My delight at L coming home for the weekend continues all the way through Friday. I describe it as almost a normal weekend. My daughter will go to sleep in her own bed, I can kiss her goodnight in her bedroom as she settles down to sleep, not at the doorstep of a red brick building as a nurse waits to let us our through the locked door. We can watch TV or sit and talk on Saturday evening, without watching the clock, knowing that she needs to go back to a place which I accidentally refer to as home when talking to her. But we are a long, long way off ‘normal’.
L always has plans when she comes home. She wants to go out and do things and I can understand why, but she is still a severely underweight anorexic patient and needs to rest. We have to manage three meals and four snacks into the day too. I suggest that we make three bigger snacks, but I can tell this troubles her. She arrives in the morning and we go out to IKEA after her morning snack to get things for her room. We come home and are late for lunch, C has baked some potatoes, but L argues over what the fillings should be. And I have lost my confidence in what she should eat. The hospital refusal to tell me what should be in a meal means I have no ammunition and my time with her is so limited I am fearful of a row. We compromise as usual. But a voice in my head tells me nothing has changed, this is the same Ed-dominated L.
She wants to go to town in the afternoon to spend her birthday vouchers. I agree on the condition that we swap her afternoon snack for tea and cake. L agrees to this enthusiastically. K comes with us, and my mum who is here for the weekend. We go to a couple of shops and then I insist we stop to eat. We go to a cafe. The menu is full of delicious cakes, but L looks terrified. On the menu is a blueberry muffin, which is on her snack list. I suggest she orders it. She shakes her head and suggests a smoothie. I refuse, a smoothie is not enough calories. I know her afternoon snack should be 300 calories. She suggests a scoop of ice cream, but I tell her she must also have a glass of juice. She runs off to the toilet. K looks really alarmed and urges me to follow her. I do, and she is upset, but was not going to make herself sick. I tell her if she can’t face it, we will go straight home afterwards and have her normal snack. When we return to the table, my mum spends a while choosing the perfect cake – she has been really looking forward to this. I order tea and chocolate truffles. K orders a caramel latte but there are no cupcakes left. L orders nothing. My mum looks stricken and immediately cancels her cake order. K looks furious. The waiter leaves. L hugs her knees to her chest and sinks back in the bench seat of the booth. My mum and I try to chat but both of us want to cry. K looks livid, and actually I feel the same too. Later, in Ks room, she confirms that she is really angry that once again, something that should just be so simple is in fact, impossible. I feel that too, if L can eat a mound of bland, fat filled cauliflower cheese and complete every mouthful, why can she not add juice to an ice cream or have a muffin. I know it is the anorexia, but it also L’s refusal to fight the anorexia that both drains and infuriates me. I look at happy groups at other tables in the cafe, the couples, the groups of friends, the families, all chatting and laughing and tucking in to the delicious food. And then I see the four of us, beset with unhappiness and unease.
The evening is slightly better, but due to a delayed evening meal, we face a snack jam – two 300 calorie snacks should be eaten between 9pm and bedtime, after a large meal. I make a snack which is 520 calories – cinnamon hot milk, biscuits and some raisins. I bring it to her and sit while she eats it and she almost finishes. We are both exhausted. This morning, there is meltdown because we have the wrong spread for toast. It is a spreadable butter, with exactly the same calories as Flora, but unless we have Flora, L cannot eat it. My mum races to the shop to get Flora.
The clinic advice is to keep mealtimes as normal as possible – advice which seems astonishingly naive. If it was normal, I would tell L it is the spread we have or nothing, but she would of course choose nothing. If this was a normal weekend, we would eat later than 6pm and not clock watch every meal. Tonight it is a Gala Recital for J. He has been preparing for this for months. L can go, which will delight him, but at some stage, in a classical music concert she will have to eat a snack and this will be really hard. She will not choose the ‘easy’ option of a chocolate bar or pack of Minstrels which could be surreptitiously consumed.
I am so angry with anorexia. And sometimes it is hard not to be angry with L too, not to yell at her that she needs to fight this, that she must try harder. All that anger is just internalised, packed deeply inside till it feels like misery and despair. If I was a better mother, she wouldn’t be ill, if I had better skills, she would eat what she is told to eat and not negotiate at every turn. This morning at the breakfast table, I was flicking through a holiday brochure and L and I were looking at a trek through Peru, her dream holiday. I told her if I win the Lottery we will go. But the sad truth is, the only dream trip I can imagine is being able to go to a cafe with my daughter and order tea and cake without the sky falling in. And that is as far away as a trek to Peru at the moment. Often we don’t value the mundane, the everyday business of life until it is taken away from us and then, it is all we long for and its loss is a constant bereavement. L is home this weekend, but it will be a long time before we really have her back, if ever.