Publisher's Synopsis
In this memoir about two special children named Hayden and Cameron, a grandmother shares her version of the tragedy which bore into the families of two of her children. Tay Sachs is a rare genetic condition. When both parents are carriers, each child has a 25% of having the disease. The carrier rate for the general population is 1/250. French Canadians, Louisiana Cajuns and Ashkenazi Jews are all considered high risk with a carrier rate of 1/27. In the Lord family, the fathers are identical twins who married women who were roommates in college. None of them knew they were carriers and only Cameron's mother has a mutation that had been seen before. The likelihood of these two brothers marrying carriers and having affected children was 1 in 80,000,000.
As the title implies, this book recognizes the fact that Joy and Sadness are frequently entwined. The pathway that Tay-Sachs takes is neither easy nor smooth. There are so many crises that arise from the disease which involve difficult choices: which treatment to choose, which nourishment should be provided and how to provide it in the most cost effective and comforting way, and many more.
During most of their short, beloved lives, love and joy glowed through the darkness wrought by the sickness. When finally the pain became the dominant force, both families found the courage to follow the infants' dictates as to how they would leave this world. The babies remained at home, still in the arms of the people they knew and loved.
