Against All Odds

By: C.V. Gavant

Copied with permission from: Family First 16, December 1/2010

“Ima, I want to go play in the park.”

“Okay, Daniel, we can go when Abba comes home.”

“I want to go now!”

“You know I can’t take you alone. It won’t be long, and then we’ll go.”

“Ima, there are so many things you can’t do! You can’t walk, you can’t write, you can’t pick anything up off the floor, you can’t wash dishes, you can’t give baths …”

“That’s right. There are so many things I can’t do. It’s frustrating, isn’t it?”

A long pause. “But you can talk to me, you can read books to me, you can hold me on your lap, you can hug me and kiss me. You can do lots of things.”

This conversation took place ten years ago, but the situation hasn’t changed. Malka Goldberg, Beit Shemesh wife and mother of six, cannot walk, write, pick anything up off the floor, wash dishes, or give baths. Yet incredibly, over the past eighteen years she has succeeded in managing a home, raising her children, and chairing the board of a Beit Shemesh school with a current student body of over one thousand.

Normal or Not?

Malka has cerebral palsy (CP), a nongenetic neurological disorder that generally results from oxygen deprivation before or during birth. People with CP can suffer from a wide spectrum of disabilities, ranging from mild motor difficulties or spastic movements to severe physical and mental deficiencies, including lack of control over their body movements. Since Malka has severe spastic athetoid cerebral palsy, causing her body to jerk involuntarily on a regular basis, the doctors didn’t know if her  disabilities were only physical, or mental as well.

“I was extremely spastic as a baby,” Malka relates matter-of-factly. “Since I was their oldest child, my parents didn’t know what to expect. They thought I was intelligent, since I responded to people, but I couldn’t roll over, sit up, or do anything that other babies can do. The doctors told my parents that there was a 33 percent chance that I would be completely fine, a 33 percent chance that I would be moderately handicapped, and a 33 percent chance of being severely handicapped, both physically and mentally. One neurologist who examined me even pronounced me as ‘clearly mentally limited,’ but my parents didn’t believe him.”

Determined to prove the doctors wrong, Malka’s parents, Yehuda and Judy Landesman, embarked on a campaign to optimize their daughter’s functioning. Her early years were full of surgeries and therapy of all sorts, yet Malka remained wheelchairbound and unable to control her hands or body — to dress herself, feed herself, or perform personal care. Still, she was treated as a normal member of the family.

“They treated me just like everyone else,” Malka explains. “I was punished if I did something wrong, just like my siblings. My parents accepted my disability, but pushed me to do everything I could — it was a great balance.” The elementary school for mentally capable handicapped children Malka attended (which no longer exists) reflected

the same attitude. Later, when she reached high-school age, Malka was mainstreamed to Shevach High School, in Kew Gardens Hills, New York. The year she was in ninth grade, the school moved to a new building, which was wheelchair-accessible, a real boon. Fortunately, Malka made friends almost immediately and did well in her new environment, relying on photocopying friends’ notes and taking tests orally.

Malka was eager to attend seminary after graduation, but because of her disabilities, there was no way she could go to Israel without her family. She attended Queens

College for a year while her brother, ten months younger, finished high school, and her sister finished eighth grade. The following year, the entire family flew to Eretz Yisrael together.

“It was a very special year for me,” Malka says. “I had to choose my seminary in a very unusual way — based on whether or not it was wheelchair accessible. But I gained a lot from that year, and we all discovered that we loved Eretz Yisrael.”

 When Malka’s seminary year was over, the family returned to America with a firm decision to make aliyah once Malka’s sister Shani graduated high school. In the meantime, Malka attended college and graduate school. She majored in counseling psychology, intending to work as a psychologist when she was finished.

With a busy schedule and a full life, Malka had little time to spare for worries about the future. “I had friends, and I was able to participate in everything that went on around me,” she explains. “Occasionally my friends went places I couldn’t go, but for the most part, I felt normal. When it came to shidduchim, though, I was worried, since I  assumed it would take me longer to get married, and my friends would all leave me behind.”

In Malka’s final year of graduate school, as her family made their aliyah plans, a friend called up to redt Malka a shidduch. She’d been redt other shidduchim before, but

this case was unusual because the man, who also had CP, was forty, while Malka was only twenty-two. “I wasn’t thrilled with the idea, even though I knew I’d probably have to marry someone handicapped. The age difference bothered me.”

Knowing her opportunities were limited, Malka had promised herself never to reject a shidduch outright, so, despite her reservations, she agreed to meet this man. “He

lived in an out-of-town community, and even over the phone I could tell he wasn’t for me,” she says. “I told him that I didn’t think it would go anywhere. I was making

aliyah in six weeks and still busy with graduate work, but he said he had a wedding in New York and wanted to come meet me, so I agreed.”

The story took an unusual twist when the potential date called a few days before his arrival to ask if the friend who was accompanying him to the wedding could

stay in the Landesman house over Shabbos, since he didn’t know anyone else in the area.

The Landesmans, who often had guests coming and going, agreed without a second thought.

The friend, a frum single named Joel Goldberg, spent a lot of time in the Landesman house that Shabbos, but no one thought anything of it, since, as Malka explains, “I wasn’t marriage material to an able-bodied person. I had my date arranged for Sunday morning, and I spent the entire Shabbos worrying about how to turn this guy down after the date was over.”

True to Malka’s predictions, the date went nowhere, but the trip to New York didn’t turn out to be a waste after all. Several days later, Mrs. Landesman got a call from her Shabbos guest, who said, “Mrs. Landesman, I want to go out with your daughter.”

“I’m making aliyah in six weeks!” Malka protested when her mother came to tell her the news. “I don’t want to get involved in something else right now. Besides, I already met him, and I know he’s not for me.”

Although she had many able-bodied friends, she couldn’t imagine why anyone without any handicaps would want to marry her.

Joel wouldn’t take no for an answer. “Let’s just go out once,” he said. “What have you got to lose?”

“You want to come all the way to New York just for one date?” Malka countered.

“Look, I’m not asking you to marry me right now. Let’s take it one step at a time.”

Joel, who was already thirty-one at the time, had been in the shidduch parshah for a number of years, and there was something that attracted him to Malka, despite

her handicaps. He could see her maturity and intelligence, and that was enough for a first date.

The rest, as they say, is history. The couple dated for six weeks, then got engaged in Eretz Yisrael over Succos when Joel flew there to spend time with Malka. Having lived in Eretz Yisrael for seven years, he was eager to return, which made the Landesmans’ aliyah a boon to him rather than a complication.

His parents, although surprised and perhaps a bit concerned about the match, trusted Joel to make his own decisions. The Landesmans were thrilled.

Malka and Joel rented an apartment near Malka’s parents’ home in Bayit Vegan, which made the transition to married life easier. But Malka’s adjustment to her new life was anything but simple.

“I knew I wasn’t going to live at home my whole life,” Malka says, “but suddenly I had to get used to having an aide around all the time, helping me with basic tasks like dressing, feeding, and more, rather than relying on my parents. My aide was amazing, but she was Russian, and even her Hebrew wasn’t great. We had a lot of difficulty communicating!”

Malka learned that to keep house she had to convey exactly what she needed done, when, and how. The aide was responsible for most of the details that the average

housewife attends to, and Malka had to give the instructions to get everything done. Since she can’t point to things or use hand motions, Malka was forced to rely on

oral instructions to get the message across, which wasn’t always easy.

To complicate matters further, Malka’s oldest child arrived within a year of her marriage, adding a whole new dimension to life.

“My doctor had never seen anyone as handicapped as me before. I had to convince him that my disability wouldn’t affect the pregnancy or birth,” she says.

The baby was born by Cesarean, since Malka didn’t feel her body was strong enough to handle a labor and delivery. But the baby, Michael, was healthy in every way, and was joined only a year later by a sister, Hadassah.

Although Malka had been planning to work when she made aliyah, she chose not to pursue her career when her babies were small. “Because of my disability, I couldn’t take care of my children when they were young. I nursed the babies, but I couldn’t change their diapers, rock them, or hold them. Since babies form an attachment with

whoever is caring for them physically, they didn’t reach out to me, but to the aide.”

Difficult as it was for Malka to be on the outside, she found that as her children became toddlers the dynamics changed. At that stage, the children wanted to speak to

her and to sit on her lap, and began to understand that she was their mother, rather than the aide. She was the one who made their decisions, and they understood that

they needed to ask her for things when they wanted them.

Today, Malka is the proud mother of four sons and two daughters, the youngest of whom is eight months old. She has a special relationship with each of her children, and all of them know that Ima is the one in control, even if it’s the aide who actually carries out her commands.

After the birth of their second child, Malka and Joel moved from Bayit Vegan to Beit Shemesh, where they purchased a two-floor, five-bedroom home with plenty of space for their growing family. The house is outfitted with two elevators, one from street level to the house, and one inside the house that goes from the first floor to the second.

Both elevators are mechanical, rather than electric, so they can be operated on Shabbos. “There’s very little I can do by myself,” Malka explains.

“I’m calm about it because I have systems. Sometimes it’s frustrating when people don’t do things exactly the way I want them to be done — then I have to decide if it’s

worth making an issue or not. I’ve also had my share of aides who didn’t take care of my babies properly or didn’t accept my authority as decision maker, which obviously

wasn’t going to work. The aide I have now has been with me for eleven years, and I’m very happy with her.”

The aide also does all the cooking, which can be tricky because she’s not Jewish, so Malka must turn on the oven and stove herself. The hardest part of Malka’s week is Sunday, when the aide has her day off, yet the house must function as usual. Her husband needs to be more available on Sundays, though he does his share the rest of the week as well.

In addition to managing her home, much of Malka’s time and energy over the last fifteen years has been taken up with her duties on the board of Ahavat Yisrael School in Beit Shemesh. Moving to the community with two almost school-age children, Malka joined several other mothers in starting an American-style chareidi leumi school with

an especially high level of learning. Malka served on the hiring and scholarship committees, which, she says, worked out well for her children. Since Malka’s role is entirely behind the scenes, she has very little to do with the children in the school, but the staff knows her well. By the time her children started school, their teachers were all comfortable interacting with her.

“People will often be taken aback when they meet me for the first time, and they’ll wonder what kind of parent I am,” Malka says. “But since my children’s teachers all  knew me, I didn’t have to deal with that.”

Malka’s children also feel good knowing that their mother is a valuable part of the school. Even though their Ima’s disabled, she gets recognition for her accomplishments,  which provides an important sense of balance for the family.

After a five-year stint as chairwoman of the board, overseeing the school as it doubled, and separate boys’ and girls’ high schools were created, today Malka has moved into a backseat role following the birth of her baby, Nechama. Yet the school remains an important part of her life.

“Bli ayin hara, my life looks great today,” Malka says. “My one regret is not having gotten into psychology, my field of training, but I could still do it one day.”

Her children have accepted life with a handicapped mother, Malka explains, because this is all they’ve ever known. The older ones used to be occasionally embarrassed to be seen with her in public, but her younger ones don’t seem to have this issue. All of the children have experienced their share of rude or inappropriate comments, but for the most part they take things in stride.

One thing that the family finds difficult is not being able to take family vacations together, since Malka’s mobility is so restricted. Occasionally, Joel has taken the kids on camping trips in the summer while Malka stays home, and when it comes to Chol HaMoed, they choose excursions that are wheelchair-accessible.

Since Malka can only go out if her husband is available to drive her, outings and activities require extra planning and organization, and things do sometimes go wrong. The mechanical lift in their van has malfunctioned, leaving them trapped on more than one occasion. The Goldbergs do their best to roll with the punches, but Malka admits it can be challenging.

While Malka’s parents worried that their daughter would one day ask, “Why can’t I be like everyone else?” Malka says she doesn’t ever remember feeling this way. “I was in a good place,” she explains. “I had friends, I was able to participate in almost everything. I never felt I was missing out.”

She gives a lot of credit to her parents for fostering this attitude, especially since many disabled people don’t receive a regular, wellrounded education as able-bodied people do. Determined to provide their daughter with everything she needed to function, Malka’s parents succeeded in giving her the self-confidence to be her own person, despite her obvious limitations.

Today, she often feels hampered by her inability to do things that other people can do, especially when it interferes with running a home. “I wouldn’t have chosen this

for myself,” she says frankly. Yet she does feel that her situation has forced her to learn to be patient, since there’s no other choice. However, she’d prefer to be treated

as normal, rather than as a freak or as “Mrs. Amazing.”

“We’re not trying to be different; we just want to be like everybody else. The best way for people to react [when they see me] is not to react at all.”

Living her life the best way she can is Malka’s current goal in life. This means providing her children and family with emotional support and being an active part of her community, to the best of her ability. And despite her obvious physical handicaps, she is doing an admirable job.

Perhaps her son Mordechai put it best when he said, at age four, “I know why Hashem made you disabled, Ima. So I would always have a lap to sit on.”