Issue #30 – Sibs’ Niche: Small Steps

Posted on Posted in All Articles, Down Syndrome and Congenital Heart Defects

Rechi Berger

Age 14

A hundred thousand stars winked at me through the window glass. I closed my eyes and inhaled the unfamiliar smell that permeated the air as of late—the sweet smell of babies. Ahh.

“Rechi,” my father’s voice came from the doorway of my bedroom, darkened by his long shadow, “want to come see the baby now?”

“Sure!” I slid off my bed and followed my father to his bedroom, where my mother held our little princess on her bed. She patted the space near her, and I sat down.

“I love her blanket,” I whispered, fingering the soft, star-studded material, “especially the stars.”

My mother glanced at my father, sitting across from us on his bed. “She is a star,” she said softly, after a pause.

“Yeah,” I agreed, not quite sure about what she meant.

My parents exchanged glances again, and my mother turned to face me. “Rechi,” she said, taking my hand gently, “the baby… Chayala…” She took a deep breath. “She has… Down syndrome.”

Silence, and then the rushing sound of blood in my ears, loud and then louder yet. The room was black and white with blinding lights, and suddenly I was choking, clawing frantically through the impossibly dense air that clogged my throat. I was falling, sinking lower and lower into a dark abyss of nothingness, hysterically lunging for the past, for before, for the elusive normalcy that seemed to be running away. Nothing and no one existed. It was quiet, silent. With those four huge words, my world came crashing down.

A metallic taste rose in my mouth as I bit my tongue to keep the tears from escaping. I knew then that nothing would ever be the same again.


It was a blustering December afternoon, sunlight already fading to dusk, when my sisters and I walked into the house. I slipped off my coat and briefcase and headed to the kitchen for dinner. The house livened up as my brothers arrived home from school and joined us around the table.

Supper was doled out in generous portions to the background cacophony of clattering dishes, endless my-teacher’s-shoes-I-forgot-my-homework-never-going-back-and-yesterday-but-Ma-you-SAID! chatter, and the poor cutlery, trying in vain to bang out a hopeless rhythm.

“…the potatoes pleeeeeeaaaaaase?”

“Of course!” The potatoes were duly passed, albeit a little too enthusiastically. Some spilled a bit out of the corners of the serving bowl, but no one seemed to notice, thankfully.

My fourth-grade sister sat with her fingers in her ears, looking straight ahead, singing some song or other, probably considerably louder than intended. “FOURTH GRADE ARMY COME LET’S DO THE HISTORY BEAT SAAAAAALUTE!” Chayala was trying very hard to sing along between spoonfuls of mashed potatoes, thumping her small fist on her tray loudly, completely disregarding the rigid beat my sister was trying to stick to.

“Oh, girls,” my mother set down the spoon she was using to feed Chayala and looked up, “I almost forgot! I have great news!”

She wiped Chayala’s chin with the corner of a napkin and lifted her out of her highchair. My siblings and I watched as Mommy put her down on the floor gently. She straightened, and we looked on, bewildered, as she started singing and clapping, “Crawling! Crawling! Everybody crawl! Crawling! Crawling! Everybody crawl!” Chayala beamed up at her and offered a delighted giggle. My mother persistently continued chanting, and we all joined along good-naturedly, until, slowly, she lifted herself onto her palms and knees and tentatively began to move forward.

Everyone exploded. Shrieking along with the rest of my family, something exhilarating swelled in my chest as I watched her crawling—crawling!—carefully on the floor. And then we were all laughing and laughing and laughing with the sheer glee of finally experiencing this momentous occasion. Someone put on music and we all danced up a storm, fueled by an inexplicable joy, drunk on euphoria. We had finally, finally reached The Moment.


It was dark and cold out, even though it was late April. Murmuring a perek of tehillim had become automatic as the sound of wailing sirens became way too familiar. Repeated whispers of Baruch Dayan HaEmes subdued the atmosphere. The world had begun spinning in the wrong direction, and life became one endless nightmare with little hope for tomorrow. On Friday nights, the breathtaking melody of Lecha Dodi was woven through the streets, sweeping everyone along with its beauty; a socially distanced, yet spiritually connected minyan.

During the week, endless Zoom meetings were put into order. Teletherapy became the new trend. In our house, it was a dreaded chore involving a perpetual cat-and-mouse chase, my sisters and I being the cats, and Chayala filling the role of the mouse fabulously. It was a tedious cycle of running up and then down and then up the stairs again. Skipping and running and jumping through an endless obstacle course, its strenuosity entirely draining. The therapy was one of the blessings in disguise of our home.


I leaned back in my chair and viewed the room through the narrow slits of my tired eyes. The glittering embers of the Shabbos candles glowed dimly, reflecting off the glasses scattered across the table. The last few notes of zemiros died out slowly, still holding on. A soft breeze wafted through the open window.

“Chayala drew a circle today with Ed,” my mother announced randomly.

I smiled. Her therapist had been working on that for quite some time. Amazing. Who could imagine that someone who entered the world a mere two years ago is now able to hold a pencil and draw a circle? And to understand the meaning of the word and to comply when told to draw one? It’s incredible! I smirked to myself, pleased with my eloquent little speculation.

Suddenly, I sat upright, electrified. “It’s not only here. It’s with every baby!” I exclaimed aloud.

Every head in the room turned. “What?” my sister demanded.

I was too dumbstruck to notice. “Think of it. A baby is born, completely hapless and defenseless and dependent. It can’t even lift its own head! One measly year later, said baby is very likely walking and talking and is almost a functioning member of society! And we think this is totally normal!” I banged the table for emphasis. “One year!” I shook my head incredulously.

“That is pretty unbelievable when you think of it like that,” my mother agreed thoughtfully.

“It’s… wow,” my sister breathed.

“We get to watch each step of every process in detail,” I added, warming to my theme, “but for the millions of regular, normal babies out there, does anyone appreciate it? Does anyone even notice?”

The question lingered in the air, echoing.