Issue #34 – In Life and In Death, Never Apart

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

In Life and In Death, Never Apart

By Silka Ekstein


Several months after my dear mother’s passing, I was very touched to read the Editor’s Message in DSAU #27. I will quote the passage that affected me so profoundly.


At a visit to the cemetery prior to our son’s wedding, to invite our deceased parents z’l to the Simcha, I came to a sad and painful realization that echoes the sentiments of Down syndrome stigma years ago.


As I walked toward the section where young children were buried r’l, I noticed that the tombstones that were very aged were also very small, with very little information on them. They did not even feature the child’s family name. It was as though it was shameful to have died as a child. The more recent gravestones were larger, more prominent and were engraved with the child’s full name, family name, name of parents, etc. When realization dawned, it tore at my heart; years ago, it was a shame to lose a child r’l, so even the stone was shrouded in secrecy. Nowadays, when a child is r’l niftar, parents understand that it is not something to be ashamed of and they bury their children with the proper kavod.


How unnerving to realize the similarities between that horrific challenge and Down syndrome years ago and now.


How wonderful to see that people’s outlook can change for the better.


I called Sarah to tell her how these paragraphs within her message spoke to me personally, and Sarah convinced me to share my story with the readers of Down Syndrome Amongst Us magazine. While my parents z’l were very private and humble people, I nonetheless decided to write the following, in order to provide chizuk and clarity for others.


As World War 2 survivors, my parents started building their family in faraway Argentina, due to immigration issues that didn’t allow them to enter the USA. After living there for 21 years, they relocated to the United States.


Their fifth child, Bini, was born with Down syndrome while they still lived in South America. During that period of time, in the late 1950s, there were no services or support for these ‘closet’ children and their families. My parents invested heart and soul into raising Bini, as well as in all their children, in a community where there was just about a handful of chareidi Jews and Yiddishkeit was sorely lacking. They did not compromise on anything and lived their lives like in ‘De Alte Heim’.


My parents spent countless hours with Bini, teaching her about Yiddishkeit. They taught her all about making brachos, davening, applicable halachos, and everything she was able to comprehend. They exerted tremendous effort in teaching her daily social and life skills. Bini’s noble chinuch, in all aspects, enabled her to be a proud member of society.


My parents were true pioneers in their public and private acceptance of their beloved Bini, which enabled many other parents of children with special needs to see them as role models.


Years later, my own son, Refuly, who is now 10 years old, was born with Down syndrome. Before he came home from the hospital, I asked my older brother to go talk to my mother and prepare her with the news, hoping that my then-elderly mother would be able to cope with it. When my mother heard, she instantly said, “ALES is a Matnas Chinum!!” (Everything, is a treasured undeserved gift from Hashem Yisboruch!)






Shortly after my father a’h was niftar about 15 years ago, my mother told my brother that when her time comes after 120 years, it is her will to be laid next to my sister, Bini, who was still alive at that time. This was very shocking to all of us siblings because we knew that these children were laid in a separate section, near the gate of the Beis HaChayim. My brother explained to my mother that as much as we all wish for it, Bini will not be able to have a kavod’ig plot on the cemetery. My mother replied, “”רצונו של אדם זה כבודו”!


Bini was niftar 7 years ago at the age of 59.


At her shivah, one of my mother’s numerous grandchildren asked, “Babi, explain how you were able to do this, as a survivor left alone at the tender age of 15 without parents and family, you built a family in a foreign country, you had a child with Down syndrome at age 28, with no support and services, when these children were ‘closet children’, yet you chose a different path…how did you do it?”, and Babi answered with her signature smile, “What could we have done when there were no extra closets in our house…”


For a very long time after Bini’s passing, we, her siblings, were not able to find comfort and we kept crying over our loss. One day, a chashuva Rav shlita explained to us that it is not favorable for Bini’s neshama for us to keep on mourning and grieving. He advised us, instead, to thank Hashem for all the years we had her amongst us and derived so much joy from being her sibling!


Three and a half years later when our dear mother was niftar at age 90, we were able to fulfill her will and she was laid with respect in the last row of the Beis HaChayim next to Bini a’h. Our father’s a’h eternal resting place is in the first row near the Ohel of the Satmar Rebbe zt’l. Without a doubt, our mother would have been laid in a similar reverent spot as she would have deserved; her noble personality and beautiful reputation can testify to that.


Many people have told us how much chizuk they derive when they go to ‘tzind a licht’ at the 2 kevarim, of a mother and her child with Down syndrome, who were so close in life and are still so close forever.


L’ilui Nishmas:

Moshe ben Shulem Yitzchok

Ruchel bas Avruhum Zvi

Bina bas Moshe