The birth of a multi-handicapped child frquently creates a series of unexpected problems for the extended family constellation. This article focuses on the personal responses of a father as he discovers, experiences, and accepts the trauma associated with complex medical interventions designed to preserve the precarious existence of a handicapped child. As the medical procedures ultimately prove to be ineffectual, the impact of the child's death upon the immediate family also is traced in a highly personal manner. Throughout this chronicle, the meaning of pain and love are intertwined in a deepening understanding and appreciation of life.
When Jan and I first learned that we would have another child, we were both overjoyed. At the time of conception, my wife was 34 and I was 37. Given the fact that both of us had a family history of uneventful births, we did not even consider the possibility of having an amniocentesis. Of course, this procedure is designed to let expectant. parents know whether their unborn child has genetic defects which can be traced to chromosomal abnormalities. As we had practiced our Lamaze breathing techniques quite carefully, we enjoyed the beginning phase of labor. Jan would not say it that way, for any woman who has been in labor knows that it is both a joy and a tribulation. Anyway, I felt a sense of excitement, personal significance, and control vis a vis the anticipated birth of our baby.