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Jewish World Review Jan. 4, 2000/ 25 Teves, 5760

Marianne M. Jennings

Marianne M. Jennings
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Struggling mightily amidst the comfort -- ON DECEMBER 26, 1999, Richard and Dawn Kelso drove their 10-year-old son Steven, a medically fragile child with mental retardation and seizures, to the duPont Hospital for Children where they left him with his toys, diapers, and complete medical file. The Kelsos were booked the next day on charges of abandonment and conspiracy. After a night in jail, they were released pending a March trial and ordered to have no contact with Steven.

Decrying of the Kelsos has been loud and unequivocal. If ever there was a time when the folderol of moral relativism should reign, this would be it.

Yet the social workers and state child advocates stand ready with knee-jerk condemnations and a prosecution. Social agencies return children to single mothers who have served time and have yet to conquer their demons of addiction yet here prosecute parents who made one mistake in a decade of loving care. The Kelsos succumbed in a moment of despair, a despair that deserves exploration.

In the support world for children with disabilities, Steven is an orphan of causes. Nouveau impairments such as ADD have school programs, treatments, plenty of media coverage and boundless sympathy for long-suffering parents.

Other impairments attract star power such as muscular dystrophy and Jerry Lewis or Mary Tyler Moore and diabetes. Children with AIDS have innumerable lapels of red ribbons and the support of the late wife of either Starsky or Hutch. Children with cancer have cards and Make-A-Wish foundation. A child who requires an organ transplant can mobilize a community.

Painful to look at except through the eyes of love, Steven and other children like him have no hope of a cure and hence no stars or fund-raisers. Medical advances have facilitated the physical aging of infants who perished in earlier times. A 10-year-old in diapers with the mental development of an infant will never be a poster child. Family gives up after the parents' shock subsides. Visitors stop coming after age 3. Pediatric nurses are hard to come by. Over the Christmas holidays, the Kelsos had no nurses and were long past the time of help from family and friends. Sleep deprived, overwhelmed with the demands of feedings, ventilators, medications, and with backs aching from lifting, the Kelsos threw up the white flag and surrendered their son to an institution.

My heart cannot condemn the Kelsos because I have walked in their dog-tired shoes. For the past 13 years, my husband and I have cared for our child Claire who has problems nearly identical to Steven's. Claire's daily bath should be filmed for America's Funniest Home Videos. Picture a woman in a Sam's Club employee black back brace giving a bath to a 65-pound mosquito -- appendages everywhere and no real cooperation. My sister-in-law, who has her own human mosquito with similar problems, has inventively purchased a mechanic's hoist to lift her daughter in for bathing. We are the Teamster mothers.

This parenting is not for the faint-hearted. Imagine newborn infant sleepless nights for 13 years or do a fast computation of the number of diapers changed in 13 years. Your charge may never give you so much as a smile in return, although you can be assured fright when a grand mal seizes the moment or hour.

You can't place your child in an institution because horror stories of molestations of innocents who cannot speak abound. So, you keep your Baby Huey with you. You will never have a family vacation and a trip to the movies requires a nurse. Teenage babysitters with hair Phyllis Diller used to build a comedy career plus Crayola color tossed in it have no feeding tube skills.

There is a nation-wide shortage of home-care nurses and those you painstakingly train burn out quickly. Even if these obstacles were overcome, there is the matter of cost. Your insurance slips away and so will your income.

My husband and I have been accused of being the same person for no one can recall us ever being together in the same room. We go to wedding receptions in shifts and ball games by innings. When Mrs. Clinton said during the 1996 campaign that she and the president were thinking of adopting a special needs child, I howled. Good luck trying to get a nurse in D.C. on inauguration night.

These forsaken children bring long nights where you lie awake, hanging onto every inhale and exhale to assure yourself that your not-so-little charge has not slipped the surly bonds of her challenged existence. The fatigue is permanent, the stress unfathomable and the isolation maddening.

The Kelsos were in Pennsylvania when they snapped and I only wish I could have been there to take a shift with Steven. The Kelsos just forgot who Steven is. In the wee hours of respiratory distress, you see something in the eyes of these forgotten children beyond the comprehension of a shallow world. You realize that you are inches from a soul who has never succumbed to the ugliness of misdeed, never lost the innocence present at her Apgar score, and, indeed, despite her teen status, never once talked back to you.

These angels extract a fee for their radiance. They command patience and endurance. In those endless nights, the Kelsos asked "Why us?" Our "Why us?" has evolved to "Why were we given this spiritual feast of endurance while the rest of the world starves in such comfort?"

G-d bless Mr. and Mrs. Kelso, help them as they struggle, but, please, don't prosecute them for one lapse with their challenging angel.

JWR contributor Marianne M. Jennings is a professor of legal and ethical studies at Arizona State University. Send your comments by clicking here.


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©1999, Marianne M. Jennings