From challenging beginnings to a proud bar mitzvah moment on the bima

From challenging beginnings to a proud bar mitzvah moment on the bima

Hillel as Pharoah.
Hillel as Pharoah.

“All beginnings are difficult.”

This rabbinic maxim resonates on many levels. We experience the challenge of beginning a new job, a new phase of life, a new relationship, or a new place of residence.

Imagine the challenge of being told that your child is to be born with a very rare abnormality, so rare that there are very few specialists in the country who can treat your child, and so rare that even for you to learn about it, the literature on the disorder was new and sparse.

That certainly would make a beginning very difficult.

Shani Abelson and Jerry Schneider of Teaneck faced that challenge with their son, Hillel, who was born 10 weeks premature and with SOX2 anophthalmia syndrome, a rare disorder that is characterized by abnormal development of the eyes, sometimes other parts of the body, and other comorbid traits.

Luckily for Hillel, said his mother Shani, he had one of the mildest cases on record when he was born in 2009.

Still, he was born with a left eye missing and the challenges of a premature baby. That meant protracted hospital stays and to date, 13 eye and plastic surgeries.

“Hillel is very bright, curious, smart and a born performer,” said his mother, Shani. “He is someone who is not self-conscious.”

Hillel enjoying the great outdoors.

The boy who started off with the hurdles of health challenges, took to the bima on the Shabbat after Passover and at Congregation Shaare Tefillah of Teaneck recited the Torah portion Acharei Moth and its Haftorah, made a speech and gave a d’var Torah. A tour de force that began two years earlier with his mother as his teacher.

“We started two years ago, but he learned to lein in a year,” she said. “So, he got to practice a lot. He’s a good orator and very poised.”

There is certainly pride in every parent who witnesses their child become a bar or bat mitzvah and reach this important Jewish milestone.

Shani and her husband, Jerry’s pride, was immense.

“When he was born, things were so unknown. We didn’t know what his intellectual potential would be and how he would develop. There were developmental delays. But we never treated Hillel differently. We expected the same from him as our other children (Hillel has two older siblings, Zakai Jacobson, 29, and Shamai Schneider, 17). We expected excellence and worked with him to reach or exceed his potential.”

Another thing, she said was that Hillel was buoyed by the community.

“When you are brought up in a community that is full of warmth, tolerance and values substance over appearance and you are enveloped by love, great things can happen.”

Hillel, now a 7th grader at Benjamin Franklin Middle School, and a student at Jewish Youth Encounter Program, had people from all over visiting the shul on the Shabbat of his bar mitzvah.

“It was not only friends and family,” said Shani, “He has fans, people who just wanted to be there. His teacher came from his school among others.”

For his part, Hillel said that he had a great teacher in his mother for his bar mitzvah parsha.

But when it was over, “I felt relieved and happy.”

In addition to hiking and other sports, like canoeing, Hillel loves history, especially U.S. history of the nation’s presidents.

As a bar mitzvah gift, his teachers gave him an 800-page book on the presidents.

Dr. Debby Rapps, founder and director of JYEP, of which Hillel attends a class for children from traditional homes who do not go to day school or who are non-traditional learners, had high praise for him.

“Hillel is a true inspiration to all who are lucky enough to meet him,” said Dr. Rapps. “He is always smiling, has a pleasant disposition, and a very likable personality.  The word ‘no’ and ‘I can’t’ are just not part of his vocabulary.”

Inspiration, indeed.

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