| Family First Feature |

Twice Tested

On Tishah B’Av, we mourn the double loss of the two Batei Hamikdash, both destroyed on the same date. Today, there are those who have been struck by two major catastrophes in close succession. Four women look back at the twofold trials they endured and share what kept them afloat

 

Tackling Life Single-Handedly

Shaina Levy’s* linen closet is perhaps the best witness to her life’s struggles. Her husband Nachum suffers from such severe OCD that, in trying to keep his hands perfectly clean, he goes through 100 hand towels a week. “I know that,” Shaina says nonchalantly, “because we own 50 towels and I wash them all in middle of the week when the cupboard is bare.”

Though her husband is home during the day — he’s officially recognized as disabled and is incapable of holding down a job — Shaina runs the house and raises their eight children almost single-handedly.

For the past 14 years of the couple’s 20-plus years of marriage, Nachum’s mental illness has been more or less under control. But there was one point early on when her life spiraled out of control.

It was a few weeks before Pesach and she was expecting her fifth child. She had no cleaning help from her husband; instead, his as-yet undiagnosed extreme OCD symptoms were wreaking havoc in their home.

One day, as she was scrubbing in the kitchen, she climbed from a stool onto the counter to reach a high shelf. But instead of stepping back onto the stool to get down, in her exhaustion, she walked straight off the counter. As she was falling, she instinctively wrapped her arm around her stomach. “Because my elbow absorbed the bulk of the hit, it was literally smashed up,” Shaina describes.

She required a major four-hour surgery on her elbow, followed by six weeks in a cast. Her husband, who was in and out of the psychiatric ward, wasn’t emotionally stable enough to accompany her. Neither could her family, who lived far away. And since her friends were busy with Pesach cleaning, Shaina felt bad asking them to join her.

“It’s one thing going in to surgery alone,” Shaina shares, “but coming out alone is the loneliest feeling ever.”

No one was there to support her — nor to advocate for her. Right after surgery, she was lying in the recovery room with other patients when, in the middle of her grogginess, she noticed the nurses wheeling in a machine to the bed adjacent to hers. They suddenly called out, “Run, we’re turning on the machine.” The staff all fled, jolting her upright.

It was a miracle that Shaina understood the implications of that warning as an impending radioactive X-ray. She let out a frantic cry, “Wait, I’m expecting!” The staff dashed over, pulled all the wires off her, and flung her bed down the corridor. “If I hadn’t noticed, they might have unnecessarily exposed me to radiation.”

Far worse than the crushing loneliness she felt was the physical agony that followed surgery. “I had just had a virtual box of screws planted in my arm and the pain was excruciating. And I couldn’t get painkillers because of my circumstances, even though this was something patients get morphine for. The nurses liaised with three doctors, but they all said I couldn’t take anything strong, not even sleeping pills. I was in such agony, I didn’t sleep the ten days of my stay.”

When Shaina was released from the hospital with a bulky hand-to-arm cast on her left arm, she was thrust straight back into the role of mother and father, but this time she literally had to manage everything single-handedly. She learned to do everything with her right hand, even changing diapers. Her neighbors chipped in to help cook and clean for Pesach.

Nachum was devastated by how helpless and absent he had been during Shaina’s hospitalization. This realization, however, did not serve him well emotionally and his condition took a turn for the worse. A week after Pesach, Nachum had to be admitted to the psychiatric ward as an in-patient.

“It was a crazy time,” Shaina says. “The first night, the doctors took him off all his meds in one shot — which is unheard of, but I was unaware of that then — and for ten days he was on nothing. He suffered so much, I tear up at the memory.”

Shaina visited him every day for hours, and then returned home to care for the children. She played this juggling act for two years during Nachum’s on-and-off hospitalizations. By the end of it, every member of the hospital staff pushed her to divorce.

“He’s like a three-year-old,” they declared, “There’s no hope for him. He won’t function.” She begged daas Torah to allow her to stay married. “I knew Nachum’s illness wasn’t his fault, and I couldn’t just throw him away. He is an incredibly gentle, caring soul, but it was hidden under this lurking illness. I was determined to work it through.”

Despite her fortitude and tenacity, every day was a struggle. “I was angry at Hashem,” Shaina admits. “I didn’t know another woman in my situation who stayed married. I had so many questions. But I also realized that if I’m angry at Hashem, it means I know He exists.”

In Shaina’s neighborhood, there was a shiur given by rabbis who were training for kiruv work. Throughout the shiur, the audience was encouraged to question and challenge the rabbi, just as a secular audience might do.

“It was an amazing outlet,” recounts Shaina. “I could ask away, the more questions, the merrier!” Sorting out those queries provided a sense of clarification and meaning to her muddled life.

Over the years, Shaina has reached greater levels of acceptance. One afternoon, for instance, she was about to explode at the sight of yet another stray towel on the couch. “My husband would get up from a nap and within five minutes, there’d be towels scattered everywhere. I’m very organized by nature, so loose items fray on my nerves. But that time, I looked at that towel and drew on all my inner strengths not to flare up.

“I thought to myself, Why am I getting so worked up over this! It’s only a towel! Why am I expending so much energy on not getting upset over a towel? From that day on, I was absolutely fine with the towels. That moment of growth was enlightening.”

Shaina also received chizuk and advice from her rav, Rav Mordechai Friedlander ztz”l of the Eidah Hachareidis. She once called him because she was considering taking on a third job to help pay the bills as she’s the sole breadwinner.

“It is not your responsibility,” he stated. “It’s your husband’s.”

“Okay, but you know my situation,” she countered. “What about the bills?”

“If you’re able to take on another job,’ he answered gently, “go ahead and do it, but you should just know that you’re going above and beyond.”

“The way Rav Friedlander phrased it,” she reflects, “was so beautiful and validating that I ended up taking the job with no resentment.”

Shaina hates when people call her special. On hard days, she sometimes curls up in bed and davens to Hashem that she shouldn’t be special, if it means she has to handle such a big test. But despite the challenges, she doesn’t give up hope. Instead, she tries to pass it on.

“Today, I mentor for an organization that pairs up families with an emotionally ill member. Foremost, I tell callers that people can change. Don’t panic that a diagnosis is a sentence for life. Yes, now it might look bleaker than bleak and you can’t imagine the sun ever shining again, but no situation is static. Never stop hoping for change.”

A DOUBLE DOSE OF SPECIAL

From the start, Miriam Kohl felt like a huge failure as a mother. She was young, newly married, and couldn’t figure out why her baby Pinchos wouldn’t stop screaming.

When it got to the point of unbearable, she and her husband Dovid went to the doctor. But their concerns were dismissed; Pinchos was reaching all his physical milestones at a textbook pace. Several years passed, and still, there was no explanation for their bechor’s atypical behavior. They still have a letter from a top pediatrician claiming that nothing was wrong with their then-three-year-old.

When Miriam signed Pinchos up for nursery, she explained in advance that her son’s behavior was unmanageable. They said it was fine, he was still welcome. On the first day, the nursery head called Miriam to her office. “You need to take him to a special school,” she told her gently. “This is not the place for him.”

Heartbreaking though it was, Miriam was relieved to know that she wasn’t crazy or incompetent; finally, someone else detected a bigger issue at play.

Around that time, she gave birth to twins, Zissi and Yossi. She was a kimpeturin of four weeks, staying at her parents’ home, when her husband flew abroad to his brother’s wedding. While he was away, Miriam had a chilling sixth sense about the twin girl. “I think there’s something wrong with Zissi,” she called her husband shakily. “He smiles in response; she smiles, but not in response.”

Dovid brushed her off, dismissing it as baby blues, “Nah, you’re imagining things. She’s only four weeks.”

A week later, her husband turned to her and said, “Maybe you’re not crazy.”

And that’s when their world started to darken. “It can’t be happening again, I thought,” Miriam shares. “Suddenly the doctors started apologizing for missing crucial signs. If we didn’t believe in the Eibeshter, that we were not meant to know this earlier, I would have been livid at the doctors. It was bashert for them to be diagnosed together.”

Pinchos and Zissi both have autism, ADHD, and are severely cognitively delayed. The only reason Miriam detected a cognitive impairment so early the second time around was because she was comparing the baby to a healthy twin.

Also, as a more experienced parent, she knew what was normal — and what wasn’t. “What made it so tricky was that Zissi reached all her physical milestones ahead of her healthy twin. But her understanding was clearly missing.”

When the young couple digested the fact that they had not one, but two autistic children, one after the other, they were devastated. “The best piece of advice we got was from the head of the special-needs nursery who told us to get ourselves a rav immediately,” says Miriam.

“The rav we connected with then was a savior and continues to be our lifeline to this very day. That fact that we have a happy, peaceful home and that my husband and I are functioning human beings is completely to his credit.”

The Kohl’s rav inspired them to think out of the box. “He told us not to try and change our children to fit into the regular world — which I think is the reason other parents like us struggle — but to work around their needs. So while it was agonizing for my husband to take his chassidishe cheder yingele out of the mainstream cheder and place him in a more modern setting, we told ourselves that this is what our child needed and we came to terms with it.”

In the same vein, walking through her community with a huge dog in tow made her family a spectacle, but dog therapy was so therapeutic for her children that she learned to live with the stares, because that is what her kids needed.

Because the couple knew they might eventually disagree with what the rav paskens, Dovid and Miriam made a pact from the start to accept every psak, even if one of them didn’t particularly like the answer. And they’ve never regretted following through.

After the diagnosis, the Kohl’s home was transformed into a therapy space. There was occupational therapy, speech and language therapy, and play therapy every week. They placed visual timetables all over the house. “The key to coping with our children is being organized and on schedule. We have it down pat by now, our house runs like clockwork. There is no such thing as a harried Erev Shabbos or Yom Tov. Everything has to be ready in advance. On any Erev, you might see us waltzing out on a day trip.”

When the kids are home, Miriam cannot cook or clean or even speak on the phone. It’s simply not safe. She once turned her back on the stove and, the next second, a bag was on fire. “Pinchos and Zissi are now 20 and 18, but their IQ’s are like five-year-old’s. And because of their ADHD, they have to be occupied from the moment they walk in from school. Those hours, I do nothing but play with them, crafts, games, anything to keep them occupied. They wash the dog, clean the garbage can — I probably have the cleanest garbage cans in town!”

Miriam describes how her morning starts as early as four a.m. And the day is not easy. The kids can get violent, throwing chairs at her. To hold herself together after such episodes, she relies on her rav.

“He’s on the other end of the phone and always brings me back to real life, reminding me how much we love them, how far we’ve come with them, and how our family is still intact. His refrain is ‘Men darf tin, nisht oiftin’ [We have to do, not accomplish]. The end result is not our worry. It’s about getting through the now.”

Their rav has been especially indispensable in how the couple deals with their typical 18-year-old son, Yossi, to ensure he doesn’t grow resentful. “It’s tough being the odd one out. The rav puts a lot of emphasis on making sure he has a good time with us, as well as private time. We sometimes take him away for a few days alone.”

Miriam’s life revolves entirely around her kids — “It’s my career,” she says. Early on, she adopted the behaviour-management method of an expert. It worked with such sterling success that she approached its creator to train her husband and herself properly so that they could share it with parents struggling with any challenging behavior, whether or not special needs is at play.

These days, the couple has gone so deeply into understanding autism and general behavior management that they mentor parents privately. Miriam also teaches behavior management in a few local seminaries as part of teacher training, because every teacher will face the challenge in some way or another.

“The method is about teaching children rules and consequences in a visual way. It’s very consistent, very clear, and very fair to the child. My autistic kids have gone from throwing knives or pulling tablecloths off a full supper table to not touching anyone. With this behavior management, I don’t ever have to shout at them, certainly not use my hands. It boils down to consistency.”

It took years for the Kohls to come to terms with their irregular life, but they don’t feel sorry for themselves. “I know people think we’re crazy and give us pitiful looks, but we’re so proud of our kids — we genuinely feel like we get nachas,” Miriam says. “And we’ve put so much into our kids, the bond is powerful.”

PULLING STRINGS FROM ABOVE

Riva Mendelson had just lost her father after a long hard summer of watching his health decline. She found herself sitting through the shivah, robotically nodding her head to all the murmurs of “No more tzaar” and “Nor oif simchahs,” truly hoping that their words would reach G-d’s ears, but wondering if it was even possible to make a simchah without her beloved father.

After the shivah, it was hard to get back into motion. “There are books on how to think and feel during shivah,” says Riva, “but there are none on how to get back to reality. It was overwhelming.”

In the days following shivah, Riva tried to adjust to a new normal. This included sifting through memories, organizing a neglected house, settling her children into a new school year — and tending to her sick baby. The doctor insisted it was “just a typical virus,” but Yehuda’s symptoms seemed to be worsening. Indeed, when she went back to the doctor almost a week after shivah, Yehuda was rushed to the hospital.

“You know you have a sick baby when you bypass the waiting room,” Riva says. “If you’ve ever complained about the wait, be thankful next time!”

Riva and her husband were told that their baby had had multiple strokes in the cerebellum. “I remember grabbing hold of the cot bars to stop myself from falling. Stroke. This was so life changing. Hadn’t we been through enough?”

Feelings of guilt engulfed her. Why had she not trusted her instincts? Why had she not taken him to the hospital sooner?

Yehuda was put into an induced coma for a few nights. By some miracle, he did not need the invasive brain surgery predicted. He was in the hospital for five weeks in total, which included intensive therapy.

“During those frightening first days when Yehuda was admitted to the hospital, I could feel the strength from my father. He was pulling strings for his youngest grandson from Shamayim.”

For example, when Yehuda had an MRI, a nurse walked Riva and her husband back to the waiting room. The hospital corridors were a virtual maze and the nurse seemed to be lost, but she reassured them, “Don’t worry — I just follow the signs.”

Then Riva remembered that her father had co-owned the large signage factory that supplied the hospital with signs. He was literally escorting her.

Later, on Erev Shabbos, when she got to the bikur cholim room right by the zeman, there was a tray of six tealights ready, exactly the amount she needed. As if that wasn’t enough of a wink from her father, there was a Reb Meir Baal Haness pushke next to it. One of her father’s many pet projects was to collect the money from pushkes every Elul.

Today, five years later, Yehuda is a miracle schoolkid whose severe stroke merely resulted in his needing extra support and therapy, which Riva credits to her father. “His love was everywhere, and I could feel him looking down and guarding his grandson.”

TABOO TRIALS

Back when Sara Cantor’s family was struck with tragedy, two months apart, there was no community support, no therapy, and no organizations to help the family handle the blow. Both of the Cantor’s challenges, a disabled child and cancer, were taboo in those days.

Sara’s brother Yankel was born with a genetic developmental disability. When kids in the neighborhood would see him, they would run the other way. Yankel was in and out of hospitals on a regular basis. When he grew older and became too challenging to be cared for at home, he was moved to a group home. “I missed him so much that I’d come home a wreck from our weekly visits, crying for hours, until my parents decided it was better not take me at all,” Sara remembers.

Not long after, when Yankel was again hospitalized, Sara went to stay with a family friend. “I was sure it was just another of his frequent hospital episodes,” she says. But a few days in, her parents came to tell her that Yankel had died. “It was such a shock,” says Sara, recalling memories of those trying times from 20 years ago. “The worst part was that because my parents had no longer taken me to visit, I had never said goodbye.”

It was too much for a girl of 14. To add to the trauma, all this happened a few months after the family moved to a new community. Sara was painfully shy, hadn’t yet made friends, and nobody knew what she was going through.

Two months later, Sara’s pillow was still soaked with tears when her mother went into the hospital, ostensibly to have her appendix removed. Sara stayed with that same family friend and waited to hear that the procedure went well so that she could return home. Instead, she got a bombshell call from her father: “Mom has cancer.”

Back then, cancer was a death sentence. It was also yet another taboo, a word that was hitherto never uttered past the C.

Okay, so I’ve lost my brother and now I’m losing my mother, Sara thought before throwing herself onto her bed and not stepping out of the bedroom for hours. “I was numb. I didn’t make a sound. I remember yelling at Hashem, but in silence — how could He take my two nearest and dearest from me? I screamed inside my head because I didn’t want to arouse my host’s attention.”

Baruch Hashem, Sara’s mother survived, but it was a long, difficult journey. “I’m not sure where the community was during that time, but I definitely remember opening cans of tuna for dinner for myself and my younger brother,” says Sara. There was also little in terms of emotional therapy. Sara vaguely remembers seeing a therapist once, but that was all.

“I had so many questions. Why did we have a disabled child? Why couldn’t Yankel live with us? Why did he die? Why of all mothers was mine diagnosed? Why do bad things happen to good people? Why, why, why?

“My parents patiently told me that Hashem gives nisyonos to those He loves because He wants their tefillos, so we have to talk to Him and daven. They would tell me that He never gives anyone a nisayon they can’t handle and that He gives hardship in this world so that we will only have reward in the next. And even if it seems bad, it’s really good. Hearing this from my own parents, when they themselves were in pain, was a huge comfort and really helped me.”

Years later, as a high school senior, when her mother already had a clean bill of health, Sara was learning about coping mechanisms in the sefer Kuzari. It talked about why bad things happen to good people and Sara found herself reading verbatim everything she had imbibed from her parents during those difficult days. “I remember thinking, Wow, this is just how I grew up! How did my parents know this? It was like a lightening flash and it reinforced all those life lessons.”

The two-fold trauma of her teenage years helped Sara develop a closer relationship with Hashem. “I did so much crying and talking to Him as an angry adolescent that today it comes naturally for me to talk to Him throughout my day. I cling to that closeness and impart it to my own children now.

“Living in Eretz Yisrael, we’re no stranger to tragedies. After a terrorist attack, I remind my kids that Hashem is in control and He has a plan. Even just hearing them heatedly discussing elections, I tell them it’s all in Hashem’s hands and no mortal being can make any difference to the results. It’s such a relief to know He’s at our side.”

*All names have been changed

(Originally featured in Family First, Issue 653)

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