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. 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.