CHAPTER 1 Embracing the New Normal I've often heard people use the expression "My world was turned upside down" to describe incidents as frivolous as finding out their favorite hairdresser moved to another state. But the phrase is intended to capture something that is truly shocking or upsetting. To me, it is aptly applied when your child arrives or unexpectedly becomes different. Embracing your new normal is not a sprint but a marathon. And whether the news comes when you are pregnant or later on, it is easy to be tortured by guilt. As my own mother described it after having me, she felt almost insane with anguish. That got me thinking about what types of feelings a parent can expect when their child is born different. It can start out rough, mimicking the stages of grief: Shock and denial, pain and guilt, anger, bargaining, and possibly depression, but then comes the upward turn. You begin to work through your family's new normal-finally arriving at acceptance and hope. In the end, you'll even come to appreciate that the experience provided a deep level of fulfillment you hadn't been seeking and didn't even realize you were lacking. As with anything worthwhile, your struggle, and rising to the occasion, will be joyfully rewarded. Your child's difference will even become something to celebrate. But first things first. How Low I Sank I think it's important for me to first take a step back and describe my own personal fears and struggles when faced with the reality that I'd be a parent of a child who was different. While all that pain is thankfully behind me, it's impossible to fully appreciate how far I've come without learning how low I sank. And if you're feeling down at this moment, know you are not alone and there is a light at the end of what feels like a dark and ominous tunnel. A few months after John and I got engaged, he understandably wanted to make sure we saw a specialist to ensure we were fully informed before trying to start a family. Although he suspected my condition was genetic, he also didn't make it a deal breaker. Yes, I know John's a keeper. I've had the good fortune of marrying a man who has tolerated my whims and, most important, loved me unconditionally long before I felt that way about myself. I reluctantly agreed to go to the geneticist, but still tried to convince him that our children wouldn't share my condition. How was I so certain? Because before I met John, instead of poring through books on ectrodactyly or dominant gene mutations, I received the assurance I needed . . . from a psychic named Reese. I had graduated from law school the year before and was sitting in the front room of her tiny apartment on 14th Street and First Avenue in New York City, when she said, "You will have two children and they won't have your handicap." Her pronouncement was music to my ears. Tears began to stream down my cheeks. Although I had found the word "handicap" to be both dated and personally offensive, I chose to ignore it. Reese insisted I pay her in cash before we sat at a small table in the front room and she shuffled a deck of tarot cards. In her late forties, Reese was quite pretty, with olive-colored skin and long black hair wrapped in a scarf over the top. I'd endure anything to hear someone tell me that my children would be born perfect. "Are you sure?" I asked weakly. I trembled, afraid she couldn't really predict the future but desperately wanting her to be right. I asked Reese to repeat her vision. "Come back next week." And so I did, again and again. Given my accomplishments to date, these weekly visits were quite ironic. On my way home from my plum job at a premier financial firm on Wall Street, I'd visit Reese to hear that everything would be all right. So as my career was taking flight, I'd never been more pathetic. Each week that I visited Reese, she would select different tarot cards. But when it was time to examine them, she'd always pause and beam at me. "The cards never lie. You will marry and have two children; neither of them will be born with your hands." Reese stared at one of the cards for a long moment, then my hands, and then looked away. Apparently, she hadn't noticed my feet. I made a mental note to ask her about them to make sure I wouldn't pass on that part of my condition, either. I never thought I'd been addicted to anything, but reflecting back, Reese's predictions were the very drug that eased my deepest dread. In fact, I felt so indebted to her that after the first month, I decided paying her weekly wasn't sufficient. On one occasion, I gave her an envelope with a gift certificate to an exclusive spa day at Elizabeth Arden's Red Door Spa on the Upper East Side. On another occasion, we met downtown near Wall Street at the discounted luxury brand department store, Century 21. There, she introduced me to her grown son. Reese had explained that buying him an expensive leather coat that he badly needed was the least I could do. Back at the Mount Sinai consultation with John, the doctor turned to me and frowned, informing me that my condition was genetic and I had a 50 percent chance of passing it on to our children. I was crushed at first. But then, attempting to reassure myself, I rationalized the unwelcome news. I thought to myself, "Even if it's genetic, I'll simply land on the right side of the equation. That must have been why Reese saw that everything would work out." The following year, I became pregnant with our firstborn, Ethan. At our first medical appointment at around the eight-week gestational period, we heard the heartbeat and John practically jumped out of his seat in joy. This was particularly momentous because we'd had two prior miscarriages and had never come that far. While John was all smiles, though, my nerves began swinging into motion. Was Reese really able to predict the digit-count of my future children? Would my baby inherit my condition? At the nineteen-week anatomy scan at Mount Sinai Hospital on the Upper East Side, I'd have my answer. "He has a very healthy-looking heart. It is beating perfectly." Fifteen minutes earlier, I had hoisted my enlarged pregnant body onto the examination table and braced for the cold gel. The hospital technician had been gliding the hard plastic wand all over my abdomen while staring at the black-and-white screen with a silhouette of our unborn son. "The brain size and shape are normal. You should be in the clear, just a few more things to check..." Initially, she had been smiling pleasantly. But then her expression darkened. "Is everything okay?" I asked blithely. John placed his hand firmly on my leg as if to say, "Just wait." "Excuse me, I'll be right back." She had failed miserably at masking her concerned expression, leaving me lying there with John by my side. A few minutes later, the doctor walked in and placed the wand over the same areas as the technician. "I'm sorry to be the one to tell you both this, but we can only find one finger on each hand . . . and two toes on each foot." He stared at my own hands and shortened forearms and added, "I presume you both knew the risks." Then, as if to offer a bright side, "The baby does, however, seem to have normal-length forearms. Want to know the gender?" My own parents had given me insight that when a child is born different, a dark cloud colors the birthing room. Faces drop. An awkward silence fills the air. If someone thinks to congratulate you, there is hesitation in their voice. No one really knows what to say, not even you. All the movies I'd seen with everyone utterly relieved the newborn baby had ten fingers and ten toes flashed before my eyes. The news that Ethan would be born different was devastating, my life's greatest fear now realized. Overcoming the Guilt In the beginning, when a baby is born different, one word comes into focus: loss. loss of the picture-perfect family. Loss of the ability to show off your baby with instant pride. Loss of that anticipated bond with close friends who can no longer fully relate. Loss of the privilege of worrying about the unimportant things in life. Loss of confidence and any clear picture of how to parent. Loss of conversations with family and friends starting light instead of heavy and concerned. Loss of an easier life. The guilt of not having been able to take control and prevent your new reality is raw and real. When my mother gave birth to me during a blizzard, the storm outside felt calm compared to how she felt internally. Despite feeling innate motherly love, she also felt, as she described it, out of her mind with emotional pain and guilt every time she looked at my hands and feet. She was so personally tortured that my dad mainly took care of me during my first year while she cared for my older brother, Peter. "What if I would have zigged instead of zagged? Maybe then you would've been born perfect." And as for me, feeling at fault doesn't even begin to describe it. Unlike most people who understand that getting pregnant can involve risks, mine were more than speculative. With Ethan born and my biggest fear realized, I couldn't help but think of my own mother's traumatic experience and how deeply she blamed herself. I could now relate. Yet, I got through it. But how? If only there's a decisive epiphany waiting around the corner, like someone smacking you and barking, "Snap out of it!" as Loretta (Cher) exploded at Ronny (Nicolas Cage) in the film Moonstruck. If only life were that simple. No, instead I began to think a lot about my father's favorite mantra. "Worry about the things you can do something about." I would come to cherish this phrase and use it as a motivator to let go enough to begin to heal. First, I needed to face my own music. I had to ask myself if the reason my kids were different was truly and actually my fault. Sure, in my case the cause was certain, but was it actually something I did to them? None of us can create the traits our kids are born with. Accepting that their lot in life was part of their destiny helped me to let go of feeling so responsible. Some things in life are within our control, and some are not. By framing the experience in this context, I realized that I desperately wanted to be a mom no matter the outcome and couldn't continue to blame myself. But there was another layer of insight that helped instrumentally. Another line in Moonstruck, from Ronny to Loretta, got right to the point: "We aren't here to make things perfect. Snowflakes are perfect. The stars are perfect. Not us. Not us!" It occurred to me that the best way to not feel guilty about having a child who is different and to forgive myself was to let go of the notion of perfection. As Ronny pointed out, perfection doesn't exist in people. When I started shifting my mindset to the idea that no one is flawless, I began to relinquish the feeling that I'd done something wrong. I even opened myself up to the possibility that just like everyone else, I was blessed to be a parent of a child born exactly as they were meant to be. In fact, I did something absolutely right. Be Honest with Yourself Are you someone who doesn't care what people think? Or do you tend to be consumed by the thoughts and opinions of others? Be honest with yourself. I used to think that because I was different, I was the only one absorbed by what others might be thinking of me. But when I was trying to decide whether or not to attend my ten-year high school reunion, I inquired of a friend whether someone I remembered fondly was attending. In fact, she wasn't. My friend explained that our mutual friend had gained weight since graduation and wanted to avoid feeling judged. John and I had just gotten engaged, so I shared what was on my mind with him. "Seriously? I walk this earth with only one finger on each hand, shortened arms, and one toe on each foot and she's not coming because she put on a few pounds?" But that was unfair. Who was I to judge her? Just because my differences were more pronounced didn't negate her own personal struggle. After all, I knew how hard it can be to see yourself in a better light than others do. After our son Ethan's birth, I couldn't help but stare into his big blue eyes and tiny, sweet face. Although he was breathtakingly beautiful, I was secretly relieved that the nurses had swaddled him tight, with all his limbs covered. It gave me a few moments to fantasize, having a baby who was the vision of perfection for all to see. But then John's parents and mine arrived to meet their grandson. Although it seems so silly given my own physical differences, I longed for them to meet Ethan with his hands and feet covered up. He would appear perfect for their first impression. John had other ideas. Without hesitating, he took our newborn from my arms, and his blanket instantly fell to the ground. Next, he proudly held our son high in the air for our parents to offer their collective oohs and aahs. "Here he is! This. Is. Ethan!" I was stunned by John's resolute strength. Actually, I shouldn't have been so in awe since I had been raised to behave the same way. I remember strolling through a mall with my mom when I was around the age of ten, and a group of tweens passed us. One of them noticed my hands, pointed at me, and snorted out aloud, "Hey, did you see that girl?" I glanced at my mom and began to pull her to leave. But instead of succumbing to unwelcome attention, she turned and smiled at me. "Meg, forget them. You look absolutely gorgeous in red. I think I saw a sweater in the Limited you'll love. Come, let's have you try it on!" She responded to the scene by showing me that while I had no control over others, I always had the power to ignore. As I grew up, both of my parents' commitment in this regard helped me to make the most of my life-I unhesitatingly went on my own to sleepaway camps, joyfully rushed a sorority in college, determinedly moved alone to New York City for law school, and interviewed with confidence afterward, landing competitive jobs on Wall Street and beyond. Excerpted from Born Extraordinary: Empowering Children with Differences and Disabilities by Meg Zucker 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.
