Yona Yakobavitz

Ask anyone who has read her book what first comes to mind when they hear the name Yona Yakobavitz, and they'll struggle to sum up a story of faith in the face of extreme pain and overwhelming odds.

Yet, when I spoke with Yona herself, she couldn't stop telling me what a charmed life she's had. Not that she doesn't acknowledge that she's had challenges, but they are so far from her focus that I don't think she would have mentioned them if I hadn't brought them up.

Yona was equally spoiled, as she puts it, with regard to secular learningIn her own hands, this would be a story about a girl who grew up in a magical sort of world surrounded by the best of everything, and has simply tried to give something back. Yona grew up in a large, loving family. Her parents had become Orthodox a few years before she was born, and opened their home to others looking for classes, Shabbat meals, or someone to talk to. Through her older brothers, who had also become religious and were learning in yeshiva, Yona learned the teachings of Torah scholars from many different streams of Jewish thought. They introduced her to the world of Chassidim, as each summer Chassidic Rebbes of various courts would travel to Yona's hometown of Saratoga Springs, NY to benefit from the mineral springs there. As a young girl, she would go to their tisches (gatherings of Torah discussion and song held around the Shabbos table of a Rebbe), and receive blessings from them. Yona was equally spoiled, as she puts it, with regard to secular learning. Saratoga Springs is the summer home of the New York City ballet and the Philadelphia Philharmonic, as well as being the site of a number of music and arts festivals. From a young age, she was able to study with musicians who were at the top of their profession, and she enjoyed a life rich in the creative arts.

For Yona, there was never any dichotomy between the two. She always saw creative expression, particularly in music, as something spiritual - a way to reveal G‑dliness in the world.

At nineteen, having just begun college and filled with dreams of a future life in Israel, Yona was diagnosed with a rare blood disorder. An aspiring musician (she has played piano since the age of five and began playing drums soon after), she was suddenly suffering from rheumatoid arthritis as well. Just to be able to eat properly, to walk, to do the most basic things, Yona had to learn how to use her limbs all over again. However, she didn't stop at relearning the basics. She learned how to continue playing music -- despite a disease that had completely changed the way her hands moved.

"I knew that I had a choice," she says. "I could choose to be a victim, or I could choose to be a survivor. I chose to be a survivor."

Despite being confined to a wheelchair for over a year, she managed to finish university on time, with a dual degree in Early Childhood Education and Music. She promptly left for Israel.

In what was becoming a pattern for Yona, she took her own experiences and turned them into a way to strengthen others, playing music every Friday afternoon for hospital patients, residents at nursing homes and elderly hostels, and for students at special education facilities.

"I knew what it was like to be in a wheelchair, and I knew what music did for me," says Yona. "I wanted to be able to give that to someone else."

Soon, another event took place which would show Yona that many more people needed opportunities to hear and to perform music.

For five years, she and her husband waited and prayed for a childIn 1981, Yona helped to organize, and also performed in, a women-only concert to benefit a young family that had lost their home in a fire. After the concert, Yona realized the deep need that women had for opportunities for creative expression. Soon after, Yona founded both an all women's band called "Tofa'ah ("Phenomenon" in English), and the arts festivals Tof Miriam. The network of friends she built up through Tofa'ah and Tof Miriam, as well as the strength she derived from creating music, have both been lifelines for her over the years.

Several years after starting the band, at the age of thirty-four, Yona was married. For five years, she and her husband waited and prayed for a child. They underwent every possible medical treatment. Finally, they were blessed with a son whom they named Yisroel Meir, after the Chofetz Chaim, one of the leading Jewish figures at the turn of the century.

Doctors had little hope that he would survive.

At birth, Yisroel Meir's airway was blocked and he was diagnosed with a number of disorders. Many of them were related to a disease known as Stickler Syndrome, a connective tissue disorder. Initially, though, doctors didn't realize that he had the disorder. What they did see was a baby with an internal cleft palette, a narrow airway which was blocked by his tongue, club feet, and two holes in his heart which required two open heart surgeries by the time he was fourteen months old.

It was Yona's cousin, a speech pathologist, who recognized that the cleft palette and club feet might indicate Stickler Syndrome, and once Yisroel Meir was diagnosed, the doctors realized that this disorder was also what had caused his mother's arthritis and difficulty in walking (Yona has used a cane since she was twenty). Stickler's can affect any of the connective tissues in the body, possibly leading to complications in any of the many limbs and organs.

Immediately after birth, doctors inserted a breathing tube in Yisroel Meir's throat. It remained there for five years. In those first few months, he needed oxygen twenty-four hours a day, and until the age of six-and-a-half he had to be attached to pure oxygen several times a day.

Yisroel Meir was five months old when his parents were able to bring him home from the hospital. He was still dependent on machines, and Yona had undergone special training to take care of him. The nursery was set up like an ICU, and a certified nurse was present twenty-four hours a day.

Nonetheless, he is a very bright, upbeat young man"All of this just really drew out our love for him, and it forced us to really be there for him, maybe more than we would have been if he was a healthy child," says Yona of the constant, round the clock care that her son required for so many years, "and it drew the community together, because we needed support, we needed people to come to doctors' appointments with me because I was often sick as well. People have also accompanied me to the hospital for my own treatments."

Despite all of his many medical treatments, Yisroel Meir still has some speech problems and uses a communication board at times. Nonetheless, he is a very bright, upbeat young man who, in addition to being completely fluent in English and Hebrew, is able to understand conversations in both French and Spanish. He is also able to communicate in sign language. Recently, he celebrated his bar mitzvah. Sadly, he lost sight in one eye soon afterwards, due to the Stickler Syndrome, which caused a retina to detach. Doctors inserted a buckle into his other eye in the hopes of maintaining its sight.

Five and a half years ago, Yona gave birth to another son, Eliyahu. Eliyahu was born with Down's Syndrome. He was also born with clubbed feet and spent the first three years of his life in and out of the hospital.

The author's sons, Yisroel Meir and Eliyahu

Like their mother, both Yisroel Meir and Eliyahu have chosen to be survivors. Both boys win over everyone who meets them, with their bright, charming smiles. Both boys have defied medical odds that were stacked against them. Both have learned to walk and to speak - albeit imperfectly - and amazingly, both are avid drummers. They have learned how to express a range of emotions and digest the complexities of their lives through music. With music, laughter, and above all, a deep, lasting love and faith, Yona and her sons have created a magical life of their own. It is as filled with Torah, creativity, music, and friendship, as Yona's own childhood was. For a few precious hours a week, the boys even get to enjoy what for them is a very precious gift: freedom of movement. In addition to water therapy, Yona also schedules speech therapy, physical therapy, and as many other things as she can to take place in a local pool. The buoyancy of the water gives Yisroel Meir and Eliyahu greater control over their bodies and the chance to move freely.

Yona worked hard to build the life that they now haveBut none of this came automatically. Yona worked hard to build the life that they now have, and she often emphasizes that it has been possible only with the support of her fellow band members, the many women whose lives she has touched through Tof Miriam, and her community in Bayit Vegan, Jerusalem.

Over the years, Tofa'ah has touched the lives of thousands through their music and their support of Jewish women in the arts. Although today female artists are accepted on the Jewish music scene, when Tofa'ah began, they were the first - and for a long time the only - all-female band in the world of Jewish music, and one of very few worldwide. Adding to their uniqueness, they have always played only to female audiences. Many people thought this would hinder their careers, but three decades and eight albums later, other musicians, both male and female, eagerly seek out their advice. They have played at national and international music festivals, always for women-only audiences, and they are regularly invited to play special concerts for the Jerusalem Municipality.

Their groundbreaking work as performers and as supporters of women in music has earned them a place in the archives of both the Hebrew University and the Rubin Academy of Music in Jerusalem. A documentary on Tofa'ah, which was filmed several years ago, won first place at the Steven Spielberg Film Festival and is still shown regularly in Israel.

Today there are women in South Africa, England, America, and Australia who were involved with the band and now in their communities they are doing music workshops, performing, and spreading the unique message and experience of Tofa'ah.

"When we write, we focus on who we are as Jewish women. The music is a way to bond and to share and grow together. It spreads a lot of joy."

Yona maintains a network of people she has made contact with through music and keeps in touch with regularly. They have become a part of her circle of friends, a circle that extends to communities all over the world.

"In the end, it is about learning to love""You have to have someone you really trust that you can speak to, or you can't make the best of what life gives you. You have to cultivate solid friendships, but you also need a mentor you can turn to.

"In the end, it is about learning to love. It's about loving one another. Every person has their gift and we need to help each other to tap into that gift."

Three years ago, Yona went through the added challenge of divorce. Today, she and her children share their apartment with another single mother and her family. With many shared goals and some shared challenges as well, the two families are strengthening and supporting one another.

Yet, Yona admits that always being positive isn't possible or even necessarily helpful. She also makes time to cry and to grieve. Nonetheless, she cherishes the life that she has.

"My life wouldn't be perfect for everyone," she admits. "My children wouldn't be perfect for everyone. But they are perfect for me."