by Nancy Bailey and Amanda Bailey
Memoirs written by parents about raising children with Down syndrome are not hard to come by. This memoir offers a unique perspective, as it’s written by a sibling rather than a parent, and it centers around an adult with Down syndrome rather than the usual stories about babies and kids with Down syndrome.
At the heart of the story is the relationship between two sisters: Nancy and Amanda. Amanda, a forty-year old woman with Down syndrome, is the youngest of eight children. Among the siblings, she is closest to Nancy, eight years her senior. From the time Amanda was brought home from the hospital with the announcement from their father, “Your new sister is a Mongoloid,” Nancy has doted on Amanda. By the time Amanda is in grade school, most of the other siblings have left home, and their mother, suffering from chronic depression, casts Nancy in the role of Amanda’s main caregiver and playmate.
The North Side of Down covers a period of a couple of (recent) years when all of the siblings are adults, and their aging parents suffer severe medical setbacks that necessitate the adult children to step in. First their mother dies, and within a couple of years their father, Amanda’s legal guardian, also dies. In the midst of heart wrenching grief, old wounds between the siblings are brought to the surface, battle lines are drawn, and a custody battle over Amanda ensues. Sadly, fighting over custody of this intelligent, funny, sarcastic woman with an intellectual disability and health issues of her own appears to have less to do with love than with power struggles within a very dysfunctional family. In many ways Nancy would seem to be the best choice for Amanda’s guardian – they have the closest relationship, and more than the other siblings, Nancy seems to understand Amanda and have her best interests at heart. Unfortunately, Nancy is in the midst of bankruptcy and, as a dog trainer and struggling artist, doesn’t have the financial means to be Amanda’s guardian, so she must pit herself against her family and try to fight for the best achievable arrangement for Amanda.
While this memoir doesn’t center around Down syndrome, it does offer insight into what can happen in a family when guardianship issues concerning an adult with disabilities are not properly dealt with before it’s too late. It also offers insight into the dynamics of a severely dysfunctional family, which, sadly, too many of us can relate to.
This is a self-published book, and I would love to see it get picked up by a publisher. Although it would benefit from professional editing, Nancy is a talented writer, and Amanda’s contributions bring the story more to life. A story with real heart; I definitely recommend it.