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?
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.
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."
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.”
After reading Chaya's Angels, I was brought back to my memories of working and caring for adults and children with Down Syndrome. What came back so profoundly was their purity of heart, with no hidden agenda other than love. They give so much of themselves and are truly a blessing for those fortunate to know them. That was the biggest lesson for me. Even though I am a senior now, I would openly take care, spend time in whatever capacity, to be with these angels. They make you open your heart because they are already open waiting for your love. Yes, Chaya has a big heart, and her rewards were love and more love from these enlightened people. The wedding Of Avichi and Kirin made me cry. Two people with Down syndrome overcame other people's opinions of how they should live their lives. Chaya recognized this. They are pioneers forging ahead, teaching us that love need no limitations.. Trust the power of love. Humanity needs a reminder of our own potential for love and to share it.
EG's Reality Press
Chaya’s Angels: A Spiritual Journey with Downs Syndrome, is an honest, no-holds-barred account of the life of an incredible woman, who has devoted her life to rescuing and caring for special needs children – not in some cold, clinical, institution, but in her home, and in her heart. Chaya makes no bones about sharing the trials and tribulations, the hardships and heartache of caring for and bringing up these special children – and sometimes losing them. But most of all, Chaya’s Angels shows us, in a vivid, personal language that speaks from the heart, the joy of having a special needs child in our lives, as part of our family. Chaya lets us feel the pure love that these children radiate to those around them, and helps us to understand that these children really are just that - special. And if this book does nothing more than persuade just one family to think twice about giving away their newborn special needs baby - for that, it was worth writing. But Chaya’s Angels is a very powerful, moving book, and I believe it will do much, much more than that.
Every pregnant woman fears the possibility of birthing a child with special needs, but Chaya Ben Baruch, in her spiritually uplifting book, Chaya’s Angels: A Spiritual Journey with Downs Syndrome, teaches the reader the true beauty of raising these special souls. Chaya’s book allows the stereotypical belief of Downs babies to crumble: she removes all the negative labels attached to them; depicting their true beauty and inner light.
Chaya takes the reader on an epic journey into the personal lives of she and her husband, as they dive into the unchartered waters of raising multiple Down syndrome babies. Gifted with an overflowing love and a passion to meets the needs of these babies, Chaya and her husband love these children unconditionally. They band together, through love and devotion, to give these children exactly what they need to thrive. As a result of reading Chaya’s book, I learned key information and extensive details about the demands of parenting special needs children. I also learned the rich rewards bestowed upon the brave of heart, who dare to embrace this difficult task.
Anyone who has an interest in reading an amazing story of inspiration, or is curious about what it takes to raise babies and children with Down syndrome, will benefit from reading Chaya’s Angels. This book is a powerful contribution to children and adults with special needs, giving the reader a deeper understanding of the joys and rewards of life with these remarkable individuals.
Ariella Bracha Waldinger
Truly Wonderful Story
After reading this book you'll never struggle again with the question "should these children be born?" Differently-abled people have as much right to be here as anyone else and maybe more --- as the story shows us, they teach us way more than we teach them. Spirituality doesn't have to mean going out on a mountaintop to sit in silence... it also means making the world a better place. That message comes through loud and clear.
Thank you for bringing this amazing story to the attention of the world. It's a quick and easy read, since the writing is seamless. We live near a group home where special-need adults live and we are fascinated by their range in abilities and coping methods. Also, their care givers seem patient beyond belief and enjoy their work.
Professor Emeritus FRES
Simon Fraser University
Chaya’s Angels: A Spiritual Journey with Down Syndrome, is an amazing book due to this amazing woman. I could not put the book down. This is a heartwarming story based on Chaya’s life. It reflects all the joy, struggles, and pain she has unselfishly experienced in her journey, to raise five children experiencing Down syndrome. The children themselves are wonderful and so bright: they shine like a new penny.
I can’t imagine being able to do all the things Chaya has done in her lifetime. It seems more like several lifetimes crammed into one person. She definitely walks to the beat of a different drummer. I feel in awe of all her accomplishments. Chaya’s Angels is definitely a book that could be made into a wonderful movie. Don’t wait for the movie: Get the book!
If saints exist, then Chaya Ben Baruch is one of them. She’s an exceptional person in every way: I was exhausted just reading her story, how she lovingly raised five children with Downs, an enormous task for anyone to take on. I imagine that it’s hard enough raising one child with special needs, never mind five! This is also a very well written book, dividing so many topics into chapters, thus making it easier to focus, since there was so much happening in Chaya’s life. Although I don’t normally read books like this, I couldn’t put Chaya’s Angels down, reading it in one sitting. Most men stay away from this type of book, but I wholeheartedly advise them to read Chaya’s Angels, because of the extraordinary life of this impressive woman.
The Art of Giving that some are blessed with. A beautiful, beautiful story filled with wondrous relationships, love, and kindness. Favorite one yet, Elaine. Congratulations!
Ray of Hope
As a parent of a special needs child with Down's Syndrome what a ray of hope. I encourage other parents who may have a similar child to order this book, or send it as a gift.
Sat D. Khalsa