Yona Yacobowicz doesn't like to ask why. As a mother of two severely handicapped children who has an intensive care facility in her Jerusalem apartment, the question, she says, isn't very productive. Yacobowicz instead, tends to work on the matter of how.
"We all go through our own private hell and asking why doesn't help," she says simply. "But how we deal with it, how we go on from there, that's what makes us better people."
The 43-year-old former New Yorker was until now best known as the founder and drummer for Tofa'ah, billed as the Jewish world's first female band. But her recently published memoir, The Miracle Next Door, has catapulted her into the world of English-language religious publishing as well, where she has become something of a star in the genre of inspirational self-help.
The Miracle Next Door, which was written together with her neighbor Malka Adler, and was released in November, is about Yacobowicz's experiences raising her two handicapped children, despite her own disabilities - all the while maintaining a devotion to music, family and spirituality.
"Pain is inevitable, but it is our choice not to suffer," she explains.
Yacobowicz, who is celebrating Tofa'ah's 25th anniversary this year, tells her life story with remarkable ease. She herself suffers from Stickler syndrome, a disorder that causes a genetic malfunction in the tissue connecting bones, heart, eyes and ears. Though she began noticing symptoms at age 19, with increasingly debilitating rheumatoid arthritis, it wasn't until her eldest son Yisrael Meir was born, that Yacobowicz was able to diagnose herself.
Stickler's, which is associated with problems of vision, hearing, bone and joint structure, affects an estimated 1 in 10,000 people, but only a fraction of them know it. Though she is less affected then her son, Yacobowicz goes through difficult bouts where she is unable to get up and walk. Her drumsticks, like many household appliances, are permanently altered for an easy grip.
Yisrael Meir, now 10, was born with one of the most severe cases of the disorder. Along with many other abnormalities like club feet and a cleft palate, his mouth was malformed, so that his airway was almost completely blocked. As an infant he had a tracheotomy, which allowed him to breathe with the help of machines, and by the age of one, he had undergone two heart surgeries, as well as septic shock, which leaves him today unable to stand alone. He received food intravenously and had to be connected to a catheter as well as oxygen.
Some doctors told Yacobowicz to let her child die, she recalls, but she and her husband refused. They set up an intensive care unit in their home, became friendly with most of Jerusalem's medical staff and gradually became used to the midnight ambulance rides across the city, as well as to Belinson hospital in Petah Tikvah.
By the age of three, Yisrael Meir was enrolled in the ALYN children's hospital preschool. Two years later, his trache - the tube that was attached to his trachea to allow for the passage of air - was removed. He still needs help feeding himself and gets around only with the help of a walker. He understands both English and Hebrew fluently, but cannot speak clearly or write because he lacks complete control of his hands. When communicating, the 10-year-old often points to a picture board instead.
But for Yacobowicz, these facts only further prove that her son is a gift from God.
"People who see my son see a spark of light and joy," she says. "There's something intangible about him that I can't describe. He helps me grow, and give and get to other places so that I can see the grander picture."
Two years ago, Yacobowicz gave birth to another son. Like Yisrael Meir, Eliyahu has Stickler's, albeit a more mild form. But he was also born with Down's syndrome - a completely unrelated genetic phenomenon that she refers to as another "gift."
The family has a nurse on duty at their home every night to care for both children, and medical costs are subsidized almost exclusively by private donations.
Yacobowicz knows that people look at her with a mix of consternation, awe and disbelief, but none of that seems to bother her much.
"I'm not walking around with rose colored glasses on," she insists. "I'm very much in the real world. But that world is beautiful, with laughter, joy, kindness and happiness. When my son takes a breath, that's a miracle. I see it and it makes me high. But not everyone sees it."
"Yisrael Meir and Eliyahu keep me in balance," she writes. "To see the love and compassion they have for one another is a gift that I treasure. There is no processing in their perception."
Sharing her experiences with the public has been especially meaningful for Yacobowicz. "I have been given this job, this gift, this child," she says, "and it's my role to show people that they can do it too."
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