Magdalena Newman - Normal: One Kids Extraordinary Journey

Text copyright 2020 by Magdalena and Nathaniel Newman

Illustrations copyright 2020 by Neil Swaab

Illustrations on 2020 by Ellen Duda

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles and reviews. For information address HarperCollins Childrens Books, a division of HarperCollins Publishers, 195 Broadway, New York, NY 10007.

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Cover illustrations 2020 by Ellen Duda

Cover design by Celeste Knudsen

The Library of Congress has cataloged the hardcover edition as follows:

Names: Newman, Magdalena M., author. | Newman, Nathaniel, author. | Liftin, Hilary, author. | Swaab, Neil, illustrator.

Title: Normal / by Magdalena M. and Nathaniel Newman, with Hilary Liftin ; illustrated by Neil Swaab. Description: Young Readers edition. | Boston ; New York : Houghton Mifflin Harcourt, [2020] | Audience: Ages 10+ | Audience: Grades 7 to 8. | Identifiers: LCCN 2019006110 (print) | LCCN 2019013401 (ebook)
Subjects: LCSH: Facial bones AbnormalitiesBiographyJuvenile literature. | Newman, NathanielJuvenile literature. | Newman, Magdalena M.Juvenile literature. | Treacher Collins syndromeBiographyJuvenile literature. | Genetic disordersBiographyJuvenile literature. | Mothers and sonsJuvenile literature. | FamiliesWashington (State)SeattleJuvenile literature. | Seattle (Wash.)BiographyJuvenile literature.

Classification: LCC QM695.F32 (ebook) | LCC QM695.F32 N49 2020 (print) | DDC 617.5/20092dc23

LC record available at https://lccn.loc.gov/2019006110

ISBN: 978-1-328-63183-1 hardcover
ISBN: 978-0-358-56979-4 paperback

eISBN 978-0-358-16441-8
v2.1021

In the 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 that 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. And 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 water as possible. Even to doggy paddle would have put my neck dangerously close to the surface of the water. Water, in this situation, was my kryptonite.

But on this day, for the first time ever, the embarrassing water wings were gone. My mother was giving me space. For a good distance, all around me, there was only water. 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 numerous 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 momenthaving operations to help me breathe, recovering from the surgery, getting used to a new normal, then doing the whole thing all over again many timesbut surgeries didnt feel like something I deserved applause for achieving. Id been having surgeries ever since I was born. What I felt in Beaver Lake wasnt a sense of accomplishment. It felt more like, after wanting to do something for a long while, Id finally been allowed to do it without my parents for the first time. A ride on the school bus. A sleepover. What I imagine it will feel like when I can finally drive a car. Id wanted to swim by myself for so long, it was hard to believe it was actually real. My brain was still processing the change. But the water was energizing. The sky was wide open. The whole world stretched around me. I felt free.

About a year and a half before I went swimming in Beaver Lake, when I was eleven, my parents had taken me to meet with a new doctor at Seattle Childrens Hospital. Another doctors appointment, woo-hoo. But my parents were very excited to hear about a new surgery this guy, Dr. Hopper, was doing.

Starting before I was born, my face didnt form properly, so doctors had been trying to help me function for my entire life. I could hardly breathe. My nose didnt 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 couldnt smell or breathe because extra bones were behind my nose, blocking it. I couldnt eat because my jaw was small and out of alignment. I could barely hear because I didnt have ears to capture the sound and deliver it to my brain. I didnt have bottom eyelids, which meant I couldnt close my eyes fully, and my vision wasnt great, although that was just run-of-the-mill bad luck. Bonus! The only good news on my five senses report card was that I could toucheverything about me from the neck down worked just fine. And my brain was perfectly fine too, maybe even a little bit awesome, if I do say so myself, which would help me deal with all the other problems.

I grew up knowing that I was born with a syndrome called Treacher Collins and that it made me different, but I didnt feel different. I felt like myself, the only self Id ever known. Other kids werent fed through a tube in their stomach for the first year and a half of their lives. Other kids didnt wear hearing aids. Other kids didnt have a hole in their neck to help them to breathe. Other kids didnt grow up having doctors appointments instead of soccer practice and surgeries instead of vacations. Other kids didnt have a nurse with them at school. Other kids could shower, swim, play roughly, go out in the rain. But the way I see it, a certain number of kids are going to be born with issues like mine every year. One in forty thousand to one in seventy thousand, if you ask the people who count up these things. Thats not very many, but thats just kids with Treacher Collins. Tens of thousands of kids are born with facial differences in North America every year. Plenty more kids have different problems to deal with. Im definitely not going to do the math on that, but I know that if you add all those kids together, Im just one in a huge crowd. If you look at it that way, Im pretty normal after all.