Can a quadriplegic dance? Can a thin, raspy, artificially high-pitched voice make sonorous music? I would not have believed these to be true had I not seen them myself at the Kids of Courage (KOC) event in Orlando.
Many other Americans caught at least a glimpse of it, since ABC News carried some of it on its news feed. When a chartered and fully utilized Continental Airlines jetliner left Newark last Thursday, they were there, along with three other networks and print media. What greeted them stirred them to the core. A veteran journalist conceded that she had never seen anything like it, and talked her way on to the plane, staying for hours till takeoff. It may have been the largest group flight ever of children and young adults afflicted with major handicaps and serious illness (a total of 89 between the special Newark flight and others from different points of departure), accompanied by a much larger group of medical personnel, counselors and logistics specialists. In Orlando, the kids would be feted for a week of theme parks and activities that would allow them to have the fun that is ordinarily completely beyond their reach.
In the aftermath of the negative images of frum Jews that still haunt us, this kind of treatment was a gift from Heaven. The coverage included the Kids of Coverage website. Within a short period of time, the website crashed under the pressure of so many hits, including many who used the contact email address to volunteer contributions. Among those who messaged was a NYC school teacher – probably not among America’s richest – with a very African-American name who wrote that she wished to send money – monthly.
Continental Airlines showed remarkable professionalism. The boarding procedure alone took two hours, as kids had to be moved from their own wheelchairs (laden in some cases with advanced medical gear, and weighing up to seven hundred pounds) to ones provided by the airlines to navigate the ramps and aisles, and then to their seats – while attached to breathing, feeding and monitoring devices in some cases. The flight that would follow would predictably throw some kids into psychological or medical crisis – for which the Kids of Courage staff was prepared, but would be a new experience for the cabin crew. Continental got the word out that only employees who absolutely loved children should be on this flight. All others would be excused, without consequences. Those who essentially picked themselves for the journey provided care far beyond what the rest of us are used to getting on commercial airliners. Continental was so pleased with the flight that they immediately messaged that they wished to continue the relationship and offered to upgrade the aircraft for the return trip. They demonstrated more of that resolve when it came time to deplane the aircraft upon return to Newark. They were met at the airport by the same crew – all wearing Kids of Courage T-shirts, and all working without pay on their time off!
The KOC volunteers are remarkably dedicated. Swine flu’s threat to the tenuous health of these kids dictated that a camp setting would be too risky this summer. Literally in the space of weeks, Kids of Courage came up with the idea of a camp without bunks, minimizing the risk of contagion, and saw it through to completion. That meant vetting campers, volunteers, and finding a suitable hotel that both would accommodate special medical needs of the children and was also Shabbos and kashrus friendly. (The famous Lasko catering family of Miami provided all the meals.) It meant having medical contingency staff available in Orlando, negotiating deals with many theme parks, attractions, and entertainers, and thinking through every minute and every need of every day in advance. It also meant raising an enormous sum in the middle of a recession.
The people who carried the heaviest burden included the legendary Dr Stuart Ditchek, who has long experience combining medical professionalism (among other things, he is one of America’s top experts in familial dysautonomia, with a reputation so strong that parents will simply not entrust their children to anyone else) with a manner with children more typically seen in slightly manic camp head counselors. Other veterans of caring for the chronically ill included Howie Kafka, a veteran Hatzolah figure, and a dedicated and talented head nurse Sara Miriam Kaplan. Coordinating every step of the program while stopping to address the small and great needs of absolutely every individual with patience and concern, was my son Ari, known to the campers as Double A.
The children (using the term loosely – they ranged in age from six to twenty-six) suffer from an alphabet soup of devastating conditions: CP, CF, MD, FD. Some thirty different diagnoses were scattered through the group. There were kids who had no sight, or no ability to eat, or no arms, or no legs, or no face, or limbs in the wrong place, or probable life spans measured in units so short that no one wanted to utter the words.
It is impossible to describe the feeling of inadequacy I had davening shacharis with some of them the first morning. (The program is run completely frum, but there are no demands placed upon the kids – other than participating in a complete Shabbos – many of whom come from completely secular backgrounds.) Sitting next to a chassidishe boy confined to a wheelchair who davened every word aloud in a hauntingly sweet, sweet voice, I cringed as he read
. הפכת מספדי למחול לי
While he did not lament, he would never dance without a miracle. Another recited ashrei yoshvei veisecha with great simcha, oblivious to the irony of just how long he has been sitting without getting up. Kids slouched in their chairs like rag dolls because muscular dystrophy has weakened their muscles to the point that they can no longer hold their frames – but davening nonetheless. Later I would see the look of absolute joy on the face of a young man as he sang Shabbos kodesh in a state of ecstasy. He would never see his own facial expression because of his blindness, but he must have seen the malachim who came to join in the Shabbos. The raspy voice of the boy mentioned above would irritate a person unacquainted with his condition; his loud and confident davening certainly delighted those malachim.
Parents are attracted to the program because it both gives them a respite from the 24/7 care they have been providing in some cases since birth, as well as an opportunity for their children to share in joys they never thought possible. The kids are baited by the impressive list of theme parks. These, explained my son, may look good on the evening news, but they are not what provide the real boast to the kids. The silly, goofy camp-style interactive games that are inserted into the program seemingly as fillers, actually do the most good. They allow the kids to be the center of attention, to be stars, unselfconsciously because in this crowd, their disabilities are normal. In their interactions, they make friendships that then continue in the months ahead, lifting them out of their existential loneliness.
They want that attention so badly. We might think that they need to divert attention from their special circumstances, but it is not so. They want recognition, without hiding anything about themselves. (One counselor had done similar work in Israel. The first rule they told him was that no one could work in the program unless they had no problem fully looking the kids straight in the face. Too many people can’t make eye contact, or avert their glance after a few uncomfortable moments, or perhaps even worse, cross the street so they will not have to deal with the contact, thinking that the afflicted don’t notice. They do.)
Counselors not only have to deal with sleepless nights (one had to wake up literally every 45 minutes to feed his child) and tend to unusual circumstances (like the counselor I observed preparing nutrition and getting it into his child’s gastric tube while Shamu did his thing a few feet away), they have to be emotionally responsive. They give lots of spontaneous hugs. (The staff creates the atmosphere for this by pointedly giving each other lots of spontaneous hugs, subliminally modeling for the kids.)
Motza’ei Shabbos, the program exploded with joy. Name entertainers had flown in from NY before Shabbos. This is where I witnessed a quadriplegic frum teen dance. He can shake his head, but it was his eyes that danced. He was not an outsider; he was in the center. Five staff people stuffed party favors on and over him, and held his hands and his chair and danced with him. They did not dance for him or around him. Anyone who saw would agree that he was dancing as well.
Somehow, the counselors and staff found a way to include everyone. They didn’t loft Dr D or my son on their shoulders. Instead, they picked up the kids – some even in their wheelchairs – and danced with them.
The change that came over so many of the kids I saw was remarkable. In the space of twenty-four hours, so many came out of self-absorption and semi-depression, and became joyful and animated.
Most people react to encounters like this – quite appropriately – by feeling more appreciative of the things we mention in Birchos HaShachar, the gifts we take for granted – thinking, seeing, walking. This time, I found a different lesson as well. It was the perfect way to begin Elul, the month that we contemplate our shortcomings, our mortality, and just what meaning our lives have as we prepare to beseech Hashem for a year of life. We usually pity children like these, thinking of how limited or even empty their lives must be. When you turn off the pity, however, and give them the opportunity to taste the richness of life, you start to see that they can and do take the same joy in life as everyone else. They become euphoric with some affection, some honor, some novelty and excitement. They appreciate warmth, friendship, and a spontaneous hug. In a word, they find much that is satisfying and good, and much of that overlaps with what the rest of us find satisfying and good.
One of the gedolim of the last generation said, “The greatest beracha in life is life itself.” With a bit of help, these children prove to all of us just how rich a beracha life contains.
[The Kids of Courage website, where many photos of the trip are available, is at kidsoc.org]