Book Review: Normal: One Kid's Extraordinary Journey, By Magdalena Newman (his mother) and Nathaniel Newman (her son) published January 14, 2020, 336 pages, for grades 5-6 or 10 years and up, Lexile measure 880. Please note: this book is not yet in the Pageturner library and will require student requests in order for books to be purchased.
What is “normal?” Who decides? Is it in any way useful to label any person or thing as “normal?” To be thought of as not “normal” can be highly traumatic. For those whose appearance is essentially different, being labeled abnormal can be much, much worse. In 2012, a fictional book was published by author R.J. Palacio about a boy born with an unusual facial anomaly. Titled Wonder,* it rose to the top of bestseller lists for children. In this book, the non-fictional, very real Nathaniel Newman himself addresses “normal:”
“ If one person can fly, but no one else can do it, then it’s not normal. So, does that mean that everyone who can’t fly is normal—even me? Of course not. There are many other ways to be different. In fact, there are so many other ways to be different that everyone is different. But for some reason lots of people decide that if you look like them and behave like them and have the same interests as them, then you meet their idea of “normal.” When people don’t see me as normal, they’re focusing on a tiny piece of me—the outside, from the neck up—instead of seeing a fuller, cooler picture. There’s nothing wrong with being unusual. Flying isn’t normal, but it’s better than walking. Having four dogs isn’t normal, but it’s better than three. Then again, I’m biased because I have four dogs.”
This is a true story, unvarnished in its details, written by a mom and her firstborn, Nathaniel, who was born with a very rare genetic condition called Teacher Collins Syndrome, which affects fewer than 20K cases in the U.S. per year. Teacher Collins most often affects the cheek bones, jaw, chin, and ears. Its symptoms include: downward-slanting eyes, a very small jaw and chin, & hearing and vision loss. Some babies may be born with a hole in the roof of their mouth (cleft palate). Treatment is focused on correcting facial structure and typically may involve plastic surgery, orthodontics and dental care; there is no cure, and it can last a lifetime. It does NOT affect intelligence in any way, although sadly, people who see an individual with TC Syndrome almost immediately assume that it does. People who have this condition think of themselves as completely normal. If you’re interested in seeing and hearing someone with TC, please visit: https://youtu.be/jGwwLbrwwG0?si=PPa3vZJUl1zKSeLD
Nathaniel was incredibly lucky to be born into a loving family with parents absolutely devoted to his care--he needed it. His mom writes with brutal honesty; seeing him after giving birth, she thinks (recalling later), “This is the worst day of my life.” But what his father tells him of that day is this: “’The picture I have in my mind is your mother, sitting in a rocking chair in the hospital. She is clutching you to her chest. Tubes are springing out of you in every direction, but your mom is humming, caressing you, loving you.’”
As a newborn, he was prone to stop breathing, which required immediate emergency care. There would be many such emergencies in his infancy--and they would continue. In this memoir, medical issues are addressed graphically in a straightforward manner. Nathaniel can’t eat and must be fed through a gastric tube. He frequently vomits from his mouth and from the tube in his stomach.
Over the course of 13 years, he will endure some 70 surgeries in toto. Finally he is asked whether he wants to submit to 53 surgeries--on his face. This will also involve having his head fitted into a metal halo for some four months, with screws going into his skull that will occasionally bleed. At one point his eyes are sewn shut for several days. Kids today read all kinds of what we adults may consider horrible stuff about demons, monsters, and more, so I don’t think they’ll have issues reading about Nathaniel’s medical interventions. Through it all, Nathaniel remains a remarkably normal child. He deals with bullies every day, and he lets it all roll off as though he were a duck with waterproof feathers. Nathaniel is one of the most admirable people I have ever come across, and I can say the same of both his parents. They had been completely unaware of any genetic markers for his syndrome; a few years after Nathaniel’s birth, they get pregnant again and hold their breaths, but his brother turns out just fine. To my knowledge, there are currently no tests for genetic markers except in patients who already have TC. Very rarely, TC Syndrome may be diagnosed in utero, if cranial malformations are detected through ultrasound (I could barely figure out which end was which, on my own children’s ultrasounds, but I'm no doctor.)
Nathaniel’s mom had the courage, too, to write about her own prejudices:
“When Nathaniel was two weeks old, there was a baby who joined him in the hospital. He had many of the same problems as Nathaniel, plus a cleft lip and palate, which means that his lip and the roof of his mouth didn’t form properly. The mom didn’t speak any English, so there was a translator helping these new parents navigate the complicated medical planet onto which they’d just been teleported. The baby got a trach and a g-tube right away. The mother came to visit him every day. Over the years, until both of the boys were nine or ten years old, I crossed paths with this family at the hospital. The boy had many of the same surgeries as Nathaniel, but his were covered by Medicaid, health insurance provided by the US government, because the parents had low or no income. Each time the parents returned, they had more children in tow, which to me said that they were in need of even more help from the government. They had the babies, a translator, the surgeries—all the expenses we had and more. Meanwhile, we ended up living in a basement because Russel’s income wasn’t low enough to qualify for Medicaid, and we still couldn’t afford the medical bills. It didn’t seem right to me that Russel would work so hard and this family would get a “free ride.” I was so mad that I called President Bush’s office! Using a dictionary, I wrote out what I was going to say. To the woman who answered, I recited, “It’s unfair that some people with Medicaid get health care for free. My husband was born in this country, and we can’t afford a simple apartment. We are living in a basement, because we have huge medical expenses. These people don’t even speak English and they get a free ride.” That was all I could see. The woman on the other end of the line listened politely, and said, “I’ll get the word to Mr. President.” I’m not proud that I made that call. Over the years, my view changed. When I look back, I see that no matter what bad luck we had, Russel always managed to land a better job. When we couldn’t afford an apartment, we had generous relatives who welcomed us to their basement. We had friends and colleagues who gathered together to play golf and raise money for Nathaniel’s expenses and myFace. We had the education and resources and connections to stay on our feet, to move forward when we could, and to make our lives better little by little. This family had all of our troubles but none of that support, none of those opportunities. Some people are not given a chance to make the most of their lives. Just like my parents. They weren’t lazy or stupid. Their options were limited. And I learned so much from my mother, a simple woman who never graduated from college. Now when I look back, I thank God that this family was able to get the help they desperately needed. I wouldn’t change anything. Just because I didn’t have what I needed didn’t mean they shouldn’t have it. When I see immigrants, I know that they came here for a better life. I respect that. I moved here from another country to marry the American I loved. I was able to move from state to state so Russel could climb the ladder of success and we could have a better life. Why shouldn’t someone else move from country to country? Who am I to judge who is worthy to thrive in America? After all these years, thankfully, I want everyone to get help. What would happen to a kid with Treacher Collins without any personal or government resources? What would have happened to that sweet baby? The people who don’t have a chance need our help.” **
This story teaches resilience, compassion, and understanding, and it helps children cope with bullies they will encounter in their own lives. Above all, it teaches us that “normal” is so NOT a thing. For all of us, finally, Nathaniel provides this reminder:
“If your body works, be grateful. You don’t have to think about it, spend time on it, work on it. We take it for granted that we’re born with everything. I appreciate breathing. I had to have surgeries so that I didn’t have to think about it. It’s a challenge to appreciate what you already have. You have so much more than you realize.”
*In 2017, another "Wonder," this one a Lionsgate film about Nathaniel and his family, arrived in theaters. It starred Julia Roberts as Magdalena and Owen Wilson as his dad. Nathaniel had been asked to audition to play himself, but he was a bit too camera-shy, so child actor Jacob Tremblay played his role.
**There’s another story, of a completely different kind, by a man who was also born with TC Syndrome, named Jonathan Lancaster. Jonathan's parents abandoned him when he was just 36 hours old. Many years later, he tried to get in touch with them and was strictly rebuffed in a letter they had both signed. Until he was taken in by a loving social worker at 5, his life was endlessly dismal. He still struggles with his appearance, as he was not as fortunate as Nathaniel in being treated by the best surgeons. Yet he, too, offers inspiration:
**There’s another story, of a completely different kind, by a man who was also born with TC Syndrome, named Jonathan Lancaster. Jonathan's parents abandoned him when he was just 36 hours old. Many years later, he tried to get in touch with them and was strictly rebuffed in a letter they had both signed. Until he was taken in by a loving social worker at 5, his life was endlessly dismal. He still struggles with his appearance, as he was not as fortunate as Nathaniel in being treated by the best surgeons. Yet he, too, offers inspiration:
“Lancaster went on to found the Love Me Love My Face Foundation, which supports and raises awareness for those living with craniofacial conditions. He also discusses how the media portrays those with facial differences on his Instagram, praising the depictions in Edward Scissorhands and decrying those in Netflix's The Mother. "It's very common that a movie would use somebody with a visible difference and they will have them playing the bad guy," he has said..."Villains, monsters, evil creatures…It has such a negative impact on you." You can read more about Jono Lancaster at: https://people.com/health/author-with-treacher-collins-syndrome-abandoned-as-baby-full-of-self-love/
Normal: One Kid's Extraordinary Journey has been acclaimed by the following: