jewish stories

Praying for the Death of a Son
by Sarah Manning
Based on a true story

“Perfecto, abuela! Mazal Tov!” He is perfect, grandmother! Congratulations!” Shalom’s heart was bursting with emotion as he called his mother with the long-awaited news of the birth of his first son. Bursting with the hopes and expectations of this precious new generation of his family, Holocaust survivors from Europe who had settled in Buenos Aires, Argentina.

Less than three years later, Shalom was praying for his precious son, David, to die. Secretly and painfully, Shalom could not bear the thought that he would one day leave behind a boy without anyone to care for him. David had been diagnosed with autism, and the prognosis was deeply depressing. He would never be able to look after himself and would always need to be cared for by people who were patient and tolerant of his mood-swings.  Instead of bringing forth a son who would make a difference in the world, Shalom now had to worry who would protect David after Shalom's passing.  Shalom and his wife Sarah were struggling themselves to manage their son’s mercurial temperament while caring for their new baby, and as he grew bigger, life only got harder.

For 15 years, Shalom carried the pain and fear in his heart. Instead of looking forward to a bright future for his son, he saw only difficulties. He didn’t hate his son, but he knew how difficult it would be for David to outlive him and his mother. As they were blessed with more children, Shalom felt terrible knowing that part of the inheritance he would leave his other children would be the responsibility to care for their "damaged" older brother for the rest of their lives. How could he blight their futures with such a burden?

One day, Shalom and Sarah took the momentous decision to move with their family from Buenos Aires to Jerusalem. They wanted to be a part of a bigger community than they had in Argentina, and to give all their children more Jewish possibilities. They couldn’t let David’s problems hold them back, and they privately hoped that they might find some kind of institution in the Jewish state which would relieve them of the daily care of their almost unmanageable son.

Their move brought new challenges – a foreign language and unfamiliar surroundings, but their researches brought them to the door of Rabbi Chaim Perkal of Alei Siach Institutes in Jerusalem. Perhaps it was the stress of the move, or perhaps it was his kindly face, but Shalom found himself breaking down and confessing the content of his daily prayers for David to die. The Rabbi’s gentle face showed no disapproval, but he held out his hands to grasp Shalom’s shoulders. “I understand your pain”, he said. “I have two children who have severe developmental disabilities, and I too thought that their lives were blighted beyond hope. But I didn’t pray to die. I prayed for the strength to help them and other children like them.”

Taking Shalom by the arm, Reb Chaim led him and Sarah out of his office into a small room crammed with colorfully painted ceramics.  Silently they followed him into a second room where autistic boys were being helped to take off their tefillin at the end of the morning prayer service. They watched as the young adults – clearly autistic - went in to make their own breakfast, with some gentle encouragement and supervision from assistants, and saw the workshop benches already set up for their day’s work.  Boxes of candy and toys, ready to be put into bags, and trays of nails and screws for counting into boxes for sale in hardware stores around Israel.

“The boys receive a weekly wage for this work”, explained Rabbi Perkal. “Once they have learned to come on time and to complete their tasks, many of our students go on to employment in stores around Jerusalem, stacking shelves and packing boxes.  The girls painted the beautiful ceramics you saw before.  The young men and women who are more affected by their autism will stay here, in this loving environment, picking up new skills and making whatever contribution they can. We protect them from the tough results-driven environment that they are not equipped to deal with, but we give them a work setting where they can achieve different goals and feel good about themselves.”

“Where do they live?” asked Sarah. She was immediately told about the network of apartments around Jerusalem where autistic young adults live with trained helpers. They learned to look after themselves – to operate the washing machine and to prepare and serve simple meals – and they celebrated Shabbat together with volunteers from the surrounding community, who appreciated the opportunity to spend time with these ‘special souls’. Having tried everything else, and recognizing that here was a place where David would be treated as a person of value, Shalom and Sarah agreed to give it a go.

David was initially hostile when his parents brought him to Alei Siach for the first time. Suspicious of the other boys, he didn’t understand much of what was said in Hebrew, but he joined one of the other English-speaking students with his American-born counselor and started to make some progress.

Shalom and Sarah had received many pieces of lovingly produced artwork from their younger children over the years, but the first painted plate that David brought home from ‘work’ was given pride of place in their home, because it was the first piece that he had not smashed in frustration. It seemed that he was learning to accept his limitations and find new outlets for his energies. He was able to spend more time at the workshop benches each week, and he returned home calmer each day.

As he watched his son develop skills and gain more confidence and independence, Shalom underwent a transformation himself.  Instead of praying for his son to die first, he started to pray for David to have a long life and a rewarding future. For the first time since his son had been diagnosed with autism, Shalom felt that this was truly a possibility.  Once again, he felt that he was a real father.

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