What’s in a name?

This week, he turned 19! That means it’s been six years from one of the most awe-inspiring and humbling experiences of my life – and the reverberations remain. This story really began over a decade earlier. It’s a tale of patience, courage, devotion, and love.

In 1998, my brother, Yoseph, told the family that he and his wife, Ophira, were expecting their fifth child. This unborn child, he informed us, had an extra chromosome #21. We quickly learned what that meant – their child would be born with Down Syndrome.

When he was born we all attended the brit, including our parents who flew in for the occasion from America. I remember our mother, ob”m, commenting on the tough job that lay ahead for Yoseph and Ophira.

They named their new son Matanya, meaning “God’s gift”. This name would inform their entire relationship with him.

It is well-known that children with Down Syndrome lag developmentally and cognitively, and have life-long limitations both physically and intellectually. Yoseph and Ophira accepted these challenges with love and gratitude.

Fast forward 13 years. It is time for Matanya’s bar mitzvah. A few years earlier his parents “mainstream”ed  him – that is, rather than attend special education classes he entered the regular classroom. He integrated well and his whole class and teachers showed up for his bar mitzvah party. Many spoke about how much he contributes to the school with his constant smile, cheery disposition and unqualified love for all.  But this story is not about that – join me as we move a few days forward…

Shabbat of the bar mitzvah – Matanya receives his aliyah la’torah (calling up to the reading of the Torah). He receives the aliyah  of maftir – the aliyah that also includes chanting the haftorah, the corresponding section from the Prophets. The congregation holds its collective breath. Matanya, a bit nervously, like every bar mitzvah kid, recites the blessings. The entire congregation thunders its response. The reader finishes the weekly portion – the Torah is raised, rolled up and covered.

Time to chant the haftorah and Matanya is standing at the bimah (reader’s desk).

Atypically, absolute silence reigns in the sanctuary. Matanya’s voice is not strong. However, it is clear and melodic as he carefully and meticulously recites the blessings and chants the haftorah. As he reads, the customary whispers among congregants are nonexistent. Everyone leans forward, listening to this incredible feat. With an occasional gentle correction from his father, who stands nearby, Matanya sings the ancient words to the traditional melody. He finishes reading and recites the after-blessings. Candies rain down upon him as the congregation erupts in singing and dancing.

We sang and danced for a long time.

How did Matanya, with all his challenges, accomplish this? A lot has to do with his relationship to his parents and six brothers and sisters – something I began to understand only after I heard Yoseph’s speech at the Kiddush. We’ll come back to that.

Many Israeli children find it fairly easy to chant the haftorah. Reading Hebrew is, of course, no great challenge for an 8th grade Israeli . The text is read from an ordinary printed edition, with cantillation marks indicating the melody right there on the page. It takes a few weeks of practice, but is easy compared to reading from the hand-calligraphed Torah scroll, which lacks punctuation and cantillation marks.

For Matanya, however, chanting the haftorah was no easy task. Most would have thought it beyond him. How did he reach this amazing goal?

When Matanya turned eleven, Yoseph set this ambitious goal for himself and Matanya. For two long years, he arduously, carefully, and patiently taught Matanya the words and melodies. They slowly worked their way through it and practiced over and over and over.

We know how difficult it was for Matanya to learn to read at all. Most would have thought it impossible for him to accomplish this goal – or would have lacked the courage to try. We know the long hours Yoseph spent with him and his incredible patience as he brought him further and further along. He taught him not only the haftorah, but the joy of accomplishment. And now we know that he taught Matanya – and all of us – that great things can be achieved with patience, hard work and endless love.

As I write these words – words that have been percolating within me for years – I feel again the awe and inspiration I felt then. And I still feel humbled by the immensity of their accomplishment.

Back to that incredible Shabbat Bar Mitzvah…

The services come to an end and the celebratory kiddush is held in the hall next to the sanctuary. Yoseph speaks, learned as usual. His drasha draws to a close:

“… The schools of Hillel and Shammai argue about how one fulfills the commandment of ‘be fruitful and multiply.’ Beit Shammai argues that one must have two sons, while Beit Hillel reads one son and one daughter. There is also a minimalist position that holds one child, of either sex, fulfills the commandment and a maximalist position that states fulfillment is achieved only with two children of each sex.

“While there are many source-texts that each side uses to base his position, one can also understand the opinions by thinking in terms of family wholeness. For example, a family without a father or mother, G-d forbid, is lacking in wholeness. Similarly, a family needs at least one “representative” of the next generation for wholeness – this corresponds to the minimalist opinion that one child of either sex fulfills the commandment. Not all couples are that fortunate, but the vast majority that do can find joy in their good portion.

“Similarly, the opinion that one boy and one girl are required, reasons that family wholeness is achieved by having a “representative” of each sex in the next generation. Fewer families have this good fortune, but the majority still do.

“The maximalist position, that requires two children of each sex, reasons that wholeness is achieved also in terms of the children’s siblings. As one who grew up in a family of four sons and one daughter, I can relate to this position. I have both brothers and a sister. My sister, however, has only brothers and no sister. The maximalist position wants each child to have at least one brother and one sister – and that is considered a whole family. Many families do not achieve this level of wholeness, but those who do can consider themselves fortunate and rejoice in that.

“Now, if you were to ask me, I would say that a family without a child like Matanya also lacks wholeness. The vast majority of families do not have that good fortune. We that do are truly fortunate.”

Matanya – God’s gift.


Matanya celebrated his Bar Mitzvah on parshat Vayechi – this week’s Torah portion.

Matanya at kotel
Matanya at the kotel on the occasion of putting on tefillin for the first time.

 

Matanya & Yoseph at kotel
Yoseph helps Matanya put on tefillin
Matanya now
Matanya at a recent family event.
About the Author
Yosh Mantinband was originally a Texan and grew up in the Show-me State, but for over 30 years has been a proud Israeli. While much of his professional life has been spent doing boring stuff like engineering, his interests and activities are far-ranging. Not only that, but he is also proficient at headstands, a master of Bob-a-Loop and a string figure aficionado.
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