Kids of Courage, the Commonality of Disability, and Elul

The one hundred and thirty children and young adults with whom I spent a few days share two things. They are all Jewish, and they all contend daily with serious and debilitating illness. Many of them have done so all of their lives. You would think that this might provide the ultimate mussar ride for Elul, an in-your-face confrontation with your own mortality, and the need to be grateful to HKBH for life itself and the parts of it we take for granted.

You might think so, but you would be wrong. It’s not the ultimate ride at all. It may be the teeter-totter compared to the Montezuma’s Revenge of lessons you can garner from these kids.

In the three years that he was supposed to be sitting in classrooms at Cardozo Law School, my son Ari – together with some valiant and dedicated partners – built up Kids of Courage, by offering gradually larger and more exciting programs for young people who face challenges you don’t want to know about. They include the Jewish genetic diseases, as well as the alphabet soup of development gone awry – CP, MD, CR, etc. And of course, various cancers. Some conditions are so rare, they have no names and no medical literature.

Armies are never better than their supply lines. When Kids of Courage moves, two lines move out with them, offering complex medical as well as logistical support. The sight of over a hundred kids, many in wheelchairs hooked up to elaborate apparatus, but all smothered with attention and love by their volunteer counselors (everyone – with the sole exception of a sole part-time secretary – in Kids of Courage is a volunteer) overwhelms the adults who meet up with them.

An entire Continental jet couldn’t contain them all on the flight from Newark to Los Angeles. Illusionist David Blaine turned up for the ride, and entertained en route. Nothing thereafter could contain their enthusiasm, or limit the Kiddush Hashem they made. Katie Couric sent a video crew, and CBS will be doing a segment on them. MLB will be running clips about them for two weeks, taken from their appearance at an Angels game. Returning from that game, the kids were taken, unannounced, to the block of Mann’s Chinese, where twelve Lamborghinis pulled in behind the buses, and their owners spent three hours hurtling them down Hollywood Boulevard. Tourists, expecting to be entertained by the over-the-top atmosphere of the Hollywood Walk of Fame, were instead enthralled by the sight of three hundred young people, led by identifiably frum counselors, singing and gyrating with a joy that has nothing to do with what is usually celebrated in LaLaLand. They stopped to watch and to photograph, as did the tourist buses. So did a media pool, resulting in clips of the event appearing on television stations across the country. The Lamborghini owners were so impressed that when their tour of duty ended, they followed the busses to a Beverly Hills home for a barbeque, where Laker legend AC Green presented “Oscars” to the kids, making each one feel like a superstar. (Green was a good choice, and a supermensch. Deeply religious, he spurned the womanizing foisted upon him by his incredulous teammates, arguing that he would wait for marriage.)

This was one day, out of nine. Kids of Courage took them to Disneyland, Knotts, Universal, a water park, Venice Beach, and gave them a beautiful Shabbos with Shloime Daskal.

Wherever they went, they radiated enthusiasm, forcing it inexorably on those who witnessed it.

Those witnesses could easily have missed the real point. They didn’t see the transition. They couldn’t see that some of the kids were apprehensive on Day One, withdrawn, timid, quiet, justifiably locked into their own problems and concerns as surely as their malfunctioning bodies held them captive. They couldn’t see that a day or two or three later, the same kids came alive with spirit and confidence. Disneyland didn’t do that. Carefully thought-through chesed, offered lovingly by counselors and staff after much deliberation and planning, did that, affording them an opportunity to be as fully human as anyone else out there, sometimes for the first time in their lives.

We return to the real Elul lessons of Kids of Courage. I’ve watched the organization grow from a handful of kids sitting around my Shabbos table, brought to Los Angeles by my son. I never quite understood the name. Courage? What kind of courage do you need to sign up for a dream week of visiting amusement parks? Despite what I saw in front of me, I too had missed it all.

Until Sarah spoke last Thursday. She explained what it took to summon up the energy to even attempt a plane flight. How so many kids had pushed themselves towards other activities that the rest of us take for granted, and how they had failed, and failed again, and yet again. How after failing too many times, you don’t want to risk the disappointment – and the pain – of failing again. How it took, in fact, superhuman courage to try again, plus circumstances that would make it reasonable to try.

Listening to her, it struck me that she was describing Elul. We’ve tried, and tried again, to correct our faults, to make it back to the Ribbono Shel Olam big time. After too many failures, we stop trying in earnest, not wanting to risk the disappointment of more failure.

Like the Kids of Courage, there is a neshamah inside that yearns to express itself, wants to be free of the limitations of our physicality. In our case, HKBH Himself provides the model circumstances to make the trip back – the month of Elul. The real mussar to be taken from these kids is precisely their courage to make the attempt. They are nothing but an inspiration.

Quite a few chassidishe kids were part of the group, as well as completely secular kids. One of them told his story to the entire group. When he first became aware of the organization, his parents nixed his participation. As he put it, “After all, the group included nekaivos.” (The organizers keep mechitzos in place. Buses are separate. The dining room is divided. Because of the volunteer nature of the organization and the scope of the trips, it is simply impossible to run separate trips for boys and girls. All the counselors are frum, representing all parts of the Orthodox world, including chassidish and YU/Stern. Deliberately. Most are still from the yeshivish part of the community, albeit from the more open parts of it.)

His participation was stalled, until my son intervened. He visited the parents, and made his pitch. “I understand your concerns, and your unwillingness to expose your son to anything less than taharas hakodesh. I can’t offer that. The program needs to run the way it does. But please consider what is ahead for your son. Think of his medical prognosis – how limited are the years allotted to him bederech hateva. We are not talking about issurim here, but about lack of lechatchilah. In the case of your son, is there any greater lechatchilah than to bring him the most simcha and joy in the time HKBH has assigned to him?”

This was the other wallop of a lesson for Elul. We are all on limited, borrowed time. Is there any greater priority for us than to bring simcha to as many of our fellow travelers as possible, and in so doing, to bring simcha to Avinu She-bashomayim?

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13 Responses

  1. Yitzchok Adlerstein says:

    I have no idea why the site is displaying a title of “Auto Draft,” rather than the proper, if somewhat cumbersome, title that I supplied is “Kids of Courage, the Commonality of Disability, and Elul.”

  2. Raymond says:

    Children who are born disabled, is far easier for non-believers to explain: stuff simply happens, nature could not care less who deserves or does not deserve such suffering, and that is that. But for the religious person, it may be harder to explain this, other than to say that reincarnation is a reality, or that the purpose of our lives is not primarily for enjoyment, as much as it is a grand school from which to learn lessons about life. I personally do not have the inner toughness required to deal with children born with deformities, but such people are a visible reminder to me of just how lucky I am to have been born a relatively well-functioning human being.

  3. Gershon Spiegel says:

    As a grateful parent of one of the “kids of Courage”, I readily concurr with Rabbi Adlerstein’s article. It is impossible to appreciate the level of support both in people, medical personnel and supplies required to carry out this one week long event for so many people. My daughter will not soon forget this wonderful experience.

  4. Debbie says:

    Reading this article, I am simply in awe of Kids of Courage, and the people like your son who run it. These are young people who have taken up a cause greater than themselves, with no other motive other than bringing joy to children who face daily challenges that we should never know of. We all clearly have so much to learn from the amazing kids and staff of Kids of Courage. Beautifully written article.

  5. barry says:

    “We are not talking about issurim here, but about lack of lechatchilah. In the case of your son, is there any greater lechatchilah than to bring him the most simcha and joy in the time HKBH has assigned to him?”

    If Ari is wise enough to offer arguments like the above, he lost nothing by not attending law school. May he continue to have the impact on others as great as he’s already had.

    [YA – He registered, took finals, maintained his scholarship, graduated and took the NY Bar. (We believe that HKBH took his finals for him.) Now all he needs is a job 🙂 ]

  6. Rabbi Shmuel Jablon says:

    Yasher koach to you–and most of all to Ari. The mesirut nefesh of the volunteers should inspire us all.

  7. Dovid Kornreich says:

    “We are not talking about issurim here, but about lack of lechatchilah. In the case of your son, is there any greater lechatchilah than to bring him the most simcha and joy in the time HKBH has assigned to him?”

    If Ari is wise enough to offer arguments like the above, he lost nothing by not attending law school.

    Does this argument strike anybody else as being more a secular humanist/hedonist/epicurean argument than a Jewish one? Indeed, one that a lawyer would make but not a rabbi?
    I have no objection whatsoever to chessed, but how does one’s immanent death augment the urgency for “simcha” (read: pleasure and excitement to the point of indulgence) in a Jewish world view?
    Is this not the philosophy of “eat, drink, and be merry for tomorrow we die”?

  8. mb says:

    “Does this argument strike anybody else as being more a secular humanist/hedonist/epicurean argument than a Jewish one?”

    Not one bit.

  9. Ori says:

    Dovid Kornreich, what is the reason for separating boys and girls at this age? Does it enhance holiness in prepubescent children (I assume that is the group discussed), or is it a fence so they won’t intermingle when they are older and modesty becomes more of an issue? If it is the second, then is there any point in worry about it with children who, heavens forbid, are not likely to get to that age?

  10. Dovid Kornreich says:

    To Ori:
    I wasn’t criticizing the notion of accepting a bide’eved for the sake of a greater chessed.
    But how does Ari conceive this greater chessed? IMHO, it seems to be a conception of chessed which is foreign to Judaism. That is my criticism.

  11. Miriam says:

    Dovid Kornreich – Seems you are questioning the fundamental concept of vacation. I don’t think that family was – terribly limited by their son’s general inability to travel, the opportunity to give their son a pleasant vacation had a lot of appeal.

    Whether this group with separate buses, an always divided room and most importantly same-gender staff allocation – yet mixed attendance to all programming – is truly “lack of lechatchilla” or Ari’s diplomatic way to acknowledge some less-than-ideal for the Chassidic family, can also be debated. And the true halachic process does indeed balance various factors for the overall needs and benefits of the people involved.

  12. cvmay says:

    Rav A. Birnbaum wrote an article in the Yated about a month ago, regarding the issue of ‘Having Fun”. Lamenting the fact that todays youth and families will go to extremes to reach the optimal of ‘having fun’. I tend to disagree, the path to fun, excitement, pleasure is really a travelfest for HAPPINESS. The quest for Happiness is a worthy enterprise and is the core to a healthy Torah existence. Fun, excitement and pleasure opens the door slightly to let in some well-needed happiness!! Go for it..

  13. Miriam says:

    cvmay – Your contribution reminds me of a comment from my holy Teimani cleaner, that people today make little children’s birthday parties so fancy you would think they’re a bat/bar mitzvah – and even as a major milestone that’s overdoing it. That it’s the ice cream and cake, some age appropriate fun games and a little joyful song that the kids really love.

    I’m sure there is an element of overdone vacations and unhappier chilren, but we try to stick with the crowd that does more average things and enjoys them.

    I read somewhere that happiness is best a byproduct than a primary purpose, that if you’re too busy asking yourself “am I enjoying myself” of course you won’t. Not disagreeing with what you said, rather acknowledging that happiness can be cultivated within a Torah perspective and it takes awareness.

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