Never Say Never

^When I grew up in the early 60s in Boro Park, life was simple.

We were a sheltered, shielded generation. There wasn’t much media, so we lived in a bubble. We grew up with the understanding that if we learned well, worked hard, played well, made friends, and did all the right things, then we would grow up, marry talmidei chachamim, and give birth to wonderful children who would walk in the Ribono shel Olam’s ways.

Nowhere, in my mind at least, was there fear or indication that things could go wrong.

It was ironic, really, that we, the post-Holocaust generation, should have grown up in such an insulated fashion. But we did. And I was a model student for the lesson of the times.

I played well, I learned well. I tried hard and had my eye on the goal: to marry a talmid chacham, a good person, and to recreate the doros that were lost by building a family.

And that’s what happened. I got married right after the seminary, exactly the way I was taught it was supposed to be, and I moved over the Verrazano Bridge to that place where all young couples went, because that’s where you were supposed to go. After the first year of marriage, I gave birth to a baby boy. Just the way it was supposed to be, right?

And then right on time, eighteen months later, in June 1983, I gave birth to a little girl. Just how it was supposed to be… except that it wasn’t.

Because this time, I got sick at the end of the pregnancy, and the baby developed viral pneumonia — which doesn’t respond to antibiotics. For the first six weeks of her life, my baby was on a respirator, fighting valiantly to live.

Between the doctors and treatments and sitting by the baby’s side, we were running to get brachos and saying Tehillim, davening at kevarim, and doing whatever we could as we watched our little girl struggle for her life.

And in response to all our tefillos, the very high fevers and the respiratory difficulties suddenly took a turn for the better.

Our baby, who we called Rochi, came off the respirator, and the doctors scratched their heads and said they couldn’t believe this child had survived. But before we took her home from the hospital, they warned us that although she was alive, they had no idea what damage the illness has caused.

“Keep an eye on her. Watch her development,” they kept saying.

We did. We watched her closely, and the more we watched, the more frightened we became. As the weeks turned into months, I kept noticing warning signs, and the doctor’s appointments increased.

At first, my pediatrician reassured me that due to the severe illness early on, it was normal for the development to be slow. But this was my second child, and I felt that something was wrong. Rochi couldn’t make eye contact, and she wasn’t able to hold her head up on her own. Feeding her was a struggle, and she cried incessantly. She never smiled or laughed, and she seemed disconnected from the outside world.

By the time we reached her first birthday, Rochi was doing… nothing. And then the doctors ran tests and informed us that she was completely deaf (missing the eighth cranial nerve, the auditory nerve that leads from the ear to the brain), legally blind, autistic, and had very low muscle tone and might never be able to walk.

I remember how the doctors advised us to place Rochi in a home. “You’re young,” they told me. “Just twenty-two. You’ll have more children, don’t let this one take over your lives. With four diagnoses like this, how will she ever amount to anything?”

I’ll fast forward to today, thirty-nine years later. Rochi is married, and the mother of three beautiful, bright, healthy children — two boys and a girl, all in their teens. She runs the household, drives the children where they need to go, takes care of all their appointments, and does everything you’d expect a mother to do.

How? What happened?

The answer: The Ribono shel Olam runs the world. And that’s why my motto in life is: Never Say Never.

***

Back in 1984, I didn’t know anything about diagnoses. There were no agencies or services, no support or resources within the community, nowhere to turn for help or hope or guidance in this tremendously difficult situation.

I can’t even describe the feeling of being so totally alone, not a single phone number to call, not a single resource to try. This is why the work done by Hamaspik and other organizations is so, so crucial — it gives young, terrified parents somewhere to turn, someone to guide them.

But the Ribono shel Olam is the ultimate helper. And eventually I found my way to the office of a woman named Adele Markwitz, who was known for helping deaf children learn how to read and communicate.

I arrived at her office with an eighteen-month-old who couldn’t hold herself up, and who screamed through the entire forty-five-minute appointment. At the end, Adele turned to me and said, “Your child is spoiled! I can’t work with her until she learns to behave differently.”

I was shocked and horrified. My baby wasn’t spoiled; she was severely handicapped!

“Does she sleep through the night?” Adele pressed.

“Of course not,” I said. “She can’t see or hear. She cries because she’s cold, or wet, or hungry. Of course I take care of her.”

Adele said, “Until you train her to sleep through the night, I can’t work with her.”

I was hurt and furious and went home feeling shattered. I had finally had a hope of finding a therapist for Rochi, and here she was refusing to work with her because she thought Rochi was spoiled?

Still, her words played in my mind. I was expecting my third child by then, and maybe it would be helpful not to have to wake up for two children throughout the night.

And so I did it. I sleep trained Rochi. It took fifteen nights until she slept through the night for the first time.

Then I called Adele Markwitz and said, “She’s sleeping through the night.”

She said, “Well, look at that. So the doctors were wrong.”

“What do you mean?” I asked. “She still can’t see or hear. How were the doctors wrong?”

“Well,” she said, “they said you couldn’t teach her anything. They said she would never learn and you would never make anything out of her. And yet look at what you taught her in just two weeks. You taught her the first thing we teach any baby! The difference between day and night!”

And then she said the words that made every gloomy prophecy from the past two years come tumbling down. She said, “What else are you going to teach her?”

It was an earth-shattering moment of realization. If the doctors were wrong, if I was able to teach my child one thing, I could teach her a million and one things.

So we began the strenuous, arduous task of trying to teach a deaf, blind, autistic toddler how to function in the world.

It wasn’t easy. Every single skill that any of us ever picked up by osmosis had to be taught to Rochi directly — as she didn’t hear or see what was going on around her.

So how was it possible?

First, of course, was siyata d’Shmaya. And second, we were constantly racing against time.

I never took a day off. Every minute counted, and we wanted every bit of therapy and learning that was possible for Rochi to achieve. Nowadays, it’s not the mainstream approach to working with individuals with special needs, but back then, we had very few resources, and our therapist and her team encouraged this approach, to strive for the most that we could achieve.

I spent most of my time during those years taking Rochi to therapy. Erev Shabbos, Erev Yom Tov, Chol Hamoed, all summer long; day after day after day after day. OT, PT, every type of therapy we could find — and of course, all funded on our own, because there were no services

available back then. After several months of this, we discovered that she was really a bright child.

We taught her new things and she learned. And the more we taught her, the more she learned.

Of course, the underlying foundation of all of this was tefillah, constant davening. My most fervent tefillah was Avinu Malkeinu, kera roah gezar dineinu. I begged Hashem, just take away one diagnosis, take away one aspect of one diagnosis. Please, just make life a little bit easier for her.

And the truth is, that’s how He did it. The yeshuah didn’t come in one fell swoop. It came in pieces.

***

The first miracle was the eyes. One night, I went into her bedroom to put something away, and turned on the light. I never had any problem turning on lights or making noise when she was sleeping, because she couldn’t see very much and couldn’t hear at all. But this time, when I turned on the light, she woke up and opened her eyes.

So off I went, back to the rounds of doctors.

I got a lot of dismissive responses. “Come on, Mrs. Yaroslawitz. She has multiple handicaps. You need to just accept it and move on.”

But when I told them that she woke up when the light was turned on, they did some more testing. Since she couldn’t tell them what she saw, they used a certain drug to test the eyes and discovered that there was a type of glasses that could help her.

We were excited to try them, but we didn’t yet know whether she was actually seeing more through them.

Then came her third birthday. I made her a big birthday party — not that I thought she herself would appreciate it at the time, but I wanted to be able to one day show her that she had the experience like any other child.

We sang happy birthday, and she didn’t look like she was taking in anything — not hearing, and not seeing either, even with the glasses. But then, I was cutting the cake, and she reached forward and licked the knife in my hand.

I was shocked. How did she know there was icing on the knife?

And that, of course, found me once again in the doctors’ offices. This time I absolutely insisted that there was some vision, and I begged them to help me. “She can’t hear. If she can see, she’ll be able to lip read.”

Hashem helped us. With more testing they realized that her eyes were badly aligned, and that a surgery could help fix that.

Rochi had three surgeries, each spaced six months apart, from her third until her fourth birthday. And the change was dramatic.

Suddenly, her eyes were straight. Suddenly, she was aligned, and she started to interact and play with toys. She started moving around.

We had a new child. She learned to read English and Hebrew. She learned to write, to walk. She was accepted into a school that was incredibly supportive — while we provided the school with shadows so Rochi was never alone in the classroom, they really made her feel part of things. She had a wonderful class, loads of friends, and grew and blossomed.

There were challenges, of course. The academic side was difficult. We were still in continuous therapy. Language acquisition was a huge challenge since there was no hearing at all.

At that point, I became a little obsessed with trying to find a way to help Rochi hear. We had multiple appointments with doctors, in particular Dr. Noel Cohen, the head of the otolaryngology department in NYU. He did MRIs and many other tests, but eventually, he threw his hands up and said, “Listen, this is a rare case. She’s missing the eighth cranial nerve, and therefore there’s absolutely nothing we can do.”

The years went by. We kept moving forward, she pushed hard, and kein ayin hara she did well. By the time she got to eighth grade, I’d say that all of our tefillos of her being a normative child,

a young lady, a schoolgirl, had been fulfilled and answered — except for the hearing and speaking.

She was walking. She was learning. She had friends. Her eye contact was nearly 100%, even though we worked almost eight years to get to that stage. But she couldn’t hear, and she couldn’t speak a single word (she communicated with us through writing).

I read somewhere about a professor out in Arizona who was exploring the use of something called an utricle, another organ within the ear that also can hear, and is used by animals, though not by humans. I was very excited about this. Maybe Rochi could somehow benefit from a type of machine that would activate her utricle?

It was a fantasy. But hey, I was willing to try.

I contacted this professor and he was as curious as I was, so I arranged to go out there for three days. He did his own set of MRIs and acknowledged the fact that Rochi was missing those organs. Then he took us into a room full of machinery, each “hearing aid” about the size of a refrigerator, and he tried every which way to try to get her to respond to sound.

Nothing worked.

By the end of the three days, we had achieved nothing.

The third day was a Friday, and we’d arranged to spend Shabbos in a hotel, before traveling back home. I was starting to warm up the food on a hot plate when my husband called. Everything just became too much for me. I fell apart.

“I want to come home,” I sobbed. “I can’t do this anymore. Fine, so she won’t hear…”

On the other end of the line, my husband was flummoxed. He wanted to make me feel better, so he said, “Guess what? Good news. You won the dollhouse in last week’s Chinese auction!”

I had no interest in a dollhouse right then. I told my husband to put it in the basement and I would deal with it another time.

We flew back home after Shabbos.

The next day, I found myself in Amazing Savings, and noticed this brand-new, fabulous phenomenon: suitcases with wheels! I was amazed. Rochi and I had schlepped through airports carrying our heavy suitcases — imagine we could use these! I decided to buy two — one for her and one for me. But then I reconsidered. Rochi couldn’t hear. It seemed like she never would. Why should I buy suitcases? What would she need it for?

I was about to leave the store when I stopped. Sora, I told myself. Do you or don’t you believe Hashem could give Rochi back her hearing, whenever He chooses? You won’t even buy a suitcase to prove your emunah?

I turned around and bought two suitcases. When I came home, I put them in the attic, and that’s where they stayed for the next two years.

One day, when Rochi was in tenth grade, a woman called me to tell me that there was a man from Argentina who cures hearing loss, and he’d be coming to Williamsburg for a short time. “I want you to bring your daughter to him,” she said. “Maybe he can cure her.”

I wasn’t interested. “I would love for my daughter to be cured,” I told her. “But you know, she’s missing the organs necessary for hearing. There’s nothing this man can do.” And I hung up.

But the woman was persistent. She called my husband. She called me again.

I still believed we would get a yeshuah for Rochi. I just didn’t believe it would come through a doctor. I’d already traveled that route. They weren’t able to help me.

Eventually, on the fourth or fifth call, the woman said to me, “Why don’t you just make a phone call? Call him in South America and ask him if he thinks he can help you.”

I couldn’t refuse that. I called this man and explained the situation: I had a fourteen-year-old child profoundly deaf since birth. She didn’t have the eighth cranial nerve and cochleas, and hearing aids couldn’t help her at all.

“How do you know she doesn’t have the nerves or cochleas?” he responded,

“I’ve done many, many scans and MRIs,” I said promptly.

He challenged that. “How do you know she doesn’t have even one microscopic fiber of these organs, too small to show up on the scans?” he asked.

I didn’t have an answer to that.

“Listen, I’m coming to Brooklyn,” he said. “Bring your daughter for three days. Normally I insist on a three-week protocol, but you can come for just three days. And see if, after three days, you can detect any change.”

I was willing to do that, although it wasn’t easy for Rochi to miss three full days of school in tenth grade.

This is what the “curing” process looked like:

We went to the makeshift clinic, and this “doctor,” with a long ponytail, several earrings, and several tattoos, waved around a large pin with flashing lights. He’d wave this around her, and then after a while, he’d click the cover of a Snapple bottle next to her ear and he’d ask, “Did you hear it? Did you hear?”

She didn’t hear it. So he would send us to the waiting room for an hour, and then he’d repeat the procedure. Over and over again. For three full days.

By the end of that time, I’d absolutely had it. I was about to call the woman who’d set up the appointments to thank her and let her know it absolutely wasn’t working for me, when just before I dialed, it hit me.

Wait. You didn’t try. You didn’t check if there was a change in her hearing.

It was ten at night and Rochi was downstairs, doing her homework in the playroom. I grabbed the nearest items — a Farberware pot and a soup ladle — and I snuck down the basement stairs and hid somewhere where she wouldn’t see me.

Where did I choose to hide?

None other than… behind the dollhouse.

Because while I was crying hysterically out in Arizona, after a failed three days of trying to get Rochi to hear, the Ribono shel Olam was setting up the props for the yeshuah.

Behind the dollhouse, I took the pot and the ladle, and I clanged it very loudly.

And Rochi jumped up in surprise.

I almost fainted. I had sat through hundreds and hundreds of hearing tests, and Rochi hadn’t responded to a single sound, ever. And now I’m clanging on a pot and she was responding!

Of course, she had no idea what the sound was — she didn’t know what sound was! So she sat down and went back to her work.

I clanged it again. This time, she stood up and looked around, and saw me behind the dollhouse with a pot and ladle.

She made a face at me. What are you doing?

She could lip read, so I said to her, “Why are you asking me?”

She signaled that she didn’t know.

I said to her, “Go back to your desk and raise your hand when you know.” I couldn’t say to her, Raise your hand when you hear, because she didn’t know what hearing even meant.

She sat back down, and I clanged again, and she raised her hand.

I was completely blown away.

I called a very close friend of mine who’s also an audiologist. “Sit down and promise me you’re not going to laugh at me,” I said. Then I told her that I’d been to these three days of electric acupuncture — that’s what it was — and that Rochi was now responding to the sound of a pot clanging.

My friend said, “Neither one of us is going to sleep tonight. Get dressed. I’ll pick you up in about fifteen minutes. Let’s go to Manhattan, to my soundproof room, and give Rochi a hearing test.”

At the last minute, I took the pot along with me.

We got there, and my friend ran a regular hearing test. Rochi didn’t respond to anything at all.

Anything… except for that pot. When I clanged it in the same way as I’d done in the basement, she heard.

The Ribono shel Olam made me choose that pot and that ladle of all the items in the entire house, to clue me into the fact that something had changed.

The next morning, I called Dr. Noel Cohen. He was world-famous as one of the pioneers of the cochlear implant, but had always insisted it would never work for Rochi, as she was missing the structures inside the ear.

Now I was insisting that she had responded to a sound.

He said to me, very bluntly, “You need help. This isn’t the answer.”

If Dr. Cohen can’t help us, I thought, I need to find doctor number two in the country.

My friend helped me research, and we discovered Dr. Paul Kileny. He specialized in cochlear implants and worked in Ann Arbor, Michigan.

So what do you think we did? We brought down the suitcases — the rolling, Amazing Savings suitcases — and set off for Michigan.

Dr. Kileny ran a test called a promontory stimulation test. He discovered that indeed, there were tiny, tiny fibers that were responding to sound.

After two days of testing, he said, “Listen, I’m willing to try to implant her, but I don’t understand. You have Dr. Noel Cohen right there in New York — why are you coming to me?”

I explained to him what had happened, and he offered to speak to Dr. Cohen on our behalf. I was terrified, but then Dr. Cohen called me, and said, “I heard you’ve been exploring Rachel’s options. Let’s discuss things again.”

So we returned to Dr. Cohen in NYU, and he agreed that if Rochi passed the promontory stimulation tests he’d run, he would give her cochlear implants right there.

Ten months later, on Purim of 1998, Rochy got her first implant. Four weeks after that, on bedikas chometz day, they turned on the implant — and she responded to sound.

Avinu Malkeinu, kera roah gezar dineinu. The Ribono shel Olam can do anything.

***

From that point on, so many things happened. Rochi began to speak. Her language improved. She graduated twelfth grade, did a year of seminary, attended Touro.

She got a second implant on the other side, enhanced the first one, and by the time she reached the age of shidduchim she was a thriving, independent young adult.

The Ribono shel Olam, in His infinite chasadim sent her an amazing shidduch, and the rest is history.

People often ask me, “Have you ever gone back to the doctors to tell them they were wrong?”

The answer is no. I never even thought about doing that. Partly because I don’t have the time for that, but more importantly because if I did, I’d feel like I was denying the tremendous nissim that Hashem did for us.

If I say that the doctors were wrong, that it was never like they thought it was from the beginning, then I’m saying, chas v’shalom, that it wasn’t a pure miracle and chesed from Hashem.

But it was like that from the beginning. The doctors were right. She was totally deaf. She couldn’t see. She was very autistic. She had very low muscle tone.

And it was only thanks to the chesed of the Ribono shel Olam that Rochi was able to overcome each one of those diagnoses, and become the woman she is today.