Draconian Does Not Mean Fun NATHANIEL 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 Children's Hospital. Another doctor's 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 didn't form properly, so doctors had been trying to help me function for my entire life. 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 or breathe because extra bones were behind my nose, blocking it. I couldn't eat because my jaw was small and out of alignment. I could barely hear because Ididn'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 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 touch--everything 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 didn't feel different. I felt like myself, the only self I'd ever known. Other kids weren't fed through a tube in their stomach for the first year and a half of their lives. Other kids didn't wear hearing aids. Other kids didn't have a hole in their neck to help them to breathe. Other kids didn't grow up having doctors' appointments instead of soccer practice and surgeries instead of vacations. Other kids didn't 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. That's not very many, but that's 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. I'm definitely not going to do the math on that, but I know that if you add all those kids together, I'm just one in a huge crowd. If you look at it that way, I'm pretty normal after all. MAGDA For our first appointment, Nathaniel's dad, Russel, and I, Nathaniel's mom, sat down in chairs in front of Dr. Hopper's desk. Nathaniel picked a bench off to the side of the room. Dr. Hopper was pioneering a new surgery. He hoped to dramatically change Nathaniel's ability to breathe, at last setting him free from the tubes and pumps and antibiotics that had entangled him for his whole life. The very first thing Dr. Hopper said to the three of us was, "You'll hate what I'm going to tell you. It's draconian." I explained to Nathaniel that draconian meant extremely harsh. He registered that, then went back to drawing on a piece of paper the nurse had given him. Dr. Hopper went on to explain that if we agreed to the surgery, he and his team would try to change the structure of Nathaniel's entire face. It would take several preparatory surgeries, and then the biggest one would be a whopper, not just because of the eleven-hour procedure itself, but because of what came afterward. The follow-up treatment was not very different from what you might invent to torture your worst enemy. (Sure, when you torture your worst enemy, the end goal usually isn't to give the guy a chance to breathe through his nose and without the help of a trach, but otherwise this was exactly the same.) For now, I'll just say that it involved four months of wearing a heavy cage around his head, attached by screws. In the end, if the surgery was successful, it would change Nathaniel's life. He would still look like himself, the doctor promised us, but for the first time since he was six weeks old, he wouldn't need a breathing tube. He would be able to take a shower, and yes, he'd be allowed to swim. Dr. Hopper said, "The entire process, including six surgeries, will take a year to a year and a half, but it might work." Nathaniel would only be the third child to have the procedure. It was as if the doctors, amongst themselves, had said, "If we can fix Nathaniel Newman, we can fix anyone." The description of the treatment was not a pleasant thing for a parent to hear. I wondered how it was sounding to the eleven-year-old would-be patient. "You're doing this because we said so" wouldn't fly in this case. It was torture! He couldn't wake up surprised to find his head in a vise. We had to make sure he knew what he was getting himself into, and he had to be on board. That was why we'd brought Nathaniel with us to Dr. Hopper's office to hear everything he had to say. When the doctor finished describing this terrible but potentially miraculous plan, his dad and I looked at our son to see his reaction. Nathaniel was in the corner of the room. He had a sheet of white paper taped to his chest. He'd colored the paper red, and there were big holes stabbed through it, as if he'd been riddled with bullets. "What are you doing?" we asked him. I think we both expected him to say: "This is what you want to do to me. You're going to destroy me." Instead, he cheerfully said, "You're not going to believe it. We've been overrun by monkeys, and they all have muskets." Nathaniel had always found his way through the pain and suffering, and this was exactly how he did it. Monkeys and muskets one day, a team of superheroes another--these characters and their comic book battles distracted him from bad news, boredom, and pain. Russel pressed him. "Nathaniel, this is serious. It's going to suck. Did you hear the details? Do you have any questions? What do you think?" Nathaniel looked up. He asked, "Do I get to miss school?" Russel said, "Yes, you will miss three months of school." Nathaniel gave a double thumbs-up. "Awesome. Let's do it." NATHANIEL I was bored. To be honest, I'm always bored when doctors are talking, but my parents make me turn off my iPad when there's "stuff I need to hear." So I had asked a nurse for a marker. The one she gave me happened to be red. While I "listened," I drew a bullet hole on a piece of paper and taped it to myself. Did it mean I had a death wish? No! Occasionally, I draw laser beams going through people. This doesn't mean I'm violent or insane. It just means I like the way I draw laser beams. Ever since I could remember, I'd had a tracheostomy to help me breathe. Without it, I wouldn't be alive today. A trach is a tube that looks like a mini-drinking straw. It goes from a button-like valve on your neck to your windpipe (on the inside, of course) to help you breathe if you can't do it independently. For my whole life I'd known my life-saving trach was (a) a danger to my health and (b) a huge inconvenience. But it was also all I'd ever known. It felt normal to me. Imagine if someone came up to you and said, "Wow, you have to go to the bathroom several times a day? Your body doesn't just take care of that on its own? I feel so sorry for you. That must be gross and annoying." And you looked around and noticed that nobody else had to interrupt what they were doing to take a bathroom break. You were the only one. Nobody else even had bathrooms in their houses, so you had to carry around special equipment to handle your unusual needs. Then you might say, "Okay, I get it. Their bodies work better than mine." You would understand that idea, but it would still be hard to actually know what it felt like for your body to work just like theirs, what it felt like to be "normal." When I said, "Awesome! Let's do it!" to Dr. Hopper, I was acting like the surgery was no big deal, but I really did like the possibility of being able to swim farther, deeper, for longer, without an adult hovering nearby. And though it was hard for me to imagine, I knew that if I didn't have a trach, so many of the medical issues I dealt with every day would just . . . disappear. I wouldn't get infections. I wouldn't worry about someone bumping into the trach. My parents wouldn't have to change the trach tie (which held it in place). I wouldn't have to get a new trach every two weeks. The cap wouldn't pop out and fly down the school hallway when I sneezed, as it once had done in front of my entire class. I was used to having the trach be part of my life, but it wasn't too hard to conclude, based on observation, that life without it would be a whole lot easier. I liked what the surgery promised, and I wanted to have it and for it to be successful, but I didn't want to get my hopes up. MAGDA From the day he was born, Nathaniel accepted his physical challenges, but people around him had a little more trouble. He looked different to them. He didn't look "normal." People had strange, awkward, sometimes mean responses to seeing him. 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. Excerpted from Normal by Magdalena M. Newman, Nathaniel Newman All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
