If you were offered the chance to be ‘normal’ would you take it? Do we even know what ‘normal’ is?
The Willow family have been through a lot together. Louise has devoted her life to her family and raising her disabled daughter, Patience. Pete now works abroad, determined to provide more, even if it means seeing less of those he loves. And Eliza, in the shadow of her sister, has a ‘perfect’ life in London, striving to live up to her mother’s high standards.
Meanwhile, Patience lives her life quietly, watching and judging the world while she’s trapped in
her own body. She laughs, she cries, she knows what she wants, but she can’t ever communicate this
to those who make the decisions for her. Patience only wants a voice, but this is impossible.
When the opportunity to put Patience into a new gene therapy trial to cure her Rett syndrome becomes available, opinions are divided, and the family is torn.
The stakes are high, and they face tough decisions in the hunt for a normal life. But is normal worth it? What do we even consider normal? Is Patience about to find out…?
Victoria Scott has been a journalist for more than two decades, working for a wide variety of outlets including the BBC, Al Jazeera, Time Out, Doha News and the Telegraph. Alongside her love of telling real-life stories, she has also always written fiction, penning plays, stories and poems ever since she first worked out how to use her parents’ electric typewriter.
When she’s not writing, Victoria enjoys running incredibly slowly, singing loudly, baking badly and
travelling the world extensively.
Victoria is a Faber Academy graduate. She has a degree in English from King’s College, London and a Postgraduate Diploma in Broadcast Journalism from City University, London. She lives near London with her husband and two children, and works as a freelance journalist, media trainer and journalism tutor.
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My thoughts: inspired by the author’s own family, this sweet but sad novel explores what it is to live with a complicated disability – Rett Syndrome and how a family copes with the situation. Patience is locked into her body, but she sees and hears everything around her. Her family have started to struggle and there’s an offer of gene therapy that might offer Patience some freedom – the possibility causes greater friction among her family.
Read this with tissues handy, I certainly had a little cry. I could relate to the Willow family in a few ways. My younger sister has complex learning and behaviour issues and while not physically restricted, growing up she certainly needed more support and attention than most. My husband is a paraplegic, so I also know what it is to be a carer. It can be very, very hard at times.
I loved Patience, she was smart and funny. Her frustrations were completely understandable – not being able to communicate her thoughts and feelings means her family and carers think she has a child’s mind and understanding but she’s actually an adult and quite capable of understanding everything she hears.
Eliza, her sister, and their parents all have a lot of things going on, but Patience is the person they revolve around, and they neglect themselves – which even Patience thinks is stupid.
This is a book with a lot of heart, and a lot of feeling. The author’s own sister has Rett Syndrome and you can feel the love for her in the bond between Patience and Eliza. It’s a really lovely book and although it made me cry a bit, is ultimately warm and engaging.
*I was kindly gifted a copy of this book in exchange for taking part in the blog tour but all opinions remain my own.