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. The stakes are high, and the Willow family face an almost impossible dilemma.
And what is a 'normal life,' anyway? Is Patience about to find out...?
Available on NetGalley
Average rating from 57 members
Patience is a beautiful young lady. A much-loved daughter and sister. Funny, incisive, observant. Patience is also a huge Take That fan. Patience cannot however share her thoughts and observations with her family as she has Rett syndrome. She is unable to communicate or look after herself and is reliant on her mother and carers for everything. Those around her are uncertain as to what Patience can hear and understand, which leads to some interesting internal narrative from Patience. Offered the opportunity to participate in an experimental gene therapy trial, we are given a raw insight into a family torn apart by differing opinions - and most importantly that Patience isn't able, or asked, to take part in the decision. This book is a treasure. Victoria Scott's author's note at the end explains how she is able to dissect this family and their actions. I felt privileged to be allowed into this thought-provoking world. Thank you Netgalley and Head of Zeus for this ARC. In particular, thank you to Victoria Scott for this wonderful debut.
Patience tells the story of a family of four who live in Kidlington. Pete and Louise have two daughters one of whom has Rett syndrome, Patience. Her sister Eliza is in a troubled relationship to Ed and stuck in a job she hates. What I absolutely love about this book is that each chapter is told from a different character POV, including Patience! Usually in books you find the characters with disabilities have no voice or are just in the background, so this makes a great change! I also love how the book continues to comes back to the topic of 'what is normal' Patience asked " what on earth does normal mean? Is anyone normal? I've seen the way 'normal' people live their lives...I don't much like the look of the mess some of them make" Patience splits her time between living at home and staying at Morton Lodge her 'respite care home'. She as a favourite carer, Jimmy' a good looking young man, who her sister also fancies. The family goes through so much: money troubles, working abroad to earn more money, illness, self esteem issues, mental illness and most importantly a phase1 gene therapy trial. Where we learn so much about best interest meetings "because she's not able to make decisions for herself.... and being her parents was not enough in the eyes of the law". This was one of my favourite books I have ever read, that's how much it ment to me and it has so many great parts to it such as life struggles, romance and sadness. I can't recomend this book strongly enough! 5 ☆☆☆☆☆plus!
This is such a beautiful, thought provoking and moving story which I know I am going to be thinking about for a long time to come! Patience tells the story of the Willow family who have been through so much together over the years. Louise has devoted her life to caring for her youngest daughter Patience whilst her husband Pete works abroad, determined to provide for his family, even if that means seeing less of his loved ones. Their eldest daughter Eliza feels burdened by the secrets she is trying to keep from her already overloaded family, scared of how they will deal with her news. Meanwhile, Patience quietly observes her family, holding opinions and thoughts of her own that she can never share, as she is trapped in her own body. When the family are given an opportunity for Patience to take part in a new gene therapy trial, which has the potential to cure her Rett syndrome, they face an impossible decision. Are the very high risks worth the chance of the reward, no matter how small this could be? I absolutely loved getting to know the Willow family and the insight into their thoughts and feelings as the story progresses. The dilemma the family face is a truly impossible one and I thought it was really clever to show how even in one family, who all care so deeply for Patience, just how different their views can be. I really cared for each and every one of them and all that they were going through. I also thought it was really effective how there were different secrets that they were all keeping. Secrets which only Patience knew but had no way to communicate (although her family were never aware of her understanding)! Throughout the book we get to enjoy chapters from each family member’s perspective and my favourite of these were the ones from the perspective of Patience. She is such an incredible character, and it was so unique to get an insight into her world given her family have no way to communicate with her. Her humour and outlook on life was amazing and being a massive music fan, it really made me smile how much she enjoyed the music of Take That! I always looked forward to getting to read another of her chapters and she was always making me laugh. Her voice made this book so special for me and she really moved me! There is so much emotion and feeling within the pages of this book and I truly cared about what happened to each of the characters and how they were feeling at any given time. I never wanted to put the book down as I felt so invested in this family! I also really liked one of the carers, Jimmy, who we get to learn more about as the story develops. I thought he was a wonderful, kind and caring man. I didn’t have any knowledge of Rett syndrome before reading Patience so found this to be really moving to learn about. I also enjoyed Victoria’s author’s note at the end of the book and learning about her sister who inspired this beautiful story and Patience’s voice. I have been on a real rollercoaster ride of emotions with the Willow family and know that this is a book I will never forget. It has given me so many moments to pause for thought. I honestly cannot recommend Patience highly enough and am excited to see what Victoria writes in the future!
I loved this book. it was raw and emotional and it was laugh out loud funny and I just could not stop reading. Would definitely recommend
I'll give five stars for the title & cover design alone. Victoria Scott's Patience: Realistic, human and steeped in personality. Thank you Head of Zeus and Net Galley for the e-ARC.
Patience is many things: a HUGE fan of Take That, a person with long blonde hair that many people envy. She's direct, funny observant and a sister and daughter. Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across. Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities. As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs. I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying "yes, that's me!" and the succinct description was spot-on with the specific needs it mentioned. Patience's parents are fighters, and there's a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza. There's no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night. Eliza has her own struggles, with life and love so it was great to see her "slice of life" too. Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he's thinking of his family. There are some real conflicts though between him and his wife due to the circumstances of their life. What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience's mum jumps at the chance but this creates conflict with her husband. Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out. There are parts that made me smile and others that made me identify so much with Patience's life. The mix of frustration, worry happiness and big dreams. Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace. Patience and her family are people I just wanted to hug and who I would love to actually meet. I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young. Patience is a real unforgettable treasure of a novel and I loved every page. Those who don't have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this. I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It's a very current novel as the medical trials are a real thing and that made it even more powerful for me. Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review. 5 sparkling stars. One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes. Patience is a novel everyone should read. It's raw and emotional, but also an enlightening pick-me-up. If you, or someone you know has disabilities and has ever felt alone, you are not with this book. It's like a huge comforting hug that says "welcome to my world and I understand you." I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are. There are so many life lessons in this novel, and I felt as if I were living the family's experience. If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don't have Rett Syndrome, my challenges are similar to Patience's in terms of mobility and care. The novel makes me feel extra happy for what I can do, even thought it's in a different way to others. I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through. Patience is not one to be pitied and I will never forget the day I discovered her and this book.
. Patience by Victoria Scott. This novel is a gem. The story by a first-time author, takes us into the world of Patience, a ‘Take That' superfan and profoundly-disabled young woman living with her family. An ordinary family living in the most challenging circumstances, as they struggle to give Patience the quality of life every parent wants for their daughter. Imagine the elation when out of the blue comes the possibility of a cure. A cure for the condition which has robbed Patience of her ability to communicate or control her body in any way. But there are risks-some of which would make her situation worse. The characters are completely convincing. I really became involved in their lives and dilemmas. I found I had to keep reading to find out what happened to them. They struggle through difficult decisions, seeking what's best for Patience; all driven by their love for her. There are no easy answers to the dilemmas facing this wonderful family and you are with them every step of the way as they stumble towards a resolution. Meanwhile Mum, Dad, and sister Eliza each have their own emotional stories which unfold as the novel progresses. Hearing from each of the main characters as the story develops really helps you to understand and share in all their different points of view. Above all, the character of Patience shines through as she watches the world and her family’s lives. Unable to communicate, she is forever an observer, understanding but unable to share in what's going on around her. The novel revolves around some big issues but with a light touch-with humour, and empathy. The story is informed by the author's own experience which helps make it a vivid picture of a family which is both very ordinary and extraordinary. By turns, heart-wrenching and uplifting, this novel and this family found a place in my heart and is thoroughly recommended.
This is a truly beautiful yet heart breaking story about an illness I had never heard of. It shows how hard family life can be when tough decisions need to be made and the potential consequences.
Wow. I read hundreds of books, and I know this one is going to stay with me. I knew it because in all the time I was reading it, if ever I’d had to put it down, my mind kept wandering to the story line & wondering what would happen next. Let me also add that I’m not a “gusher” when I review but this book is absolutely worth the most effusive language I can think of! Then I got to the end and was blown away to read that the plot was inspired by the author’s real life experiences. I am inspired by the strength her family must have shown. I hope she takes real pride in having created such a beautiful story that feels authentic and was so moving. The characters are so engaging and the entire book is beautifully written. I will absolutely be looking for more books by this super talented author.
A touching, sensitive book that doesn't resort to tearjerking emotion nor saccharine sentimentality. It deals, quite matter-of-factly with the day to day reality of caring for someone who is very, very disabled and the way life inevitably centres on them. I once worked closely with a child whose life was severely limited and who died in great pain at the grand old age of 9. One family member described this child as not the centre of the family but their sun, around which they circled, with no choice in the matter but without that sun they viewed themselves as having no life, so they were glad of him. Such nobility is portrayed is this book I feel.
I was given the opportunity to read an advance copy of this by NetGalley and boy am I glad I was. This is a wonderful story about Pete and Louise, and their two adult daughters Eliza and Patience. Patience has Rett syndrome, a condition which leaves her unable to use her body or communicate with her family. It soon becomes clear though that Patience is acutely aware of everything that goes on around her, and she has plenty of opinions about these things too! She adores Take That, hates daytime TV, and keeps all the secrets that people spill in front of, or to, her. Patience has a chance to be included in a new medical trial that could change her life dramatically and the rest of her family struggle to decide whether to enrol her - the writing about these ordinary people, who are all struggling with their own issues, trying to make such a monumental decision about a person that they love dearly was absolutely superb. It never veers into sentimentality or trope, it always feels real, authentic, and relatable. This is probably due, in part, to the fact that the author has a sister with Rett syndrome so is drawing from her own experiences. Although the main character is obviously Patience, the trials, tribulations, joys and despairs of Pete, Louise and Eliza are given plenty of attention too. This meant that I felt like I really knew this family and I was totally invested in all of their outcomes. Above all, this is a fully inclusive representation of disability - whilst it is obviously an important plot point, it is not the only thing that we are shown about Patience, she is a fully rounded character with a personality to match. She has beautiful hair, a wicked sense of humour and strong thoughts about how she wants to live her life. A triumphant debut indeed.
We meet Patience who suffers a seizure whilst out. Patience has Retts Syndrome and is invited to participate in a trial. How far would you go to save the one person in your life? The chapters are each told from a different perspective. Had me gripped throughout and a thought provoking read.
This book will be used by myself in my lectures that deal with disability issues, as it concerns a young person ,and the student nurses really relate to this age group, which is not really surprising. A common question expressed by this group, concerns medical progress. If we can test for abnormalities, and can prevent so many diseases, where and how do these rare diseases develop? We look at the difficulties of a life spent dependent upon others and do exercises using wheelchairs, distorting glasses from the RNIB, various work experiences in care facilities, in an attempt to understand life from the viewpoint of a disabled person, but this book shows the stresses and strains that are laid upon the family as well, in their attempts to get Carers to help, organise respite care, how expensive the whole business of looking after a person with complex needs is, and how the Government at times, seems to go out of its way to complicate and frustrate. Patience is a young woman with Rett syndrome, who is unable to communicate, but has a full understanding of what is said to her, unbeknown to her family. Her parents are exhausted, and cracks are starting to appear in their marriage. Her sister, Eliza, feels a great weight of expectation has been placed upon her to have the life that her sister is unable to enjoy, and also, to provide her parents with the hopes and dreams that are unable to be fulfilled by Patience. Eliza, however, has her own problems, that she is scared to share with her parents as she doesn’t want to disappoint them, so she confides everything to Patience, as she keeps all the secrets!! The chapters are told from a different characters viewpoint, they reveal their difficulties and their determination to put on a brave face for others, but this can be at a terrible price for both parents and siblings. Siblings often feel very conflicted, they are ignored due to the needs of the disabled sibling, yet they are also part of the family, and they don’t want to cause hurt, they can become quite isolated, even in the middle of a big family. This heartwarming and heartbreaking book asks you to put yourself in Patience’s shoes, if there was a treatment that would give an opportunity to reverse this syndrome, albeit with risks, what is best for Patience? Is she content in her own world, do we accept people as they are, or do we strive for perfection every time? I am also a carer, illness dominates my life. The only time I seem to leave the house is for the Doctor, Hospital, Physio and of course, endless blood tests!! FOMO is a real thing, but you have to grit your teeth and carry on, for both yourself and the afflicted partner. Luckily, I can do most of my teaching online, apart from the practical parts of the courses. This book is a marvellous read, and I hope will give a valuable insight into the world of the disabled person. I would like to wish Victoria Scott and her family all the best luck in the world for her bravery and honesty in sharing such a personal history. My thanks go to Netgalley and publishers Head of Zeus for my ARC in exchange for my honest review. A five star read if ever there was one. I will review to Goodreads, Waterstones and Amazon later.
My normal reading genres are based around romance, with a touch of humour. This is totally different, being based around a severely disabled girl and her family. It reminds me of another book that I really enjoyed, The One Hundred Years of Lenni and Margot by Marianne Cronin, really drawing me into the story and characters. The multi - viewpoint works really well, showing how each of the characters is affected, especially for Patience and her inner thoughts that she is unable to communicate. Each of the family has their own struggles which threatens to split them apart, but there is an overall bond of love that clearly sounds through. I can highly recommend this book, be prepared for a very emotional journey but an overall lifting experience. I received an advance copy of this book from the publisher through Netgalley, however this did not influence my review of the book
What an amazing read! No, seriously, I haven't felt gushy about a book for a while, now, and this one, well, it gave me the feels. Now, it's not a rom-com, as I usually enjoy, but the story of Patience, a woman diagnosed with Rett Syndrome in childhood, captivate me. I enjoyed how the book was written, with Patience's point of view given through her thoughts, since, she is unable to talk, and the differing viewpoints of her family: both parents and her sister, Eliza. Life can't be easy as a carer, and member of family of an individual who is diagnosed with such a disorder. You often find the world sympathising with them, but this also turned the tables on that, by providing Patience with a voice. Regardless of whether she was able to talk, move, feed. herself, etc., she still has opinions, and thoughts, reminding me that we never know what is going on in the mind of someone we may consider 'disabled'. Thoroughly enjoyed this. Many thanks to NetGalley and Head of Zeus for an ARC in exchange for an honest opinion.
Witty, warm and severely physically disabled Patience shares her story, alongside those of her parents Louise and Pete and sister Eliza. #Patiencenovel follows the Willow family in the run up to and beyond a revolutionary gene-therapy trial. Louise struggles to get Pete’s approval or understanding, meanwhile Eliza has problems of her own - a broken relationship, the need to tell her parents that the wedding’s off and another surprise spanner in the works. And Pete struggles to keep the family finances straight. At the centre of it all is Patience, whose family love her to pieces but who has unwittingly created some of their biggest problems. This is a charming story of love, family and the value of having a voice to share problems. The story is based on many of the author’s own experiences of having a Rett sibling and perhaps for this reason, it’s searingly honest and raw in places. I hope Victoria Scott has another novel in her, as her writing style and story-telling ability is excellent. This is a thoroughly enjoyable story and thank you to #netgalley for a preview copy.
This story is really inspiring and informative. I've never really heard much about Retts syndrome but I was genuinely curious to find out what I could when presented with the chance to read this book. It was written really well and gave me a real insight into what it's like to have this disability. I really enjoyed the story involving a thirty plus woman and her family members and surrounding care staff. I laughed and cried at high and low moments ,really getting into the story at it's most emotional. The author Victoria has written this story in such a way that it will appeal to all, with the added bonus of finding out about Retts Syndrome . It writes like a novel with Patience, the main character, telling her views and opinions on what she thinks known throughout the story. I've given it give stars because I really enjoyed it from start to finish!. Thanks to Netgalley for the free ARC book for an honest review.