Face of Tay-Sachs Disease:
Miryam Z. Wahrman, Ph.D.
The Silent Psalms of Our Son by Jonathan Jarashow is a love poem for a baby who never grew up. But it is only part of a story - a story of a family with hopes and dreams for their baby, whose bubble burst when they learned of his devastating disease.
Babies with Tay-Sachs disease appear normal for the first few months of life, then begin to deteriorate, losing mental and physical abilities. In this disease an enzyme, hexosaminidase A (hex A), which normally breaks down lipids in the cells that surround nerve cells, is missing. The lipids accumulate and interfere with cell function, affecting the development of the nervous system. As the disease progresses, the child becomes blind, deaf, unable to swallow, and eventually paralyzed, usually dying by age 3-5.
The Jarashow family lost their son Noah to Tay-Sachs in November 1999. Jonathan Jarashow's book The Silent Psalms of Our Son reveals how this heartbreaking disease can devastate family members, who, after three, or four or five years of watching and waiting for their child to die, search for meaning in that experience. Jarashow and his wife, Judi, cared for Noah in their home, and Jonathan, Judi and young Don Jarashow showered love on little Noah Jarashow for the four short years they had him.
Jarashow seems to be searching to understand, on a spiritual level, the purpose of Noah's time on Earth. Raw emotion pours out of this slim volume, as Jonathan recounts his dreams of Noah's spiritual life. "Before we found out about his condition, Noah was my earthly child for 8 months," confides Jarashow. "During that time I placed so many hopes and dreams in my son. When I look at pictures of him at that age and before, it especially breaks my heart. ... I didn't realize that he had a very short heavenly string attached to him. I try to avoid these pictures at times... for they still break my heart all over again."
Addressing his son, Jarashow reflects, "Of course, on the outside, people only see your physical attributes in this world that you can't walk and talk. They don't see the side of you that runs around, and sits on God's lap in heaven."
It might have been cathartic for the author and his wife to express in writing the searing emotions they lived through. And this book may be helpful for couples with severely handicapped children who are searching for answers to why such a fate had to befall their beloved babies. But the book is limited, as it only hints at the pain of the discovery that their child had Tay-Sachs. The author doesn't admit to anger with God, his desire to reject the truth, his confusion, his despair.
The book paints Noah's brother Don as being full of love for his brother. However, it ignores any conflicting emotions Don might have experienced: impatience, jealousy, the need for a sibling he can grow up with. It does not address Don's devastating sense of loss when Noah dies, or Don's unique childhood experience - as a big brother to a Tay-Sachs baby.
The book fails to address various issues which couples with terminally ill children grapple with. Would the Jarashows dare to have more children? Will they use Tay-Sachs testing to ensure a healthy baby? What conflicts and guilt do they experience in their quest to continue building a family? Will they give their surviving son another sibling he can grow up with? I felt hungry for more from this distraught family. I would have liked to read about their love and their ambivalence, their faith in God and their doubts, their hope and their despair over what was never to be.
Things might have turned out differently if this couple had been tested for Tay-Sachs. Were they never counseled about genetic testing? Was it an oversight on the part of their doctor? Did they simply deny the possibility that it could happen to them? There is an important lesson here for all young Jewish couples; Jewish genetic diseases strike without warning.
You can sense the love which suffuses this little book. The author communicates his message, that any life is a life worth living. There must be a purpose for every life - even one with no apparent purpose. The purpose of Noah's short life may have been to elicit unconditional love from his family. The Jarashows had the opportunity to demonstrate their love for Noah over and over again by providing for his every physical need and communicating with gentle touches and smiles. We did the same for my critically ill mother, who spent almost six months in the hospital at the end of her life. Was there a purpose to my mother's futile struggle and suffering? It gave our family a chance to show our immense love for her in little ways, in ways we never would have dreamed of when she was well. We showed our love by stroking her feet when they hurt, scratching her back, giving her ice chips, and struggling to understand her soundless words and gestures. Like little Noah, she couldn't speak, and everything she needed had to be done for her, even her breathing and eating.
Ironically, little Noah and my mother are both buried on Har Hamenuchot in Jerusalem. I'd like to think that my mother, who taught for over thirty years and adored children, is watching over Noah, smiling and winking at him just as she used to do with babies in shul.
Proceeds from this book benefit Noah's Spark Foundation for terminally ill children. This charity, as well as the Evan Lee Ungerleider Foundation of National Tay-Sachs and Allied Diseases Association (NTSADA), serve as additional vehicles for parents of Tay-Sachs babies to find meaning in their beloved children's short lives.
Noah's Spark Foundation can be reached at (845) 426-7612. The National Tay-Sachs and Allied Diseases Association can be reached at (212) 431-0431.
© 2001 Miryam Z. Wahrman