Our Down syndrome organization asked me if I’d like to do some book reviews on recent additions to their library, and I happily agreed—as if I needed a reason to read books on Down syndrome anyway! The first one I read was An Uncomplicated Life by Paul Daugherty (available here).
I was really interested to read this book, and I took my time with it, because I wanted to soak it all in. Paul Daugherty is a sports columnist for the Cincinnati Enquirer, and in 1989 his daughter Jillian was born with Down syndrome. Since then, Jillian has gone on to live the kind of life I hope to see Sam have someday—full, fulfilled, independent, and happy. So I was interested to read about her from her parent’s perspective. (I’d love to read about her from her perspective, too, but the reality is that not many adults with Down syndrome have described their lives in writing, so it’s harder to find things written by the people themselves. And besides, as a parent, I do find myself very interested in the parents’ perspective.)
A line on the book jacket immediately grabbed me: “Jillian was born October 17, 1989. It was the last bad day.” That line is provocative and attention-getting—you don’t want to think of your child’s birth as a bad day, but the reality is that when you receive a birth diagnosis, it is a hard day. But then you move on and look back and realize it shouldn’t have been so hard—only of course you didn’t know that at the time. So I immediately recognized exactly what Daugherty meant when he called it the “last bad day.”
At first, I was a bit troubled when Daugherty kept referring to he and his wife attempting to “build a better Jillian.” I understood their determination to help Jillian maximize her potential in a world that demands people achieve certain levels of what we call “success,” but I hated the image of Jillian as (a) some sort of robot, and (b) someone who needed to be “better.” Because I never feel that way about Sam—in all my efforts to help him, I never feel it’s because he needs to be better; it’s because I want to make things easier for him. He’s always going to have to work harder than the average person, but I’d like to minimize that as much as possible for him—I want him to work hard because I want both of my kids to work hard, but I don’t want things to be unmanageably hard for him, if that makes sense.
But I worked past my annoyance at the phrase “build a better Jillian” and reminded myself that as much as I didn’t care for the phrase, her parents seemed to have the exact same goals I do—to help their child find her way in the world and live a happy, fulfilling, independent life.
At times the book was hard to read because I know it probably represents our future. When the author talked about Jillian being in an inclusive educational setting but not really being included by her typically developing peers, it saddened me. I know that is probably true in many cases, and the author was careful to explain why it was so—the other kids weren’t cruel to Jillian, but because of her delayed development, her same-age peers just weren’t at the same place as her; they had different interests. But still, it made me a little sad to read. And reading about the homework struggles…oh, the homework struggles! Well, we get those with our 46-chromosomed child already, so it’s not like we’re strangers to them. But it sounds like it becomes a whole new ballgame when you’re talking about a child who wants to learn but who has to work so, so much harder at it. I can’t say I’m particularly looking forward to spending hours on five spelling words, as the author describes with Jillian.
But mostly, the book made me happy. It was clear throughout the book just how much of a positive effect Jillian has had on the lives of everyone around her, and honestly, she just sounds like a super cool lady—the kind of person I’d love to go hang out and get coffee with. She sounds witty and funny and interesting and kind. Seems to me her family and friends are pretty lucky to have her in their lives—and her father’s words certainly seem to imply that.
For people with young children with Down syndrome, I think this is a very good book—not as a reference, but just as a “good read.” It’s well written, and it’s inspiring without being sappy or overwrought—perhaps because what is most inspiring is just Jillian herself, not any heroic undertakings by her parents. Paul Daugherty’s writing style is as matter-of-fact as his daughter seems to be, and I find it enjoyable to read stories of adults with Down syndrome that actually focus on the real person and the day-to-day reality, rather than honing in on some bit of feel-good fluff, as some of the “inspirational” pieces about people with disabilities tend to do.
Up next, will it be Count It All Joy, by Kathleen Murray; 321 Down Street, by Keven Card; or Life With Charley, by Sherry Palmer? Hmmm, you’ll have to tune in back here to find out!