Raising a Rare Girl: A Review

Heather Lanier’s Raising a Rare Girl was a treat and a surprise. From the opening sentence — ‘When I was pregnant, I tried to make a SuperBaby.’ — to one of the last — ‘Fiona, with her broad grin, has brought me again and again back to awe.’ I was completely hooked. I’d read that the book dealt with Lanier’s firstborn daughter Fiona, who was diagnosed with Wolf-Hirschhorn syndrome, a rare disorder caused by a chromosomal deletion, which results in distinct facial features, intellectual disability, and difficulty swallowing. In short, a birth ‘defect.’

So what I’d expected was a tear-jerker, an exploration of a mother’s despair at having given birth to a child less than perfect, one with physical and mental impairments. Raising a Rare Girl is not that book. Emotionally wrenching, yes. But a tear-jerker? No. Instead Lanier, a poet and academic who teaches at Rowan University and whose husband Justin is an Episcopal priest, critiques ‘normalism’ both sociologically and spiritually.

From the start, the medical profession expresses pity and a certain revulsion for Lanier’s daughter. There is the pediatrician who dispassionately identifies Fiona’s physical abnormalities — wide-set eyes, heart murmur, Y-shaped butt crease — then concludes that the child has a syndrome of some sort. And there is the other doctor who explains the syndrome as either ‘bad seed or bad soil.’ The worst, however, is the neurologist who “wonders aloud whether a child like [Fiona] can be ethically killed.” (p. 259)

Although the physical and occupational therapists who work with Fiona initially are a bit more compassionate, they offer little encouragement that the girl will ever walk or talk and subtly — or perhaps not so subtly — suggest that Fiona’s life, when compared to that of an able-bodied child, has little value.

What sustains Lanier throughout these first few months of Fiona’s life is her husband’s spiritual practice. Not only is Justin an Episcopal priest, he is also a Zen practitioner. At one point, when Lanier points out that Fiona may never walk, may never talk, Justin responds in the affirmative, but then adds enthusiastically, “She’s sentient….She’s capable of enlightenment.” (p. 130) In other words, Fiona’s life, in and of itself, has value.

I loved Raising a Rare Girl. On the one hand, the book was emotionally satisfying. As a mother and grandmother, my heart went out to Lanier, and I empathized with the difficulty she experienced trying to battle the medical profession on behalf of her daughter. I found myself wondering what I would have done in those circumstance. On the other hand, the book was intellectually satisfying. I’d never heard of Wolf-Hirschhorn syndrome (it’s very rare), and I liked learning about it although I did need to Google some of the more arcane details of the syndrome.

Finally, Raising a Rare Girl provided an intimate look into how faith and spiritual belief can nurture a person through difficult circumstances and enable growth and acceptance.

I can’t recommend this book strongly enough. Read it. Discuss it. Pass it on.

Originally published: From My Bookshelf to Yours, Rio Rancho Observer, January 24, 2021.