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A Different Perfect

A Different Perfect

You and Your Baby Start a Song

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From right to left: Avichai, Shalhevet and Keren
From right to left: Avichai, Shalhevet and Keren

"A baby is programmed to be loved by a mother. One baby, one mother. That's why babies fail to thrive in institutions. You and your baby start a song, and only the two of you have that song," says U.S.-born Chaya Ben Baruch, 52, who lives with her family in the northern Israeli city of Tzfat (Safed).

Chaya is the mother of six biological children, including a Down's syndrome son, Avichai, aged 16. In addition, she and her husband Yisroel are also adoptive/foster parents to three more Down's kids—two girls and a boy, Keren, Shalhevet, and Ori, ages 15, 10, and 2. The Ben Baruchs became parents to all three Down's children when the latter were tragically abandoned by their parents, at birth or shortly afterwards. The Ben Baruchs rescued these children from nearly-certain institutional fates, since in the past, few families in Israel have been willing to adopt Down's children. (Another Down's baby, Nachum, was fostered by the Ben Baruchs from the age of six days to the age of seven months. Sadly, this past spring, Nachum suddenly passed away.)

Now, Chaya Ben Baruch has launched an organization called Birkat Haderech to encourage women either to keep their Down's babies, or to let Chaya help them find the babies a loving home. The organization keeps a list of families prepared to foster Down's babies, and contacts them when there is a baby in need of a home.

She shrugs off all admiration for having adopted these special-needs children. "The joy that we get is tremendous. People need to realize that unless there is a major medical problem, the every day care of a Down's baby is no different than that of any other baby. It's just that their development takes longer. Longer to get out of diapers… longer to walk. But what is so bad about that, that you would leave them in the hospital?"

"People might think that we have sacrificed a lot to raise these children, and that it takes a lot of work and dedication. They are wrong," Chaya adds with a smile. "For every ounce of effort we give these children, they give back tenfold. The hugs given with their full selves, the kisses with all of their hearts plus more, the funny way they appreciate life. People see our children and know that some of them are our biological children and some are our adopted or foster-cared children. When people ask who is 'ours,' we often reply, 'They all are.'"

Chaya was born in Far Rockaway, New York, to American-born parents; her father's ancestors were Satmar Chassidim in Hungary. Her home was not observant, but she and her siblings attended a religious day school. At age seventeen, Chaya finished high school early and continued her studies at the State University of New York in Buffalo for two years. For her third year of college, she transferred to the University of Alaska in Fairbanks—intrigued by their marine mammal program, because she wanted to study maternal behavior in sea otters, which care for their young for a full year after birth.

At the University of Alaska, Chaya completed a degree in Biological Sciences and married her psychology professor. The couple had two sons and a daughter.
For every ounce of effort we give these children, they give back tenfold. The hugs given with their full selves, the kisses with all of their hearts, the way they appreciate life.
Chaya completed an educational degree and became a childbirth educator while running a Montessori school in her own home, with her own three toddlers attending. The couple divorced, but Chaya remained in Fairbanks, Alaska, so that the children could stay in touch with their father.

Chaya remarried, and her husband, Yisroel, worked as a youth counselor in the Alaskan prison system. Chaya gave birth to two more boys. At around the same time, both her father and her husband's father passed away. When her sixth child, a son, was born in 1991, the couple named him Avichai, which means "My father lives."

She took him home, nursed him and bonded with him emotionally before he was even diagnosed with heart problems as well as Down's syndrome. "When the doctors told me my baby needed open heart surgery, the Down's issue became secondary. I just wanted my baby to live. And it was a blessing that I bonded with him before I ever heard that he had Down's. I did not grieve for the 'perfect' child I expected. I learned to see a different 'perfect.'"

After Avichai's birth, Chaya began lighting Shabbat candles with her great-grandmother's candlesticks, which had reached the United States from Hungary with her father's mother, Ethel. Chaya had brought these precious candlesticks with her all the way from Far Rockaway to Alaska, when she was eighteen. "I remembered Grandma Ethel lighting Shabbat candles with these candlesticks and bringing down the light from the heavens into her home," says Chaya. "I also wanted to bring this light into our home on Friday nights."

After Avichai had open heart surgery at the age of three months, Chaya and her husband attended a conference for parents and professionals of special-needs people. "We heard a story of twins who had died at the age of eighteen due to congenital illness. They had written a family journal, and through these entries, their mother could see how wonderful it was that each had the other. I came home from the conference and asked my husband if we could adopt another baby with Down's so that our child's life would be better."

The couple registered with a special adoption agency, at that time the only one dealing with the adoption of Down's children. It was on Avichai's first birthday that Chaya received the phone call which brought Keren into their lives. A couple in Anchorage had given birth to a girl with Down's and didn't want to keep her.

"The biological parents came to bring us the baby. She was nine days old, gorgeous, blue-eyed, and blonde. They were joined by a four-year-old brother and a grandmother. They came at 10 a.m. and left at 2 p.m., and Keren has been ours ever since. I nursed her and Avichai together. They would hold hands as I held them."

Throughout this time, as the Ben Baruchs were becoming closer and closer to Jewish observance, they turned to Chabad emissaries in Anchorage, Rabbi Yossi and Esti Greenberg for advice, knowledge, and support on their spiritual journey. "Chabad is really the only thing Jewish going on in Alaska. Yossi, who comes from Bnai Brak, Israel used to joke that he was sent by the Lubavitcher Rebbe there to warm up the 'frozen chosen.' His wife Esti comes from Detroit. The only problem is that traveling from Fairbanks to Anchorage is an eight-hour drive. Still, we went to visit the Greenbergs as much as we could, and sometimes, they came up to us, too."

The Ben Baruchs began to investigate the possibility of living in Israel.
If only grandparents would say to the new parents who have had a Down's baby, 'I'm so proud that G‑d chose you to have this child!"
Chaya's husband went on a pilot trip to Israel, searching for a community that the family could call home. They thought that kibbutz life would suit them. Yisroel went from kibbutz to kibbutz, but not one was willing to accept a family with two special-needs children. Finally, Yisroel received a blessing from a rabbi in Jerusalem, who told them, "Don't worry about anything. Just come—you'll see miracles and wonders!"

In the summer of 1995, the Ben Baruchs arrived at the Absorption Center in Tzfat, in the north of Israel. "I remember our early days, with Yisroel toting Avichai (nearly four) in the backpack and holding Keren (nearly three) in his arms. People would cross the street so that they wouldn't catch whatever it was we had," recalls Chaya wryly. "Today, people cross the street just to say hello to my kids."

"When we were looking for a preschool for Avichai, we wanted him integrated into a normal kindergarten," Chaya recalls. "But no teacher in our area wanted to take him. Finally, I met Rachel. I told her I wanted her to take my son who has Down's. She said, without blinking, 'My pleasure!' Amazingly, her previous job had been to take care of abandoned Down's babies in the hospital. G‑d has sent us some of the best emissaries over the years."

"If only grandparents would give encouragement to their children who have had a Down's baby. If only they would say to the new parents, 'I'm so proud that G‑d chose you to have this child, to bring this tzaddik (righteous one) into our family'—because if everyone had this attitude, then no kindergarten attendant could say no to my child."

Yisroel and Shalhevet
Yisroel and Shalhevet
Two years after the family had come to Israel, Chaya was hanging the family laundry one morning when a friend mentioned that she had noticed a Down's baby all alone in the Tzfat hospital. Before long, Chaya was visiting the baby girl throughout the day and forming a deep emotional attachment to her. Chaya held her, sang to her, fed her bottled formula, and signed the record card, "Ima (Mother)." Eventually, Chaya and Yisroel wanted to bring her into their home to join their family, where there already were two other Down's siblings, Avichai and Keren.

However, the Ben Baruchs now came up against the Israeli welfare department, which fought against the family adopting this baby. "The policy in Israel is that if you already have two special needs children, you can't adopt a third. Finally, they let me take her home temporarily. It was Chanukah time, so I called her Shalhevet (flame)." The welfare department continued their opposition, granting the family only one-year and two-year guardianship of Shalhevet. It was not until she was eight-years-old that the Ben Baruchs were awarded permanent guardianship.

In 2005, Chaya heard about Ori, a one-month-old Down's baby boy abandoned by his mother in a hospital in the Tel Aviv region. Chaya began to visit this baby, too, in the hospital where he had been left. "One hour became two, two became four, and soon I found myself moving into the hospital to be near him twenty-four hours a day." Ori's mother wanted the Ben Baruchs to become her baby's foster parents, but the welfare department waged a bitter battle, suing Ori's mother for not putting him into an institution. "Miraculously, the judge we 'happened' to be assigned to, has his own daughter in an institution. He fully understood the difference between a loving, warm home and an institution, and awarded us permanent foster care of Ori."

Chaya with Ori
Chaya with Ori
Six months later, Ori underwent open heart surgery at Schneider Hospital in Petach Tikvah. Chaya had to leave all the other children with her husband in Tzfat and travel with Ori to the hospital. At the hospital, in the very next bed to Ori, was yet another abandoned Down's baby, a girl who had been left alone in the hospital for five months. Chaya found a wonderful home for the baby—amazingly, in the home of the woman lawyer who had victoriously handled the legal battle for Ori.

In this way, the Birkat Haderech organization was born, its goal to encourage new mothers to keep their Down's syndrome babies, or to help place these babies in loving foster homes.

The Ben Baruchs still maintain a close connection with Chabad in Tzfat. Yisroel studies Tanya in the morning. Two-and-a-half-year-old Ori often comes with him to their morning prayer services, before meeting his school bus. Yisroel continues Torah learning throughout the day at a yeshiva for baalei teshuvah (newly religious).

Avichai (right) and Keren (left)
Avichai (right) and Keren (left)
"My husband's and my perspective is based on three questions, and their answer: Is G‑d perfect? Yes! Does He only do what's right and good for us? Yes! Does He make mistakes? No! Our mazel (good fortune) is that we are both in this together. Someone else had to give birth to our adopted/foster children, so that they could come to us."

Chaya advises parents of Down's children to ignore conventional developmental milestones and accept their special-needs children at their own unique rates of progress. "Do I know how to love unconditionally? Absolutely." "Early on, I took the child developmental charts that said at what months a child should reach each milestone—and cut out the months. When my Down's children developed at their own pace, I asked myself these questions, 'Did it take longer than normal? Yes. Did he need more support? Yes. Would I have loved him any less if he did not reach a milestone? No. Do I know how to love unconditionally? Absolutely.'"

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Discussion (16)
March 2, 2011
I'm not sure what lead me to your article but I'm glad to have read it. I have a 4.5 month old beatiful girl who has Downs syndrome. She also has had heart surgery at just 10 weeks. She is thriving, smiley and cheery and the least trouble of the 4 children we have been blessed with.
I am shocked and speechless to hear that there are babies abandoned in hospital because of this condtion.
I think that your family is truly amazing and wish you continued mazel from each of your children.
Nicola
London, UK
August 22, 2010
beautiful
as a mother of only one child with down syndrome, i know the joy and love that abounds wherever she is.
you 2 are doing a wonderful job and please involve us if there is anything we can do from montreal
pamela chasen
montreal, canada
March 3, 2010
way to go, chaya!
my best wishes always.
rena g
Tzfat
May 31, 2009
Well Done!
You are both fantastic people. Well done for helping babies to find a loving home! Your children are beautiful :-)
Sophie Dodds
Durham, England
May 22, 2009
What a beautiful example you are to Mothers. You love the blessings of Hashem, without questioning how they come to you.
I have two sons. One has Asperger's syndrom and the other has non verbal learning disorder, both types of autism. They have both been the greatest of joys and blessing in the lives of myself and my husband. You are right when you say that Hashem does not make mistakes. He blesses us, and if we cannot see that, then it is our shortcoming, not his.
Bless you and your lovely family!
Anna
Calgary, Canada
April 11, 2009
Shifting gears
One of my sons has special needs that have doctors baffled. He is 11 and high functioning, but it was hard for me just a few days ago to accept that he will probably never grow out of his delays. (His reading is really, really low, among other things.)

I had to explain to him the other day what exactly is going on. The sky used to be the limit, but now I realize he will not go where I'd hooped he would, on his own. I used this analogy and he smiled and asked if I am his rocket. :) That makes me happy, yes, I am his Rocket Mom!

This article has come at a great time. Thank you for writing this.
Anonymous
February 22, 2009
Wonderful
My sister has DS... and I wish more families knew how much this event is a blessing... My sister is joy and beauty and kindness and love pure. Yours is a fabulous story of love and true faith. Thanks to Chabad for her story and may others learn from her example...
Anonymous
iowa city, us
July 28, 2008
Christina (Nice!!)
You are in incorrect agreement. Truthfully, God needs correction. The purpose of the Temple is to correct God, as this existence is not acceptable to us in its current state. The foundation of goodness is in mind, but what lacks is evidence that God is perfect. For example, I write my response with reverent obscurity, using the term God, as a noun.
Craig Hamilton
July 26, 2008
Perfection
"Is G‑d perfect? Yes! ...Yes! Does He make mistakes? No!"

I remember the moment I really got this. I worked at an institution for folks with developmental disabilities. One of the residents was M. Superficially, M was retarded, spastic, and deformed. He was non-verbal, couldn't dress or bathe himself, and certainly would never hold down a job or do any of the other things society deems "important".

Staff at the institution, when they were having a bad day, would seek out M, coming into the apartment where he lived and saying, "Where's my lovin'?"

At some point, it struck me: There was absolutely nothing wrong with M. He was a magnificent example of God's handiwork just as he was.

Knowing M has been on e of the greatest joys of my life. Locking M away in an institution cheated the community of M as much as it cheated M of his place in the community.
Christina
Johntown, PA
July 22, 2008
Great story!
Great article! G-d bless you and your family. I have a daughter with DS and she has changed my heart and perspective in ways I never could have imagined. She truly is a different kind of perfect!
Anna