Issue #32 – Editor’s Message

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

My husband and I attended a Shabbaton a couple of months ago. The theme of this Shabbaton was not related to special needs at all.

On Motzei Shabbos, during Melave Malka, one of the weekend’s most dynamic speakers got up to give his closing remarks. He mournfully relayed how, as is an all-too-common-occurrence with popular speakers, many parents approached him during the course of the weekend, decrying their struggles with challenging and rebellious teenagers. The speaker then said he will share a story with the audience, which will hopefully provide chizuk for said parents.

A Rav was attending the bris of the baby of one of his constituents. The baby was born with Down syndrome. The Rav got up to speak at the simcha and said, “The ways of the world, the ways Hashem created the universe is for ‘Olem Chessed Yiboneh’; we are here to do chessed and to give and give and give without expecting anything in return. With our typical children we are often rewarded with nachas that they bring us, but with this child with Down syndrome you will totally be fulfilling the dictum of Olem Chessed Yiboneh, with no nachas in return, but completely fulfilling your tafkid on earth.”

I sat there, shaking my head in disbelief. Was this really what new parents were told at their baby’s bris? This was intended to comfort them? They gave birth to a chessed case and nothing more?

I didn’t have the time nor headspace to continue my silent rant because my attention was drawn to the podium as the speaker thundered on, “Dear Parents, I told you this story as an example to apply to yourselves. When your teenagers are behaving in ways that bring you tzar (aggravation) just remember what I told you about having a child with Down syndrome; it’s not about receiving nachas from them – it’s strictly about giving and giving and doing and doing…”

He then stepped away and I bristled. Here was a good person who spoke about a topic that he obviously knew so little about. I was sitting with a large group of women at a shared table, and most of them knew about Moishey. Many of them asked, “Aren’t you angry at what he just said?” and I answered, “No; I am not angry. The poor man is so ill-informed.”

Unbeknownst to me, my husband, on the other side of the mechitzah felt the same way. Several minutes later, he followed the speaker out to the hallway. My husband stopped the gentleman and kindly told him that we have a son who was born with Down syndrome and he is much more of a ‘nachas machine’ than a ‘chessed machine’. My husband pulled out his phone and showed the gentleman several brilliant and endearing texts that Moishey had sent him. The speaker was, for the first time in his life, speechless! He apologized profusely and begged my husband to send him more tidbits and anecdotes about Moishey via email.

We need to continue educating society about our children and the role they play in our lives. Despite the challenges, despite the struggles, despite all the giving and doing, we are getting so much more in return.

The picture features in this magazine bear witness to the love and joy our special needs children bring their families. The ‘Yiddish Nachas’ and ‘Purim in July’ photo articles are increasing exponentially, with each new edition of Down Syndrome Amongst Us. I get hysterical emails past deadline date that read, “Hi Sarah! I just realized I missed the picture deadline! My family will never forgive me if my child’s picture isn’t included…please…can you still accept it?”

The beauty of a community coming full circle – from cowering behind locked doors and drawn window shades, to begging for their children’s pictures to be published. Thank You, Hashem!

As you comb through the magazine you will encounter an ad from ABC-DS. I am proud to have been contacted by this agency and to be part of something so monumental in the lives of individuals with Down syndrome. While the statistics are not always pretty, we have to look challenges in the eye and face them realistically. Individuals with Down syndrome purportedly age prematurely. Some scientists firmly believe that by age 25 changes start occurring in the Down syndrome brain. Others claim the changes start only at around age 45. Moishey, at age 32, is somewhere in between. We, as a family, certainly plan to join this study and we hope others in the community will too. With no invasive procedures, we owe it to our children and to future generations to assist in research aimed at improving the lives of our children with Down syndrome.

The sun is shining, ice cream and swimming pools are beckoning, but please remember to email your children’s Chanukah licht-tsinding pictures on the very first morning of Chanukah. The schedule will be very tight in regard to the publishing date of the upcoming Winter edition of DSAU, so time will be of essence!

See you again on January 4, ’23 iy’H.

Sarah Sander