Read This: Road Map to Holland

Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome by Jennifer Graf Groneberg

One of my greatest fears when I was pregnant, besides having another miscarriage, was that I would receive amnio results that would deliver devastating news. Groneberg didn’t get the amnio because she was pregnant with twins and two amniotic sacs meant double the risk of miscarriage. So after having her twin boys seven weeks premature, she found out that one of her boys had Down Syndrome. Okay, I’m going to repeat myself here: twins, premie, Down Syndrome, as if any one of those things was not life changing, challenging, or scary enough.

Road Map follows Groneberg as she tries to get her bearings. She is honest about her own prejudices, her sadness and sense of loss, and her search to figure out what it will mean for her and her family that Avery has Down Syndrome. Readers get to travel with her through the Down Syndrome literature, doctor’s appointments, extended family and friend’s reactions. We watch Groneberg decide that she can’t participate in a run to benefit a women’s clinic that performs abortions after discovering that “92 percent of women who receive a prenatal diagnosis of Down Syndrome terminate the pregnancy” (130). She writes that she takes “the termination statistic personally” because Avery is the child nine out of ten of these women would not have had (130). Yet, she shares her struggle to want the child that she might not have had if she’d been given a choice. By the time she enumerates Brian Skotko’s seven recommendations for delivering a diagnosis of Down Syndrome, Groneberg has drawn a clear enough map for me to have lost my own bearings, to reconsider a question I believed I’d answered for myself a long time ago.