Growing Pains

In the beginning, my parents' energies were focused on keeping John healthy. His head was so large and grew so fast that he was brought to the doctor's office frequently for check ups and head measurement. I recall my parents going from doctor to doctor, looking for someone who would understand and approve of their choice to keep Johnny (as we called him then) at home and who would offer them some hope that he might be okay and that our family might be okay, even though we faced a special challenge. I'm sure the growth of his head was really frightening, especially since they had no yardstick by which to measure the rate of change -- there wasn't anyone quite like him to be found in the general population! They did eventually find a terrific doctor and my mother kept careful records of Johnny's progress, both physical and intellectual -- it was slow, but it was steady and our doctor somehow had the wisdom to understand that progress, rather than meeting "age appropriate timetables" would be the goal for Johnny.

My mother made him a special headrest so she could put him down during the day without worrying that the weight of his head would break his neck. She used a block of perforated foam from which she carefully removed pieces, forming a hole into which the back of his could rest. She placed this foam into a car seat, belted Johnny in and placed the car seat on the floor where my sisters and I could explore him and play with him. He thus became our baby and we delighted in making him laugh, feeding him 'tookies' and sharing our toys with him. In retrospect, I think those early years may have been the easiest, before he experienced the pain of having his friends grow up and away from him as they matured in ways that he did not. There were many times when I watched him stand in the driveway and stare as yet another friend learned how to ride a bike and left him behind to play with other more "able" kids. True, he always had his sisters, and, eventually a family with 4 wonderful boys moved in across the street and became a permanent part of his circle of love.