David’s story began when he was born with a rare mitochondria condition that consisted of uncontrollable seizures, severe cognitive delay, gastrointestinal dysfunction, and autism. His condition resulted in numerous hospitalizations and surgeries, an inability to speak, the need of a gastric tube for daily nutrition, and total assistance with all his personal care. The combination of medical and development disabilities made it difficult for David to participate in social activities with other children or to progress developmentally. It was very difficult to find a recreation or after school program that could properly meet his needs and was willing to accept the many challenges. Aside from family and personal caregivers, David remained isolated in his own world for many years.
Our family life changed dramatically as well. We were a very active and social family that enjoyed spontaneous trips, visiting family and friends, and enjoying all the natural beauty of God’s creation. Unfortunately, that all quickly changed as we spent the first 10 years of David’s life in and out of hospitals across the US seeking answers and treatments for his rapidly declining condition. Social commitments and opportunities quickly disappeared and David’s two older brothers were often left to entertain themselves while his Dad and I provided round the clock monitoring and care.
Ultimately, nothing prepared us for the onslaught of challenges in obtaining care for a medically fragile and developmentally disabled child. Our family and friends wanted to help but did not know how, and we found ourselves questioning every decision in light of how it would affect our young son. Our vocabulary quickly expanded to include such acronyms as ISSP, IEP, ISP, CP, PT, and others like them. Medical and educational professionals offered their expert advice and while well intentioned, often left us feeling inadequate and discouraged as parents. Our world had been turned upside down and we were left wondering how to insure our child would always have the necessary care he required and the happiness that is found through friendship and acceptance.
In spite of his many challenges, David was an incredibly happy child. His face would light up to the sound of classical music. He delighted in riding on the merry-go-round at the mall, being pushed in the swing, or going for long rides in the car. As he grew older, David learned the joy of giving and receiving hugs and eventually discovered the wonders of his own reflection. His laughter was contagious and could put a smile on the face of even the grumpiest. With continuous support and encouragement, he was even learning to follow simple directions and to dress himself.
During the summer of 2009, David experienced a dramatic increase in seizure activity and a significant medical decline. In July, he quietly slipped away from us when the Lord called him home to heaven. Our work at Developmental Enrichment Centers is dedicated to our son and today his memory lives on with every individual we are blessed to serve. Based on our experiences we are committed to support and help parents overcome the unique challenges and obstacles presented in caring for a disabled loved one. We will always feel the emptiness of David’s absence but we also recognize the privilege given us to serve the disabled community.