I watch my child's brain misfire with false information for what seems like the 100th time today. Her brain is telling her she's 'massive, wide, blocky '...all of this is untrue ...debilitating and exhausting. For her and for me. She constantly seeks reassurance about her body size in comparison to other girls. It's incessant and relentless, almost impossible to live with. My eyes open to start another day and I don't want to get up and face it all again. I fantasize about getting in the car and never coming back.
My child is tortured, and she is struggling everyday with the brain she has inherited. She says I don't understand, and I don't appreciate what she's going through. Of course, I do. I'm going through my own horrors whilst also trying to manage hers. The physical pain in my heart is crippling me as we clumsily lurch through this thing together. My hopes and dreams for her feel shattered. They lie in tatters in my mind. I wonder if this will ever stop, if life will ever return to some sort of normal, it feels like we've been 'locked down' forever. Life has become so narrow and difficult to navigate. I make mistakes daily. I feel robbed of being the mother I intended to be. I’m her nurse, the police, her therapist, her dumping ground, her fixer .. just being her mum seems so distant now and I long for this. A relationship where we laugh and shop and have lunch together. A relationship free from anorexia.
I pray she will never know the trauma of listening to her child scream as she is held down and force fed ; or watching her tiny body become smaller and weaker everyday , laying beside her and wondering if her heart will stop. How could she understand what I feel ? How could she understand everything I felt when I held her in my arms for the first time. Love, protection and responsibility coursing through my veins. My promise to do my best by her, to nurture her, to feed her. To feel I've failed her in so many ways. To carry the burden of guilt with me like a concrete block anchored to my heart.
I desperately cling on to hope, watching for tiny chinks of light. Sometimes I see her, the way she used to be...her eyes lit up with life...her humour...her passion for right and wrong. And then she's gone. Consumed once more by her illness. I feel broken.
I can't change the hand that we've been dealt. Nowadays i don't ask 'why us' (this did come to mind in the early days); I don't blame myself and i don't dwell on the past or look too far to the future. I stay present in today and I show up. I look for the opportunities that this awful experience has given me such as prioritising what is important in my life. I hold on to hope, for myself but mostly for her. She deserves a peaceful, happy life that's filled with love and free of anorexia. She has enough struggles to contend with having Autism and Anorexia is an unwanted visitor. I will continue to fight for her recovery no matter how difficult some days are because I love her with all that I am.
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Download presentations from the 2022 PEACE Pathway Conference
What is interoception, and why is it important?
BEACON is a brain imaging project looking at how the brain processes emotion and cognition in individuals with anorexia nervosa. We are also interested in how autistic characteristics affect these brain processes and how these processes change over time.