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

By Nancy M. Schwartz

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

• Language: English
• Publisher: Modern History Press
• Release date: Apr 1, 2019
• ISBN: 9781615994649

Book preview

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