Shortly after the past Summer DSAU (#32) published, I received a phone call from a ‘lucky’ Mom whose baby was just a few months old. This mother thanked me for the beautiful pictures in the magazine. She told me that while she was still struggling to come to grips with her new reality, including an exceedingly challenging medical journey that her baby was on, her typical fears for his future were tormenting her. Seeing the uplifting pictures in Down Syndrome Amongst Us of beautiful children and young adults with Down syndrome, her angst was eased. She then elaborated. She had previously received a pamphlet in the mail from an organization that services the special needs population. Her heart crumbled as she perused page after page of grown individuals with special needs. Most of them were not properly groomed and not aesthetically attractive. In addition, while she understands that it is the reality for many of our children’s futures, this Mom was disturbed that grown men with beards, some of them graying already, were featured painting child-like pictures. She acknowledged, albeit woefully, that while this is what possibly awaits her own child in the future, she doesn’t want it shoved into her face now. She then contrasted it with the photos of Yeshiva Bonim Lamokom’s students who appeared in the feature article on the yeshiva’s end-of-last-year’s siyum. Now, those were pictures to make one’s heart swell. Boys and young men were dressed to the nines, groomed, faces shining, they were participating in a Torah farher… Those pictures gave this mother hope and joy.
I heard what she said and agreed with her.
One day later I received a picture from a parent in Israel. Her son’s class, a group of bochrim with Down syndrome, was zoyche to visit Rav Chaim Kanievsky zt’l one month prior to the Gadol’s petirah. And there on the desk in front of Rav Chaim zt’l was a container of red lollipops that was prepared for the Gadol to distribute to the bochrim. I looked again and said to myself, “this picture is not going into the magazine”.
My conversation of the day before was all too clear: our children may be developmentally delayed, but we will not baby them. Certainly not for public viewing. And at that moment I scratched publishing the picture of the bochrim with Rav Chaim zt’l.
Our family experienced a beautiful Rosh Hashonah with Moishey and I wanted to share it with my fellow Lucky Moms on our chat. Many of the children – and mothers – are much younger than my family and they look out for the chizuk. After posting the details, numerous incoming texts pinged, with messages expressing gratitude and hope. And then a different type of text transmitted. It was from the Mom of a baby boy with DS and it read: Hi Sarah! A Gmar Chasima Tova. I want to comment on your message about Moishey. I am very happy for you and it might give chizuk to new parents…however, I had the opposite experience this Yom Tov. I was in shul davening, and from behind the curtain I saw an older bochur with Down syndrome. Oh, was he the source of laughter for many men…they made fun of him…How I cried this Yom Tov. It was ridiculous and extremely painful. I wouldn’t believe it can still happen in 2022. I think this will have an everlasting effect on me.
I was horrified. I read the text to my family and wrote back to this woman: I just read your text to my husband and he said that sometimes there is a fine line between making ‘choyzik’ or smiling along and humoring the individual with Down syndrome. For example, when Moishey made Kiddush in the largest shul in Williamsburg on Yom Tov for large crowds of people, there were many bochrim who were smiling, but my husband did not see it as jest, rather as humored appreciation for Moishey’s cuteness and lack of shyness.
She responded: I hear you. No, it wasn’t like that at all. They asked him silly questions, imitated his every cough, belched to egg him on, made him hyper and wild with niggunim, in a way nobody would do with a typical person. He was a real ‘choyzek’! In the beginning he davened so beautifully and I was so impressed, thinking that his tefillos are so pure they will surely take everyone’s along, until that yungerman and boys came along…
I turn to our communal leaders, I turn to the Rav of every shul, I turn to every menahel, principal, teacher, rebbe and educator – please talk to your constituents, congregants and students. Please sensitize them to those whose chromosomes are arranged differently. Please teach them about Kavod Habriyos. Please point out to them how blessed they are.
Our journey of restoring and commanding respect for our children with Down syndrome is at full speed ahead.
We are on a mission and we will leave no stone unturned.
See you next on July 5th ’23.
Warmly,
Sarah Sander
downsyndrome@earthlink.net