Normal: A Mother and Her Beautiful Son

By Magdalena Newman and R. J. Palacio

A moving and “inspiring” memoir from the mother of a child with Treacher Collins syndrome, with a foreword by R.J. Palacio, author of Wonder (Publishers Weekly, starred review).

For Magda Newman, normal was a goal—she wanted her son Nathaniel to be able to play on the playground, swim at the beach, enjoy the moments of childhood that are often taken 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?

 

In this moving memoir, Newman, with the help of her son, tells the story of raising Nathaniel, from the shock she and her husband faced when he was born, to the inspiration of Nathaniel’s own strength and quirky humor. All this while also facing both non-Hodgkins and Hodgkins lymphoma diagnoses of her own. This uplifting story of a family tackling complex and terrifying circumstances with love and resilience is a true testament to Magda and her family, and to families everywhere who quietly but courageously persist.

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Jan 14, 2020
• ISBN: 9781328592354

Magdalena Newman

MAGDALENA NEWMAN lives in Seattle, Washington, with her husband and two sons.  

Book preview

title page

Contents

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Title Page

Contents

Copyright

Foreword by R.J. Palacio, Author of Wonder

A Beautiful Baby Boy

1. Beautiful

2. Congratulations

3. The First Twenty-Eight Days

4. To Eat

5. To Breathe

6. A Different World

7. Not Cut Out For This

8. To Eat, To Speak

9. To Hear

10. Division of Labor

A Normal Childhood

11. A House of Our Own

12. Bad Luck

13. Casseroles and Pity

14. We’ve Got This

15. Teaching and Being Taught

16. The New Me

17. Shallow Water

18. Good Christian Neighbors

19. A Marathon, Not A Sprint

Wonder

20. A Real-Life Auggie

21. The Boy From The Wonder Book

22. Reno

23. Hollywood

The Big One

24. A Unique Form of Torture

25. A Dog Angel

26. Complicated Complications

27. Muscle Memory

28. A New Face

29. Two Wonders Meet

30. Made Whole Again

31. Gift From God

32. A New Normal

33. The Real Wonder Boy

34. Gratitude

Afterword: Swimming Like a Fish

Acknowledgments

About the Author

Connect with HMH

Copyright © 2020 by Magdalena Newman

All rights reserved

For information about permission to reproduce selections from this book, write to [e-mail] or to Permissions, Houghton Mifflin Harcourt Publishing Company, 3 Park Avenue, 19th Floor, New York, New York 10016.

hmhbooks.com

Library of Congress Cataloging-in-Publication Data

Names: Newman, Magdalena M., author. | Liftin, Hilary, author.

Title: Normal : a mother and her beautiful son / Magdalena Newman ; with Hilary Liftin.

Description: Boston ; New York : Houghton Mifflin Harcourt, 2020.

Identifiers: LCCN 2019023276 (print) | LCCN 2019023277 (ebook) | ISBN 9781328593122 (hardback) | ISBN 9780358172260 | ISBN 9780358306702 | ISBN 9781328592354 (ebook)

Subjects: LCSH: Facial bones—Abnormalities—Biography. | Newman, Nathaniel. | Newman, Magdalena M. | Genetic disorders—Biography. | Mothers and sons. | Families—Washington (State)—Seattle. | Seattle (Wash.)—Biography.

Classification: LCC QM695.F32 N49 2020b (print) |

LCC QM695.F32 (ebook) | DDC 611/.716—dc23

LC record available at https://lccn.loc.gov/2019023276

LC ebook record available at https://lccn.loc.gov/2019023277

Cover design by Martha Kennedy

Cover photo courtesy of the author

Author photo by Stephanie Rubyor Photography

v3.0220

foreword by r.j. palacio, author of wonder

I first met Magda over lunch on Carmine Street, near my office. Wonder had just come out the month before. My book about a boy with a facial difference and the community around him was holding its own in the marketplace, sales-wise, which was a bit of a surprise to everyone—especially me—given that it was a debut book by a first-time author. Moreover, friends confessed that they themselves had put off reading it because they assumed it would be a downer. So when Wonder started getting out in the world, finding an audience, it felt a little miraculous to me. More miraculous, though, were the emails and letters I started receiving from people within the craniofacial community. Children who looked like Auggie, or had other types of facial syndromes, their parents and siblings and grandparents, their doctors and nurses, started writing to me about the positive impact the book was having on their lives. 

Of all of these emails, the one I remember the most vividly is the email that came from Russel Newman via a nurse who we both knew at the NYU Medical Center. I remember it well because he sent me a picture of Nathaniel, and the moment I saw Nathaniel’s face, I thought to myself: That is exactly how I pictured Auggie Pullman. 

In those days, there weren’t enough people requesting to meet me that I couldn’t comply, quite happily, with their request. So when Russel asked to meet me for lunch, I said sure!

I was already sitting in the restaurant when they arrived. The first thing I could not help but note was how beautiful Magda was. Treacher Collins is often hereditary, and by then I’d met many families in which a mom or dad had discovered they themselves had a mild form of TCS after the birth of a child with a more severe form of it. (One dad once joked, I just thought I was funny-looking, that’s all!) But neither Russel nor Magda had any trace of the syndrome and, in fact, looked like they had walked out of the pages of a magazine. The second thing I noted was that Magda was walking with the help of a walker, which seemed at odds with her very athletic frame. I assumed it was a sports injury. It was not.

In the course of that lunch, which was one of the most memorable in my life, I came to learn all about the Newman family. I learned, while both laughing and crying, about the journey that had brought them to this moment, stories that you are about to read. I learned about their courtship, and the birth of their first son, Nathaniel, whose Treacher Collins syndrome was a complete surprise to them, discovered on the day he was born. I learned what it was like for them as they took in the enormity of Nathaniel’s condition that first night of his life, having had no time to prepare or research, as they dealt with both the immediate challenges of having a newborn whose odds of surviving the night were slim, and the long-term challenges that his physical condition would bring. I learned about the many surgeries Nathaniel went through, and about the toll this often took on their family—and on their younger son, Jacob, especially—and the heartbreak and stress it brought . . . but also about the unexpected joys. I learned that they were ordinary people who were dealing, as best they could, with the extraordinary lives they had been given. I learned that they were funny and warm and incredibly kind, and that Russel cried easily and Magda smiled easily.

I feel so blessed to be friends with Magda. I feel like I am a better person by knowing her. I am stronger. I am wiser. To say that she is an inspiration is not enough, because it’s so much more than that. She is everything I would hope to be if ever faced with the challenges and choices she has had to deal with in life. She is the measure against which I hold myself. 

I am so glad she is sharing her story with the world, that others might learn what I’ve learned from having seen this unsinkable Molly Brown rise again and again whenever life knocks her down: that, no matter what, you just get back up. 

Like the wise words in Natalie Merchant’s song Wonder, Magda is that person who, with love, with patience, and with faith will make her way. And blaze a path for the rest of us while doing it. 

A normal life. A normal family.

What is normal?

Maybe normal is what is most common.

Maybe normal is what is least noticeable.

Maybe normal is a judgment coming from someone else.

Maybe normal is your own imagined ideal.

Where is the line between normal and not-normal?

Who gets to decide?

part one

a beautiful baby boy

1. beautiful

Nathaniel: In summer of 2017 when we got to Beaver Lake, I ran straight into the water. I was wearing a big Spider-Man floaty—but only because it was a very deep lake. I paddled out as far as I could as fast as I could, singing to myself, Don’t stop believing you can do this. When my parents tell this story, it sounds like I was having a deep, spiritual moment, but in truth I was joking around, trying to swim to my mom, and wondering how far I could go.

When I got to what felt like the middle of the lake, I floated on my back, spreading out my arms and legs like a starfish, looking up at the blue sky. I was alone, truly alone. Nobody watching would have noticed me and thought, Hey, that kid is alone. After all, there were plenty of other people in the lake and I knew three of them. My mother was on a paddleboard. My brother and father were somewhere behind me. But, as far as I was concerned, I was alone, and today was not an ordinary day.

We’ve gone swimming as a family plenty of times. My dad used to be a lifeguard, so he loves to swim. I’ve watched him throw my brother, Jacob, in various pools and bodies of water for as long as I can remember. And countless times Jacob has cannonballed into the water right near me just to irritate my mother. Whenever we went to a pool or a lake, my mother, who never really learned to swim right, hovered near me in the shallow end, keeping the coast clear of splashy toddlers and annoying younger brothers. Every single time I went swimming, up until this day, I had to wear water wings on my hands and feet and a life preserver around my stomach to keep my head as far above the surface as possible. Even doggy-paddling would have put my neck dangerously close to the water. Water, in this situation, was my kryptonite.

But on this day, for the first time ever, the embarrassing flotation devices were gone. My mother was giving me space. For a good distance, all around me, there was only the flat lake. It was amazing and ordinary at the same time.

I was thirteen years old, and I had never been able to swim by myself. I had put my head under water a few times, just for a few seconds, but that was completely against the doctors’ orders. Now, sixty-seven surgeries later, I could finally swim like normal kids, without the flotation devices bobbling around me, without an adult ready to help me if something went wrong.

If you looked at it from the outside, I had worked really hard for this moment: having operations to help me breathe, recovering, getting used to a new normal, then doing the whole thing all over again many times. But the surgeries didn’t feel like achievements I deserved applause for—I’d been having surgeries ever since I was born. What I felt in Beaver Lake wasn’t a sense of accomplishment, but a new level of independence. Like a first ride on the school bus. A sleepover. What I imagine it will feel like when I can finally drive a car. I’d wanted to swim by myself for so long it was hard to believe it was actually real. Though my brain was still processing the change, the water was energizing. The sky was wide open. The whole world stretched around me. I felt free.

It is hard to describe how I felt watching my son swim for the first time or what it represented for our family. Nathaniel had never been alone. It may not seem like such a big deal—thirteen is still young—but before that day at Beaver Lake, Nathaniel had never been in water more than a few feet from an adult, not in his entire life, and getting him there had been my full-time job.

Before Nathaniel was born, his father and I were a typical young couple. Russel and I lived in a small apartment on the Upper East Side of Manhattan until I got pregnant and we moved across the river to Hoboken, New Jersey, where you could get more space—how perfectly normal. At the time, I was writing my thesis to earn my masters in music theory and composition at a music academy in Gdansk, Poland, where I was born. To help make ends meet, I also worked at a friend’s boutique, selling jeans. Russel was just getting started as an insurance underwriter at Chubb. We had decent health coverage, and I had a good doctor. I was twenty-four and healthy.

There was no reason to worry, no reason to do any special tests. At my six-month sonogram the doctor said, His nose looks big, and was surprised that my amniotic fluid seemed to be building up, but assured us there was no reason for real concern.

I went into labor right on time and was pretty far along when Russel and I arrived at the hospital. My doctor smiled at me and said, Do you want to hold your baby when he’s born?

Of course I do! Yes! I replied.

In addition to Russel, there were a couple nurses in the room and, because it was a teaching hospital, there were also some students. Sunshine poured through the windows, brightening the delivery room after a long night of labor, and the sheets below me felt crisp and sterile. This was finally happening. A baby! As the doctor delivered Nathaniel, Russel stood beside him, wearing scrubs and cheering me on, saying, Oh my God, you’ve got this! I see the head! He’s got dark hair. Then, all of a sudden, a mask dropped over Russel’s excited face. His mouth opened in a silent wail, his eyes got huge, and he went white. He grabbed his hair and started pulling it. At the same time, a horrible smell entered the room. I waited to hear the cry of a newborn but instead, I saw every single person’s face change to the same mask of pure shock.

They hurried a bundle off to a little alcove connected to the delivery room. Russel followed.

What’s going on? I asked. Where’s my baby?

Then I heard Russel wailing, Oh God, oh my God!

Is the baby alive? I asked the suddenly hushed room. There was a quiet rush of activity off to the side where I could barely see them. Nobody answered me. Is the baby alive? I was shaking now, confused and terrified. What was happening? The silent baby, that dreadful smell, Russel’s howls. My doctor was still tending to me, finishing up his work with his head down, but otherwise nobody was paying attention to me. Nobody would even look at me.

Finally my doctor said, Yes, he’s alive.

Nobody offered to let me hold him or see him. Nothing. They seemed scared to show me my son. From the corner of my eye I could see into the room where they were cleaning him, and when they lifted him up for a moment, I caught a glimpse of a cone-shaped head and eyes that looked big and swollen. It had been a rough birth, I told myself, maybe that was all. . . . I caught a glimpse of one ear. It didn’t look like a normal ear. Then I saw his profile. It wasn’t just his ear—something was very wrong.

Did I deliver an alien? I asked my doctor. Is that a child? What happened? What happened?

He has issues. Let’s see if he’s stable.

Five minutes passed. The room stayed strangely quiet. The baby still wasn’t crying. I had the sense that they were working on him, but I wasn’t even sure he was still alive.

Lying on the bed in the delivery room, the only thing I could think to do was call my mother, who was waiting for news of our baby boy. I asked for a phone and someone gave me one. My mother answered. I could picture her back in our house in Sanok, a small town in southeast Poland, the last real town in the Bieszczady Mountains before civilization fades to tiny villages. I knew exactly where she had to be standing, using the only phone we’d ever had, still attached to the living room wall in the house where I’d grown up. The room was full of generic Communist furniture, crowded with tchotchkes like glass fish and tiny shot glasses, my father’s sculptures, and religious icons—treasures that told a simple story of faith and love and family.

I don’t know what happened, Mom, but I think I delivered an alien.

She asked what I was talking about.

Mom, it doesn’t have an ear. I’m a musician. How can I have a baby with no ear? What kind of terrible person calls her own baby an alien, an it? All I can say is that I was not myself.

Without missing a beat, my mother said that as long as the baby had two arms, two legs, and a head, everything would be okay. Those were the only things that mattered. It helped a little, somehow, to hear her soothing, maternal tones. I tried to breathe. I still hadn’t seen my son, and now he was no longer in the room.

We don’t know what’s wrong, but the baby’s face is severely deformed, Russel told me.

Deformed is a word that doctors use, though many people dislike it. But at that point we were still oblivious to such details. I was in a recovery room—at least I thought that was where I was—but I wasn’t sure whether what was happening was real or a nightmare. A fog of emotions and medication brought me in and out of consciousness; I was shaking, fainting, delirious. Had I given birth or imagined it? Was what I’d seen real? No, I never had the baby I’d had a glimpse of, a baby with a condition I’d never heard of, never seen, never even known to pray it wouldn’t be part of my story. I’d read What to Expect When You’re Expecting twice, once in English and once in Polish, and I was quite certain there hadn’t been anything to prepare me for this. No, I was still pregnant and everything was fine. Somebody would wake me up from this dream.

This invention. This nightmare.

At last a team of doctors, all with unfamiliar faces, came to address me. They handed me a book from the 1970s open to a dated picture of a person with droopy eyes, a severely small jaw, and a distinctive bird-like look.

Your son has Treacher Collins syndrome. It’s a congenital disorder. He has craniofacial deformities—his ears, eye sockets, cheekbones, jawbone—they haven’t formed normally, one of the doctors explained.

I was devastated. I didn’t want my child to look like this picture. I didn’t ask if he was going to be okay, if he would have a normal life span, or if he would be mentally disabled. The outside was enough to worry about. It was too much already.

Another doctor said, He will be physically challenged. He has almost no jaw. He can’t hear. He’s having trouble breathing.

Russel reappeared from checking on the baby. Russel, who was always calm, who always knew what to do, who was the guy you wanted in an emergency, had a look of panic in his eyes that I’d never seen before. He put a hand on my shoulder, gripping me tightly, and said, It’s severe. It’s real.

Night passed into morning. My in-laws arrived: Russel’s parents and his brothers and their wives. But instead of it being a happy moment, everyone who visited was crying as though someone had died. The baby was alive, with a future ahead of him, but none of us could imagine what that future looked like. It certainly wasn’t going to be what any of us had expected. Our distress was so loud that they moved us to a private area. I think we were scaring the other expectant and new parents.

It’s hard to say this now, but I had bad thoughts. It crossed my mind that maybe it would be better if the baby died. How could he live like this? Live through this? Could I hold him? Could I love him? How could I take care of him? Why was this happening to me? Why did God punish me?

Most of that first day is a blur. I remember Russel on the chair next to my bed. He is unshaven, dark circles under his eyes, his hair a mess. He shakes his head, crying. I am only half-present, drifting into oblivion only to open my eyes to the same nightmare. When I come to, Russel asks me if I want to go see him.

I say no. I’m not ready. I’m scared.

He’s breathing, Russel tells me. He’s with the preemies, and they gave him a tiny preemie bassinette. He’s so long that his legs are sticking out of it. He’s fighting for every breath.

The TV was on in the recovery room, a strange tether to the outside world, a world that continued forward despite our tortured confusion. As Russel wept, I prayed. This is the worst day of my life. Give me strength. Give me a sign. Give me something to hold on to.

It was February 8, 2004, and the Grammys were on. Christina Aguilera came onscreen. She walked onto an empty, round platform, dressed simply in a dark suit, with bare feet and dark hair. She sang: We’re beautiful in every single way. Yes, words won’t bring us down . . .

Russel and I stared at each other in absolute amazement. It was like she was speaking directly to us. Her words didn’t solve any of Nathaniel’s medical issues, but they answered all the questions and fears that were circling in my head. In that moment, I felt something physically change—a weird strength rose in me. It was almost like I felt God’s presence. He had given me a sign. No matter how my child looked, he would be beautiful. I had been chosen to be his mother. I would love him—I already did. I always had.

Right then, as we listened to the song, I promised God that I would do everything I possibly could to treat our child as a beautiful soul, a beautiful spirit, a beautiful human.

Russel was holding my hand. He said, Magda, this is going to be our beautiful child no matter what happens. He’s going to change the world one day.

We both cried, though my tears were different now, no longer tears of fear but of possibility. I was going to turn this situation around and create the best possible outcome. Every parent hopes and believes his child will change the world. Russel and I had the same hope, except that before Nathaniel started making the world a better place, we needed him to live.

I got out of the bed, put on a white robe from Victoria’s Secret that Russel had brought me—a robe that had been meant to welcome a healthy infant, a leftover gift from another lifetime. That didn’t matter anymore. I didn’t look back at the plans we’d made in blissful ignorance. We were on a new path. We walked to the nursery where our baby was resting alongside the preemies. I was ready for him.

We named our son Nathaniel. Later, at his bris, when it came time to pick a Hebrew name for him, our rabbi said, You don’t have to choose another name. ‘Nathaniel’ is already a Hebrew name. It means ‘gift from God.’

It would be a while before I reached in the pocket of an old coat and found a little notebook that I had once used for addresses, train schedules, recipes, and odd notes. Written in it was a list that Russel and I had come up with several years before, when we first met. Sitting at a cafe in Prague, fantasizing about our future family, we had scribbled down a few baby names, and for a boy, we had written Nathaniel and Jakub (the Polish form of Jacob).

Long before our special boy was born, we had somehow anticipated our gift from God.

Nathaniel: When I was born, 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 because my cheekbones were behind my nose, blocking it. I couldn’t eat because my jaw was small and out of alignment. I could barely hear because I didn’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