By Judith Scott; 270 pages. Subtitle: One Family's Triumph Over a Rare Genetic Syndrome.
That subtitle's kind of a cheat. It makes the book sound like a feel-good inspirational ride of crusading parents and cured kids. While Emily, the little girl with Partial Trisomy 13, does fly far from the original dire prognosis, she's still young at the end of the story and still struggling in many areas. Her family doesn't so much beat the syndrome as beat against it and beat themselves up about it. If you're more in the market for commiseration than inspiration, you may appreciate the honesty.
- Deals with a genetic disorder not often written about
- Writing is skillful and compelling
- Honest about the strain special needs can put on a marriage, and on a parent's mental health
- Looks at hard decisions parents sometimes have to make
- Short chapters make for quick reading
- Present tense narration puts a little artifice between reader and story
- If you disagree with some of the decisions this parent makes, those sections will be hard to read
- The consistently great relationships with special-education personnel may read like fantasy to some
- Prologue
- 68 short chapters
- Epilogue
There are all sorts of reasons to read special-needs parenting memoirs. Sometimes you need to be lifted up by a tale of faith and miracles. Sometimes you need to see how much worse things could be. Sometimes it's just nice to know that others have felt the same feelings you have, even the dark scary ones. Always there's the element of thinking of what you would have done differently, for better or worse.
Though Out Came the Sun is not without miracles -- the way that Emily defies all the doctors' expectations, certainly, and also maybe the way most of the medical professionals and educators are helpful and confident and friendly -- the focus here is less on a child's triumph and more on a mother's muddling through. As such, it invites both empathy as you watch the author carry your struggles, and a less charitable looking at certain choices made and thinking, "I would never have done that."
There's something therapeutic about that, and if you're in the mood for following this marathon runner on the bumpy path to accepting life as a special-needs parent, this is an awfully well written and honest book to choose. Emily's disability, Partial Trisomy 13, is so rare many of her doctors have only her to compare her to, and that adds an extra level of interest. The family struggles with both medical and developmental challenges, so there's a lot to relate to.
If your preference in inspirational reading is more in the line of heartwarming than heartaching, with more focus on the child and less on the parents' emotional state, you may find parts of this narrative hard going, even infuriating. Fortunately, the very short chapters make it easy to skim, enjoy the portions that speak to you, and skip over the ones that don't.
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