DOWN SYNDROME—STIGMA NO MORE
By Sarah Sander, publisher of Down Syndrome Amongst Us
Courtesy of Hamodia Magazine
Just as the last lichtele of Chanukah 5772 flickers and dances in its final dance, I am reminded of our own struggle to maintain light and brightness in our own lives when our endurance seemed to crumble before our own eyes. Twenty two years ago it seemed like every radiant sparkle we had known until then was extinguished, when our newborn baby was diagnosed with Down syndrome.
Our second child. Our first son. We were still asserting ourselves and establishing ourselves as adults, as a married couple, as a unified entity, dreaming grand plans for ourselves and our children, while just starting a family. We were learning about life, all the while still shrouded in our safe cocoon of happiness. So, when the doctor announced that our second child was a boy, our joy knew no bounds. Then, when our baby was 28 hours old, a doctor walked into my hospital room and unceremoniously broke the news to me that my beautiful baby had Down syndrome.
In one of those rare moments of open hashgacha, my older sister was in the next room, having given birth to a baby boy a mere four hours before me. After the doctor had delivered his message and left, my piercing screams and hysterical cries sent my neighboring kimpeturin racing for my sister. We collapsed into each other’s arms and cried and cried. Her words of comfort rang out through her own tears, “Don’t worry, Surika, we will always be there for you and we will help you love this child.”
The next morning brought a stream of doctors and social workers who wished to explain to me the ins and outs of this foreign land that now became our home. One social worker in particular came armed with brochures of every Jewish agency that served the developmentally delayed population. To me, all disabilities were still lumped together in one large pot, and all I could think of was individuals with stiff, contoured bodies, pain written all over their faces.
This is the life that my baby was going to live? My mind yelled, “Get out of here and don’t ever talk to me again!” but my proper upbringing forced me to listen as those professionals offered their nuggets of wisdom and support, which only sent me nose-diving into an abyss of despair. Thus started out one of the darkest periods in our lives, but baruch Hashem, it ultimately turned brighter than bright.
Convalescing at my parents’ home was fraught with emotion. We were all walking around on eggshells around each other. They were trying to be strong for me and I was trying to put on an act of strength for them. Yet, the message of those early days is what kept my husband and me afloat: both sets of parents wordlessly said: “Children, no matter what you decide, we will always be here for you and always support you in any way you may need us.” I knew they worried about us, but they never said so. All we got was a unified front and unrelenting support. It was the greatest gift they could have given us.
The immediate family was told at the first opportunity, and each member was mechazek us. Contrary to today’s blood tests, called a ‘chromosomal smash”, when Moishey was born it took three weeks to get the final results, which would either prove or discount the clinical diagnosis. During those weeks we attempted to keep our heartache a secret outside the immediate family. Even though Moishey displayed the trademark characteristics, we hoped that the test results would be negative…call it bitachon, or call it denial.
However, once Moishey’s DS was confirmed, we did not hide his condition. My husband and I decided that there was nothing to be gained, and lots to be lost, by keeping Moishey’s diagnosis secret. So I broke the news to each of my friends over the phone, after which we cried together. It was one of the most therapeutic times of my life.
Because we knew of no other young couples for us to be able to look to for advice or experience, my husband and I simply turned to each other. It never dawned on us that our baby’s living arrangements were optional and that a family can be “chosen” vs. being born into. Giving up our baby was never an option for us; he was ours, he was meant for us. We just had to figure out how to deal with the pain and how to become a happy family again.
It took time; it was a slow process. My husband bounced back a little faster than I did. I still vividly remember him walking into the house one night after Maariv when Moishy when Moishy was around three months old. I was washing the supper dishes while tears streamed down my face. My husband looked at me and asked in Yiddish, “Still? How much longer?” Shortly thereafter, I made a conscious decision to pull myself together and force myself to feel happy. I felt that my marriage, and ultimately my life, were being tested and the outcome was up to me.
My mother a”h, was a strong believer in ‘mind over matter’. It was now time to apply that adage and work on becoming happy.
After Moishey’s diagnosis I realized that I did not know of a single other young woman like myself who had a baby with Down syndrome. Where were these babies and who were their mothers? Was I really such an anomaly?
In my parents’ home, I came across an old medical journal and searched for “Trisomy 21”, which is the medical name for Down syndrome. There, in bold type, was the unashamed definition of my son’s condition—a moron. I slammed that journal shut and vowed at that moment to defy all statistics and labels that would limit my son for life.
As Moishy started to grow and we shed our cloak of misery, we actually reveled in the joy of raising him and watching his progress. While it was slow and frustratingly uneven, Moishey delighted us with his sweetness. It sometimes took a lot of effort to separate the baby from the syndrome and see Moishey for what he was—a sweet baby first, with a syndrome that was secondary.
Years later I gave birth to a baby girl who was born with a host of medical issues, which babies with Down syndrome are often born with. Moishey was a healthy baby baruch Hashem. I am convinced that before Moishey was born, Chanale’s neshama went before the Kisei Haklavod and pleaded on her brother’s behalf, asking Hashem that if Moishey was destined to have Down syndrome, then at least let her take over the congenital medical defects that usually come along with the syndrome.
So many times during the first thirteen difficult weeks of Chanale’s life, and during her two life saving surgeries, I thought about her and Moishey and realized something uncanny—as difficult as our life was then, no one dreamed of suggesting that we give her up. Why? Because she wasn’t cognitively impaired. The stigma of mental retardation in our society is so pronounced that people do not see anything past that stigma—there is no child, no person, no parents, no family, no potential, no levels of delay, nothing. Mental retardation? Get rid of it!
As Moishey continued to grow there were two mysteries that haunted me: Where were the other young mothers of babies with Down syndrome, and was there any uplifting, possibly frum literature on Down syndrome that would give my child the benefit of proving himself before classifying him as a moron?
I soon realized that these two mysteries were closely intertwined. In 1989, general support for the parents of DS children among frum families, coupled with information and shared experiences, was sorely missing. Without available help and guidance, new parents, particularly young couples, were being encouraged to give up their babies with Down syndrome. This was a sad realization and one that my husband and I knew had to be addressed.
The summer before Moishey turned six, I decided to publish a magazine geared to the frum community dealing with Down syndrome. Thus, Down Syndrome Amongst Us was launched in the summer of 1995. What began as a thin newsletter grew to be an eighty-plus-page magazine. Suddenly, people started coming out of tightly shut closets and a revolution started in the frum DS world. Letters began pouring in, telling tales of woe, shame, helplessness and dejection. There was a lot of work to be done.
Moishey, the protagonist of Down Syndrome Amongst Us, has been one of the catalysts of tremendous change in the “world” of Down syndrome. Gone is the shame associated with parenting and raising such a child. Gone is the stigma and ignorance, thankfully replaced with acceptance and knowledge. Our community is finally embracing our special needs children and they are thriving from the integration and approval. The two-pronged reward of this change is that these babies are now accepted into their biological families, where they are loved and raised with pride. And frum mainstream society has become knowledgeable and welcoming of these special individuals—a boon for both.
Down Syndrome Amongst Us has appeared in print fourteen times, sporadically. Over the past year and a half, I have not attempted to publish because the practical and administrative challenges have bogged me down. Guilt eats away at me; I have people writing and calling all the time, begging me to resume publishing—they say DSAU is their lifeline—but I cannot do it until those issues are resolved.
Hamodia is providing me with this opportunity to reach out to my readers and its own vast readership and find out how much interest there is in the rebirth of my magazine.
I see this as amazing hashgachah, an opportunity to disseminate invaluable information not only to affected families, caregivers, and educators, but to our community at large. There is so much that the average citizen needs to learn about this very special population, and this magazine covers it all. It ranges from the simple delivery of information—about the value of every human being—so that we can convey this crucial message to our children, to presentation of the fiery controversy regarding inclusion va segregation, keeping DS home vs giving them away; and it includes humor that can make you laugh until the tears roll down your cheeks.
Today, Moishey is twenty two years old. He is a handsome, bright young man, ka”h, and he is the joy of our lives and the apple of our eyes. He is adored by all our immediate and extended family, and he is one of the most popular members of our shul. Moishey enjoys life to its fullest, with nary a complaint or a problem vis-à-vis his surroundings (okay, okay, so occasionally he does get into a fight, like this week when he sent me a text message from yeshiva: Mommy, I need to ask you a favor—if A. calls, please don’t pick up the phone—it’s all his fault!)
His simchas hachayim is brighter than the sunshine on a hot July afternoon and his spirituality often makes ours pale in comparison. We are awed as we observe his utter ahavas Hashem, his endless singing of zemiros and his purity of soul.
Just last Shabbos my husband introduced an out-of-town Rebbe who came to daven at our shul to Moishey. My husband said, “Moishey, do you want to be this Rebbe’s gabbai?” Moishey answered, “No, I want to be a Rebbe myself.”
It is important that we all become acquainted with these very special neshamos, for the statistics are alarming, and the frequency of DS births in the frum community is rising.
You can contact Sarah at:
Down Syndrome Amongst Us
32 Rutledge Street
Brooklyn, New York 11211