Up, Not Down Syndrome E-Book

Nancy M. Schwartz

• Herausgeber: Modern History Press
• Kategorie: Ratgeber
• Sprache: Englisch
• Veröffentlichungsjahr: 2019

Seitenzahl: 178

Beschreibung

Up, Not Down Syndrome is a love letter and a map. Experience how it feels to think your life is over after having an unlovable baby. At first the loss seems impossible to overcome. Alex becomes the author's greatest teacher. Love is stronger than fear. Everyone has gifts. The book consists of three parts: the story, the lessons Alex taught the writer and Alex's perspective. Up, Not Down Syndrome is a promise to stay positive, no matter what: up, not down. Nancy's journey gets to the core of what it is to be human:

• Explore what it feels like to think life, as you know it, is over.
• Discover the fierce love, joy and peace a baby diagnosed with Trisomy 21 (Down syndrome) brings.
• Learn the lessons this child taught his mom.
• Understand the gift this baby brings to our world.
• Realize the depth of the love this family has for the child.

"A beautiful, honest account of not just accepting--but embracing--the unknown. Nancy shows us the blessing of an unexpected gift and the enormity of love." --Sara Byala, Ph.D. "This is a wonderful book to remind you that the joy of love is possible in unexpected places when you open your heart to it." --Barbara Taylor Bowman, Irving B. Harris Professor of Child Development "A moving and wise story of how a family navigates through hope, loss, learning and, most of all, love." --Rabbi David Wolpe, author of David: The Divided Heart "The truth and beauty of Nancy Schwartz's words tell an ongoing story of love, learning and the power of acceptance. All can learn from this family's boundless hope and from their source of joy and strength: Alex." --April Beard, Music Educator and Cellist

Leseprobe

Up, Not Down Syndrome

Uplifting Lessons Learned From Raising a Son With Trisomy 21

Nancy M. Schwartz

Modern History Press

Up, Not Down Syndrome: Uplifting Lessons Learned From Raising a Son With Trisomy 21

Copyright © 2020 By Nancy M. Schwartz. All Rights Reserved.

* Some names have been changed to protect people’s privacy.

Library of Congress Cataloging-in-Publication Data

Names: Schwartz, Nancy M., 1968- author.

Title: Up, not down syndrome : uplifting lessons learned from raising a son with Trisomy 21 / Nancy M. Schwartz.

Description: Ann Arbor, MI : Modern History Press, [2019] | Includes bibliographical references and index. | Summary: "When Alex is born with Down Syndrome (Trisomy 21) the author and her family decide to take care of him at home against the advice of doctors. The resulting life- lessons have taught the author that the happiness and joy that Alex brings is more than worth the struggle of parenting"-- Provided by publisher.

Identifiers: LCCN 2019017596 (print) | LCCN 2019980364 (ebook) | ISBN 9781615994632 (hardcover) | ISBN 9781615994625 (paperback) | ISBN 9781615994649 (ebook)

Subjects: LCSH: Schwartz, Nancy M., 1968---Family. | Mothers of children with Down syndrome--United States--Biography. | Down syndrome--Patients--Care--United States--Biography. | Mothers and sons--United States--Biography.

Classification: LCC RJ506.D68 S337 2019 (print) | LCC RJ506.D68 (ebook) |

DDC 618.92/8588420092 [B]--dc23

LC record available at https://lccn.loc.gov/2019017596

LC ebook record available at https://lccn.loc.gov/2019980364

Published by

Modern History Press

5145 Pontiac Trail

Ann Arbor, MI 48105

www.ModernHistoryPress.com

[email protected]

Tollfree 888-761-6268

FAX [phone]

Cover design: Doug West / ZAQ Designs

Photo editing: Dylan Ball

Photo credits: Ellen Glazier Schwartz

For Josh, Sam, and Alex

“Do what makes your heart happy.”

Gina Cutlip Grandy

Human heart, drawing by Josh Schwartz

Contents

Introduction: The Story of Alex’s Birth

Chapter 1 - Shock

Chapter 2 - Oxygen

Chapter 3 - Light

Chapter 4 - Living

Chapter 5 - Bumps

Chapter 6 - Boob

Chatper 7 - Up Bow, Down Bow

Chapter 8 - Architect

Bibliography

Acknowledgments

About the Author

Index

Introduction: The Story of Alex’s Birth

Soon after our second son, Sam, was born, my husband, Michael, lost his job. My earnings had already been cut in half because I was on maternity leave from my teaching position, so our family endured a full year with no second income. But, as they do, things turned around.

Michael got a new job. I went back to school teaching English Language Learning (ELL). Sam, and his older brother, Josh, were happily developing into wonderful young boys.

Both Sam and Josh’s teachers regularly regaled Michael and me with stories about how our boys helped their fellow classmates. When I went to pick up the boys at school, other parents would stop me to say what incredible, kind, sweet, amazing, fine, young men I was raising. And that was before our family was hit with what turned out to be the best of all possible disasters when our third son, Alex, was born.

Josh would be the one to say a last goodbye to Pop Pop when he passed on before the service at Goldstein’s, in Bucks County, Pennsylvania. (Pop Pop is what the boys called their grandfather, Michael’s father.) Josh is fearless. At age fourteen, Josh took the train to the city with friends. I was worried, but I needn’t have been. Everything went well. Josh has always been advanced beyond his years. Responsible and fun.

I will never forget how Sam gave his stuffed bear, named Bear, to Alex. Bear stayed with Sam through his Pop Pop’s passing, Alex’s birth, and more. It has a majestic quality of love sewn in from a dime store on Long Beach Island. The day Sam gave Bear to Alex, I cried. I cried at his generosity, but also at the awareness that Sam was growing up.

I love Alex, Josh, and Sam more than anyone. I want them all to be healthy and happy. Luckily, Josh and Sam are continuing to flourish. They have remained pillars of hope and strength, unobtrusive and easy to please. There are billions of examples of how extraordinary both Sam and Josh are. When I think about all they will be, it fills me with a pride that does not end. When I see Sam walk his friend, Kayla, to the door, I think what a gorgeous and polite young man he is. My middle child balances the demands of playing on two soccer teams. As a high school student, he was on the varsity school soccer team for Upper Merion as well as the Prussians soccer club team. He played for Diamond baseball, and the Upper Merion High School baseball team. A gifted athlete, he also maintained uninterrupted honor roll status while taking a rigorous curriculum of honors classes. Josh is a beautiful young man. He has balanced running on the school’s track team, working at the childcare center at the Lifetime gym three times a week, and getting honors in all his classes, including his advanced placement level courses. Josh’s positive outlook is infectious. Both my older boys (young men, now, although I still see them as my boys) astound me with their love for Alex, and their ability to incorporate him into their busy lives.

When Michael and I found out we were expecting, for the third time, we were a mixture of overjoyed and freaked out. How would we continue to dig out from the year he hadn’t worked? How would we support a new baby along with our two existing boys?

Sure, by then, Sam and Josh were five and six, and Michael had been back to work for awhile, but the impact of more than three-hundred-sixty-five unemployed days had taken their toll, as evidenced by our high credit card and low checking account balances. Also, I was forty. I thought I was done with middle-of-the-night feedings and diaper changes. I had a fulltime job as a teacher. My to-do list was never-ending. Yet, there was also an upsurge of excitement.

I love being a mother. Josh and Sam had given more shape and substance to my life than I could have ever imagined. Now, Michael and I would have a third.

The news that my third baby would be a boy could not have been more comforting.

You know what you’re doing, I reassured myself. You have done this twice before.

It wasn’t long before fear was eclipsed by a sense of unlimited possibilities.

What would my third son’s personality be? Would he be sensitive and kind, like Josh? A true egalitarian, like Sam?

I couldn’t wait to meet him. Evidently, he felt the same.

Near the end of my pregnancy, I went to a routine doctor’s visit and was told I would not be going home.

Dr. Diamond pinched the bridge of his nose and closed his eyes. “Let’s have you have this baby tonight,” he said.

I knew something wasn’t right. Why else would he be speeding up my delivery date? But the doctor assured me there was no reason for alarm. My already soon-to-arrive son was simply ready to come into the world a bit ahead of schedule. It was something to do with test results and fluid levels. Dr. Diamond finished the non-routine, routine appointment, then handed me over to Nurse Jerry to walk me from the hospital-adjacent offices into the maternity ward. I followed her through secret hallways, through corridors I did not know existed. That day, Bryn Mawr Hospital, part of Main Line Health, felt like a maze.

“Can I call my husband? Should I re-park? I parked in the doctor’s visiting area, and now….”

“Your car will be fine,” Nurse Jerry promised.

She opened the heavy door to the room where I would finally meet the being that had been inside my belly for thirty-seven-and-a-half weeks.

“And you can’t use your cell here.”

I’d seen Nurse Jerry a lot. I’d seen my entire doctor’s office staff a lot. For my third pregnancy, I’d spent week after week gazing at the zigzag lines indicating my baby’s heartbeat. Each time, we failed the non-stress test. Ultrasound after ultrasound. I teased my friends that Michael and I had more photos of the baby in my tummy than of our actual children.

That day, the day the doctor decided to induce, I’d been reading Freakonomics to make the time pass as I waited for the results of the latest test. I was on the part about Roe v. Wade when Dr. Diamond had come into the room to inform me that my amniotic fluid was at 5.9, way too low to safely remain pregnant. I still held the book, clutched in one trembling hand, but trying to be stoic. Nurse Jerry gestured to a table. I put the book down. It wasn’t until years later that I would recognize the irony of that worry-filled moment.

Roe v. Wade was the 1973 Supreme Court decision that forever changed the laws that had criminalized or restricted access to abortions. According to a CBS News August 14, 2017 online article, since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women—close to 100 percent—who received a positive test for Down syndrome terminated their pregnancy.

The three of us together for the first time. You can see our joy, and concern for the future here.

Looking back, while I support anyone’s decision, I’m glad I didn’t know about my son’s genetics in advance. If I had known, I can’t say for certain whether or not I’d have allowed my preconceptions and prejudices to obliterate the light and love my third boy brought, not just to me, but to all of us. Many babies with Down syndrome are aborted with no knowledge of the pure, unadulterated joy they can bring. I had no knowledge then either.

After Nurse Jerry handed me off to a labor and delivery nurse, in the hospital ward, I was given a gown and told to relax. I was already relaxed, physically. Mentally, I was doing my best not to spiral. But Dr. Diamond had assured me that they induced all the time.

A dose of Pitocin. The contractions came faster than expected. I’d had my two other sons with medication but this felt different, so I wasn’t prepared for the added intensity of a labor by the medication.

Since I’d arrived at the hospital expecting a typical checkup, Michael hadn’t come with me. Against Nurse Jerry’s earlier admonitions, I tried calling him on the hospital phone repeatedly, but he was nowhere to be found.

No one answered at my dentist’s office either.

I was supposed to have a dentist appointment after my “routine” doctor’s visit. I left a message, “Sorry; I will not be at my dental exam; I am having a baby instead.”

The dentist office staff later told me they had found my words hilarious. They saved my voicemail. For years, they would replay it any time they needed a laugh.

After Michael and the dentist, I phoned my friend, Trish, and cancelled my lunch plans with her. Trish was, and is, a phenomenal friend. She survived breast cancer. She inspired me with her strength, beauty, and kindness.

When Trish was going through chemotherapy, she decided to give my family her heavy, dark wood dining room table and chairs. Tom, her husband, helped her carry it all into our home. When I asked her why she was being so generous, especially at a time when she was suffering, Trish said she knew our table, a hand-me-down from my grandparents in Minnesota, got crumbs stuck in the cracks.

“Mine has no cracks for crumbs,” she said. “Besides, we’re getting a new set—one that isn’t so heavy.”

Heavy. My heart sank for what Trish was enduring, but she refused to be anything other than optimistic. Through her example, she taught me that experiences don’t cause emotions. It’s how we interpret what happens that determines how we feel.

I was feeling annoyed. Where was Michael? I didn’t want to give birth alone. And having never had a drug-induced delivery this painful, I didn’t know how long I’d be in labor.

I dialed my friend Jamie’s number on the rotary hospital phone. Nurses had started coming in and out at intervals, and I didn’t want them yelling at me for violating any of the hospital’s phone policies.

Luckily, Jamie answered. Jamie always answered.

I had met Jamie, a friend and fellow mom, during a prenatal yoga class, taught by Gail Silver at Yoga on Main yoga studio. Gail is an extraordinary yoga teacher and author. We had both been pregnant with our oldest boys, me with Josh, she with her son Aidan. Through the years, our friendship had evolved into a rock-solid, unbreakable bond. We listened to each other’s thoughts and feelings, made time to regularly connect, and supported one another through the typical ups and downs of everyday existence.

As I waited, alone, hoping Michael would pause long enough in his workday to listen to my voicemail and hurry over to the hospital, everything felt colder than it should be. I shivered. I had given birth at Bryn Mawr Hospital twice before and remembered the rooms being warmer.

Jamie appeared. “Hey, Nancy.”

“Hey, Jamie. Thanks for coming.” At her presence, my heart calmed. I could’ve sworn the room got warmer.

She reached out a reassuring hand.

I’d just started telling Jamie about the reason the doctor had decided to induce when her wind-chime ringtone went off. She checked the screen but didn’t answer. I appreciated being the center of attention. That was one thing I’d long since learned about motherhood. I was almost never the most important person in the room. Few people asked about my wants, needs, and urges.

Speaking of urges, I had an overwhelming impulse to relieve myself, but the nurses had informed me earlier that I wasn’t allowed out of bed. I was supposed to pee in a commode.

I couldn’t go with Jamie hovering over me.

“Are you okay, Nancy?” my friend asked.

I explained my predicament.

She fetched a bedpan, then closed herself in the bathroom to quickly return her brother’s call, the one she’d missed while listening to me. It took me a second to figure out why Jamie had opted for the bathroom when she could’ve just gone into the hall to give me the privacy I needed to pee. Then, I recalled Nurse Jerry and the others’ no-cellphone policy. Jamie was smart to steer clear of the prying eyes of any hospital workers who’d have lectured her and made her end her call.

By myself in the room that had struck me as unforgivably frigid before my friend’s arrival, I was able to let go and go, but, even though the relief was immediate, I was squeamish at the awkwardness of peeing while lying down. Doing things differently than usual—I didn’t know then that that would become a metaphor for so many things involving my third son.

The nurse returned to the room. A cellphone-less Jamie emerged from the bathroom. My monitor must have inadvertently slipped off during my sideways commode activity, so the nurse reattached it and then applied Cervidil while Jamie averted her gaze. I flinched. Cervidil, when applied internally, can help dilate the uterus’s opening. It felt like having a car part inserted in my most private area.

Just then, Michael appeared. I glared at him, a bit unfairly. He’d been at work, after all, and he was as unprepared for our third son’s delivery as I was. Nevertheless, it bothered me that my husband could wander in and out of the experience, whereas I was stuck. There was no coming late or getting out early for me.

Between contractions, I watched mindless television. I’ve never been much of a TV person, but I needed a way to pass the time. Three’s Company made me laugh. But, other than that, things were fairly boring. Not much seemed to be happening. I waited. Waited. Waited. The nurse brought me an Ambien. I slept. The sun came up. That was when they gave me a second dose of Pitocin. A shockwave of sensation. Contractions. Movement. I cried, although not yet from the pain, and not for a specific reason. I was overwhelmed in a general way.

When Michael asked why I was sobbing, I didn’t know. Tears were simply rising from within in a giant tidal wave. Later, given what I discovered about the meaning of my third son’s Hebrew name (Alexander Gal means ocean wave), I’d find this ironic.

At the time, though, I was too teary to contemplate ironies. And too pensive. My mind raced with all that lay ahead. All I hadn’t done. I’d assumed I had more time before giving birth, and nothing felt exactly ready. Home was a jumble of undone chores.

Meanwhile, Michael couldn’t stop complaining. He hadn’t fed the dog or cat. His parents needed the car seats for our boys. A list of things he needed to take care of that he could have done before. Seriously? Evidently, the thought of doing for a few hours what I did every day was stressing him out. I grimaced as another contraction hit.

“Relax,” he said.

I hated all three times I was in labor and my husband or the nurses told me to relax.

“I’ll be back.”

Really, Michael, you’re leaving now?

I took a deep breath. Michael had to help his parents get our other two boys settled at home. I understood, but I wished he could stay. I love my husband and, despite my irrational, in-labor anger, I wanted him by my side.

A few moments later, he returned with a giant, sky-colored, satin-footed bear. The nurse remarked what a great guy he was. Never mind the love. The anger was back. I found myself wishing he could have the baby come out of him. A contraction. Then another. I screamed. I cried some more. Now, the pain was excruciating.

Nurse Ann walked in. “Breathe,” she told me, “and relax.”

There was that word again. She was trying to be helpful, but I wanted to yell at her. The pain seemed unending. Because of the Pitocin, the contractions I was experiencing were more severe than during either of the other deliveries.

The anesthesiologist arrived. I felt a sudden flash of fear. An epidural was about to be inserted into my spine. My mind rattled off a litany of possible side-effects. Another contraction. Just that quickly, I didn’t care about the risks. If they had been offering crystal meth or heroin, I would have taken it.

“Stay still,” the anesthesiologist soothed.

Still? How was I supposed to do that with pain coursing through me? Wave upon wave of excruciating angst that felt impossible to surf. I’ve never been a surfer, but I once read that the only way to ride a wave is to lean into it. I did as the anesthesiologist ordered. I didn’t want to be paralyzed for life. Despite my stillness, it didn’t work. They pricked me a second time while I hugged a pillow and squeezed Nurse Ann’s hand. She used the dreaded R-word, “relax,” again. This time, I barely cared. She was just trying to help.

Jamie was long gone by then—she’d left shortly after Michael arrived—but I harnessed my inner prenatal yogi, putting into practice the lessons I’d learned six years before when she and I had met. It worked. The second epidural was effective.

Michael reappeared. He’d been at our house for an hour.

I kicked him out. My hormones were raging, and my emotions were up, and down.

Nurse Ann checked me. The epidural continued working its magic.

I asked her to bring Michael back in. He took my hand. Squeezed. We’d been together long enough to know one another’s eccentricities. To forgive and let go.

He wiped a sweaty wisp of hair from my forehead.

The end was less excruciating than the beginning. I was at ten centimeters.

Nurse Ann hurried off to get my doctor, Dr. Crate. She was kind-hearted and had a calm, easeful way about her. I appreciated her serene confidence.

“How’re you doing, Nancy?” she asked.

The pain had subsided enough for me to smile. A young resident, Shannon, had accompanied the doctor into the room. She spoke to her about details and dilation. I half-expected her to reach out right then and there, and receive my third baby boy into the world, but Dr. Crate said it might take as many as eight more hours.

I was skeptical. I was also, it turned out, right. My baby boy was as eager to meet me as I was to meet him. Not an hour later, the same doctor told me to hold my knees and push.

Alex’s first photo. He is one minute old here. He would remain in the NICU for one month.

Alex:

What is going on? Why do Mom and Dad look so shocked, and sad? Why are they crying? Why is the doctor talking to them and holding Mom’s hand? I want to snuggle Mom and Dad. Where are these people taking me? I am cold. I miss swimming inside that other place, and being with Mom. It is sterile here. I don’t hear the soccer ball bouncing like at home. There are no dogs barking or cats meowing. Where am I? This bed is tiny. I miss Mom.