Born Extraordinary: Empowering Children with Differences and Disabilities - Softcover

Zucker, Meg

Softcover

ISBN 10: 0593419383 ISBN 13: 9780593419380

Verlag: Penguin Publishing Group, 2023

Inhaltsangabe

A parent’s guide to empowering children to embrace their visible and invisible differences

    Meg Zucker was born with one finger on each hand, shortened forearms, and one toe on each misshapen foot, caused by a genetic condition called ectrodactyly. She would eventually pass this condition on to her two sons, and, along with her husband, raise them and their adopted daughter, who has her own invisible differences. Born of the family’s hard-won experiences, this book offers invaluable advice on raising confident, empathetic, and resilient children who succeed, not despite but because of their differences.
    Born Extraordinary helps parents of children with differences and disabilities to relinquish their instinctive anxieties, embrace their new normal, and ultimately find joy in watching their children thrive. Often the subjects of unwanted attention—ranging from pitying stares to bullying—Zucker and her sons have learned to ignore what others think and live fearlessly. Also incorporating the stories of other families with visible and invisible differences of all kinds, Born Extraordinary gives parents the tools to meet their children’s emotional needs while supporting the whole family unit. Parents learn how best to empower their children to confront others’ assumptions, grow in confidence, and encourage dialogue—rather than silence, fear, and shame—around difference.

Über diesen Titel

Über die Autorin bzw. den Autor

Meg Zucker is the founder and president of Don’t Hide It, Flaunt It, a 501(c)(3) nonprofit with the mission of advancing understanding and mutual respect for people’s differences. A graduate of the University of Wisconsin−Madison and New York University School of Law, she is also the U.S. Head of Anti-Money Laundering and Financial Crime at the Royal Bank of Canada.

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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...

Details zur Ausgabe

• Verlag: Penguin Publishing Group
• Erscheinungsdatum: 2023
• Sprache: Englisch
• ISBN 10: 0593419383
• ISBN 13: 9780593419380
• Einband: Taschenbuch
• Anzahl der Seiten: 272
• Kontakt zum Hersteller: Tarcher; https://www.penguinrandomhouse.com/search/tarcher?page=1&q=TARCHER; ; Attn: Andrea T Sheridan 1745 BROADWAY; New York; NY; 10019; USA
• Verantwortliche Person: Phaidon Verlag GmbH; gpsr@phaidon.com; ; Zähringer Straße 24; Berlin; 10707; Deutschland