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I Told My Husband: "We Have To Adopt A Child With Down’s Syndrome"

Chaya and Yisrael Ben-Baruch, more than just being a couple, are truly an inspiring phenomenon. Their story begins in Long Island, New York, switches to Alaska and concludes in the holy city of Safed. It contains significant challenges, searches for authentic Judaism, refined characters, devotion to unwanted Down's Syndrome children, and a surprise happy ending which proves that sometimes reality goes beyond the wildest imagination. A portrait of loving kindness at its most potent.

| 03.02.16 | 11:34
I Told My Husband: We Have To Adopt A Child With Down’s Syndrome

If you would have asked the erstwhile Jewish feminist Chaya Ben Baruch what her life would look like, she probably would never have guessed what would become of her – neither with regard to lifestyle, place of residence or the type of "special" family which she would build for herself. She would never have imagined her research career leading her to live in freezing Alaska, where she would get married, and she would not have dreamed how her sixth pregnancy would end and how as a result of it she would finally find her true calling in life. But let us not jump the gun.

Chaya was born together with her twin brother to a Long Island, New York, Jewish family which she describes as "Conservadox". Her grandparents were strictly orthodox. In fact her mother's parents were Satmar Chasidim, but her parents were first generation Americans who wanted to be like everyone else. The result was that Chaya grew up in a family which kept special utensils for meaty, special utensils for dairy and another set of separate utensils for – non-kosher food. Even though she learned in a Jewish school (Yeshiva high school where half the day is Jewish studies and half the day secular studies) and was taught to be proud of her Jewish faith, she didn't see herself continuing that tradition. The gulf between what she was taught in school and what was applied in her home was too great, and G-d seemed like a strange and distant idea. "In the school frameworks where I learnt the prayers were said in Hebrew. I didn't think that G-d understood English or that I could talk to Him. For this reason I never managed to develop a personal relationship with Him, and I never imagined that I could speak to Him in my own language".

When she was 18 she began to study for her first degree. While she was studying she realized what she had a passion for: Marine Biology. She decided to continue her degree in Alaska studying sea mammals. Her research project focused on sea otters

Why sea otters?

"Otters are special creatures. They nurture their cubs for an entire year in the water, and I have met people who don't nurture their children for a year even outside water….I found it fascinating to investigate this model of dedicated parenting".

There, in Alaska, she met her first husband, a non-Jewish professor in Alaska ten years older than her who was her lecturer. For her family this was hard to swallow. One of her uncles told her that she had done for the Christians what they had not succeeded in doing by themselves – destroying the Jewish race, but she felt that this was hypocrisy, since the same uncle had a relationship with a gentile. In the end their mutual path ended and after eleven years and three children, their marriage fell apart.

A short time later she met Yisrael, who was not them known as Yisrael but as Stan. Stan was a tall blond guy from a devoutly religious Catholic family, a professional salmon fisherman and a student at Alaska university. He recognized in Chaya a gentle soul with real joie de vivre and decided that she would be his wife. At the beginning of their relationship she told him that if he did not think it would be serious she would prefer to split up, because she did not want to bring a stranger into her children's lives for no reason, but very soon they both understood that they wished to join their lives together and made a small wedding for family and close friends.

Initially he had told her that he wanted three children. "But I already have three children", she remarked. "I wanted them and three more of our own children", he answered. She agreed.

They had two children together, but when she tried to conceive again she was unsuccessful. She suffered two miscarriages and her heart was filled with despair. Without understanding what she was doing, she went into the forest to be with herself and to ask G-d for a third child. "I asked for a live child, but I didn't ask for a healthy child. I didn't ask for anything, just a third child who would live".

From her third pregnancy, which was especially difficult, Avichai was born. Chaya, who had in the meantime studied to be an alternative midwife (one who is not a nurse but can help women give birth at home), noticed that the baby's ears were folded in, one of the tell-tale signs of Down's syndrome. She asked the midwife if she thought the baby had a problem, but the midwife told her there was nothing to worry about. "Take him home and give him love. Everything will be fine".

What exactly is Down's syndrome?

"Children with Down's syndrome have an extra chromosome which the rest of the world doesn't have. There are 328 genes on the 21st chromosome which give them their unique features, like slanted eyes, a flat nose, smooth hair, but also developmental and cognitive challenges.

Most of these children were placed in institutions in the past. People didn't believe in them. They thought that they had no hope of developing and learning with their disabilities, but in an institution where there is no father and mother and nobody who believes in these children and gives them love and opportunities to grow, study and become independent, I think even regular people who would be in such an institution would not develop."

Even though Chaya did a test for fetal protein during her pregnancy, which is supposed to estimate the statistical probability of such a child being born, the syndrome was not discovered. "For me it was a miracle that I didn't know, because that's how I got Avichai. At the beginning it was a surprise, but after he was born and I began to take care of him and feel him, I became very attached to him. He was my child and I loved him like all the others". After a week Avichai was found to have a heart defect (which occurs in 40% of Down's syndrome children) and Chaya flew with him to Portland for a six-hour operation to save his heart. After the operation Chaya and Yisrael settled down to the task of taking care of their special needs child. It wasn't easy. Chaya read widely on the subject, covering many different angles. After five months she flew to take part in a conference on special needs children, where she heard a story which gave her an idea. A mother of twins with cystic fibrosis described how after they had died she found in the bathroom a moving diary which they had written together, which helped her to understand the challenges they had faced. She added "You know, it was so good that each of them had the other one. They didn't want to face the disease by themselves. Being together helped them to cope with it much better".

From this I understand your inevitable conclusion…

Indeed. Since I myself am a twin, I decided that this was a good idea. I came home and told my husband that we have to adopt a boy or girl with Down's syndrome so that Avichai won't be alone. You could say that I was impudent, I wanted somebody else's child so that my own child would have it better".

They started the process of searching for a candidate, and after a short time, on Avichai's first birthday, a family came from Anchorage with a tiny baby. "They came to our house, a mother, father, grandmother, four-year-old boy and a nine day old baby. I thought that they were only coming to check up on us, but this was not the case. They came at ten in the morning and by two thirty they had decided to leave the baby with us. When this happened, the four-year-old screamed "Don't leave my baby", but they just left her and went away. At the moment that I saw the connection between the baby, who we called Karen and Avichai, I knew that this was the right thing for both of them".

Then they were faced however with another problem. In the area where they lived in Alaska there was no possibility of raising two special needs children, as there were no available educational facilities there. They searched various different agricultural communities around the world with relevant facilities, but due to their unique status as parents of two special  children, they had a hard time getting accepted. In the end they decided to emigrate to a kibbutz in Israel. They contacted the Jewish Agency and told them their story. The kids didn't faze him, but he did present all the difficulties, the differences in mentality and the language barrier. This however did not deter them. The idea of going to Israel fascinated them and dominated their thoughts. "I love the land of Israel like a mother loves the baby in her womb, even when she doesn't know it", explains Chaya. Thus, in 1994 Yisrael was sent on a pilot trip to Israel to find an appropriate kibbutz.

Did he find one?

Unfortunately not. He went from kibbutz to kibbutz looking for one which would accept us – a family with two special needs kids. We were sure that in the Holy Land we would find one easily, but like in other communities around the world, no kibbutz in Israel was willing to accept us. They claimed that it was enough that they had to take care of their own problem children without taking on somebody else's problem children. I took this very hard, I felt as if the land of Israel didn't want us. I couldn't understand how this could happen, but in the meantime something interesting had occurred – Yisrael had fallen in love with the country. He called me and said to me: "Nobody wants us, but I love the country. I want to convert and become a Jew. I want us to immigrate to Israel". He went to consult with Rabbi Sam Kudson of Jerusalem, who said 'Come, you will see miracles' so we decided despite everything to come".

How did you relate to Yisrael's conversion?

"When my husband started his conversion process and spoke about Judaism, a lot of things which I hadn't wanted to touch for many years started to surface. I , who had grown up in a religious school, knew what it meant to convert and become Jewish, but he didn't fully understand the meaning of this. As a person who is naturally spiritual, I didn't feel that the whole process was necessary. I felt that I had been a good person in Alaska even without being religious, but when I saw my husband getting more devout, I attuned myself to him.

At first my process of Teshuva stemmed from marital reasons. I felt that the family should stay together and that if I would already become religious, I preferred the religion I knew. I tried to look at people from other religions – did their religion seem more correct. I looked at Buddhists, Christians etc. and came to the conclusion that I preferred Judaism. This was my G-d – the G-d I grew up with. This was home. However with time, as I kept more mitzvot, my connection to Hashem became much stronger. When I realized that I could talk to Hashem in my own language and ask of Him, share with Him, and cry to Him like to a father (which as I said I didn't know one could do), a true relationship was established with Him. I began to really connect to Him and feel close to Him. It's sad that I had to leave the faith in order to return and discover that I could talk to Hashem in my mother tongue".

How did you manage with the process on a practical level?

We were vegetarians so there weren't any problems of Kashrut, but there were other problems such as when does Shabbat begin and when does one light candles? In Alaska at the peak of the winter there are 21 hours of darkness and at the peak of the summer there are 21 hours of light. (How does one live with this? In the summer one puts dark nylon covers on the windows so that the children will be able to sleep, while in the winter one sends them with a flashlight to school to light up the way). This creates a situation where Shabbat begins and ends at unusual times of day. In the end I began to light candles at the same time as Seattle and Vancouver. In this way I brought the Shabbat in earlier so that we could eat at a normal time.

It's interesting that people accept you there for what you are. In Israel the first question they ask you is "What are you, a Chabadnik? a Lithuanian? a Breslover? A Gushnik?" People want you to be defined. In Alaska there aren't such questions. You can be whatever you feel like, it's all ok.

 

From Alaska To The Holy Land

In August 1995 the Ben Baruch family came to Israel. The three older children from her previous marriage preferred to stay in Alaska and complete their high school studies there. It was very hard for her to be separated from them, but she had to do it to fulfill their joint dream. They came to the absorption center in Safed and began to build their new lives.

The adjustment was not just on a cultural level, but also on a religious and spiritual level. Yisrael continued to strengthen his observance and together with their adopted daughter Karen (who was then three) , they went through the conversion process at the Rabbinical court in Safed, a procedure which changed his entire spiritual mindset. He changed his name from Stan to Yisrael and became an observant Jew together with his entire family.

In accordance with the halachic requirements, Karen completed the process when she reached Bat Mitzvah age when she had the option of revoking her conversion, but she chose to accept upon herself Torah and Mitzvot. Chaya became attached to her new life "When I saw stalls filled with Lulavim and Etrogim I began to cry. In the diaspora there was one Etrog for an entire town to make a Bracha on. My Teshuva process connected with our move to Israel. It seemed to me both correct and perfect."

***

Yisrael came across the Ohr Hayakar Yeshiva by chance, when he went one day with Avichai and Karen to the promenade in Safed. Avichai mischievously ran away from Yisrael, who found him in the Bet Midrash of the Yeshiva. When he came in he saw how the students were taking care of Avichai, looking after him and communicating with him. He said to himself: "If this is the way they treat Avichai, they could accept me too", and decided to stay there.

Two years passed. Chaya and Yisrael slowly acclimatized to life in Israel, which continued peacefully until one morning Chaya was talking with her neighbor while hanging laundry. The neighbor mentioned to Chaya about an abandoned Down Syndrome baby in the children's department of the Ziv hospital, Safed. She thought that Chaya might have an idea for the baby but didn't imagine that at that moment Chaya would decide to run of her own accord to the children's department to find out what had become of that poor baby. "Social workers like to give parents of such a child a month or two to decide what they want to do with their child, but in the meantime the baby was left alone in the hospital", and Chaya didn't want her to stay alone. Yisrael and Chaya decide therefore to visit her on a daily basis and even gave her the name Shalhevet.

As time passed they realized that they were growing attached to her and decided to check the option of adopting her but they discovered that according to the Ministry of Social Affairs a family with two Down's syndrome children could not adopt another child. "They told us that in the meantime the baby could stay with us temporarily, but that they would be on the lookout for a family to take her in permanently. They didn't think that we could deal with a permanent adoption because we already had two special needs children and were new immigrants. Every morning I woke up with teary eyes. I was afraid that they would knock on the door and take her away from us,  and since there is a lot of secrecy around the issue of adoption, we would never know which family had taken her and we would lose touch with her".

That must be a very difficult feeling…

"It was crazy…I loved her so much. I was really afraid. By this time I felt like she was really  like my own child, but the country only agreed to give us status of temporary guardians, first for a year, then two years and finally when she was eight they agreed to give us permanent guardianship."

This however was not the only case. "A bit less than a decade ago we heard about another baby with Down's syndrome who was in hospital and his mother, even though she was by his side, felt that she could not raise him. My husband asked me 'Why don't you go and visit him' but I was scared to get attached to him. In the end I decided to go. The baby was very sick. He needed open heart surgery and was also suffering from meningitis ". Chaya and Yisrael took turns to be with him and for half a year they hardly saw one another. After his health improved Chaya wanted to take him into her house but the social workers claimed that he was very frail and should stay in an institution.

How did you take this?

I decided to fight. I presented myself as a social worker and called the institution to find out about it. I discovered that there were a hundred children there, all with special needs and I realized that he would be the smallest one there. I also found out that there was no doctor on hand at this place". Even though the biological mother of the baby, called Uri, knew Chaya and was favorably inclined to his staying with the Ben Baruch family, the ministry of social affairs still thought that due to his fragile state it would be better to put him in an institution. "I remember that I spoke to Hashem – I asked Him how he could do this to me after I had become so attached to the child. I said to Him "There are so many people crying because they have a Down's syndrome child, and I am crying because I don't have one'. I asked G-d to help me to help him".

Yisrael went to ask for advice from Rabbi Yoram Abergil O.B.M. of Netivot and Rabbi David Abuchazeira and both of them told him to hire a lawyer and fight to maintain the child. Rav Shmuel Eliyahu, the rabbi of Safed, also joined the fray and tried to help.

In the end the Ben Baruchs hired a lawyer together with the biological mother and went to court to ask that their family should be allowed to raise the child. The hearing was not straightforward and at the end the judge said that for the good of the child he should be placed with a family and only if that did not work out he should be transferred to an institution. The ministry representative said "Sir, how can you say that, our institutions are excellent. Did you ever visit one of our institutions?" To the surprise of everyone the judge said: "Yes, I'm the father of a special needs child in an institution", and despite this he decided that the best place for the child was with a foster family.

Uri moved to the Ben Baruch's house and underwent a long period of rehabilitation including an operation at the Schneider children's hospital. There, in the hospital, Chaya saw another abandoned Down's syndrome baby. She realized with regret that she wouldn't be able to raise her but decided to take upon herself the project of finding a foster family for her. While searching she consulted with her lawyer, Einav Malka, whether she know such a family. When Einav heard her story, she said: "Yes I know such a family, we'll take her to that family"(meaning herself). She wasn't the only one. Chaya's neighbor, the one who had told her about Shalhevet while they were hanging laundry, also was inspired by Chaya to adopt a special needs child of her own.

The small project became an organization headed by Chaya and Yisrael called "Birkat Haderech", which connects between foster families and special needs children. "At present one can know at ten weeks after conception whether the child has Down's Syndrome and according to statistics 95% of parents choose to terminate the pregnancy in this case. I say – give the children a chance to live. They are wonderful, incredible people. When you hold them by the hand – they will give tremendous joy. People say to me 'you are a righteous lady' and I say 'I'm no righteous lady, I'm just a mother who loves her son. If a woman would look at her child as a child, as a son and not as one who has a syndrome, she would understand what I'm talking about, not that I am judging anyone".

One of the tougher cases concerned a week old baby who had both Down's Syndrome and cystic fibrosis. Chaya decided to raise her by herself and called her Nechami. Unfortunately the baby died at seven months old. After consultation with Rav Eliyahu, they sat Shiva for her.

Surprise Wedding

 The years passed and Avichai and Karen, their son and adopted daughter, grew up and matured. Chaya and Yisrael started to think about their future, but nobody could have imagined their surprising request. One fine day they stood in front of their parents and said: "Mummy, Daddy, we want to get married". Indeed more than a year ago one of the most moving and discussed weddings in the country took place. Avichai and his foster sister Karen joyfully wed each other. Yes, it may sound strange and even surprising, but it appears that at birth they were destined for one another.

How did the idea of their getting married first develop?

"At Avichai's Bar Mitzvah and Keren's Bat mitzvah, we decided to take them for a fun day in Jerusalem. Among other things we went to pray at the Kotel. I took Karen to the women's section, while Yisrael took Avichai to the men's section. After they finished praying I asked Avichai what he had asked for. He said 'I prayed that Karen will be my wife'. I smiled and said jokingly 'Karen, Avichai wants to be your groom' but she just gave me a look of 'Mummy, you don't know anything'. Then I understood."

Did it surprise you?

Yes. I knew that we would try and find Karen a husband like herself and that I would try and find one for Avichai like himself, but I never thought that they could be a couple together. I thought at first that it was a childish wish and when they matured they would forget about it, but I was wrong. For years I had tried not to talk about it and not to spend energy on the subject, but I did observe them and I saw that there was a very special bond between them. After five years they just stood up and told us that they were getting married. I realized that this was the right step for them. If they love one another and want to get married – then why not? Whenever Avichai went to a function he came back with ideas for his own wedding – 'at our wedding there will be white table cloths with blue napkins, and this singer will be there and he will sing this song etc.' They planned their wedding down to the finest details.

Did it seem strange to you?

If they would have grown up in an institution together, nobody would have thought it strange. We consulted among others with Rav Shmuel Eliyahu, who said that if they are not biological brothers – there is no problem.  A more complicated issue is whether they really understand the meaning of a marriage covenant. The rav said that they do understand and comprehend and should be allowed to marry, and he indeed officiated at their wedding".

How did you feel on that day?

I cried and smiled and then again I cried and smiled. Not just me – everybody was in the clouds. The wedding was very joyous, and all the people who have been accompanying us until now came. It was a telling message that even special needs children can be happy and find love.

At the beginning Yisrael and Chaya rented an apartment under their own and supervised them. They taught them to use a washing machine, a microwave, how to maintain the house and how to live as a couple. Chaya was amazed to discover that their clothes cupboard was more organized that those in her house. Later on they moved into sheltered housing of the Tzohar Halev organization. They most likely will not have children, as 99% of Down's syndrome children are infertile, so that there is little chance of their having kids. "They are praying for children, but I have explained to them that not every couple merits children, so that they will not raise their hopes too high.

How is their relationship today?

"They are a very cute couple..I remember that at one point we needed to buy them a couch. We went to Ikea, one couch we saw was pretty, blue and comfortable, while the other was less attractive but could be turned into a bed. Karen wanted the blue one, but Avichai preferred the other. We asked him what to do and he said 'Whatever my wife wants…' In the end she bought the blue one. She believes that a house should first and foremost look attractive".

You should Love Your Neighbor- With All Your Body

If you thought that this was the end of Chaya's story, you are wrong. Chaya, as we have seen, is not a regular person, and whenever she feels that help is required, that's where she will be. Five years ago, while walking with a friend, the friend told her about the possibility of donating a kidney to save the lives of those whose kidneys have stopped functioning. (Medically a person can function normally with one kidney). Chaya, who wasn't previously aware of the possibility of a living person donating an organ from his body, didn’t sleep that night. The idea intrigued her and she contacted the "Matnat Chaim" organization of Rabbi Haber which connects between altruistic donors and those with kidney diseases, and her blood type was found to match that of one of the more severe cases – a sixty year old man suffering from kidney failure who had dialysis twice a week. Chaya was overjoyed at the opportunity, "A person has two kidneys, one for himself and one to perform acts of kindness with it". Moreover she says "If G-d forbid, my child were sick and required a kidney, how could I expect somebody else to donate a kidney for my son if I will not donate to others?"

How did your family respond?

My husband supported me. Some people told my husband "Don't let your wife do this crazy thing"  but he said "Do you think that I can stop her?" The tests to confirm the match moved forward and she was invited to a meeting with a psychologist and psychiatrist to verify her decision. After she had met with the putative recipient and his wife and had seen the special relationship between them, she understood even better how important this step was, but to her chagrin one of the tests did not come out conclusive and there remained a doubt as to whether she could donate. "I cried to Hashem 'You can't take the Mitzvah away from me after I met them already. Please let me help this work". The prayer helped and in the repeat test she was found to be a perfect match.

What do you remember from the feeling after the operation?

 On a physical level, I suffered from repeated vomiting the day after the operation, but that passed. For the pain afterwards, as with every operation, there is Optalgin. But on the whole I got back to myself very fast. Until this day I don't feel that I'm lacking anything – and a person is alive because of me".

And emotionally?

Emotionally I feel that it did much more good for me than for the person who received the kidney. After I did it, I felt really good. It's an amazing sense of accomplishment which is unparalleled. I can't explain the feeling, just as a mother can't explain to one who hasn't yet got children what children mean to her, one has to try it in order to understand"