It had been more than a year since we last buried a child. And though we all knew it would eventually happen again, it felt like an especially hard blow. When the time came, Special Hope Network had existed in Lusaka, Zambia for close to four years and we had been serving children with intellectual disabilities at our Community Care Centers for almost two. We had developed a model of providing education and therapies that was really making an impact; really changing lives. And yet, we weren’t able to change his.
Joseph arrived at our Community Care Center with his mind and body crippled by a profound incidence of Cerebral Palsy, resulting from complications at birth and compounded by severe acute malnutrition and a seizure disorder that went untreated for years. Joseph was never going to be one of our “success stories.” His death, however, initially felt like a failure in so many ways.
In the developing world, the mortality rate for children with intellectual and developmental disabilities is as high as 80 percent—so increased from the norm that most research assumes these children are being “weeded out.” 90 percent of them will never attend school, and HIV/AIDS and malnutrition rates are markedly high in this demographic. Negative stigma abound, and often these children are hidden away from their society according to the United Nations Enable.
Special Hope Network is working to address these issues. We established our Community Care Centers to meet families in their neighborhoods with the support and encouragement they desperately need. In their two years of operation, Special Hope has seen dramatic improvement in the well-being of children with intellectual disabilities, as well as in the attitudes and outlooks of the parents and caregivers.
So, what do we do with a Joseph? What do we do when the model is not “successful” in the life of a particular child? As the Chief Operations Officer of this organization, I am easily tempted to think this way. I can get caught in the strategies and statistics, and in doing so, I can miss the beauty of a situation like Joseph’s.
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SOURCE: Christianity Today