Normal One kid's extraordinary journey

Magdalena M. Newman

Book - 2020

"Normal. Who is to say what this word means? For Magda Newman, it was a goal. She wanted her son Nathaniel to be able to play on the playground, swim at the beach, enjoy the moments his friends took for granted. But Nathaniel's severe Treacher Collins syndrome -- a craniofacial condition -- meant that other concerns came first. Could he eat without the aid of a gastrointestinal tube? Could he hear? Would he ever be able to breathe effortlessly? But Nathaniel looks at 'normal' from a completely different perspective. In this uplifting and humorous memoir that includes black-and-white comic illustrations, mother and son tell the story of his growing up -- from facing sixty-seven surgeries before the age of fifteen, to maki...ng friends, moving across the country, and persevering through hardships. How they tackle extraordinary circumstances with love and resilience is a true testament to Magda and Nathaniel's family, and to families everywhere who quietly but courageously persist."--

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jBIOGRAPHY/Newman, Magdalena M.
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Children's Room jBIOGRAPHY/Newman, Magdalena M. Due Apr 5, 2024
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Review by Booklist Review

In her break-out novel, Wonder (2012), R. J. Palacio aimed to help readers understand craniofacial differences through the character of Auggie. But before Auggie existed, real-life Nathaniel Newman was born with a severe case of Treacher Collins, requiring a tracheotomy to breathe, hearing aids, and more than 60 surgeries before turning 16. In this frank yet always hopeful memoir, illustrated with expressive black-line drawings, teenage Nathaniel and his mom alternate perspectives on life with this syndrome. Their conversational narratives recount Nathaniel's baby and childhood milestones, the ups and downs of his surgeries, his transition to school, and the range of strangers' reactions, from rudely staring to making fast friends. At its heart, as the title suggests, is what it means to be normal. Wonder fans will also welcome such connections as Nathaniel's working relationship with Palacio and how his image inspired the physical appearance of the movie version of Auggie. Nathaniel's story encourages the celebration of differences while providing illuminating context to Palacio's fictional account of disability.--Angela Leeper Copyright 2019 Booklist

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

In alternating narratives, mother and son team Magdelena and Nathaniel, who is 16, tell the story of Nathaniel's birth and young life with Treacher Collins syndrome. Magdelena describes the ways their lives have changed as awareness of Treacher Collins grew following the publication of R.J. Palacio's Wonder; Nathaniel also notes that, while he's glad for the growing attention and representation of Treacher Collins, his experiences are entirely his own. Educational and enlightening information about Nathaniel's craniofacial differences ("My nose didn't connect to my airway"), a planned year and a half of surgeries to give Nathaniel more autonomy, and milestones, such as coming home from the hospital more than a month after his birth, add structure to the narrative. But it's the honest--sometimes joyful, sometimes painful, and occasionally unflattering--memories that prove most compelling. As Nathaniel and Magdelena share their family's story, illustrating that "normal" is all about perspective, they demonstrate the ways in which the Newmans are imperfect individuals for whom Treacher Collins is one aspect of identity. Line drawings by Swaab (the Secrets to Ruling School series) depict significant passages, such as Nathaniel's G-tube becoming dislodged, in accessible cartoons that add levity to the narrative. Also available: Normal: A Mother and Her Beautiful Son, for adults. Ages 10--up. (Jan.)

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Review by School Library Journal Review

Gr 5 Up--Nathaniel Newman went swimming "normally" for the first time when he was 13 years old. He could put his head under the water and not worry about water flooding his trach (a breathing tube). Nathaniel was born with Treacher Collins Syndrome and needed a tracheostomy to breathe. When he was 12, he decided to undergo a yearlong process (a massive surgery and countless additional procedures, including wearing a cage around his head for six months) to enable him to breathe without a tube. The surgery was successful. Treacher Collins is the syndrome that the fictional character Auggie has in R.J. Palacio's Wonder, and Nathaniel's photo, hanging on the wall at the Center for Craniofacial Care at NYU Langone Hospital, was the author's inspiration for the character. Nathaniel and his family spent time on the set for the movie adaptation of Wonder and provided insight for the actors. Nathaniel and his mother have written a powerful and honest memoir together; chapters are narrated by both of them in alternating sections. Nathaniel describes his multiple surgeries, relays his love of superheroes, and captures his very typical relationship with his younger brother while his mother shares the realities of parenting a child with very complex medical needs. VERDICT Recommended for middle school libraries. Nathaniel and his mother tell a compelling story, but when coupled with additional information about the much-beloved book Wonder (and the movie), this title is sure to fly off the shelves.--Ragan O'Malley, Saint Ann's School, Brooklyn

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Review by Kirkus Book Review

Nathaniel Newman and his mother, Magda, recount how Nathaniel's Treacher Collins syndrome has affected their family.In alternating passages, the authors relate how, after being born with severe craniofacial deformities affecting his hearing, eating, and breathing, Nathaniel underwent "sixty-plus" surgeries before age 16. Along the way, he and his family faced kids' curiosity and adults' insensitivity. Magda's poignant, sometimes absurdly humorous endeavors to raise Nathaniel and his little brother, Jacob, as normally as possible emphasize how Nathaniel's disability shaped their family; siblings of kids with disabilities will sympathize when Magda describes how Jacob's needs came second. Nathaniel is witty and matter-of-fact about his condition, concluding that "it would have been easier to be born normal,' but far less cool." Throughout the book's second half, the authors discuss how R.J. Palacio's book Wonder (2012) encouraged empathy for kids with craniofacial and other differences, and fans of the movie will appreciate thought-provoking peeks behind the scenes. Despite being dubbed "Auggie Pullman come to life," Nathaniel abundantly shows that he's his own multifaceted person. Flashbacks to Magda's childhood in Poland emphasize the importance of family and imagination in tough times. Though their story sometimes feels disjointed or overstuffed, its breadth reflects their personally extraordinary but emotionally universal journey. As Nathaniel observes, "I'm not normal, and neither are you." Swaab's full-page cartoon-style drawings introduce each chapter. The Newmans present white. Magda is Catholic; her husband and sons are Jewish.Funny, compassionate, and thoughtful. (Memoir. 10-14) Copyright Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

Draconian Does Not Mean Fun NATHANIEL About a year and a half before I went swimming in Beaver Lake, when I was eleven, my parents had taken me to meet with a new doctor at Seattle Children's Hospital. Another doctor's appointment, woo-hoo. But my parents were very excited to hear about a new surgery this guy, Dr. Hopper, was doing.       Starting before I was born, my face didn't form properly, so doctors had been trying to help me function for my entire life. I could hardly breathe. My nose didn't connect to my airway, and because my jaw was so small, my tongue filled my mouth. There were problems with most of my senses. I couldn't smell or breathe because extra bones were behind my nose, blocking it. I couldn't eat because my jaw was small and out of alignment. I could barely hear because Ididn't have ears to capture the sound and deliver it to my brain. I didn't have bottom eyelids, which meant I couldn't close my eyes fully, and my vision wasn't great, although that was just run-of-the-mill bad luck. Bonus! The only good news on my five senses report card was that I could touch--everything about me from the neck down worked just fine. And my brain was perfectly fine too, maybe even a little bit awesome, if I do say so myself, which would help me deal with all the other problems.       I grew up knowing that I was born with a syndrome called Treacher Collins and that it made me different, but I didn't feel different. I felt like myself, the only self I'd ever known. Other kids weren't fed through a tube in their stomach for the first year and a half of their lives. Other kids didn't wear hearing aids. Other kids didn't have a hole in their neck to help them to breathe. Other kids didn't grow up having doctors' appointments instead of soccer practice and surgeries instead of vacations. Other kids didn't have a nurse with them at school. Other kids could shower, swim, play roughly, go out in the rain. But the way I see it, a certain number of kids are going to be born with issues like mine every year. One in forty thousand to one in seventy thousand, if you ask the people who count up these things. That's not very many, but that's just kids with Treacher Collins. Tens of thousands of kids are born with facial differences in North America every year. Plenty more kids have different problems to deal with. I'm definitely not going to do the math on that, but I know that if you add all those kids together, I'm just one in a huge crowd. If you look at it that way, I'm pretty normal after all. MAGDA For our first appointment, Nathaniel's dad, Russel, and I, Nathaniel's mom, sat down in chairs in front of Dr. Hopper's desk. Nathaniel picked a bench off to the side of the room. Dr. Hopper was pioneering a new surgery. He hoped to dramatically change Nathaniel's ability to breathe, at last setting him free from the tubes and pumps and antibiotics that had entangled him for his whole life.       The very first thing Dr. Hopper said to the three of us was, "You'll hate what I'm going to tell you. It's draconian." I explained to Nathaniel that draconian meant extremely harsh. He registered that, then went back to drawing on a piece of paper the nurse had given him.       Dr. Hopper went on to explain that if we agreed to the surgery, he and his team would try to change the structure of Nathaniel's entire face. It would take several preparatory surgeries, and then the biggest one would be a whopper, not just because of the eleven-hour procedure itself, but because of what came afterward. The follow-up treatment was not very different from what you might invent to torture your worst enemy. (Sure, when you torture your worst enemy, the end goal usually isn't to give the guy a chance to breathe through his nose and without the help of a trach, but otherwise this was exactly the same.) For now, I'll just say that it involved four months of wearing a heavy cage around his head, attached by screws.       In the end, if the surgery was successful, it would change Nathaniel's life. He would still look like himself, the doctor promised us, but for the first time since he was six weeks old, he wouldn't need a breathing tube. He would be able to take a shower, and yes, he'd be allowed to swim.       Dr. Hopper said, "The entire process, including six surgeries, will take a year to a year and a half, but it might work." Nathaniel would only be the third child to have the procedure. It was as if the doctors, amongst themselves, had said, "If we can fix Nathaniel Newman, we can fix anyone." The description of the treatment was not a pleasant thing for a parent to hear. I wondered how it was sounding to the eleven-year-old would-be patient. "You're doing this because we said so" wouldn't fly in this case. It was torture! He couldn't wake up surprised to find his head in a vise. We had to make sure he knew what he was getting himself into, and he had to be on board. That was why we'd brought Nathaniel with us to Dr. Hopper's office to hear everything he had to say.       When the doctor finished describing this terrible but potentially miraculous plan, his dad and I looked at our son to see his reaction. Nathaniel was in the corner of the room. He had a sheet of white paper taped to his chest. He'd colored the paper red, and there were big holes stabbed through it, as if he'd been riddled with bullets.       "What are you doing?" we asked him.       I think we both expected him to say: "This is what you want to do to me. You're going to destroy me."       Instead, he cheerfully said, "You're not going to believe it. We've been overrun by monkeys, and they all have muskets."       Nathaniel had always found his way through the pain and suffering, and this was exactly how he did it. Monkeys and muskets one day, a team of superheroes another--these characters and their comic book battles distracted him from bad news, boredom, and pain.       Russel pressed him. "Nathaniel, this is serious. It's going to suck. Did you hear the details? Do you have any questions? What do you think?"       Nathaniel looked up. He asked, "Do I get to miss school?"       Russel said, "Yes, you will miss three months of school."       Nathaniel gave a double thumbs-up. "Awesome. Let's do it." NATHANIEL I was bored. To be honest, I'm always bored when doctors are talking, but my parents make me turn off my iPad when there's "stuff I need to hear." So I had asked a nurse for a marker. The one she gave me happened to be red. While I "listened," I drew a bullet hole on a piece of paper and taped it to myself. Did it mean I had a death wish? No! Occasionally, I draw laser beams going through people. This doesn't mean I'm violent or insane. It just means I like the way I draw laser beams.       Ever since I could remember, I'd had a tracheostomy to help me breathe. Without it, I wouldn't be alive today. A trach is a tube that looks like a mini-drinking straw. It goes from a button-like valve on your neck to your windpipe (on the inside, of course) to help you breathe if you can't do it independently. For my whole life I'd known my life-saving trach was (a) a danger to my health and (b) a huge inconvenience. But it was also all I'd ever known. It felt normal to me.       Imagine if someone came up to you and said, "Wow, you have to go to the bathroom several times a day? Your body doesn't just take care of that on its own? I feel so sorry for you. That must be gross and annoying." And you looked around and noticed that nobody else had to interrupt what they were doing to take a bathroom break. You were the only one. Nobody else even had bathrooms in their houses, so you had to carry around special equipment to handle your unusual needs.       Then you might say, "Okay, I get it. Their bodies work better than mine." You would understand that idea, but it would still be hard to actually know what it felt like for your body to work just like theirs, what it felt like to be "normal."       When I said, "Awesome! Let's do it!" to Dr. Hopper, I was acting like the surgery was no big deal, but I really did like the possibility of being able to swim farther, deeper, for longer, without an adult hovering nearby. And though it was hard for me to imagine, I knew that if I didn't have a trach, so many of the medical issues I dealt with every day would just . . . disappear. I wouldn't get infections. I wouldn't worry about someone bumping into the trach. My parents wouldn't have to change the trach tie (which held it in place). I wouldn't have to get a new trach every two weeks. The cap wouldn't pop out and fly down the school hallway when I sneezed, as it once had done in front of my entire class. I was used to having the trach be part of my life, but it wasn't too hard to conclude, based on observation, that life without it would be a whole lot easier. I liked what the surgery promised, and I wanted to have it and for it to be successful, but I didn't want to get my hopes up. MAGDA From the day he was born, Nathaniel accepted his physical challenges, but people around him had a little more trouble. He looked different to them. He didn't look "normal." People had strange, awkward, sometimes mean responses to seeing him.       Normal. When you take what is most common and call it normal, you are suggesting that there is something abnormal, something wrong, something bad, about not being like most other people. There is judgement in the word. When I yearned for normal, I wanted Nathaniel to have the comfort and opportunities that any other kid would take for granted. I also wanted him to be free from that judgment.       Normal was our goal, but for us normal meant seeing, eating, hearing, breathing. Normal was a happy, carefree childhood. Excerpted from Normal by Magdalena M. Newman, Nathaniel Newman All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.