This is the way we live now….

I realised today how totally exhausted I am and how completely consuming the process of caring for L is. In a way it’s like going back to those toddler years, where leaving on her own was unthinkable. If she is on her own, she slips back, she makes herself sick or doesn’t eat. Or both. Today, after the lecture yesterday, she made herself sick again.

I am trying hard not to blame myself. I know it isn’t my fault. Really, I do know that. But then four o clock comes and I’m at work, many miles away. I know she’ll be at home. I call her. The house is empty. Have you eaten something? I gently ask, try have a snack, just a healthy one. I feel dread, knowing she is alone. Surely she wouldn’t? Not after everything she heard yesterday. But yes, she did, and all the work in getting her to eat is undone in a moment. And just like her voice which tells her not to eat, which I tell her to ignore, I have a voice too. The voice that says its because I work. It’s because I have an unhealthy relationship with food. Because I haven’t made her happy enough, because I’ve not been there for her when she needed me. A voice which I know to be destructive and wrong, but one I need to conquer.

So we just get through each day, L and I. It’s like being in a two person play where others are there but not central. From the break of day, I prepare delicious food that makes my mouth water and cajole and coax my beloved daughter to eat. She gets upset and cross and I tell her that she can’t make me angry, that however badly she behaves, I will stay calm and I will always love her. We get through each day, a mouthful followed by a hug. Every crumb of food or drop of liquid that she takes in is carefully offered, invitingly presented to try and make it slip down, to make it easier. I make her tea as she does her homework at the kitchen table. I use a special teapot she loves and her favourite milk jug. I set it out on the table for her. She thanks me. Food and drink are now our language and the only refuge is the big squashy sofa where I hold her tight and tell her she is strong and can fight this illness, where she cries and tells me how scared she is. I go to sleep each night feeling as if we have only just survived. And when the alarm goes off, we start again. L and I, making our way through each day, waiting for when things get easier.

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