Liftin Hilary - Normal: a mother and her beautiful son

Copyright 2020 by Magdalena Newman

All rights reserved

For information about permission to reproduce selections from this book, write to 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 bonesAbnormalitiesBiography. | Newman, Nathaniel. | Newman, Magdalena M. | Genetic disordersBiography. | Mothers and sons. | FamiliesWashington (State)Seattle. | Seattle (Wash.)Biography.

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

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

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

v2.1219

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 everyoneespecially megiven 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 Nathaniels face, I thought to myself: That is exactly how I pictured Auggie Pullman.

In those days, there werent enough people requesting to meet me that I couldnt 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 Id 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, thats 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 Nathaniels 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 familyand on their younger son, Jacob, especiallyand 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 its 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 Ive 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 Merchants 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?

Nathaniel: In summer of 2017 when we got to Beaver Lake, I ran straight into the water. I was wearing a big Spider-Man floatybut only because it was a very deep lake. I paddled out as far as I could as fast as I could, singing to myself, Dont 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.

Weve gone swimming as a family plenty of times. My dad used to be a lifeguard, so he loves to swim. Ive 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.