The Voice of Experience
By Rabbi Boruch Rabinowitz
Transcribed from a Speech Given in December ‘94
This past Shabbos my son, Nota Shloima turned four years old. My son, Nota Shloima is a child with Down syndrome. That’s the syndrome where G-d took away a little bit of ‘seychel’, a little bit of wisdom, and gave an overdose of joy. It’s the syndrome they used to call Mongoloid idiot. That ‘Mongoloid idiot’ has now become ‘a child with Down syndrome’.
The child that used to be institutionalized is now with his family in a home environment. The child who used to be called the ‘shtodt’s nar’, the town’s fool, is now part of our community. Today, with modern medical care, the child with Down syndrome has an almost normal life expectancy. The child who may have once been the object of ridicule is now learning in a cheder in Boro Park, and in Beis Medrash, learning Gemara with a Rebbi in Yerushalayim. These are the children and adults who used to be deemed as ‘useless’. One adult who has Down syndrome is now a kitchen manager in Yeshiva Kol Torah in Yerushalayim. A type of person who was once labeled as hopelessly incompetent is now a worker at G & Sons, a teacher in Yeshiva Ohr Shraga, and a secretary at the OU.
The birth of my son Nota Shloima brought tremendous joy to our lives, and it has had a profoundly positive effect on my entire family. He has brought a measure of joy and ‘simcha’ to our lives. The joy of bringing him to shul and dancing on Simchas Torah together with him, where he grabbed and kissed and hugged the Sefer Torah is indescribable. Members of the shul would watch and run over to him with a Sefer Torah to see how he dances with it and hugs it. He runs around to people saying, “Kiss, kiss my tzitzis, tzitzis, tzitzis.” Just a few days ago, on Chanuka, he stood there mouthing and vocalizing the words of the ‘beracha’, proudly lighting his own Chanuka menorah. He imitates his siblings and says a ‘beracha’ before eating anything and on Shabbos he sits with the rest of us, clapping, banging on the table and singing zemiros.
Nota Shloima is a child like any other. He plays and he fights with his siblings and just like the others, has his own strengths and weaknesses. Just as the others have contributions to make, so does he. In his own unique way, he brings joy to us all.
But it wasn’t always that way. Actually, the initial reaction was quite different. Twenty minutes before midnight on December 31, four years ago, I looked at him lying on the table right after birth and saw certain difficulties, certain problems and things that didn’t quite look familiar. I thought – what’s wrong? What happened? Something is not right. We spent hours looking and checking. The doctors weren’t open with me at that time, but I knew something was amiss. Finally, at 3:30 a.m. I walked out of the hospital, into the pouring rain. I looked up at ‘shomayim’ and when nobody was able to see my tears, I cried out saying, “Why, Hakodush Boruch Hu, are you punishing me? Why this ‘onesh’? What did I do to deserve such a punishment?” I stood there in the street looking up at ‘shomayim’, crying…
The next day I thought – maybe it’s not an ‘onesh’; maybe it’s a ‘nisoyon’. I walked around the Beis Medrash in Boro Parking saying, “I can’t handle this ‘nisoyon’. I don’t want this test. I don’t deserve it.” Now, sometimes, looking at myself, I wonder – did this really happen? In discussions with my wife, we said, “Life will never be normal again.” My wife refused all phone calls, even from her own parents. Flowers? Far from her thoughts! My wife – the most dedicated and ‘eidele Yiddishe Mama’ revealed then, in the hospital to me, that she wished the baby would die. She lay in the hospital saying, “I don’t care what happens to any of my children now; just leave me alone.” I asked her in what clothing I should dress the others for school the next day and she answered, “I don’t care if they go to school naked.” It was so out of character!
Others in similar situations react similarly – “Why me? I never won the lottery before.” Some people are filled with a tremendous amount of embarrassment. They’re embarrassed to walk in the streets with a disabled child. They see it as a stigma. He has funny eyes…He walks differently… Some people tell me that they worry the child is going to destroy their ‘sholom bayis’. Some women have even said, “My husband is going to blame me for the rest of my life.” Some claim that the child is going to destroy the lives of the other children in the family. It’s going to build resentment and kill friendships; they’ll be embarrassed to bring friends home, and certainly one of the biggest concerns, “I won’t be able to find any ‘shidduchim’ for my other children. Nobody is going to marry in to a family with a disabled child.”
I know a ‘yungerman’ from a kollel in Yerushalayim who came to see us. He sat at our table, and though it’s hard to repeat, said these words: “G-d made a mistake. He gave me the wrong child. I have to give this child away, because with Hashgacha Pratis, the child will end up where it was supposed to be in the first place.” Others have told me, “Why should I keep this child?? He’ll never be a ‘talmid chacham’ anyway.” People are filled with fear, ignorance, and yes, a tremendous amount of pain.
The difficulty of those days right after the child’s birth is sometimes magnified by the medical professionals, family and certain Rabbis who come and say, “Why take this child home?? Life is going to be much more difficult if you take him/her home. Leave that baby here in the hospital. Tell people the baby died. It’s a lot easier that way. You’ll forget. You’ll have other children.”
Many in the community compound the pain when they react to the news of such a birth in silence without calling, wishing Mazel Tov or offering help and support.
My wife and I went around very confused. I couldn’t teach, think or daven straight. Finally, the second night after the birth, I called my Rebbe, R’ Moshe Schapiro from Yerushalayim. “Rebbe”, I said, “I’m calling you with good news and with bad news”, to which he answered, “Give me the good news first.” I said, “Ess kimt mir ah Mazel Tov (I get a Mazel Tov). My wife had a baby two days ago.” He wished me Mazel Tov and all the standard brochos that I should be zocheh lehachneeso bivriso bizmano u’l’Torah u’l’chuppah u’l’maasim tovim. Then he asked, “And what is the not-so-good news?”
“The baby appears to have Down syndrome,” I answered. Without skipping a beat, my Rebbe said, “Ess kimt eich ah dupelteh Mazel Tov (you get a double Mazel Tov).” I heard these words as they came crashing into my system. Mazel Tov?? I don’t want to hear that! I’m talking about a woman who says she hopes the baby will die, and someone is telling me Mazel Tov?! That’s not what I want to hear now! But my Rebbe kept on talking, slowly and calmly. “Taggid li (tell me), how old is your wife?” “Twenty eight,” I replied. My Rebbe said, “That means that her chance of having a child with Down syndrome was one in 1200. Now, isn’t that Divine Intervention? Isn’t that Hashgacha Pratis for you and for your family? Is there a greater Hashgacha Pratis? You beat the odds!”
We spoke for almost an hour and a half on the phone. “Boruch, this child is designated for you. He is a very lofty soul, a high ‘neshama’ an elevated spirit. He’s a child that is pure truth, pure happiness. ‘Gei aheim’ (take him home); ‘Er is a brucha in shtib’ (he is a blessing in your house). ‘But, Rebbe,” I asked, “how is it going to affect the other children?” “Only in a positive way, “my Rebbe answered. “They’ll become more sensitive, warm, compassionate and more understanding and appreciative of each individual’s uniqueness. They’ll understand that when you say ‘Borei Kol Haneshamos Ribon Kol Hamaasim that Hakodosh Boruch Hu creates every ‘neshama’ with its own uniqueness.” Then finally, I had the guts to ask a question that was deep inside me, which as I look back now, sounds pretty silly. I asked, “Rebbe, is his ‘neshama’ damaged? Is something wrong with it?” And he said to me, and I quote, “Boruch, I see that you are still confused. Could Hakodosh Baruch Hu create a neshama that’s not pure, that’s not complete, that’s imperfect? That’s an impossibility! But, I see you’re still confused. Believe me – accept ‘be’ahava’ and soon you’ll accept him ‘besimcha’ We’ll speak again in a day or two.”
Boruch Hashem that I had someone to turn to who flipped me upside down and put me right side up again. But, for many cases, the statistics show otherwise. Each week in our New York area there is a need for three to five Jewish homes for people who cannot or don’t want to take home a child who is disabled. Steve and Vicky Kraus of the Jewish Children’s Adoption Network in Denver tell me that they receive over 200 calls a year to place for adoption disabled children. Just a few weeks ago they had five in one week from Maimonides and Mount Sinai hospitals. Just a month ago, my own son was hospitalized with pneumonia. Under our very eyes, one couple abandoned their child and one family gave theirs away. Three thousand children who have Down syndrome have been left abandoned in hospitals or given away to ‘goyim’ between the years 1980 and 1993. Frum children! Janet McKazy of the Catholic Adoption Agency says that seventy to eighty percent of their clients are Jewish children. A social worker in Maimonides Hospital said to me, “I cannot understand. People who say that because of their religion they won’t have amniocentesis, they won’t allow abortion, but they can just get up and leave the hospital and leave the baby behind?!” A physician who has practiced her entire life in inner city hospitals said to me, “The only people who abandon children in hospitals are drug addicts.” The Mormons in Salt Lake City await with open arms to adopt all Jewish children. It’s their goal in life to put a cross on every chest. Over fifty Jewish children with disabilities are now in Utah with the Mormons.
Yes, the initial shock at birth is great. May people have well-founded fears, and yes, there’s a lot of pain. There is a tremendous amount of emotional turmoil. And, while there are some who have given away children right after birth and profess to suffer no after effects, the reaction of other mothers is frightening: guilt, nightmares, people who worry about shalom bayis. I’ve heard countless stories of husbands who forced their wives to give away their children right from the hospital and to live the lie that the child is dead. Just a few weeks ago in Maimonides Hospital, in the lobby, there was a family that had a child with Down syndrome and the husband insisted that he was not taking this one home. And in the lobby the wife stood there crying, “I want my child, I want my child; he’s mine!” And the husband said, “You’re not taking this child home!” He held the adoption papers that the people from the adoption center sent right there, and he forced her to sign the papers. Will he have shalom bayis?!
There is a mother in Brooklyn who has eleven children. Her eleventh has Down syndrome and her husband forced her to give the child away. They gave the baby away for foster care in Boro Park and every single week she brings the siblings to visit the child with Down syndrome and she tells them, “This is your sister. Never forget her.”
Just this week there were countless calls coming in on the phone. A woman said to me, “I am not coming to the lecture, but I want you to tell my story. Fifteen years ago, I gave away a child right from the hospital. And for fifteen years I’m seeing a psychiatrist, psychologist, therapists and now I’m almost at the limit of what I am allowed to take in Prozac. My husband has been forced to take in two housekeepers because I haven’t functioned for fifteen years.”
There was a woman who came to me in Maimonides Hospital when I was there a few weeks ago, asking many questions. Finally, I put two and two together and I realized that this was a woman that I once heard about who gave away her baby at birth and told people that the baby died. The baby is actually in a foster home here in Boro Park. This woman asked me many questions and looked at my son as she spoke. “What does he do? What can he do? What are his capabilities, and what about the future?” Too many questions for the average person. I said, “Do you have a personal interest in Down syndrome?” And she said to me as follows, “I had a child with Down syndrome a few years ago. Baruch Hashem, he died before he was thirty days old, so I didn’t have to sit shiva.”
There was another woman with whom we spoke some time ago. She ended up giving away her child right after birth. People begged her not to do it, to wait a few months. “Give yourself a few months to make a decision.” But she gave the baby away. This week someone called on her behalf and told us that this biological mother just lost a six-month court battle trying to get her baby back. The adoptive parents won custody.
Siblings: The well-known story from the Midwest – After one family was contemplating giving away their child, the seven-year old came to the parents and said, “Will Abba give me away if I’m not perfect?”
Some people say it’s the community reaction that influences their decision. “I want to take the child home, but there is no one else with a Down syndrome child in my shul.” Others become prisoners in their own homes, because of community reactions, because of people looking askance at somebody who has a disability. There was one family on the west coast that I met a couple of years ago when I spoke about my son. They were prisoners in their home for three years. When I spoke openly that I have a son with Down syndrome, they came over to me that night and said, “How do you speak about it so publicly? We’re hiding for three years. Nobody knows that the baby exists. My wife and I haven’t gone out at the same time for three years. My kids can’t have friends coming home. Chas vesholom they should find out that we have a child with Down’s at home.” We worked it out with them and a few weeks later they made an official announcement that they were adopting a child with Down syndrome and they made a big Kiddush in their shul.
There are others yet who have overcome their initial fears, and they found that there was outstanding personal growth and a tremendous amount of sibling sensitivity because of the special needs child in their home. Recently, people have told me of some very special people wanting to be ‘meshadech’ with such families because they know that the children in such families were brought up in an especially sensitive home.