A Bar Mitzvah for a Boy With Special Needs

I never thought that I would have written a story about Baruch. But I did, and it has been one of the best things I have done. Little did I know that one story, my personal experience, could affect people in the way that it has. Little did I know that it could affect me in the way that it has.

When that article was posted, (See, Baruch, Our Special Child) I showed Baruch the picture of himself that accompanied the piece. The first thing he did was point to his picture and then point to himself (means “me”). Then he saw my name and signed "good" and gave me a big hug! I took this as my personal sign from G‑d that I did the right thing in writing that story.

It was because of that story that I am now writing this one. I am grateful to all who read about Baruch and were concerned and connected and inspired me to once again write about him.

As you know, Baruch is not the ordinary kid next door. Baruch is truly a miracle child. He was born with severe disabilities that caused other infections and problems, so much of his first few years of life was touch and go. We lived with the knowledge that at any moment our precious boy could be taken from us. And yet we lived to witness miracle after miracle as he survived and triumphed time and time again.

Now, at the age of 13, Baruch is still deaf, has a trachea tube in his throat and eats only through a gastrostomy tube in his stomach, but for a boy that all his doctors thought would never walk or understand or interact, he has proven them more than wrong.

It is now Saturday evening, and today was Baruch's 13th birthday. It is hard for me to say "Bar Mitzvah" because he is not yet ready for the responsibilities of the Torah's commandments, nor do we really know when he will be. Yet, today was a special day. Emotional, but special.

A few months ago, as his 13th birthday loomed closer, my husband and I began to discuss what we should do. At first we thought nothing should be done at all. How could we "celebrate" a "Bar Mitzvah" that wasn't? But then we realized that there was much that we did need to celebrate. We had reached many milestones. Baruch was still alive. He was learning and progressing. He was sharing his special smiles and hugs with all those who met him. He attended synagogue each week and was part of the "shul family." But what could we do? We felt uncomfortable making a big affair, yet we could not just ignore the day.

Soon it was March, and Passover preparations began. We felt it was time to try to get Baruch more involved in what was going on. We decided to make him a Haggadah (the Passover guide and story) with simple sentences and lots of pictures, so that he could follow the Seder and understand what the whole holiday was about.

My eldest daughter, Chaya Mushka, put it together. We put the pages in a display folder with plastic pockets to protect it from saliva. This became our teaching tool and we went through it with Baruch a number of times before Passover. Baruch would not let go of his "Haggadah." He sat through the Seder in our home, and for the first time signed the Four Questions. We were very proud.

The big test was the second night. We went to our cousins for the second Seder. There were twenty-two people there. Would Baruch sign again or would he be too shy?

Baruch sat through the entire Seder. When it was his turn, he signed the Four Questions. You could hear a pin drop. There were many children there, and during their turns, I must admit, not all the adults kept quiet. But Baruch, who said nothing at all, signed in absolute silence!

For us, that was the turning point. We began to think, "If he can accomplish this, why can't he sign the blessings on the Torah in synagogue?" Right after Passover we began planning a "Bar Mitzvah book."

We took pictures of the shul, of the Torah, and the bimah (where the Torah is read) and of Baruch. We began to think of what the notion of responsibility could mean for him, and we came up with a few ideas: keeping his kippa on his head at all times, the ritual washing of his hands in the morning, not mixing up We began to think of what the notion of responsibility could mean for him my milk and meat dishes in his attempt to help clean up, keeping his room clean and not switching lights on and off on Shabbat, to name a few. These became the basis of the Bar Mitzvah book. We started with the order of the Bar Mitzvah day: Baruch will go to shul with his family; the aron kodesh (the Ark) will be opened, the Torah will be taken out and put on the bimah; Baruch will be called up to the Torah, Baruch will sign... And we included the blessings. We sent the book to school as well, so his teachers could practice with him.

We then called the synagogue and explained that we would be sponsoring the Kiddush (meal following Shabbat services) in honor of Baruch's birthday. Our synagogue has an email notification system and we asked that everyone be notified of the occasion since we were not sending out any formal invitations. I also called my cousins who live here in Melbourne to join us in our shul and to stay for the Kiddush. We decided to cater it ourselves. My husband and I made a number of salads, my cousins and friends pitched in too, with gefilte fish, spreads and cakes. We thought it would be a small affair.

Boy were we mistaken! We did not realize the impact Baruch had made on all the people here. Word spread in the general community and people began approaching us to wish us Mazel Tov and the informal "invitation list" grew bigger. Our simcha (joyous occasion) was not only the shul's simcha but a community simcha. The shul was packed. We were nervous. Baruch can get very silly in a crowd. Would he be able to sign the blessings as he practiced, or would he become silly and shy?

Baruch went up to the bimah along with his father who was going to translate into English what Baruch was signing, and then recite the actual blessings on the Torah. When Baruch got up there, he began shyly, with one hand in his mouth. Signing with one hand is not a very comprehensible language, let me tell you. He slowly gained confidence and he beautifully signed the second blessing after the reading of the Torah. The whole shul erupted in a spontaneous Mazel Tov dance. Baruch was put up on his father's shoulders and all the men began dancing in a circle around the reading table.

What can I say? I cried. I think many people did. A bar mitzvah celebration is supposed to be the day when a young boy becomes a "man," a person responsible for his actions. For us, this is not the case. Baruch is still a young boy (he functions at the level of a six year old) and will probably be so for a number of years to come. But that was not what I was thinking at the time and I don't think that is why I cried. I can't really tell you why I cried. I just did. Maybe it was the pent up emotion of all the years. Maybe it was the relief that my son who we were told would die twelve years ago, was standing there at the Torah, blessing G‑d who had given him life. Maybe it was the outpouring of kindness, support and well wishes from all the people in the shul. Maybe it was because my immediate family was not there to witness this moment. Maybe, and maybe not.

Baruch was very excited; he shook each person’s hand and gave spontaneous hugs. The Kiddush continued for a few hours. One by one, family members and friends got up to say a few words. They described how they had been touched by Baruch and by our family. It was very humbling for me, as were the comments many people wrote on the web after my previous article about Baruch.

You see, I do not see myself as a "courageous woman" as some have called me. I struggle, I make mistakes. But as a Jew who has learned Chassidut, I forge ahead. I do not think of what could have been but of what I need to do. I am not "brave." I have my down times, I have my cries, I am human. But knowing that I have a G‑dly soul, that we all do, gives me strength when I need it. Each of us has challenges in our lives. They are all different, but they are challenges that we struggle through.

People who hear my story say that I have inspired them, but let me tell you that they have inspired me too. It is one thing to believe that all G‑d does is for the good, and it is quite another thing to see the good in a revealed way. Of course, "good" is a relative term, and there are many levels of good. But when I see how much Baruch has affected the people around him, when I hear your anecdotes, when I hear that you are more patient, more forgiving, more thankful and more tolerant because of Baruch, then you help me to continue doing what I need to do. You have "recharged my batteries," and for that I thank you all.

May the acts of goodness and kindness spread so that the world at large will be ready to greet Moshiach, when all the mysteries of G‑d’s ways will finally be revealed to us all.