by Magdalena & Nathaniel Newman, with Hilary Liftin
Illustrated by Neil Swaab
Libby eBook 500 "pages" . . .
Published: 2020
Genre: Non-fiction, Memoir
I saw this title working at Mackin this summer and was intrigued, so snapped a photo. (No reading books at work - darn!) I'm really glad I followed through and got a copy, though I didn't realize it was a "young reader's edition" until I started this blog entry. No matter, it's a worthwhile read!
Alternating between the mom (Magda) and the teen (Nathaniel), his life as a baby then child then teen with Treacher Collins Syndrome is chronicled in a very accessible way. Swaab's cartoons at the start of sections are a nice complement to the mother and son "voices" in their writing.
I hadn't realized that part of the reason R.J. Palacio wrote Wonder (an amazing book!) is because she was upset over her reaction to seeing a child with Treacher Collins. She wanted better of herself, so she did some research and wrote her novel. The fact that she connected with the Newman family and met with Nathaniel is so cool. The author inviting Nathaniel to come with her on some author talks is even more cool! I love that Nathaniel can see why people call him the "real life Wonder kid" while he insists that he is very, very different from Auggie - that is just the icing on the cool cake.
Part of what I loved about this book was learning about Magda. She is from Poland and shares "flashbacks" of her own childhood memories and experiences. She's authentic about her fears and struggles, but is clearly an amazing mom. I had to look up the entire family online to learn more about her and her husband Russel, as well as Nathaniel and his little brother Jacob. Wow. What a family!
I also liked Nathaniel's openness about his thoughts and feelings. Going through dozens of surgeries as a child sounds horrific, but he has a no-nonsense attitude about it all. He sounds like an incredible person. This book is a good reminder that "normal" is such a bizarre notion. Are any of us normal?
In the section "Draconian Does Not Mean Fun," Magda writes:
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.
It's astounding to me that despite all the challenges (feeding tube, breathing trach, etc.), she and her husband truly worked to let him have a happy carefree childhood. Wow!
In the section "Soup," Nathaniel writes:
It helped me understand, from the time I was really little, that there are many different ways to experience the world. I had my experience, she had hers, and all over the world children are having their own. There is no one way that is the right or normal way to grow up.
He's referring to his mom's stories about growing up in Poland. Coming from a different country (and a different decade), her childhood was of course going to be different from his. I love that he grew up with such a healthy perspective. I think most Americans (myself included) have a hard time thinking about any other perspective culturally than our own. Of course, there is diversity in the United States! But I don't think many of us contemplate what it's like to grow up in a completely different culture. The notion of what "normal" is continues throughout this book.
In the section "A 'Real-Life' Auggie," Magda writes:
How silly and embarrassing this is, but I admit it. I admit it because it is important for all of us to acknowledge that, no matter how kind and fair we want to be, sometimes we still have reactions that we can't control. Even me.
She is talking about her conversation with author Palacio, who said she had rushed her children out of an ice cream parlor when they saw a child with a face very seriously impacted by Treacher Collins. Newman knew that child and had also had a very strong reaction upon meeting her! Sometimes when I most think I am "above" rudeness or meanness, my human nature proves me wrong. I want very much to be kind and compassionate, demonstrating the love of Christ in my life. But I fall short every day. There's that grace of God that I need so badly!
In the same section of the book, Magda says about Palacio:
She was humble, honest, and pure. She herself wanted to change, and by writing Wonder she did something to help millions of people change. It was beautiful.
To think that by writing a book, Palacio changed the way people who read it responded to people with visible differences is so powerful! Think about the kids who've read Wonder and have then thought differently about how to interact with other children who are different. Certainly, bullying is still a problem (and always will be with humanity), but to make a significant difference in people's perceptions and behavior is an amazing feat. (And if you haven't read Wonder, make the time to do so!) I haven't seen the movie yet, and am not sure I want to.
In the section "Frustrations," Nathaniel writes about being at the Ronald McDonald House to recover from a major surgery. I'm not going to replicate all the text here, but I love that his favorite part was the presence of service dogs!
All the dogs were calm and collected, the way normal service dogs are supposed to be. But there was one . . . that acted completely unlike a service dog with me. When he saw me in my cage, he did not sit quietly. He came over to me and acted worried. He tried to lick me through the cage. . . . The other dogs sat quietly, waiting to be petted, but that dog wanted to be in my lap . . .
The "cage" was a metal contraption that was attached to Nathaniel's skull and body. Again, I love Magda's mom perspective on everything, but I also love Nathaniel's kid perspective! Dogs are a favorite part of his life.
In the section "The First Lightning Strike," Magda shares about getting a cancer diagnosis:
Crying hysterically, I grabbed his shoulders and said, 'Thank you.' I know it sounds funny that hearing I had cancer was good news, but it meant I wasn't crazy.
Ugh! She could probably write another book just about her experiences with health care in America! I love that her husband apologized profusely for doubting that there was anything really wrong with her when her symptoms got so bad, but I can't believe she had to deal with so many doctors before her diagnosis!
In "Wonder Comes to Life," Nathaniel writes about meeting the cast of the movie, including young Jacob Tremblay who plays Auggie. Being on set and watching the work involved convinced Nathaniel that he would not have been able to do it!
The final movie is only two hours long. But making it takes months. What I learned from meeting Jacob was that it's not as easy as people think. Those actors are endurance athletes.
That was an interesting perspective! I don't think of actors as working hard . . . because I only see the finished result!
In "Made Whole Again," Nathaniel writes:
Before, I had three ways of breathing - through my nose, my mouth, and my trach. Now I only had two, like everyone else. If felt like a loss. How could I feel comfortable eating and sleeping without an open trach?
When the trach was all he had known since infancy, the surgery to allow him to breathe "normally" felt abnormal. I love how his mom handled his request to have the trach put back in.
In "Gratitude," Magda again shares her honest perspective:
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."
She acknowledges that she doesn't want the poorer family to NOT get care for their child, but the injustice still stands. I am personally horrified that the United States has not yet figured out how to have health care for all Americans without bankruptcy being a reality for so many people. We spend more per capita on health care than any other country but have much poorer health care than most industrialized nations! It's awful! (See The Commonwealth Fund)
Just because I don't know how long that link will last and I am passionate about this topic, here's a snip:
Also in "Gratitude," Magda writes:
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.
She acknowledges that marrying an American and having opportunities here is something she appreciates and wouldn't want to deny to others.
In "Gratitude," Nathaniel writes:
Treacher Collins doesn't define me. What defines us all is how we face the world we've been given. I'm Nathaniel. I'm not normal, and neither are you.
What a great guy!
This is a fantastic book and I highly recommend it!
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