"I was painted with such a bleak future for my daughter when I was told she had severe brain damage at only 2 weeks old"

“I am writing after a tough night with my 9 year old daughter, after a heated conversation with a healthcare professional, after realising that, yet again, I need to rely heavily on my parents support with childcare to allow me to work. Why am I choosing to write about my life when it’s been a tough few days? I simply need to acknowledge the negative to appreciate the good of being an unpaid carer.

I was painted with such a bleak future for my daughter when I was told she had severe brain damage at only 2 weeks old. My world crumbled during that conversation. Over the years my strength and voice have grown as I watch my daughter grow and teach me about the important things in life.

Significantly, it is not her meltdowns, her lashing out at me or the sleepless nights I have faced with her that exasperate me or impact negatively on my mental health. It is the healthcare professionals who have me justify and plead for my daughter’s worth in the hope I get an understanding ear who will refer her to the places I know are best for her. It’s like a postcode lottery but my daughter’s life is not for playing with. Her rights should not be lost in a system of box ticking exercises or tokenistic gestures.

I do not wish to belittle the work of the NHS staff as my daughter has had some dedicated staff members work with her, who saw her as an individual and not a child with Quadriplegic Cerebral Palsy or Visual Impairment. They got to know her and work with her.

As an unpaid carer who is also a single parent I have realised the importance of not only my child having one good adult but also how important it is for me to also have one good adult. I worry about those who are not fortunate enough to have that person who just listens to you as you navigate through service land, it can be a lonely and isolating place. Connection is so important and in the 9 years since I have been living this life, I have saw those connections grow. Our love for our fellow carers is prevalent.”

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