Having a child with a disability is like having a life coach you didn’t ask for. You realize that perspective is a blessing that ‘s available to anyone who seeks it. Or has it forced upon him. The miracle of an imperfect child is the light she casts on your own imperfections. After a time, she will teach you far more than you will teach her, and you will discover that “normal” comes in a sliding scale.
The words “miracle” and “blessing” in the same paragraph may raise red flags for some readers, but An Uncomplicated Life is not a sentimental story about saintlike parents and an angelic child. It’s a father’s honest, heartfelt, and nuanced account of “building a better Jillian” — and in the process, building a better Paul Daugherty. (“No one has ever accused me of being nice,” he claims.)
The day Paul and Kerry Daugherty’s daughter, Jillian, was born was “the last bad day” in the Daugherty family’s life. Paul, a sports columnist for the Cincinnati Post, was covering the World Series in San Francisco when his wife called with the happy news that Jillian had arrived. Paul and Kerry experienced the “dark kaleidoscope of human emotions” that day when they learned that Jillian had Down Syndrome.
The Daughertys determined before even leaving the hospital that “Jillian’s potential would not be tethered to anyone’s preconceptions.” Their mantras become “Expect: Don’t Accept”, “Nothing is Definite”, and “Let Jillian be Jillian.” When Paul questions their decision to fight the school system to keep Jillian in a traditional classroom, wondering if they were expecting too much of their daughter, Kerry reminds him of their guiding principles.
Kerry, ironically, is an employee of the school district that the Daughertys battle for years in order to ensure that Jillian receives the education to which she’s entitled. Readers will sympathize with Kerry and Paul as they spend Jillian’s high school years trying to “locate the elusive, happy middle between learning and learning under budget.”
Jillian brings laughter into her family’s life, and her father includes many charming and funny anecdotes that illustrate her headstrong and independent nature. Daugherty, a journalist who cranks out newspaper articles and columns every day, is a talented storyteller, and his anecdotes about Jillian’s escapades and triumphs are a joy to read. Daugherty takes pains to portray Jillian as an individual, not a stereotypical Down’s syndrome child. Often, Daugherty writes, people are patronizing and saccharine in their descriptions of Jillian, as if she were a “golden retriever”.
There’s an edge to Paul Daugherty, and the Daugherty household is like any other household — far from idyllic. The Daughertys’ approach has required sacrifices, and Paul — who can be a harsh self-critic — is frank about the resentment he sometimes feels. He knows, for example, that his dream of retiring to play golf in South Carolina probably won’t happen.
Expanding Jillian’s dreams means constricting our own. This isn’t a complaint. It’s not bitterness. It’s just a fact. Her goals tug at ours. They are not compatible. Our lives are less separable than the lives of typical parents and their grown children . . . Sometimes, I resent that.
Daugherty is also candid about the pain he and Kerry feel when Jillian is excluded from school or social activities. Although she is never treated unkindly, the fact remains that she is different from her peers. Jillian joins the JV dance team, and is able, for the most part, to keep up with her peers. But is she really part of the team?
Jillian’s dance teammates treated her like the rest of typical peers did: Arms-length pleasant. They didn’t mind having her on the team. But I don’t think they relished it ether. They included her in team functions . . . After practice or games they went their ways, and Jillian went home. We didn’t know if the girls hung out together after practice. We never asked.
Daugherty doesn’t dwell on his occasional feelings of anger or frustration, but chooses to focus on the enormous gifts Jillian has brought to his family. Although his family’s story is unique, any parent will identify with his experiences. All parents learn from their children. Jillian’s life may be less complicated than most others — including the lives of her parents and older brother– but its clarity of purpose inspires those she comes in contact with “to do better, to be better”.
In the bookstore, I’m frequently asked to recommend “feel-good” books that are “uplifting”. I’m often at a loss, since I find most books that fit that description to be unbearably hokey. For whatever reason, I gravitate toward books about war, family dysfunction, illness, and tragic events of all kinds. So it was truly a pleasure for me to read a well-written book that inspired me and made me think.
To read more reviews of An Uncomplicated Life, check out TLC Book Tours.
Watch the Youtube book trailer, with photos of Jillian and her family.