he was two weeks ago. But that overview is over simplified: it doesn't begin to scratch the surface of the hour-by-hour dramas that anorexia brings. 

Anorexia loves games. It loves winning, but if it can't, it at least disrupts. Ollie's anorexia is so persecutory that he is punished for the tiniest scrap of progress. For example, Ollie had been attending the ward school every day. A week ago, Ollie's key nurse told us - within his earshot - that Ollie had at last picked up a pen and done some work in an English lesson. My husband and I tried to keep our delight low-key, but Ollie spotted it. His anorexia realised that school work would be seen as progress, so it had to take action. So Ollie stopped going to school. 

Sometimes we can see Ollie grappling with the anorexia voice. He is currently refusing all attempts at personal care. He has stopped changing his clothes or washing, and for the last week, even cleaning his teeth. Anorexia seems to be making a point. But Ollie has always been meticulous about his teeth, so he is stuck. My husband decided that his teeth needed to be brushed, so took Ollie to the bathroom to do it himself. Ollie had to make a huge show of not wanting to go; he dramatically dragged his feet, in an almost cartoonish show of reluctance. He could not bring himself to pick up his toothbrush - we could see the voice shouting at him - but he did not resist when his dad started brushing his teeth. He had to show the anorexia that he was unwilling, but Ollie actually wanted clean teeth and a fresh mouth. 

Every single mealtime is a conflict in Ollie's head. He cannot willingly walk to the dining room. He has to show that he objects. He cannot eat, or drink, or even touch the food. The anorexia is very clear about this. Yet he is surrounded by staff who spend hours every day, coaching him to take that leap, to do that thing that terrifies him the most. Ollie's life is a constant war. Anorexia is bullying him. 

Some days are terrible, and some days are merely awful. We have adjusted our baseline so when Ollie hits himself a little less than before, that counts as a success. A day when Ollie makes eye contact or allows us to hug him is a good day. Attending school is a win. Today I managed to cut his fingernails as well as cleaning his teeth, so I feel like I've really managed to mother my baby. A thing that used to just be a routine few minutes of care has made my day, and has meant that today I left the ward feeling positive. 

Ollie's anorexia doesn't allow him to enjoy himself in any way. Again, sometimes we can see the argument unfolding. Ollie might be watching a film, and might accidentally allow himself a moment of respite from the voice. He then has to atone for his lapse by hitting his head. Some days he is almost incapable of any moments of respite, and on others he can have several minutes of peace before having to punish himself again.  Today was a good day, as we watched Harry Potter with only occasional bouts of self-harm. 

We have moments of hope ("Ollie wrote his name in Occupational Therapy! He must be coming back to us") and moments of despair ("Ollie tried to bite a member of staff when being NG fed. He must be getting worse"). We lurch from high to low, never really settling on any one feeling. 

Nothing is normal. Things may look much the same at home, but everything feels wrong. There's a palpable absence in the house. The dog looks for Ollie every night. We try to function as a family of three, but we all feel it all of the time. That void, that empty seat in the car, that gap on the sofa.  We try to behave like we did before, to watch tv, do chores, chat, go running. We sometimes even have tiny moments of feeling ok. But that lump is always in my throat, the sorrow is everywhere. We are a man down. And we have no idea how long for.