“If someone would have said to me eleven years ago ‘one day you will look back and smile at what happened’, I would have told them to have their mind checked!’”
With these words Rabbi Moshe Kuessous a’h opened up his speech to parents of special needs children. With total honesty he admitted, “Before they were born I’d think I’d be embarrassed. But now, wherever I take them I stand tall and proud! My head is held high. I feel very proud to be their father!”
And what a proud father he was, but let’s start at the beginning…
Nechama and Batya were born 17 years ago, Dec. 6, on a Wednesday morning in Monmouth Medical Center in Long Branch, New Jersey. They are numbers 14 and 15 in our family and we were very much anticipating the arrival of TWINS! Back then, the only knowledge I had of Down syndrome was the children’s book, The Diamond Bird, so when our family heard the news it was devastating. Crushing. Life was ending, we thought. To see my father deal with it gave us the chizuk we needed. Although it was a very difficult challenge for him, he didn’t fall apart. Together with my mother, Mrs. Diana Kuessous, they built the foundation for us to learn from. They often repeated the advice that a gadol in Eretz Yisroel gave them that first challenging year, “If you treat them like they are normal, they will be almost normal.” That was their motto and it’s been our motto ever since.
The twins are “regular” kids who happen to have Down syndrome! They enjoy looking good and dressing up, they love being part of the adult conversations that we have as a family, they have homework and housework and they even had a part in their school’s high school performance this past February. In my father’s own words, “Wherever these children go they’re a ball of fun! There is never a dull moment. They are the most popular kids on the street. We have two treasures.”
Nechama and Batya are always getting invited out for Shabbos. They go to camp friends in Passaic, to Center (a Lakewood respite center) counselors, and to girls in Brooklyn who know them from spending summers together in Deal. They really live it up in life!
My parents expected them to behave just like all the rest of us kids. They learned how to make brachos and how to daven. They come to shul on the Yomim Noraim and try to follow the tefillos along with everyone else. Batya and Nechama are familiar with most of hilchos Shabbos and Yom Tov and are careful with them. If they were ever talking during Kiddush, my father would give them a ‘look’ and they knew to stop.
I remember the twins sitting at the kitchen table one night trying to do their math homework. When they asked my father for help he responded the same way he did when he helped all of us…he went back to square one and made them figure out the answer on their own. Like my mother says, “They didn’t like it when he did homework with them! He never gave them any answers!” There was no special treatment; they had to figure it out like the rest of us.
My father was menahel (principal) of Yeshiva Sharei Torah Boys Elementary in Brooklyn. When he would come home after a long day of work he would sit down in his office chair and the twins would come and say hello. The next thing you knew, Nechama or Batya would be untying his laces and taking off his shoes. It was adorable; they knew just what he needed. Then Batya would take the tall glass from the kitchen cabinet and fill it all the way up with water. They respected him and loved him so much.
When my father got sick with the dreaded illness that eventually took his life, the twins were even more loving and caring. They would run to the door to greet him when he came home and rush to bring him his warm robe and slippers. Sometimes he would be feeling cold and they knew which was his favorite blanket. They’d quickly get it for him and gently cover him. They understood that things were not the same and they felt so bad when he was in pain.
One night, 4 of my sisters had to go to Lakewood for a Sheva Brochos. Nechama begged and begged my mother to be allowed to go with them but my mother refused; she didn’t want Nechama out so late. Then my mother realized that she herself had to run out for an hour. She told the twins, “You stay here with Daddy and I’ll be back very soon.” After a few minutes, Nechama called up her sisters who were on their way, crying and crying. “I want to come! It’s not fair that I have to stay home!” The girls felt bad for her so they called up Shifra, a close friend, and asked her to please pick up the twins and take them to 7-11 for a slurpee (their favorite). When Shifra pulled up to the house five minutes later, Nechama stormed into the car and said, “Shifra, I can’t be home anymore! I’m sick and tired of babysitting my father!!” It seems the responsibility was too big for her little shoulders…
My father used to say that Hashem wants us to have these children. We have a tremendous tafkid; we should ‘love them, love them, and love them some more’. And the twins loved him right back. Shortly after he was niftar, my sister heard the twins swinging in the backyard, singing. When she came closer she heard the words of the song. Nechama made it up and taught it to Batya. It went something like this, “I miss my father, I cry all day….”
Sometimes it takes a special sister to say the things we all really want to say, but don’t.
In November ’09 the Special Children’s Center of Lakewood, New Jersey, co-headed by one of our close friends, Jenine Shwekey, organized a Shabbaton of chizuk for parents of children with special needs. As in other years, they invited my father to come, and of course, to give a speech. This was right after my father had gotten the initial diagnosis of his illness. They were going to operate shortly after and only then was he to learn how serious was the situation. At the Shabbaton the mothers would shmooze easily amongst themselves, but many of the fathers had a hard time opening up. But they all felt comfortable with Rabbi Kuessous. He was so real, so practical, and his faith was unbelievable. Jenine related that all the men there, from young fathers to Roshei Yeshiva to old timers, loved him and clung to him.
That Shabbos afternoon found him and his close friend, Rabbi Baruch Rabinowitz, on the boardwalk near the hotel, deep in conversation. They were oblivious to everything around them and totally lost track of the time. In fact, my very responsible and punctual father missed the afternoon session where he was scheduled to speak! The two friends walked and talked together for nearly an hour. Luckily for us, R’ Baruch was able to repeat my father’s precious words from that conversation. “We can not choose our nisyonos, our life challenges, our children, or our tests,” he told R’ Baruch calmly. “The only thing in our hands is what we do with them and how we react toward them. I accept whatever Hashem gives me. If it’s a special child, so that’s Ratzon Hashem. If it’s two special children, so that’s my job in life. And if it’s illness, I’m going to try and change the ‘gezeirah’ and do what I can, but if, chas vesholom, the gezeirah can’t be changed, so this is the same Ratzon Hashem.” Then R’ Baruch finished repeating their conversation and he raised his voice and cried, “He was so calm! So serene! He was a ‘melech’!”
My father’s faith was rock solid. The truth is, though, that he did struggle with emunah when the twins were just born. He often repeated the comical story that he read in Rabbi Yissocher Frand’s book about the man who had a small part in a play. When the canon would go off, this man would stand up tall on stage and shout, “Hark! I hear the canon roar!” All day he practiced his one and only line, “Hark! I hear the canon roar!” Finally, it was opening night. The play progressed smoothly and then the canon went off with a boom! And the startled man looked around in confusion and shouted, “What in the world was THAT?!?”
My father would then say, “All of our lives we hear and learn about emunah and bitachon. We’re busy practicing our lines. But then comes the canon – the test - with a boom! Are we ready? Do we embrace the test and stand tall and strengthen ourselves in emunah? Or do we miss our cue and get thrown off guard and forget our lines?”
When his diagnosis was confirmed my father said to his Rosh Kollel, Rabbi Diamond, “When the twins were born 15 years ago, I didn’t feel I was so strong in my emunah. I wasn’t able to accept it like I should have. So all these years I’ve been practicing my lines and building my bitachon. Now with this new test that Hashem gave me, I am able to accept it like I’m supposed to.”
He heard the canon go off and he performed beautifully.
So great was his love for the twins and acceptance of his role in life that it spilled over onto his children and we were ready when the next canon went off. Four months before my father passed away, my sister Sori gave birth to her first child, a gorgeous little boy…with Down syndrome! Now their precious Isaac is the center of attention and we are always fighting over who gets to hold him. But back then, what a shock it was! We couldn’t believe it. My father put it all in perspective. When he saw us crying after hearing the news he told us, “Why are you crying?! It’s not Tisha B’Av!” Yes, it’s hard, it’s a huge canon going off, but it’s not sad, it’s not Tisha B’Av. He was so proud of Sori and her husband for being mekabel this test and for rising to the challenge. They learned the secret from my parents and they continue to inspire us each day.
My father used to say that an experience like this brings you to the reality that the Ribono Shel Olam runs the world and guides everything. We walk around thinking that WE run the world and we can do what we want. It’s nonsense! Hashem guides us! If you live with Hashem, life gets much easier!
If only we can remember those words and hold them close to us at all times, our lives would be so much more serene.
Shortly after the shiva of my father, Nechama walked into the house holding a shopping bag. Inside was a banner and streamers bought from The Dollar Store.
“Nechama, what is that?” My mother asked.
“Me and Batya bought a sign for our father. When he comes back we’re gonna make him a big party and order Chinese ‘cuz he likes Chinese. And we’re gonna hang up the streamers all over the room.”
“But Nechama,” my mother gently told her, “I explained to you already - Daddy might not be coming back for a long long time, it could be years…”
“That’s okay,” she answered. “I’ll wait.”
She unrolled the banner and held it up for my mother to see. In big colorful letters it said, “Welcome Home”!
May it be soon, Nechama and Batya.
“From your mouths to G-d’s ears…”
This article first appeared in issue #16 of Down Syndrome Amongst Us