"It's True Our Motti is Limited, But Why Shouldn't He Celebrate a Bar Mitzvah?"

Not every child gets such a Bar Mitzvah event, or more accurately – most children in Motti Meringer's situation do not get a Bar Mitzvah at all. Why? Simply put, because. Those who didn't agree with this understanding were Motti's mom and dad. "He understands everything, and perhaps even better than any of us, but people think if a child has a physical limitation, or any disability, that his mind is also affected, and that's the harsh mistake."

Motti Meringer was born to his parents, Itamar and Ruthie, 13 years ago. He was a very cute and mainly healthy baby. They were a young couple with two little girls and a new tiny baby; everything seemed perfect until Motti was ten weeks old when he developed a high fever. Like any baby with a high fever, Motti was taken to the doctor. However, a series of negligent failures resulted in no one identifying that the small baby was suffering from meningitis, and the upcoming hours were critical for preventing irreversible damage. Motti was sent home without any medical response to his problem, and after several days of inadequate treatment, Motti arrived in critical condition to the intensive care unit at Tel Hashomer Hospital and was discharged only after weeks of treatments, grim predictions, and with severe and irreversible brain damage. "The doctor's negligence is Hashem's will," Motti's mother repeats to me, although it's not the doctor's error but negligence, but in her view, it doesn't change Hashem's will.

No One Prepared Them

Where did it catch you? I asked Motti's dad

"Motti had a fever for the first time on Thursday, but the doctor did nothing about it, and we ourselves closed our eyes. On Sunday morning, I went to deliver my regular Daf Yomi class and then to pray. Towards the end of the prayer, I received a phone call from my panic-stricken wife: 'Motti has a very high fever, he doesn't look good, come quickly.' I remember running with the tallit and tefillin still on me, I didn’t even manage to take them off. I arrived home and saw Motti, with a fontanel the size of a small yarmulke; at that moment, I had no doubt that things were heading in a bad direction. I didn’t know how bad, and I didn’t want to know. We called an ambulance, and someone decided to have an accident at that very moment, delaying the ambulance 45 minutes. From that moment, our lives changed drastically."

Motti's mother allows herself to clarify her husband's words: “It's true that our lives changed, but not necessarily in the direction you might think. Our lives didn’t become worse but more challenging. There is a big difference between a challenge and a hardship. A challenge is an effort but not necessarily hard. I remember Itamar told me after we left the hospital for the first time that there are two ways to look at this story: one way is to be miserable, sad, and to mourn, and people will pity us. And there's the second way, to see it as a project that we can grow from. We decided to choose the second way, understanding that Hashem gave us a project, and we will meet the challenge."

Did you know or at least suspect what kind of project you are getting into?

“We knew nothing, but realized that we were setting out on a new journey, an unknown voyage. No one could have prepared us for what was coming at every age Motti would reach, because what Motti needed at the age of one was completely different from what he required at the age of two, and so with each age and its challenges. Even today, thirteen years later, I don’t know what Motti will need in a year; it is very dynamic."

Motti began his life's journey very limited in all his physical movements, unable to walk, unable to move his hands freely, unable to speak, and even his vision was defined as severely impaired. His parents heard much worse forecasts from doctors, but they chose to believe in the Creator of the world and not in the doctors. Motti has come a long way in his development and rehabilitation, "He is like a normal child; he knows everything, has friends, desires, and feelings; he knows how to cry and laugh, to get angry and excited. So why is he different?" asks Motti's mom. Following this understanding, they decided that Motti would have a Bar Mitzvah like any child reaching the age of thirteen.

Desire for a Bar Mitzvah

When did you understand that you would arrange a Bar Mitzvah for Motti?

“Initially, it was clear to us in the most natural way that we wouldn’t make a Bar Mitzvah for Motti. What's the connection in holding a Bar Mitzvah for a child who can’t move, can’t speak? How would he give a Bar Mitzvah speech? How would he receive guests and shake hands with attendees? How would he dance? But half a year before the Bar Mitzvah, we decided that we must make Motti accessible to all the family and acquaintances. The assumption of people is that if a person is limited in something, then he is limited in other things too, but that’s a huge mistake. Because Motti feels pain like anyone, he wants to be loved like every person who wants to feel loved; he wants to feel special like every person who wants to feel special, despite all his limitations, just without the ability to express it.

“Today we already learned his expression of emotions through gestures, various facial expressions, and a communication computer. But in the eyes of someone who doesn’t know him, there’s no expression of his emotions. So we wanted to highlight the other amazing abilities he has and give him the opportunity for one whole evening to be the central stage, the spotlight for all the participants."

So you decided to celebrate a Bar Mitzvah?

“Correct, but with a slight change. You call it a Bar Mitzvah, but I call it a wedding by the presence of one side, because we understand that this is the only celebration Motti will ever have in his life, and it is a celebration that belongs solely to him. Therefore, it needs to be something big, something impressive, something that will be etched into the consciousness of Motti, our consciousness, and that of all the invitees."

How do you start planning?

“After countless deliberations and ideas on how to celebrate Motti's Bar Mitzvah, held within our small family that includes his sisters, we offered Motti some ideas for the Bar Mitzvah celebrations. Such as a family trip, family vacation, a modest party at home, and more... but Motti insisted that we hold an event like for all the 'normal' kids, with many guests who love him dearly, with gifts and music.

“We gathered all the family kids around the living room table and shared our wish to celebrate a big Bar Mitzvah for Motti. We asked each of the girls to come up with a good idea that they think would make Motti happy. This way, all the girls felt they were full partners in the Bar Mitzvah celebration. Incidentally, one of the reasons that made us decide on a Bar Mitzvah was the desire to involve all the family girls in the celebration and excitement around the event – the clothes, hairstyles, makeup, studio, invitations, pressure, mess, and all that surrounds the Bar Mitzvah celebration. They needed it for their souls, both because it was the only Bar Mitzvah they had in close proximity and to understand that Motti is not just a burden, but he also creates celebrations, and oh, what celebrations.

The preparations were at their peak two months before the Bar Mitzvah. On the fridge at home, like an Omer counting board, it was the most talked-about topic at home, and every time we mentioned the words 'Motti's Bar Mitzvah,' there was no one more excited than him on earth".

Forgive me for asking, but Motti doesn't speak, doesn't move. So how do you know he's excited?

“Wow, when Motti is excited, the whole neighborhood knows. He lets out shouts of joy from his mouth, and his smile is felt throughout the street. He stomps his feet, and his entire body shakes; you see he wants to be like all the other children, but his body limits him. We learned to identify when he is happy and when he is sad; a stranger wouldn't know how to tell."

Motti's Bar Mitzvah celebration was highly emotional, the hall was decorated and ornate with the best arrangements and designs, the photographer team invested in the best backgrounds and innovations, invitations were distributed to all distinguished guests, and the hall began to fill with all the invited families from all sides. "When you say all the families, you probably mean the biological families, but Motti has another family of his own; we call it the 'Challenge Family' composed of various special organizations like 'Taf LeTaf,' 'Ilnot,' 'Shalva,' about twenty-five volunteers of the 'Brother to Brother' organization, and a similar number of volunteers who come without belonging to any organization. Also invited were about fifteen sets of parents facing challenges similar to ours. It was like a special empowerment evening," says Motti's mom. "We have become one big, embracing, and loving family, one shaking the other’s hand, and in times of crisis, one hugs the other; it makes coping much easier".

What did Motti do throughout the evening?

“Initially, he posed for studio pictures, and afterwards, for forty-five minutes, Motti received all the guests who began to stream in one by one. He was engulfed in endless hugs and kisses from everyone, and from each hug, he was over the moon. His delightful cries of joy were at the highest peaks of cheerful excitement, and the joyful sounds he made exceeded all the happy decibel limits in the hall. There were also dances, and Motti was the main dancer in the circle. It was his evening; he was the central star, and he understood that everyone came just because they love him. He had to know that despite being different, he is loved just like all his sisters. Afterward, Motti gave a Bar Mitzvah speech through his communication computer with a voice switch. The speech was pre-recorded before the event and was displayed on large screens during the celebration. Motti's speech content was thank-yous that he chose to say; first, he chose to thank the Master of the Universe, his parents, sisters, and school staff, everything by his choice alone, from a Communication Board prepared for him in advance. After Motti's Bar Mitzvah speech, I gave a talk and spoke about the experience, our coping strategies, the wonderful gift that Motti is, his sisters' endless love for him, and the surrounding world that doesn’t always understand him."

Someone Sent Me Little Gifts

Were there gifts? What gifts do you bring to such an event?

“Of course, there were gifts, gifts you don't receive at any other Bar Mitzvah. We called it 'The 13 Gifts Program.' We chose 13 very significant people in Motti's life and asked them to think of a gift idea for Motti related to his character. It was a very central and creative part of the evening. You don’t expect me to detail what was said about each gift, but one gift moved us all particularly. It was the gift from his sisters, who bought him a pillow with a cover printed with a family photo and the inscription: 'Even at night when you sleep and dream, know we are with you and love you.' Additionally, his sisters read a very touching blessing, not a dry eye remained..."

Anyone who thought the Meringer family settled for a Bar Mitzvah just to tick a box in the tasks schedule was wrong. For a Bar Mitzvah celebration is accompanied by a Shabbat Chatan, a Shabbat where the groom comes to the synagogue and is called to the Torah for the maftir, reads the haftarah, and candies are thrown at him from the women's section.

“The ceremony of the aliyah to the Torah was an attraction in itself," recounts Motti's father. "On Shabbat morning, we woke up early, dressed Motti in a new set of clothes bought for the occasion of his Torah aliyah, while dozens of worshippers were already waiting for us outside to accompany Motti with the famous tune that accompanies every Bar Mitzvah boy to the synagogue. It was a breathtaking sight. All the neighbors stood at their windows cheering for Motti, and Motti responded with shouts of joy. We arrived at the 'Baal Shem Tov' Synagogue in Modi'in Illit, known as the Carlebach minyan, and it was bursting to the seams full. The prayer went on as usual, then came the Torah reading, and then came the maftir. The gabbai announced in a loud voice, 'Let the Bar Mitzvah groom Mordechai Eliezer, son of Rabbi Itamar maftir,' and all the worshippers held their breath, to see how Motti would go up to the Torah for maftir. There was a whisper of excitement in the public, and the tension was at its peak. I took Motti, and with him, approached the Torah scroll. We stood together close to the Torah, and I recited the blessings of the Torah; Motti felt like he himself was blessing. Afterwards, candies were thrown in amounts that every child smiled for weeks from the treasure they gathered, and in parallel, all the worshippers came to congratulate Motti with 'Mazal Tov'. It felt like not only the angelic hosts were part of the celebration, but Hashem himself was participating with us, and rejoicing in the massive joy that was there. I can tell you that since that Shabbat, all people come to greet him, saying every Shabbat, 'Shabbat Shalom'; he is no longer just a disabled boy sitting in a wheelchair...

“In conclusion, I want to say to all dear readers: each person has their own challenges. We don't have control over the waves of the sea, but we do have control over the sails, and that’s what saves the ship at the end of the day."