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The Disability and the Call

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Raising a Rare Girl is the true story of a family's journey with their daughter who was diagnosed with a rare disease and what they learned along the way. 

Heather Lanier followed every bit of advice she could find during her pregnancy to ensure that she would give birth to the perfect child. After Fiona was born, Lanier and her husband experienced a difficult surprise. Eventually Fiona was diagnosed with Wolf-Hirschhorn syndrome, a rare and seriously debilitating syndrome. 

When Lanier hears her preacher declare, “You know you need to die to the self when not getting what you want causes you distress,” (105) she recognizes her calling: “I had to die to some version of myself, the desperate, clinging, distraught version who wanted what her child was not.” (106)

And there we have the central heartbeat of one of the most compelling memoirs I have ever read: a description of a young mother’s spiritual formation as she learns to walk with her seriously disabled newborn daughter. 

Why is it so compelling?

First, she walks us through the first years of her daughter’s life with both intensity of feeling and just enough emotional distance to avoid sentimentality and narcissism. Her writing is so fluid and evocative that the reader travels with her as a close and trusted companion. Lanier quickly develops a remarkable intuition for distinguishing those friends, acquaintances and care workers who “get it” from those who don’t; I think every disabled person and family member knows exactly what this means.

For example, after a doctor’s visit when she discovers that she knows much more than he does, she concludes, "This loneliness created a significant chunk of my grief" (267). Conversely, her joy abounds when she encounters folks overflowing with practical wisdom, empathy, and helpful honesty. 

Second, Rare Girl seamlessly weaves within its first person narrative pearls of social and historical insight concerning the place of disability in society. She traces the rise of the reality of competitive striving for “super-babies” (7ff.), the concept of “normalcy” (150ff.), the “deficit perspective” which flows from the bell curve (178f.), and many more. Each of these pearls is described concisely and organically, so that the reader understands it just enough to allow it to find its place in the continuing narrative. I found these bits fascinating; each one added another layer to deepen the story.  

Finally, Lanier’s memoir overflows with spiritual formation wisdom. Together with her Episcopalian deacon husband Justin (who does seem a bit too ideal), their faith walk deepens as they engage the joy and suffering in delightfully complementary ways. The book’s closing sentences flow from the call to die that she had heard from her preacher:

The point of life isn’t to avoid all suffering...The belief in the virtue of the “happy” and suffering-free life sterilizes and shrinks us, minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy...

My daughter has given me a thousand portraits of grief and a thousand portraits of joy. I hurt, I long, I exalt, I rejoice. Loving my daughter tenderizes me, makes me more human. And yes my chest sometimes aches from this work. But the ache in my chest is a cousin of joy. (275-6).

I said to Evelyn my wife, “We should give this book to everyone we know who has a disabled child.” She replied, “No, everyone should read this book.”

Of course, she was right. Raising a Rare Girl is a rich testament to truth, hope, courage, and fortitude.

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