A Spiritual Journey with Down Syndrome
ORI - The Sweetest Soul - R. I. P.
Chaya with Kirin, her adopted daughter and daughter-in-law. How can that be?
Individuals with disabilities, produced a range of products & ceramic imagery, at an artisan fair in Italy: Bernie Roitberg: "The world needs more of these heroes."
Publisher’s Note: The X Factor
“A nation’s greatness is measured by how it treats its weakest members.”
- Mahatma Gandhi
I first heard about Chaya Ben Baruch from my sister, Rivka Yarvachty (Shelly Feuer), who met Chaya at an adult study class in Tzfat, Israel. Rivka suggested that I watch a poignant wedding video of Chaya’s son and adopted daughter, who also happen to have Down syndrome. Then I listened to a podcast about Chaya’s life, which includes raising several children with special needs, and even donating a kidney. I contacted Chaya via email, and when she sent photos of her children with Downs, I was overwhelmed by the intrinsic happiness and inner beauty of each child.
After Chaya gave birth to her sixth child, Avichi, in 1991, she began bonding with him, before learning he had Down syndrome. While it’s often true that most parents experience emotional turmoil when a special needs child is born, once they start to parent their baby, these children engender a humanity that could only happen because of these children.
“If people knew how really great these kids are: how funny, loving, unpretentious, and savvy about reading others – but needing protection from people who might want to take advantage – parents would think twice about aborting or giving them up for adoption. So many women who birthed babies with Downs, were given ultimatums. I know women who were told by their husband: ‘It’s either me or that baby.’ Would it have been better to have aborted these babies, or kept them and ruin their marriage, or their other children's lives? Not that I personally think a special needs child destroys marriages or the lives of the siblings.”
Concerned about raising children with Down syndrome in the remote woods of Alaska, combined with their search for spirituality, Chaya and her family relocated to Israel. When they first arrived, people would cross the street to avoid eye contact with Chaya’s children who experience Downs. Now, the reverse is happening: people will cross the street, just to say hello. Chaya and her husband, Yisroel, have raised five children with Downs, saving abandoned babies from life in a hospital or institution. Studies prove that physically healthy newborns, fed and bathed, but without any nurturing, die. (See Appendix.) Chaya also launched an organization that keeps a list of families, who are committed to fostering babies with special needs, whenever a newborn is left at a hospital by its parents. Chaya’s altruistic donation of a kidney, to save the life of a stranger, was another test she had to do, for herself.
There are few people who have Chaya’s combination of character traits: brilliance; bravery; altruism; honesty; and her ability to love, whether it's her own family or other people’s children. It is our aspiration for the reader to appreciate the uniqueness and joy that Chaya and her husband, Yisroel, have experienced as parents of children with Downs, and to open the hearts of people, across the globe.
When my son, Avichi, and my adopted daughter, Kirin, informed me that they would be getting married, Avichi put his MP3 in my ears, with Yaakov Shwekey’s song: “Boee Beshalo.” He told me:
“This is the song to play when I put the veil on Kirin.”
He said that they would practice the wedding ceremony. When I heard this beautiful, appropriate song, I started crying, since it’s a very emotional song. Avichi then told me, that if I am going to cry like that, forget about using make-up at his wedding.
I chose not to wait any longer and to marry them, with an OK that they could continue to go to school and work as a married couple. I knew I was being a maverick, pushing the school to places they were not ready to go. I had actually brought my camera when I visited for Shalhevet's birthday, and on the transport bus, I snapped a picture of two girls with Downs kissing each other on the cheek, in the back of the bus. I showed the principal and assistant principal the picture, explaining that I was not threatening anyone; but if they continued to ignore that young people with special needs desire love, friendship, and intimate physical contact, they were missing it. They told me they were aware of these needs. But in the ultra-orthodox world, the young men and women are placed in segregated group homes. If Shlomo is developing a more intimate relationship with Leah, the couple still live in separate homes.
Avichi, as a young teenager, could verbalize: “I like girls, Mom. I don’t like guys.”
He was referring to intimacy. Had my son told me he preferred men, I hope I would have enabled him to share his life with some young man, whom I would have loved like a son, as well.
The school asked us to keep the wedding small, since there would be many friends with special needs present, and to hold off until July, when the students would be on summer vacation, so they would be distracted and less jealous. Having a small wedding was fine with me. We were the parents of both sides, so we always knew what the other side was up to, but we were paying for it all, as well. Kirin was on the shy side, so she was fine with a small wedding, but Avichi, who could run for mayor, was going up to all his friends and acquaintances asking:
“Are you coming to my wedding?
“Are you bringing your grandmother?”
“Are you bringing all seven of your kids?”
People who had given birth to brand new babies with Downs wanted to come, just for the ceremony. We could not say no.
I had to have pre-planned seating, so the friends with special needs had a teacher or assistant at the table, who could interpret for the waiters. We invited people in wheelchairs, so I needed them placed close to the chuppah – which is a canopy, under which a Jewish couple stand – during their wedding ceremony. Everything I ran through my head at night, to see what needed to be planned for.
The invitations were pictures of Avichi and Kirin together as children, designed by a friend, who is a graphic artist. She and her husband adopted a child with Downs. She asked me to publicize the wedding, so that in the future, it would be easier to marry her daughter. We were helping pave the way to legal marriage, under Jewish law, for special needs couples. Up until then, few Rabbis were willing to marry individuals with certain disabilities, including Downs. Rabbi Shmuel Eliyahu was one of the first Rabbis to officiate at such a wedding. Avichi and Kirin met with the Rabbi in his office a few times, to determine that they understood what they were taking on. He saw their determination, resolve, and connection.
I remember getting the phone call from Jeanette, the school psychologist, after she had met with Avichi and Kirin.
“I get it. I see their beautiful connection. She finishes his sentences and he fixed her back zipper, like any couple would, without fuss – just a natural gesture among couples.”
Once, after Avichi exploded during the courtship phase, I asked Kirin if she was really sure she wanted to marry him.
She very surely answered:
“Mom, I love him,” with a look that said, “It’s Avichi – I know what I am getting into.”
The day of the wedding, we had three photographers and Avi, our video photographer, who had filmed the children over the years, when he was a student of film, and later, as a professional. Our friend and neighbor did Kirin’s and my makeup. Kirin’s and Shalhevet's dresses came from eBay, and just needed hemming. Shalhevet wore light green, to bring out her eyes, along with a flower wreath in her hair. The veil was simple: I put a blond rinse through Kirin’s hair; we trimmed a bouquet of flowers, and used some for a boutonniere for Avichi and Yisroel. The rest of the flowers we put in Kirin’s hair. She just glowed. Loosening up with the photographers, she was a natural beauty – poised, genuine, and everything a bride could be. Avichi asked his teacher and his wife to help with the other “parents” walking the couple to the ceremony. The band was made up of an extremely talented musician, who taught at the children's school, along with two of his friends. The place cards were attached to individual flowers, in take-home, laser-cut decorative white paper boxes, adding color. The waiters were wonderfully patient. I wore the same dress I had worn to an older son’s casual boat wedding, in Boston, the year before. We had to go all over Tzfat, at the last minute, to find a purple tie that Avichi wanted to wear, but forgot to tell me about. The wedding was outside, in the courtyard of an ancient old building in Tzfat. About three hundred people showed up, invited or not.
Avichi had been watching wedding videos, and knew the groom whispered something to the bride, when he put on the veil. He surprised us all when he whispered into Kirin’s ear, loud enough for us to hear:
“You are the most beautiful bride in the whole world,” as everyone who overheard him, had their makeup smeared.
When Avichi said the blessing in Hebrew:
“If I forget you, oh Jerusalem...” and stepped on the glass (which really was a light bulb, that we practiced stepping on at home), there wasn’t a dry eye in the place.
After a Jewish wedding, the bride and groom go to a private room, to what is called a “together room.” The bride and groom are given this private time alone, after their usually emotional wedding ceremony. Sometimes they eat; sometimes they kiss and touch for the first time, as husband and wife. There was a microphone on Avichi, that the videographer forgot to take off, and so he heard these intimate moments after the wedding. He asked me if I wanted to know what they said to each other. Curious me, said, “Of course!”
Avichi said: “So how was it?”
Kirin replied: “I cried.”
Avichi added: “Me too.”