Love Syndrome

Mishy Harman (narration): Despite the occasional sweet­-n’-­sour pork at home, Chaya’s family was actually pretty traditional. She attended a yeshivah, or religious high school, where her mom taught. But when she graduated, Chaya, whose name at the time was Enid, kind of rebelled. She didn’t do what her mom had hoped, or what was expected of a girl with that upbringing. You know, getting married to the Sapersteins’ lawyer son, having a bunch of kids, making potato kugels for the kiddush at shul. She just knew that wasn’t for her. So instead, she moved as far away as she possibly could.

Chaya Ben Baruch: I decided that I was going to go learn in Alaska,​  that’s the place where the Eskimos live.

Mishy Harman (narration):​ Now, not that many people just up and go to Alaska. Especially not from Enid’s community. It’s far, it’s freezing, it’s dark half the year. But Enid wanted to become a biologist. And specifically, she wanted to study sea otters.

Chaya Ben Baruch: What really attracted me to the sea otters was​ the fact that the sea otter mom takes care of her baby for a whole year inside the water, and I knew moms that didn’t take care of their babies for a whole year outside of the water. So I really wanted to learn about this animal.

Mishy Harman (narration):​ Enid enrolled in the University of Alaska ­ Fairbanks, and that’s where she met Chet, or Charles, her first husband.  

Chaya Ben Baruch: He was a university professor in psychology.​

Mishy Harman (narration):​ By this time, Enid had basically left the world of Judaism.

Chaya Ben Baruch: My family was pretty upset that I married​ someone who wasn’t Jewish. I actually had an uncle that told me that I was better off buried than I was married.

Mishy Harman​: Oh, wow, what did you think when he said that to you?

Chaya Ben Baruch:​ I didn’t that was totally fair, ‘cuz I remember he was a doctor and he had a nurse friend, who was very close to him, who happened to have been Protestant, so… He wound up married a Jewish woman, though.  

Mishy Harman (narration):​ Despite the lack of support from home, Enid continued on with her life. She and her husband had three children,

Chaya Ben Baruch: And, unfortunately then we got divorced. I never​ expected to get divorced. And then Stan came into my life. I say Mr. blue eyes came into my life.

Mishy Harman (narration):​ Stan, that same man in black clothes and a patchy beard, is sitting at the dining room table, flipping through some old photo albums. I imagine that if Alaska were a person, that person would look just like Stan. He’s tall and burly but so soft spoken that you have a take a step closer just to hear what he says. In his previous life, in Alaska, he was professional salmon fisherman, and in all the pictures he shows us he’s hiking in the middle of wild nature, wearing plaid shirts and cut off jean shorts. He gets to a picture of his hometown.

Yisrael Ben Baruch: ​This is what’s called the Goldstream Valley, it’s in the central part of Alaska, it’s where I spent most of my young life. And this is…

Mishy Harman​: Wow!

Yisrael Ben Baruch​: Ninety­six miles south of the Arctic Circle. And this is where I grew up. I grew up in such a small town that I never met, knowingly, a Jewish person. But I was born into a very religious family, a very, a Catholic family, my parents were very orthodox. And so that gave all of us children a very strong connection to religion in general.

Mishy Harman​: So you grew up going to church every Sunday, and…

Yisrael Ben Baruch: ​Right, very very orthodox. Even in the coldest day of winter we would go. And then like many young people I kind of went off the “derech” and I did a lot of adventures.

Chaya Ben Baruch: Actually Stan was a student of my first​ husband.

Mishy Harman​: Wait, so your second husband was a student of your first husband?

Chaya Ben Baruch: My second husband ​ [​Mishy laughs] ​yes, [Chaya laughs]​ was a student of my first husband, but I didn’t have anything to do with him before.

Yisrael Ben Baruch: I was in university, and one night I went to​ a New Year’s party, and I was standing in the kitchenette and it opened out into the salon, and on the other side of the salon this young woman walks in who I had never seen before. I didn’t know who she was, and I thought I don’t know who this young woman is but she is exceedingly beautiful. And it wasn’t just her physical beauty but also I could sense that she had some sort of quality about her that was very very unique and special. And that’s Chaya. Unfortunately, she was already married, so she wasn’t available. [Mishy laughs].​ So I went my way, and she went her way, and then some years went by and I travelled back to my hometown, where I grew up, and where she had been living, and unbeknownst to me she and her first husband had separated, I didn’t know that. So I walked into the public library and I hear a woman’s voice behind me, and I turn around, it’s Chaya. And she said, “Well, I just thought you’d like to know my husband and I are not together anymore,” and so I thought…

Mishy Harman​: I’m sure you did like to know that. ​[laughs]​.

Israel Ben Baruch:​ I didn’t say this, but in my mind I said, “Ah, this is the woman I’m going to marry.”

Chaya Ben Baruch: So we started to talk, and we started to go​ out. And I knew that I was falling head over heals in love with him. All the years that I had been with my first husband something in my heart had closed up, and something was definitely opening up, and I just, I didn’t want it to hurt. And I remember I said to him, “If this relationship isn’t going anywhere permanent, just get out of my life right now, ‘cuz I didn’t want to introduce him to my children, and I didn’t want my heart to be broken, and… I think we were only just two weeks into the relationship.

Mishy Harman​: Two weeks?!​ ​What did he say when you said that to him?

Chaya Ben Baruch: Um… He said that he wanted to marry me.​ [Laughs]

Chaya Ben Baruch: ​That was in June, and in December we got married. He said to me that he wanted three children, I said to him “I have three children.” He said yes, I also want three children of my own. I’m happy to have your children, but I also want three children of my own.

So then we had Ari, and after that we had Daniel, and then I miscarried twice, my father had died, and a month after that Stan had lost his father. And I remember going into the forest in Alaska, I was basically going to talk to God.

In Hebrew we call it “​Hitbodedut.” ​And so I went out ​into the woods and I screamed at the top of my lungs, “I’ve had enough. I can’t handle any more. But obviously God thought something else because the next pregnancy I was nauseous for sixteen weeks, I had to have I.V. infusions. Every three days the nurse would come and put it in and I would take it out, that kind of a thing.  And the joke was that this kid had given me enough ​tzores​, enough problems, until hewas at least eighteen years old. [Mishy laughs] but that’s not exactly what happened. All of my prayers were for a live baby. I didn’t pray for a healthy baby. ​​In Hebrew we usually say “Bari,​ shalem, vechley vecholey​,” I didn’t pray for that. I just wanted a live baby, because I had had these two miscarriages, and for me I lost two babies.

Mishy Harman (narration): ​In the beginning of November 1991, when the snow in Alaska was already starting to barricade their door, Enid gave birth to Angour, her sixth child, and third with Stan.

Chaya Ben Baruch: And when the baby was born, I saw that his​ ears were kind of folded over.

Mishy Harman (narration): ​Enid had heard that that was one of the signs of Down Syndrome.

Chaya Ben Baruch: I think more than anything else it was one​ of those mother glitches, where I just kind of felt it intuitively.

Mishy Harman (narration): ​She turned to the midwife.

Chaya Ben Baruch: So I just asked her, I said “Susan, do you​ think he’s got Down Syndrome?” And she looked at his hand, and he didn’t have the typical simian crease that kids with Down Syndrome have, and his muscle tone was actually pretty good, he was actually nursing. So she said, “You know, just take him home and love him, and, you know, we’ll see what happens.”

Mishy Harman (narration): ​We’ve all probably seen or known people with Down Syndrome. The Syndrome, which was first described by a British physician, John Langdon Down, in 1866 is characterized by a whole range of physical and cognitive disabilities.

Chaya Ben Baruch: A person with Down Syndrome has an extra​ chromosome, so instead of having forty­six chromosomes in every cell, they have forty­seven.​ ​What happens then is often times forty percent of these kids have problems with their hearts, they have problems with their digestive tracts, some of them have pointy eyes, some of them have flat nose, ​​most of the time very very straight hair, and they have a finger or a toe that’s a little crooked.

Mishy Harman (narration): ​They also have compromised immune systems, and a whole host of other health issues. But on top of all this, most people with Down Syndrome have low IQ’s, ranging from what is considered mild to severe intellectual disability. For centuries people thought that you can’t teach children with Down Syndrome. Just train them.

Chaya Ben Baruch: A lot of people put their kids in institutions,​ they don’t have a father, they don’t have a mother. The staff is continually changing, and they don’t have any expectations of them and so, so they act like whatever the expectation was. If I had been put in an institution when I was first born, first of all I don’t think that I would be alive today, and second of all, I’d be a mefageret ​ ​too, I’d be be retarded as well.

Mishy Harman (narration): ​Today, of course, the whole attitude toward the Syndrome has changed. We know that it isn’t hereditary, or ­ as people used to think ­ contagious. And with the advances in testing during the pregnancy, the prevalence of Down Syndrome has gone way down. Statistics in Israel show that about one in eight hundred pregnancies is of a baby with Down Syndrome. Officially about ninety-­five percent of pregnancies with a suspicion of Down are terminated, but the actual number is probably higher. Most of the Down Syndrome babies that are born come from families from the more traditional segments of the population ­ Bedouins and the Ultra­Orthodox ­ who either get tested less, are more opposed to abortions, or both. The thing is, Enid actually did get tested. And the results came back completely normal.

Mishy Harman: ​So how is it that the screenings that you did during your   pregnancy didn’t show that he was going to have Down Syndrome?

Chaya Ben Baruch: Well, because at this point in the game the​ Alpha-­Fetoprotein Test has an eighty percent accuracy rate, so I was in the twenty percent that wasn’t accurate. I also did an ultrasound in the twenty­first week, and they didn’t find anything. But to me it was a miracle.​ ​I bonded to my baby. I didn’t bond to the Syndrome. And I think that made all the difference. I didn’t have a doctor saying to me, “Oh, I’m sorry Mrs. Ben Baruch, you know you have this child that’s not going to be able to do this, and all he’s going to be able to do is, you know, work in McDonald’s, or that kind of a thing.” It’s just… For me it was totally different.

And what happened was, a week later my midwife came and she checked the baby, and it turned out that she heard a heart murmur. So we went back to the doctor’s and it turned out that​ he’s going to need open heart surgery. My whole​prayer, throughout the whole pregnancy, was a live baby. Here I was, holding this baby that I had bonded to, and loved. And he was going to need open heart surgery, and I didn’t know if he was gonna live.

Mishy Harman (narration): ​The experts in Alaska weren’t set up to perform the complicated procedure on a tiny heart, so Enid flew with Angkor to Portland, Oregon. After six hours in the operating room, the doctors finally came out and told her that the surgery was a success. Four days later, they were back in Fairbanks, and slowly Enid and Stan got used to their new life taking care of a child with Down Syndrome.

When Angkor was five months old, Enid went to a conference for parents with special needs children. There were counselors, social workers, professionals sitting at booths and handing out flyers, and, of course, many parents who shared their experiences. Just by chance, Enid heard a mom tell her story. She had had twins with Cystic Fibrosis, who both died when they were teenagers. When she was clearing out their room, she found a journal they had written together.

Chaya Ben Baruch: The mother said, “Wow, it was so good that​ one had the other, they didn’t go through this sickness alone.”

Mishy Harman (narration): ​Most people, I guess, would just be really touched hearing that mom tell her sad story. But Enid, you are probably starting to realize, isn’t most people.

[beat]

Chaya Ben Baruch: So I’m a twin, and I went back from this​ conference and I told Stan, “We’ve got to adopt another baby with Down Syndrome so that Angkor won’t be alone!” And I think he swallowed twice and he said to me, “Well… that’s ok, but, but can we just get over open heart surgery first?” I was really chutzpahdic​, I wanted somebody else’s kid so that my child’s life could be better.  

Yisrael Ben Baruch: ​I thought it was a wonderful idea.

Mishy Harman:​ Really?!

Israel Ben Baruch: Yeah. I said I wish I had that idea. Cuz’ it​ was brilliant!

Mishy Harman (narration): ​As far out as that idea sounds, it actually makes a lot of sense. Enid basically wanted to adopt a little friend for Angkor. Someone who’d know what he was going through, what he was feeling. But not everyone supports that approach. One of its strongest opponents is Professor Reuven Feuerstein, a world expert on Down Syndrome, who devoted his entire life to the exact opposite idea. Feuerstein was a student of Carl Jung and Jean Piaget in Geneva, received the Israel Prize, and was one of the chief designers of special education in Israel. I spoke with him in his office in Jerusalem, just a few months before he passed away, this Spring, at the age of ninety­two. I asked him whether he believed it helped children with Down Syndrome to live, and grow up together with, other children with Down Syndrome.

Reuven Feuerstein: ​No! Absolutely not! Children with Down Syndrome ​[here he goes does to an under, and an actor dubs the rest of Feuerstein’s answer] ​need a heterogeneous environment. A talking environment. They need to be with regular children, who play differently, so that they can end up reaching much greater achievements than those they were expected to. For many many long years, I’ve been fighting against the attempt to homogenize them, to put them with other people with Down Syndrome.

Mishy Harman (narration): ​But Enid was sure that this was the right thing to do for Angkor.

Chaya Ben Baruch: This is my baby, he needed me, and I was​ gonna fly to the moon if I needed to so that his life would be better. And for me that was the answer.

Mishy Harman (narration): ​They started the process of adoption, meeting with social workers, welfare officers, the whole thing.

Chaya Ben Baruch: There’s a Down Syndrome exchange in New​ York ­ anybody who wants to give up a baby with Down Syndrome, anybody who wants to get a baby with Down Syndrome, you go through the paperwork. And exactly on Ankgor’s first birthday, a family came to us, from Anchorage: A mother, a father, a grandmother, a four­-year-­old brother, and a nine-day-­old baby girl. Blue eyes, blond hair.

Mishy Harman:​ With Down Syndrome?

Chaya Ben Baruch: With Down Syndrome, um-­hm. And the family came to us, we thought they were just checking us out. They came at ten o’clock, and at two thirty in the afternoon they left her in my arms, and they left. And she remained. And I’ll never forget, the four­year­-old, screamed at the top of his lungs, when he realized that his baby sister was gonna be left, and she wasn’t going home with them ­“Don’t leave my baby.” It was just really really hard to hear that.

Mishy Harman:​ How did you feel being the person that was taking the baby?

Chaya Ben Baruch: Well, on the one side, I was this ​chutzpanit​ that wanted this baby for my child to have a better life, and on the other hand, it was just so sad, that this little boy was not gonna have a little sister.​ He didn’t expect his parents to leave his baby​ sister, and we certainly didn’t expect them to leave her in our arms, but that’s what happened. ​​We called her Keren, her biological mother had nursed her and this was November in Alaska, I didn’t have any materna in the house whatsoever, and she certainly wasn’t gonna take a bottle, so I started nursing her, and Angkor was jealous so wanted to nurse too, and so I just nursed the two of them together. ​​And actually I have some very un­tzanua​, how do you say ​tzanua ​pictures, unmodest pictures that I remember taking that they’re actually holding hands while both of them are nursing.

Mishy Harman (narration): ​Enid, you remember, came to Alaska to study the sea otters and their mothering patterns. And, the more she tells her story, the more that makes sense. Because sea otters, as she said before, have an unbelievably strong sense of maternal responsibility.

Aviad Sheinin: ​Yeah, the sea otter they have very good bond between the mother and the calf.

Mishy Harman (narration):  ​That’s Dr. Aviad Sheinin, the chairman of the IMMRAC, the Israel Marine Mammal Research & Assistance Center.

Aviad Sheinin: ​The mother takes care of all the needs of the young calf, especially food. They need to feed a lot during the first year, it’s the main growing time for them. Unfortunately, most of them don’t make the first year, only about quarter make it through the first year. And a very interesting phenomenon that we see in sea otters that the mother takes care of the dead calf after he died. Usually in mammals, when the calf died, it just leaves them. But in this, because the bond is so strong, she tries to keep maintaining the calf for a few days after they’ve been dead, as if she would do if it was a newborn. I guess the feeling and the need to take care of the baby is so strong that even if it is dead she still try to.

Mishy Harman (narration): ​That determination, doing something kind of crazy for your offspring, well, it all sounds kind of familiar.

Chaya Ben Baruch: All I know is that it was the right idea at the​       time. The minute that I saw the two of them together, I knew it was right.

Mishy Harman:​ So, Keren and Angkor actually grew up…

Chaya Ben Baruch: Like twins.​

Mishy Harman: ​And was there any difference in the way that you felt towards Angkor who was your biological son and the way you felt toward Keren who was adopted?

Chaya Ben Baruch: I think it took me a couple of days of​ nursing her and realizing that her mother wasn’t gonna walk through the door and say “I’ve made a mistake, I want her back.” And then she became my daughter. Our daughter. ​​And in my heart I don’t think that there’s ever been any difference since that moment.

[Music comes up].

Mishy Harman (narration): ​Act Two: Tzfat.​ If you are just joining us now, we’re telling the story of Enid. After her sixth child, Angkor, was unexpectedly born with Down Syndrome, she decided together with her husband Stan, to adopt another baby with Down Syndrome, Kirin.

In Fairbanks, Alaska, where they all lived, it wasn’t easy to raise two toddlers with special needs. They didn’t really have a good support system. So Enid and Stan began searching for a new, perhaps more accommodating, community. They started off by visiting these Christian agricultural communes, where people with special needs are integrated into host families. They even found one place they really liked, in Minnesota, but they were rejected, because they had two special needs kids of their own, and ­ at least this is what Enid thinks ­ because they were Jewish. They didn’t really know where to turn next.

Chaya Ben Baruch: So I joked with my husband, and I said​ “Well, heck, if Minnesota doesn’t want us, why don’t we just go live in a kibbutz in Eretz Israel?” You know, if we lived in a kibbutz and they didn’t have a car, or they worked in the library, or they worked in the laundry, I mean that could be a full life for them, and I thought it could also be a safe life for them.

Mishy Harman (narration): ​Enid contacted Kobi Sharon. He was the Jewish Agency’s immigration representative in Northern California.

Kobi Sharon: I’ve got a call… a phone call from Chaya to my​ office in Oakland, in which she told me that she want to make aliyah ​to Israel. And I ask from where are you? And she says from Fairbanks, Alaska. “Oh great! It’s far away!”

Mishy Harman (narration): ​Enid told Kobi that a few other Jewish Agency representatives had turned her down the minute they heard about Angkor and Keren.

Kobi Sharon: I guess that people thought, why do we need such a family, that will cost the country so much money. And ah… It’s better that they will stay in Alaska, and America will pay the money for them. But I thought the other way. I told her, “Listen, ah… the Down Syndrome for me it’s not a problem. Ah… I just have one condition ­ that I’m not making ​aliyah ​over the phone, you must come yourself to San Francisco and interview in San Francisco.” And she said, “OK, we’re coming!”

Mishy Harman (narration): ​In the end, rather than have all the kids schlep to California, Kobi came to them, in Alaska.

Kobi Sharon: The night we arrived was a snowstorm. And the​ temperature was down to minus forty. I was dressed the most warm that I could, and it was sneakers and jacket. And when they saw me in the airport, they laugh at me. But it was a magic night. It was aurora borealis night, and it was amazing.

Mishy Harman (narration): ​Once he got used to the freezing cold and green skies, Kobi started to get to know Enid, Stan and the kids. He tried to warn them about all the challenges of making ​aliyah​, the cultural differences and language barriers that need to be overcome, but Enid, who had never visited Israel, told him that…

Chaya Ben Baruch: I love Israel like a mother who loves her unborn baby, even though she’s never seen him, she just known intuitively that she loves him. That’s how I love Israel.

Kobi Sharon: You know, when you are looking at Chaya, she’s​ different. She… she has a special light. And I fell in love with the family. I mean, this couple is amazing. And together they wanted to make ​aliyah ​and I felt that they can make it in Israel, and they can do together, with those special kids, those special needs kids, they can do good in Israel.   

Mishy Harman (narration): ​So, once Kobi gave the green light, Stan, the Catholic salmon fisherman from Alaska, was sent to Israel on a reconnaissance mission. It was 1994.

Chaya Ben Baruch: So, umm… Stan went with our friend, who​ had lived in Kibbutz Degania, they went from kibbutz to kibbutz, asking if they would be willing to take a family with two special needs children. No kibbutz wanted us. They all said: “We do very well with our problem children, we don’t need anybody else’s problems. Thank you very much, bye.”

Mishy Harman (narration): ​But​ ​despite all these rejections, something pretty amazing happened. Stan fell in love with Israel.

Chaya Ben Baruch: I remember that he called me and he told​ me that none of the kibbutzim wanted us. And I remember bursting out crying on the phone. It was as if Israel didn’t want us. My… All of my prayers for Israel, you know it was like a big big rejection. And then Stan said, “but you know what, Chaya? We’re gonna come anyway, and not only that, I want to convert. And… I didn’t know what to think at that point. ​[Mishy laughs]​. It was like… And he had gone to this big Rav in Yerushalayim, Rav Sam Katzen, and he said to him: “Don’t worry about the kids with Down Syndrome, and don’t worry about the three older kids that don’t want to come. You’re just gonna come and you are going to see miracles and wonders.” And that was the mantra that we took with us when we went to Eretz Israel.

Mishy Harman (narration): ​So in August ‘95, the whole family packed up all their belongings into sixteen boxes and moved to Israel. But with all the excitement of a new beginning, it wasn’t an easy step for Enid. Her three older children from her first marriage decided that they were going to stay in Alaska and finish high school. Enid felt torn, but she was convinced that this was the right thing for Angkor, who was four, and Keren, who was just three.

Chaya Ben Baruch: So we came to the ​Merkaz Klita​, the absorption center in Tzfat.

Mishy Harman:​ How did you end up in Tzfat of all places?

Chaya Ben Baruch: Well, I think because we came from Alaska, they sent us to the most northern absorption center which happens to be in Tzfat [​Mishy laughs]​, and they put us in building nine, and now we live in building eleven.

Mishy Harman (narration):​ Here’s a few things you should probably know about Tzfat: One. It’s one of the so­called four holy cities of Judaism. Two. It’s a major center of Kabbalah; even Madonna hung out here in 2009. And three, nothing in Israel can really qualify as being remote. But, well, Tzfat comes pretty close.

Despite all that holiness around them, it wasn’t easy for the Ben Baruchs to adjust. Everything was new. Including, by the way, their names. Keren remained Keren, but Angkor was now Avichai, Enid’s new name was Chaya, and Stan, going all the way I guess, became Yisrael.

Yisrael Ben Baruch:​ Almost overnight our lives changed: from living in a large, beautiful home in the middle of the forest, to a two­bedroom apartment in the middle of an eighty family apartment building. So we all adapted the best we could but it took its toll in some ways.

Mishy Harman (narration): ​Henya Elgazi has been one of Chaya’s closest friends ever since she moved into the neighborhood. She still remembers when the family showed up with their kids.

Henya Elgazi​: Look, Tzfat is the town of the Kabbalah, of Jewish mysticism. And in Hebrew kabbalah also means to accept. And Tzfat… Well, it really is an accepting place. So no, we didn’t see them as anything unusual or anything. They’re just a different kind of family.

Mishy Harman (narration): ​But Yisrael and Chaya don’t remember quite as rosy a reception.

Chaya Ben Baruch: Yisrael would put one baby on his back, and​ one baby in his hands. And he would go outside in the street, and he would go walking and people would actually cross the street, so as not to catch whatever the kids had.

Mishy Harman (narration): ​During those early days,​ ​Yisrael was also converting to Judaism. Chaya didn’t have to convert. But still, the whole process was just as dramatic for her.

Chaya Ben Baruch: So I thought we were going to be like​ Kippa Sruga, ​which is knit kippa, which is modern orthodox, I guess. And ah… I could… I would be able to read Harry Potter, and take regular books out of the library, which I do… But um… Yisrael became more and more religious, what we call black hat around here, or ultra­orthodox. Um… I think that’s… That’s just where his soul kind of resonated.

Mishy Harman (narration): ​Yisrael started studying at a Sephardi yeshivah in town. That’s when his wardrobe grew darker, and the rabbi pictures appeared on the walls. At this​ point, I guess, I could tell you that Chaya and Yisrael gradually settled down, and lived happily ever after… Basically, that’s true, and makes for a very nice story, you know, the one about an outdoorsy couple from Alaska who have a baby with Down Syndrome, adopt another one, move from minus forty degrees to the center of Kabbalah in Tzfat. Stan, the blue­eyed Catholic fisherman ends up as an ultra­orthodox yeshivah bucher​. But when it comes to the specifics​ of how they found their way, things get a little more complicated. One day, after two years at the absorption center, something happened which completely upended the Ben Baruchs’ life. Again. Here’s their neighbor, Chana Levi.

Chana Levi:​ And one day we were hanging out the laundry, as we usually did, you know, with all the kids and stuff. And we were talking to one another across the clothes­line. And I’d just heard from a friend of mine that there was a little baby with Down Syndrome that had been abandoned in the Tzfat hospital. So you know, we were hanging out the laundry and talking and I said to her, you know, “Chaya, did you hear there’s a baby been abandoned with Down Syndrome?” She was like “why hadn’t anybody told me about this baby? like, I’m on the way there. Like, we gotta save her!”​ ​I looked, and she wasn’t there anymore. She’d gone. She’d just disappeared. I was like, “Chaya? Chaya?” And she just wasn’t there. She just ran straight to the hospital to see what’s going on.

Mishy Harman (narration): ​The baby girl Chaya ran to see was a month old, and didn’t have a name. She had been born with Down Syndrome, and when she was just two days old her biological parents deserted her in the hospital. They told all their friends and family she had died.

Mishy Harman: ​Wait, so you’re saying that in Israel parents can have a child.

Chaya Ben Baruch: Yes.​

Mishy Harman:​ With special needs?

Chaya Ben Baruch: Um hm.​

Mishy Harman:​ And leave the hospital without the child?

Chaya Ben Baruch: Yes. The social workers like to give the​ parents a month or two to really decide if this is what they actually want.

Mishy Harman:​ And where’s the child in the meantime?

Chaya Ben Baruch: So the child in the meantime is in the​ hospital.

Mishy Harman: Alone?​

Chaya Ben Baruch: Alone. Right. He doesn’t have a mother or a​ father there 24/7. And umm… The nurses will take care of them, and they’ll feed them and change their diapers, but every eight hours it’s a different face and there’s nobody that’s consistent for that child.  

Mishy Harman (narration): ​Chaya and Yisrael started coming to the hospital every day, for a whole month, to sit with the little baby. It was Chanukkah, and they named her Shalhevet, which means flame. They also began talking about taking her back home with them. This, of course, required the approval of child services.

Chaya Ben Baruch: So they told us that we could take her​ home, but we could only take her home temporarily. Within the first year and a half they were going to look for a better family than us, to adopt her. The welfare department felt that because we already had two special needs children that we couldn’t possibly handle a third. So we took her home and I used to cry every single night because I didn’t know if tomorrow they would come and they would take her away and I wouldn’t know where she was, because adoption is closed here in Israel. So ah…

Mishy Harman:​ And what did Avichai and Keren think about you bringing another little baby home?

Chaya Ben Baruch: Well it was like their sister. They bonded to​ her. We have gorgeous pictures of Avichai holding her, and Keren feeding her a bottle and…

Mishy Harman (narration): ​Chaya and Yisrael weren’t allowed to officially adopt Shalhevet, but they were recognized as a foster family, which is a different legal category.

Chaya Ben Baruch: It was like a bone to a dog, they would give us guardianship for a year, for two years. When she was finally eight old we finally got guardianship over her.

Mishy Harman:​ So for eight years you actually didn’t know if she was going to continue living with you?

Chaya Ben Baruch: Yeah.​

Mishy Harman:​ And did you meet her parents here in Tzfat?

Chaya Ben Baruch: So, we know who they are, and I think​ possibly they know who we are, but in the sixteen years she’s been with us, they have never come to visit her. I have a friend who knows the biological mother of Shalhevet. And so once I asked her if she would want some pictures, an album of pictures of Shalhevet and she said, “Chaya, no I don’t think so. I don’t think that would help her.”

Mishy Harman:​ So all their friends still think that their daughter died in the hospital?

Chaya Ben Baruch: Well for them, that’s what happened. I​ mean, that’s how they handled it.

Mishy Harman (narration): ​With their five little kids running around the house, Chaya and Yisrael had their hands full. But apparently “full” is a relative concept.

Chaya Ben Baruch: So, about eight years ago we heard about​ this baby whose biological mother was very young. She was twenty years old, she was a single mom. And his… He had Down Syndrome. His esophagus wasn’t attached to his stomach, he was going to need open heart surgery, he was being fed by a peg in his stomach and he had meningitis.

Mishy Harman:​ ​[Laughs]​. It’s almost… It’s almost like a joke this list of problems that Ori had, you know?

Chaya Ben Baruch: ​​[Laughs]​ Right! That’s right! Um… Someone came to the door, and she told me about the baby again for the third time and Yisrael said to me, “so, so why aren’t you going?”

Yisrael Ben Baruch:​ So looks at me and she said the most amazing thing. She said to me… She said ­ “What happens if I go to the hospital and I come to love this little guy”? So I looked at her and I said, “That’s it?! That’s all that it is?!” ​[Mishy laughs]. ​I said: “You’re gonna go to the hospital! Put your jacket on and go! Now!” So she put her jacket on and she went to the hospital.

Chaya Ben Baruch: ​​The first time I actually saw Ori he gave me this look that either said, you know lady, either you’re going to save me or I’m checking out. He had like seven tubes and three wires off of him. It was like pretty pitiful. An hour volunteering became two hours, became twenty­four hours. I just never came home after that pretty much. I would be home when the kids came home from school and then go back when they were asleep. I remember saying to the nurses, “I really like your hotel here. You have unlimited hot water and fresh sheets,” and they said “yeah, Chaya, but you’re sleeping with another guy!” ​[Mishy laughs]. ​And they would find me in the morning, I would be in the crib with Ori, you know, sleeping right next to him. And that lasted for about six months.

Mishy Harman (narration): During this time, Chaya and Yisrael got it down to a system.​One would be at home with the kids, the other at the hospital. Nights, weekends, holidays. For half a year they hardly saw each other.

Mishy Harman:​ And what did that do to your relationship with Yisrael, all this time that you didn’t see him at all?

Chaya Ben Baruch: Well, we joked and we said “Well, it’s a good​  thing we’re in our forties and not in our twenties.” ​[Mishy and Chaya laugh].

Mishy Harman (narration): ​In a repeat of the Shalhevet story, once Ori was strong enough to be released from the hospital, Chaya wanted to take him home with her.

Chaya Ben Baruch: So then the welfare department came in​ and they said, “No! He’s so fragile, he has to go into an institution.”

Mishy Harman (narration): ​As you can imagine, Chaya immediately sprang into action.  

Chaya Ben Baruch: So I called the institution that Ori was​ supposed to go into, and I didn’t lie to them, I didn’t say I was a social worker, I just said: “Well, we have this three month old baby with Down Syndrome, can you tell me about your facility?” And it turns out that there were a hundred special needs babies in this facility. He would have been the youngest. There wasn’t a doctor on call twenty­four hours on the premises. And I thought, do they want this kid to die?!

Mishy Harman (narration): ​But despite Chaya’s investigative findings, and a joint petition by her, Yisrael and Ori’s twenty­-year-­old biological mother who really wanted him to be with the Ben Baruchs, the welfare authorities were determined to place Ori in the institution.

Chaya Ben Baruch: And I remember screaming at God in the​ hospital, saying “How could you do this to me? How could you let me get close to this baby, know who I am, what I am, and what I believe in, get me close to this baby so that I fall in love with him, and now you want to take him away?”  Everybody told us that there was no chance that we were going to get Ori, because if the state of Israel welfare department wanted to put him in an institution than that’s where he was gonna be.

Mishy Harman (narration): ​They hired Einav Malka, a lawyer from Tzfat, and petitioned the court to get custody.

Einav Malka: We came into the courtroom with butterflies in our stomachs. We were full of fear, full of prayers. The proceedings weren’t simple at all.

Mishy Harman (narration): ​Both sides made their arguments, and then the judge weighed in.

Chaya Ben Baruch: The judge said that it’s a lot easier to put a​ baby in a home, and then put him in an institution if it doesn’t work out.

Mishy Harman (narration): ​The welfare department’s representatives immediately jumped out of their chairs and said.

Chaya Ben Baruch: ​​“But your honor, have you ever been in one of our marvelous institutions?” And the judge said, “Yes I have. I’m a father of a special needs child, and my daughter is in an institution!” And when I heard that I said, “Wow! This… I’m talking to a father, we’re gonna get the baby.” And my lawyer thought, ‘Oh no, if he put his daughter in an institution then that’s where he feels special needs children should go.’

Einav Malka:​ ​[Two seconds of the Hebrew, which then goes down to an under and the dubbing comes up]​. But he surprised us all, and said that even the best possible institution isn’t as good as a foster family. It was so touching. We all felt that something really special was happening.

Chaya Ben Baruch: I really think that God was watching over us, and I think it was a miracle.

Einav Malka:​ Everyone started screaming from joy, and hugging and kissing each other.

Mishy Harman (narration): ​After the legal triumph, the hard work began. Chaya and Yisrael took Ori home, and a few months later he needed to have open heart surgery. Now I know this is starting to sound barely credible, but while Chaya was in the ICU at Shneider Hospital with Ori, she saw, in the tiny bed right next to him, yup. Another abandoned baby with Down Syndrome. This time, even Chaya realized that it was too much for her. But she got on the phone, and started to look for a family to adopt her. A few days later, she bumped into Einav, the lawyer, in Tzfat’s market. She told her the whole saga, and Einav said, “OK, so we’ll take her.” And Einav wasn’t the only one. Chana Levi, the neighbor who had told Chaya about Shalhevet while they were hanging the wet laundry, also adopted a special needs child, Natan Shai. Here’s Chana.

Chana Levi:​ Natan Shai was… Is the greatest thing that ever happened to us. It’s like unbelievable, nothing can describe it. It’s all thanks to Chaya, like, she got us into it. We’re still there. Since then we took on another child, who’s also like six years old right now, with special needs.

Mishy Harman (narration):​ These were the informal beginnings of the organization Chaya would eventually establish, ​Birkat Ha’Derech, ​or Blessing of the Way. It finds foster homes for special needs children who have been abandoned. People from all over Israel started contacting her. Some were parents who wanted to give their special needs babies up for adoption, and others were families looking to adopt. Chaya became sort of a matchmaker.

Mishy Harman (narration):​ One of the families who turned to Chaya through the organization, a Haredi family, told her that six days earlier they had given birth to a baby with Down Syndrome. They didn’t want to leave her in the hospital, but simply couldn’t take her home. They already had nine other children and their rabbi told them to put the baby up for adoption. Chaya asked that they bring her to Tzfat. When she arrived, it turned out she had not only Down Syndrome, but also cystic fibrosis. Chaya called her Nechami. She was her tenth child. But she only stayed with Chaya and Yisrael seven months. Henya Elgazi, Chaya’s friend, remembers.

Henya Elgazi​: What a beautiful child. ​Oh, I’m going to start crying now. A real life doll. You never see babies like her, special or regular. Such beauty. She had this angelic face, and I’m not usually flowery. But then suddenly, hup, just like that, she was gone.

Chaya Ben Baruch: She passed away from a meningeal cocal​ meningitis, that very very quickly killed her.

Mishy Harman: ​Wow, here at home?

Chaya Ben Baruch: Yeah. In my bed with me.​

Yisrael Ben Baruch: ​I think of all the things that we’ve been through, losing her was the toughest, you know.

Mishy Harman (narration): Just to remind you, Avichai is Chaya and Yisrael’s biological son, the one who was born with Down Syndrome in Fairbanks, and kicked off this entire unusual journey. And Kirin is the first baby Chaya adopted, to be a twin to Avichai.

Chaya Ben Baruch: Avichai’s Bar Mitzvah was the same time​ that was Keren’s Bat Mitzvah, so we took them to a hotel in Yerusalayim, and we thought it’s gonna be really fancy. And Yisrael and I took the kids to the Kotel. Yisrael took Avichai to the men’s side and I took the girls to the women’s side, and Avichai came back and he said [​imitating Avichai]​ “hitpalalti she’Keren​ tihiye ha’kala sheli​,” I davened that Keren would be my bride. And I thought that he was totally pulling my leg ​[Mishy laughs]​, so I looked at Keren and I said, “Haha, he wants to be your ​chatan​, he wants to be your bridegroom.” And she looked to me as if to say ‘Mom, you just don’t get it, do you?’

Chaya Ben Baruch: And I had always anticipated marrying my​ son with Down Syndrome to a woman with Down Syndrome and my daughter with Down Syndrome to a man with Down Syndrome. But I never thought that they would be married one to each other.

Mishy Harman (narration): ​I’m pretty sure quite a few of you are feeling uncomfortable right about now. Sure, they aren’t biological siblings, but still, Chaya breastfed them together, and they grow up as brother and sister. You’re not alone. Even some of their closest friends were kind of weirded out. Here’s Henya.

Henya Elgazi:​ ​I wasn’t comfortable with the idea. I kept on saying to Chaya, “but they’re siblings! They’re siblings!” And she said, “But they aren’t. As much as we think of them as brother and sister, they really aren’t.”

Mishy Harman (narration): ​Chaya came to understand their relationship with her particular blend of pragmatism and compassion.

Chaya Ben Baruch: Everybody needs a life partner. Even if my​ child was a homosexual, I’d be looking for a life partner for them too and ​gey gezunt a heit​, you know.

[Music]

Chaya Ben Baruch: For five years I kept quiet, I thought maybe​ he’d fall in love with somebody else, or whatever. And then, one day, Keren brings home a black dress from a second hand store that the school gave her, and she tried it on. And I don’t particularly like my daughters wearing just black. I think it’s a little morbid. She put it on, and Avichai saw her and he said “Wow wow wow,” and she blushed. And I said to her, “Well, let’s pass this dress on,” and she said “No! he likes me in it.” And that’s when I started to see that the relationship was not just brother and sister. That there was something way way deeper than that. And then anytime that they went to a wedding or a Bar Mitzvah they would come home, and like an old couple they would sit down and they would say: “Well at our wedding we’re gonna have a white table cloth with blue runners,” and “At our wedding Aharon Peretz is gonna do the catering,” ​[Mishy laughs]​. And then “At our wedding I’m gonna have a white dress with a veil like this.” And I knew that they were just totally serious about this. There was no way I could talk them out of it.

Mishy Harman:​ And, did you try?

Chaya Ben Baruch: Um… No. Once I made the switch in my​ mind that he really loved her and she really loved him, then there really wasn’t any other option.

Chana Levi:​ Ever since they were young, ever since they grew up together, they understood one another.

Mishy Harman (narration): That’s Chana, the neighbor.​

Chana Levi: ​They were there for one another, they had challenges that they faced together, and went through together. And I don’t think there’s another couple in the whole world that can be more compatible, like, they just completely understand one another.

Chaya Ben Baruch: She knew exactly what she was getting into​ and he loved her so much, then… why not?! So once he got really really angry, not at her, but he just got really really angry and he wasn’t pleasant to be around. And I said to her “Are you sure you want to get married to him?” [​Mishy laughs].​ And she just said to me, she kind of looked at me and she said, “Of course Mom, I love him!” ​[Chaya laughs]​.

Mishy Harman (narration): But as Einav, the lawyer, explains, not everything was that​ simple.

Einav Malka:​ It was obviously a bit strange. Hard to grasp. And people began asking questions. Like, in terms of ​Halakha​, was this even allowed? And where would this relationship lead? Would they be able to have kids? How would they manage on a daily basis? You know, safety at home, electricity, gas. Everything.

Mishy Harman (narration): ​Chaya and Yisrael could answer some of these questions themselves, but on certain matters, specifically those pertaining to Jewish law, they needed advice. They consulted a whole slew of rabbis, including Shmuel Eliyahu, the chief rabbi of Tzfat. If he didn’t sanction it, it would be a no-­go, as far as they were concerned. He told them that there were really two separate ​halakhic ​issues. The first was the matter of a brother and sister getting married, even if they aren’t blood relatives. Here’s Rabbi Eliyahu.

Shmuel Eliyahu:​ When they aren’t biological siblings, then ​halakhically ​there’s no problem. Whoever knows Solomon’s Song of Songs, ​Shir Ha’Shirim​, knows the verse: “My beloved is knocking, ‘Open to me, my sister, my darling, my dove, my flawless one.’”

Mishy Harman (narration): ​OK,​ ​check. But the second matter was more complicated. In Judaism, he explained, a rabbi marrying a couple has to make sure that they fully understand the meaning of the marital contract they’re entering. Rabbi Eliyahu met with Avichai and Keren a bunch of times, had long conversations with them. And ultimately delivered his verdict.

Shmuel Eliyahu:​ They fully understood what a wedding is. They wanted each other. It was clear… It was just clear that they had deep feelings for each other. That they loved each other. That they had thoughts about spending life together. And from that place they could connect to the concept of marriage.

Mishy Harman (narration): ​So… they went ahead with it.

Chaya Ben Baruch: And so I saw a side of my daughter that I​ never knew really really existed. And when she put on that wedding dress, she was just amazing. And she started flirting with him, she was just so so beautiful, and so happy!

Mishy Harman (narration): ​Everyone showed up at the wedding. All the many friends who have been following the Ben Baruch’s on their winding journey. Here’s Henya.

Henya Elgazi:​ ​It was the early evening, and the sun began to set. Suddenly the place was full ­ all the kids from Keren and Avichai’s school, the teachers, the rabbis, the principle. We all felt as if we were marrying off our own child. It was as if we were all just floating in air. We never touched the ground.

Chana Levi:​ Avichai and Keren’s wedding was the most amazing wedding I’ve ever been to in my life. It was spiritual, it was real, it was interesting, it was adventurous, it was everything you can imagine, like, unbelievable.

Kobi Sharon: It was so touching, moving. We had tears in our​ eyes to see this wedding.

Mishy Harman (narration): ​Kobi, the Jewish Agency representative who had helped them make ​aliyah ​was also there, and pointed out the most obvious “benefit” of this kind of a wedding.

Kobi Sharon: But it was funny because, you know, you have a​ wedding and you don’t have the other side, of the bride, or the groom. Because they were both sides, Chaya and Yisrael. ​[Kobi laughs]​. So it went so smooth, and it’s a great idea for families who have fights about who will pay for what.

Mishy Harman (narration): ​Rabbi Eliyahu married them.

Shmuel Eliyahu:​ We could barely hide the tears, witnessing such nobility. One of the most touching moments was that the groom, Avichai, didn’t understand that he had to wait for the ​chuppa ​to love the bride. For him, it was like, “Hey, we’re already here. That’s it.” So he kind of broke the order of the ceremony, but it was fine. ​[Shmuel laughs].

Mishy Harman (narration): ​In Jewish weddings, right after the chuppa​ ​, the actual ceremony underneath a kind of canopy, the couple go to the ​cheder yichud​, to be alone for a few minutes. And in the cheder yichud…​     

Chaya Ben Baruch: Avichai asked Keren, “So, how was it?” And​ she said, “I cried.” And he answered her, “I also did.” ​[Mishy laughs]​.

Mishy Harman (narration): ​Chaya and Yisrael rented out another apartment in their building, exactly one floor below them, for the young couple.

Chaya Ben Baruch: So, right after we came back from the​ wedding, everybody was like exhausted. So what does Avichai and Keren do? They take all of her stuff, her bedding, her clothes, her everything, and they moved down to the apartment at like one o’clock, two o’clock in the morning.

Mishy Harman (narration): ​And ever since, they live down there together. The kitchen, so as not to complicate matters in terms of ​kashrut​, is milchick​​, or dairy. But other than that they lead a more or less normal lifestyle of a newly­wed couple.

Chaya Ben Baruch: Her closets are probably more orderly than​ mine. I taught them how to work the washing machine and the dryer, and she hangs clothes also better than I do. And the school taught them how to go food shopping, so they make a list. She’s much… Keren’s much better at writing than Avichai, but she’s much shyer. So like if they go into a store and and she doesn’t know where the soup-­nuts are, she won’t ask anybody. But what will he do? He’ll say ​[imitating Avichai]​: “My wife needs the soup-­nuts, where are the soup-­nuts?” ​[Mishy laughs].

Mishy Harman (narration): ​Einav, the lawyer’s question of whether or not Keren and Avichai can live independent lives, seems to have been answered.

Chaya Ben Baruch: When the kids are in their apartment,​ generally, I don’t go into their apartment at all. I don’t wake them up. I don’t tell them when to get dressed. I don’t tell them when to go to sleep. And they manage to get up and out of bed in the morning just like anybody else. Slowly slowly we learnt how to give them more and more independence. On ​chagim​, or on the holidays, or on Shabbat, I need to promise Avichai that I’m going to do something special, I’m gonna cook something special for him like a barbeque or something, cuz’ otherwise they go to… They’re invited to so many different people’s houses, that I have to kind of bribe them to come home. ​[Mishy laughs].​ He calls me his mother-­in-­law at this point. ​[Chaya laughs].

Mishy Harman:​ His mother-­in-­law?!

Chaya Ben Baruch: Yes. ​Chamuti​. I’m his ​chamuti. ​Because I’m his wife’s mother, so I’m his mother­in­law. Well, I guess he needs a mother­in­law in some level. ​[Chaya laughs]​.

Mishy Harman (narration): ​There was one pretty obvious question that I wanted to ask. But, then again… I wasn’t really sure if it was appropriate to talk to an ultra­orthodox mom … about her kids’ sex life.

Mishy Harman:​ So, sorry to ask, but did you talk to them about sex?

Mishy Harman (narration): ​And of course, Chaya didn’t mind at all.

Chaya Ben Baruch: Yeah. We talked to them slowly. I have an​ atlas, a birth atlas, and some other things that I pictorially show them what to do. But Keren goes to the ​mikveh, ​and, when they come back… I can’t tell you that there’s absolutely a hundred percent been a consummation of the marriage, but there’s certainly lots of hugs and lots of kissing, and they really really love each other and they really really care about each other. Ninety-­nine percent of the men with Down Syndrome are born sterile. So that means they can’t be fathers. But that doesn’t mean that they don’t need a hug in the middle of the night, in the middle of the day. I think everybody needs that, and I remember Avichai and Keren have told me that they’re praying for a ben zachar​ ​, a first born son. And, I said to them “Well, not every couple has children.” He said, “Don’t worry mom, we’re still praying.” [​Chaya laughs]​. “We’re still praying for one.” Like, “We know Mom, but you know, forget it.” ​[Chaya and Mishy laugh].

Mishy Harman (narration): ​Just this week, Chaya called to say that Keren and Avichai are about to move out into a communal home for people with special needs. They will be the first married couple there. Chaya and Yisrael went out and bought them a new fridge and washing machine, which, she told me, makes it all feel very real. But they aren’t really empty nesting. Shalhevet is seventeen, and Ori is nine. Yisrael continues to study at a local Sephardi Yeshivah. Chaya now spends most of her day at a women’s artist cooperative, where she makes stain glass birds and mezuzot. Oh, and yeah, she also found time to donate a kidney to a complete stranger. But every night, when she goes to bed, Chaya puts her sneakers by the door. Just in case a hospital calls wakes her up. She has no doubt she’ll run. For her, each child is a blessing.

Chaya Ben Baruch: Well, they have a really really big heart​. They just shine love. And it’s just such a gorgeous thing to see.