Friday, October 18, 2013
A Memoir of Motherhood, Disability, & Discovery
By Rachel Adams
Published by Yale University Press, September 2013
Rachel Adams is an academic, a professor at Columbia University and a literary critic, an intelligent, well-educated woman who prides herself on being an advocate of women's reproductive freedom. Her world revolves around her husband, her two year old son and her job - but her world is turned upside down and inside out when she finds that her newborn second son, Henry, has Down Syndrome.....
This is not an easy book to read; intertwined with her shock at Henry's diagnosis is her raw grief for the "perfect" second son she will never have and disbelieving anger at the way Henry's tentative diagnosis is handled by the medical staff.who care for her. We learn of her sister's decision to abort her own Trisomy 13 baby, talking of the baby as "it" and castigating the "hostile" anti-abortion protesters outside the clinic where the procedure took place over several distressing visits over successive days - uncomfortable reading to be sure.
Like a mother tigress, Rachel fights to ensure that Henry gets as much help and intervention from dedicated professionals as possible, even while still a tiny baby, determined to give her beautiful and beloved son the best possible start in life; we meet baby nurses, speech therapists, play therapists, physiotherapists, nursery staff, nannies and medical professionals and share their triumphs and joy as Henry develops and thrives.
There is a darker undercurrent, though: Rachel describes her feelings about her amniocentesis with her older son and her decision not to have one when pregnant with Henry; the casual and almost callous attitude of some medical professionals who see Henry as only as a Down baby and not a precious child; society's ambivalent attitude towards people with disabilities, trying to make the world more accessible to disabled people yet simultaneously implementing and refining testing procedures to make sure that "disabled" children like Henry are identified in the womb and prevented from even being born alive. It is a complex world indeed.
Henry has changed the lives of their whole family and this is a positive and hopeful book which has just as much laughter, love and enthusiasm as it has sadness and sobering discussion about the problems of parenting a child with special needs.