Magdalena Newman’s Normal: One Kid’s Extraordinary Journey, beautifully details her oldest son Nathaniel’s experience with Treacher Collins syndrome, a congenital disorder that causes craniofacial deformities. At birth, Nathaniel’s ears, eyes, cheekbones, and jawbone were not properly formed, necessitating hearing aids, a gastrointestinal tube, a tracheostomy tube to assist breathing, and over sixty surgeries the first fifteen years of his life. Newman, who had been a professional concert pianist in her native Poland, was totally unprepared to care for a baby with such enormous medical needs, Yet she immediately rose to the challenge, becoming laser focused on ensuring Nathaniel could lead a normal life. Magdalena and her husband Russel’s fierce advocacy serve as a guiding light for their family and community, navigating through Nathaniel’s complicated medical procedures (as well her own bouts with both non-Hodgkins and Hodgkins lymphoma diagnoses) with grace and dignity. Newman charts her family’s journey with raw honesty, while Nathaniel’s perspective pops up throughout the memoir, emerging as a clever and funny teenager with his wry commentary. Magdalena and Nathaniel’s journey take them to unexpected places, including a friendship with R.J. Palacio, who saw a picture of Nathaniel while doing research for Wonder. Normal has been warmly received by critics, with Publishers Weekly noting, “Readers looking for an inspiring story about the power of the human spirit will find one here.” Newman spoke with Brendan Dowling via telephone on January 10th, 2020. Photo courtesy of Stephanie Rubyor.
The book begins with Nathaniel swimming by himself for the first time in Beaver Lake at age thirteen. Why did you choose that moment to begin your book?
It seems like such a not big deal for most, right? To be able to see your thirteen year old kid swim without you hovering over him. That’s why I wanted to start from that simple picture of him swimming: “How perfectly normal.” But it took so much for us to get to that moment, so that’s why I had to start from there. We weren’t sure where to start but I felt that we titled the book “normal,” so how perfect for us to begin with a normal moment.
Why was Normal the perfect title for your book?
It’s interesting that you ask that, because we actually didn’t come up with the title for quite a bit. I knew I wanted to title the book with one word, so it sounded simple. We thought about it and I said to Hilary—Hilary is the person who helped me write the books—”I want to get a simple title, a one-word title. I just don’t know what it should be.” And she said, “How about ‘Normal?’ We’ve been talking for hours and all you say is, ‘Normal, normal, I want our lives to be normal.’” It was like, “Oh my gosh, that’s brilliant! Yes, that’s the title!” For me, since the beginning, since literally the moment Nathaniel came home, normal was a goal for me. What normal meant for me is to allow Nathaniel to have a normal childhood, because there wasn’t a book available about how to raise a child with such complicated health issues, so I wanted to give him the milestones that you read in a book. “Okay, at age three months the baby should have tummy time to strengthen the spine. At age six months the teeth start to grow, so you have to start introducing solid foods for the baby. Then crawling, and then walking.” Those are those tiny little steps that need to happen for every baby’s development. I basically compared Nathaniel to all those little steps and to all of those little babies. He had a G tube and then he had a trach. It was harder but I still made it work. I figured out the ways, like tying blankets underneath his belly [so he could have tummy time]. For me the devastating part was him not being able to eat by mouth. My mom came to visit and she said, “Let’s try to give him applesauce.” We did and his brain just didn’t know what to do with it. Nathaniel was not a typical baby, but all of those medical issues made him not a typical baby.
In the book, you’re very honest about some of the physiological reactions you had when you saw a child with Treacher Collins for the first time. Why was that important to share those reactions, even if they might paint you in an unflattering light?
When I decided to write this memoir than I wanted to tell the truth. I wanted to be transparent. I’m ashamed of that now, but also I wasn’t prepared for Nathaniel and I wasn’t prepared to be in this community, to have a child with cranio-facial differences. I reacted the way most people would. Now people are more accepting, but before Wonder, I’d seen children with cleft palettes or children with Downs Syndrome where there’s a distinctive look. But for me, seeing Nathaniel, I reacted the way most people did. I tried to hide it, but honestly I have to be transparent. There are just some things we can’t control. I didn’t react with such a crazy shock, but I definitely remember it was a hard time for me to breathe for a second.
What has been your strategy of dealing with people’s rude reactions to Nathaniel’s craniofacial differences?
To be quite honest, in the very beginning when he was a baby, I remember walking down Manhattan with the stroller. If there was sunshine I would have the stroller open—this is why I kind of started hiding Nathaniel, but I was still dealing with the medical issues that Treacher Collins brought on Nathaniel, kind of pitying myself. People would approach me—“Oh you have a new baby!”—and want to hug you and congratulate you as a new mom, I think that happens to a lot of moms. Then when they saw Nathaniel, there was that shock on their face, and then they would hug me and say, “Oh my gosh, I’m so sorry. I’m going to pray for you.” And that was strangers! That was the strangers’ reaction. That was when I knew Nathaniel would be okay. I just tried to avoid that pity for Nathaniel and I tried to avoid that pity for myself. I would cover the stroller and say, “Yeah, he’s sleeping.” I just hate pity. Pity is not the way I want to live my life and I didn’t want Nathaniel to live his life with that pity. But I know people were trying to be nice but just didn’t know what to say. They would say, “I’m going to pray for you.” I’d hear that when I was sick too. Which is great, every prayer helps (laughs). But you know those moments right? It was very interesting. I don’t think it happens now. I think Wonder really changed the world, but that was all before Wonder came out.
Can you talk about the effect Wonder had on your lives?
Oh my gosh, huge. Huge. For example, when Nathaniel was a baby—I realize now that I didn’t fully answer your question about the stares at the playground. Surprisingly, they did not affect me as much as they affected my husband. For me, I always knew we had bigger fish to fry than just the stares. Just to get basic life functions for Nathaniel, that was my big deal. The stares came along, I told Nathaniel not to pay attention to that. It was upsetting, of course. We were disappointed many times—not even disappointed in kids, but disappointed in parents. We’ve learned that every kid stares. Nathaniel would learn eventually to walk up to kids and say, “Hi, I’m Nathaniel. Want to play?” And kids would! If the stares came along with the comments, cruel comments—”Oh you’re scary, you look like a monster.” Nathaniel would go to the playground, because I wanted him to have a normal childhood. I wasn’t going to shelter Nathaniel and keep him in the house. We went in public to playgrounds, even when he had a trach and the trach fell off a few times—oops, we’d put it back in. I had to have a pump on me. All of those problems were still there. I wanted Nathaniel to run and go down the slide and be pushed around the playground, because that’s just a milestone for every kid. But I noticed on a few occasions that kids would create a group and they would play catch or something and then run away from Nathaniel. I would notice that he would be alone and that there was a group of kids whispering and running away from him. Sometimes he was aware and sometimes I thought he wasn’t aware, because he always had a train in his hands and he would play with his train. I’m not sure how unaware he was now when I look back on it. I think he was fully aware that the kids were just running away from him. That was not okay with me. That’s when we would find a parent and say, “Hey, this is a teaching moment. How about you talk to us and have your child talk to Nathaniel?” Some parents would say, “Well, kids are kids and they’re going to be kids.” My husband would say, “No, that’s not okay. Don’t make an excuse. It’s hurting my son.” Some parents would say, “I’m so sorry. Let’s talk about what’s going on.” Some parents would literally scoop up their kid and leave the playground.
After Wonder, Nathaniel was already in school. What was so interesting, kids would come up to him and say, “You look like that kid from Wonder.” So that was the shift. They would not run away from Nathaniel, they would not say something cruel or rude. They would say, “What’s your name?” They would make conversation, there was actually a kind of interest. For us, that’s what we saw on an everyday basis.
Before he started school, we wrote a letter of introduction to the parents, just to make sure that they talked to their children, because everything about Nathaniel was a teaching opportunity to learn about differences. He looked different, he had hearing aids, he had a trach, and I was also worried the kids would pull the trach out because it looked like a necklace. Little kids—I’m talking pre-school and kindergarten—are curious. The fact that he looked different was one thing, but the other thing was also the medical issues that came along with it. If you pull out the trach, Nathaniel’s choking! I had a phone call once from the nurse, “Hey, the trach got dislodged, can you come to the school? I can’t get it back in.” It was serious. So I wanted to make sure they told their kids, “Do not touch.” As Nathaniel got older we would tweak the letter a little bit so it would be better suited for older kids. But then Wonder did the job of the letter. We eventually didn’t have to write anything, we’d just say, “Hi, this is Nathaniel, he’s one of many Augies.” Because there’s not just one Auggie. Auggie is a fictional character, but most kids with craniofacial differences—and I’m not even talking about Treacher Collins, any craniofacial differences— can relate to Augie. That’s the beauty of Wonder. It just created that kindness momentum and explained we are all different.
In the book, you write “The person I was when Nathaniel was born would be astounded by the person I am now.” Can you talk about what you mean by that?
I was naïve when Nathaniel was born. I wasn’t educated on this subject. I reacted how I reacted: as a human, as a young person who had no idea what’s coming. My first reaction on seeing Nathaniel’s face was in pure shock, It took me a day before I was ready to see Nathaniel, because I thought I was dreaming. I thought my life shattered in pieces. Back then I didn’t even know how severe his life functions were going to be affected by Treacher Collins. I was devastated. But now, I am so happy that I had Nathaniel, because my whole world changed. I am a better person. I accept the differences. I learned so much about how much is out there, how many people are out there, how much we take for granted for everything we have. We are born with the ability to do anything. But there are people who are born and they can’t breathe. They have to have surgeries to be able to eat, smell, see, hear, talk. These are all the basic life functions. Having Nathaniel taught me how to appreciate everything we have. It’s not just about the face. The face is the least of the problems. In the beginning, the biggest issue for me was that face. I admit, it’s terrible, I’m changed. I appreciate everything I have. I promised God that I’m going to raise Nathaniel as this beautiful spirit and human, so I tried to do everything for him to grow up and not be sad. I didn’t want Treacher Collns to define who Nathaniel was as a person. I wanted him to love himself, I wanted him to accept himself, and love living. And I feel like I’ve accomplished that so far. He’s a happy kid. We had a radio interview recently and he said to the interviewer, “You know what? I love my face. I didn’t want the surgeries to change who I am, because I love the way I look. That’s all I know. If the surgeries are going to improve my life functions, of course I’m going to have them, but I don’t want to have unnecessary surgeries.” I sat next to him and I had an a-ha moment, because I’m thinking, “If you go in front of the mirror and see yourself, and then Monday your Mom and Dad say, ‘You know what? We’ve decided to change the way you look!’ I don’t want to change the way I look. That’s what I’m used to, that’s me.” We talk about identity, this is who you are, this is your face. I’m very happy that Nathaniel loves the way he looks, because that’s him!