characterized by deformities of the ears, eyes, cheekbones, and chin. The degree to which a person is affected, however, may vary from mild to severe. Complications may include breathing problems, problems seeing, cleft palate, and hearing loss. Those affected generally have an average intelligence.
Much of the public was made aware of this syndrome by the 2012 book and 2017 movie Wonder about a fictional character Auggie Pullman, with Treacher Collins syndrome, who struggled to fit socially into middle school because of looking so different. I read and enjoyed the book Wonder and posted a review about it 12/3/17. By contrast, the main character in Normal: One Kid's Extraordinary Journey is real. He is sixteen years old at the time of the 2020 publication of this book, having endured 67 surgeries by that age. These corrective surgeries allow him to breathe, hear, and eat more normally.
Normal: One Kid's Extraordinary Journey opens with Nathaniel at age thirteen swimming in a lake, swimming for the first time in his life, now that he no longer has a tracheotomy. Getting water in a tracheotomy is akin to drowning; swimming with an open hole in the neck is strictly forbidden. Every day routines like showering, or fun activities like splashing and water slides, become life threatening. The following graphic is shown from Part I: A Beautiful Baby Boy / Chapter: To Breathe.
Normal: One Kid's Extraordinary Journey has a medical focus rather than an acceptance focus as Wonder did. The book is fascinating, but neither morbid nor overly explicit. The graphic images among the pages are fun and do a great job of comedic relief in illustrating Nathaniel's various incidents or milestones (mile-boulders as his mom calls them). The following graphic is Nathanial after hearing aid implants, shown from Part I: A Beautiful Baby Boy / Chapter: To Hear.
The following onboard train image is recalls a "humorous" experience with a popping and leaking abdominal feeding tube under pressure during a family rail excursion. These three amusing but poignant illustrations are the artwork of Neil Swaab. There are many, many more of them throughout Normal: One Kid's Extraordinary Journey. They put a remarkably upbeat spin on what in reality are dramatic and potentially heart-rending situations. This next graphic is from Part I: A Beautiful Baby Boy / Chapter: A Day Out with Thomas.
When I requested the book from my local library, I had not realized I was getting a young reader's edition until I looked at the cover after I'd read the 327 page long book. (Book thickness had not clued me in ahead of time that it was from the juvenile section of the library.) An adult version titled Normal: A Mother and her Beautiful Son, authored by Magdalena Newman alone, existed in parallel. "What had I missed?" I fretted. The adult version had a forward by R.J. Palacio, author of Wonder, that was not included in the young adult edition. I learned however that the forward was available in the Look inside⤵︎ feature offered by Amazon. Palacio's forward was worth seeking out. From reading it I found that her impression of the family when they first met over lunch was that the Newmans "were funny and warm and incredibly kind, and that Russel [father] cried easily and Magda [mother] smiled easily." My curiosity about the interactions between the fictional world of Auggie and the real world of Nathaniel were addressed to my satisfaction in chapters of the young reader edition describing R.J. Palacio's interactions with the Newman family, their experiences on the set of the Wonder movie, and their invitation to the premier of the Wonder movie. Hollywood was not at all oblivious to reality.
I found no credit for illustrations given in the adult book Normal: A Mother and Her Beautiful Son, so I cannot be certain if there are "cartoons" in the adult edition of Normal: A Mother and Her Beautiful Son. If there are none, then I am definitely pleased that I read the young edition instead, even if I did so by happenstance rather than choice. Perhaps the intent of those drawings was to have the book appeal to a younger demographic, much as a graphic novel (i.e., a comic book) would. Those many black and white drawings contributed a great deal to my enjoyment of the book and conveyed, to an enhanced degree, the prevailing sense of ebullience of a young man while undergoing so many involved medical interventions to allow him to breathe, eat, hear, and bathe with any sense of normalcy. Normalcy. Nathaniel loved superheroes, he loved dogs, he loved video games, all characteristics of a typical, or should I say normal, boy. He had loving attentive parents who did their utmost best for him – also normal.
The young adult edition did not have a table of contents but perusing the Table of Contents of the adult edition did not lead me to believe I had missed much. When I compared verbiage in first chapter of both editions, it was alike. Perhaps the mother-only edition contained more of her perspective, her worries, her stress, her angst; in which case I am glad I read the upbeat young adult edition. Maybe the mother-only edition uses bigger medical terms; if so, I am further pleased I read the layman-friendly young reader edition.
In the closing chapter Nathaniel writes
It's weird for me to write this book, about what I've been through, when I don't want people to talk about what I've been through. We like to categorize people. That's how Wonder helped people understand me. "Oh, there's a kid like Auggie." But I think all of us have parts of our identity that we'd prefer people to see through. You notice how I look? Fine. You have a question or two about it? Sure, okay. But after that, I'd like us to move on, so we can see if we like to play the same games or talk about the same things. ... what I hope people take away from my story, the value of separating who someone is from what he looks like. If this doesn't come to you naturally, if you have to think about it first and remind yourself, looks don't matter, looks don't matter, I don't see anything wrong with that.
There are many instances in this book where I ached or rejoiced or laughed with the Newman family members: his father, after carrying his son to the operating room for each surgery, staying by his side until he was asleep, and then retreating in tears to the waiting room; his mother struggling to be brave when reinserting his feed tube, suctioning his tracheotomy, or tightening the screws on one of his post-surgery restraining devices; Nathaniel swimming for the first time, and eating spaghetti and meatballs for the first time without it having been pureed; Nathaniel hearing voices for the first time. Even though it may have a limited audience, I rate Normal: One Kid's Extraordinary Journey five stars, translating to Great! Read it!
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