This is one of those books I'm so grateful it was written and I had the chance to read it. After only about 25 pgs in, I sent my mom a copy. She's an art teacher and I knew she'd enjoy sharing the journey of reading this intersection of growing up with a disability with an overlaying analysis of art (most focused on Picasso).
Henley's writing is magnificent. The feelings she evokes-even in a memoir-are deep and real. I felt her anger, frustration, and at times hopelessness with our cruel world. As I listened to her description of facing anesthesia as a child, I found my heart pounding and realized I was holding my breath-just as I did no matter how hard I tried not to as I also went under anesthesia multiple times as a child. I also resonated with her hard-to-explain descriptors of subtle but painful exclusion from certain aspects of growing up or peer acceptance. There's this experience-before you even have words for it-where people will discuss things, like marrying someday or having children someday, and they awkwardly pass over you in these discussions. Sometimes the intention is kindness. They don't know examples of disabled adults who embody these roles and often we, as the disabled kids, don't either. There aren't easy answers or solutions to many of the complex situations Henley faced. As she said, her parents did the best they could in making hard medical decisions for/with her. I hope Henley also deeply knows that she also did the best she could. Her vulnerability and courage to share her own darker moments are admirable. I sometimes wondered if she was a harsher critic of herself than others who had caused her such pain.
While I'm sure I related deeply to this book because of our shared coming of age as visibly disabled women, I wish everyone would read this book. I couldn't agree more with Emily Ladau's review that THIS is the book our world, our children need-more so than Wonder, which de-centers the disabled character and mostly exists to make nondisabled people feel good. I hope Henley follows with another memoir about her later adulthood. She's a powerful storyteller and I can't wait to see where she goes from here.

A stunning debut memoir.

4.5 stars. This book was absolutely beautiful. Really really stunning. Incredible writing, and I love how she weaved art history and Picasso (I knew nothing about him but he sounds like an absolute TRASH CAN human) alongside her surgery journey and struggle to fit in and be “normal” in a world that is so cruel to any deviation. Kids are so mean sometimes, my god. It’s not the same, but both my siblings have medical challenges as well (one more severe) and the blatant stares we’d get as children (and even now) are just so obnoxious and make me want to fight people. I think it’s how I developed my best stink eye lol like LEAVE MY SIBLINGS ALONE, PEOPLE, and don’t be dicks.

The way she writes about her physical and emotional trauma, and that of her twin sister, Zan, was just heartbreaking. I wouldn’t wish for anyone to go through what they have gone through, but I am glad that they had each other to really go through this with, as well as the support of their close-knit family. I really did appreciate the art history bits, as I felt they gave more of a cultural context on what society has typically seen as “beautiful” through the ages, and all of the baggage and complicated historical roots that come with that.

This memoir is a deep reflection on what it means to be “normal/typically beautiful,” societal expectations, and one woman’s journey toward self-love and acceptance and making a life for herself.

No star ratings for memoirs

LIKES:

As toddlers, Ariel and Zan were diagnosed with Crouzon syndrome- a condition where the bones of the skull fuse permanently. They were the first known twins to survive it. Due to this, they had repetitive surgeries to enlarge their skulls, which largely alerted their appearance. The procedures were physically painful, but this suffering was nothing compared to the emotional pain of being ridiculed for disfigured faces.

Thanks to NetGalley and Macmillan Children's Publishing Group for providing this e-ARC in exchange for an honest review.

When I first requested this book, I didn't realize that this was a memoir (a genre that I enjoy). Before reading, I had a vague idea that this would be a sob story about all the struggles faced by the author, but the book exceeded my expectations.

I got hooked on the first chapter, and I loved every bit of the book. The story starts from when they were diagnosed and the impact it had on their loved ones. One of my favorite lines from this book goes, "What hurts more than going through the surgeries yourself is seeing someone you love go through it." The family and friend aspect and makes it more touching and oddly relatable.

Unlike some other autobiographies, this one does not portray the writer as a perfect person. Ariel was not understanding and patient with the pain. She was angry, confused, fed up, and said things she didn't mean. This is what I loved about her writing. Her honesty when she wrote how messed up and at times lonely her life was, and how it could have been better with a little more acceptance and a little less judgment.

The book is not inspiring because it's about trauma (and neither was it marketed that way). It is inspiring because it's relatable, fun, and nostalgic. Although the twins had their struggles, they tried to laugh at them, show others that it was okay to laugh with them, blend in with others. This read is one of the best and most impactful autobiographies ever.

Parts of it can be disturbing for readers below 10, but most readers will love it. Even if you are not a fan of this genre, I think this is worth a read.

Note on Picasso- I wish I could give this a five-star rating, but this is where Ariel's writing drooped. The book is named so because of an incident in her childhood that impacted Ariel greatly, but it doesn't have a significant connection with him. There are references to him made throughout the book, which were educational regarding Picasso, but felt very out of place.

PS: I interviewed Ariel Henley on my blog if you want to check it out https://bookguru-bookreviews.blogspot.com/2021/11/interview-with-ariel-henley-author-of.html

Rating- 4/5

Ariel and her twin sister were diagnosed with Crouzon Syndrome, a rare condition, as infants. Ariel’s memoir details her childhood and explains what it was like growing up with a facial difference when our society is so focused on toxic beauty standards.

This memoir is incredibly moving. I cannot even imagine the physical pain Ariel and her sister went through during numerous facial surgeries. Yet, it seemed like the emotional and mental tolls were even harder to endure. I was so sad and frustrated by the cruelness and ableist attitudes of others.

There was also a lot of interesting information about Picasso woven throughout the memoir. It made this a unique read, and I learned that Picasso was not a great person.

This is a phenomenal memoir that I highly recommend to others!! Thank you Ariel for sharing your story

This was a very well written memoir of growing up with Crouzon Syndrome (hence the title). I could have done without the detailed descriptions of the surgeries (because I have a weak stomach), but it was very eye opening to the struggles for survival that Ariel and Zan had to go through. It was also heartbreaking to read about all the bullying they were subject too. I don't understand why people are so awful to others that look different than they do, or don't fit the societal "norms" of beauty.

This was my book club's pick for August. I'm looking forward to hearing what other thought of it.