Elizabeth Santorum was 17 years old when her sister Bella was born. In a new book, "Bella's Gift," that she wrote with her parents, Rick and Karen, she reflects on the uninformed view of love that she had before her youngest sister taught her something more.
Santorum's last name is no doubt familiar to you. But this book is not just another reputation-burnishing tome from a perennial presidential candidate. It's about the love of family and what a difference it can make. This one isn't about winning and losing campaigns but life, death and the real, hard work of love.
"My shallow understanding of love was challenged and deepened when Bella was born and diagnosed with Trisomy 18. I assumed that my little sister would never be able to love me in a way that was familiar to me. We would never share clothes, talk about her crushes, or paint each other's nails. I only saw dependency, not reciprocity," Elizabeth writes.
"I wanted to love her," Elizabeth remembers in the book, "but I did not know how. Honestly, I wanted her to be able to love me too. I was blind, selfish, and afraid. Yet, when I held Bella for the first time, I saw her fragility, and, with it, her perfection."
Before Bella was born, Trisomy 18 was a likely possibility for the Santorums' unborn child. Once confirmed, Karen, a nurse, knew the stats. "Of the 10 percent of babies with Trisomy 18 who survive birth, 90 percent don't make it to their first birthday. The prognosis was terrifyingly bleak; the odds were stacked against her. My little girl, my Bella, had an extra eighteenth chromosome in every cell of her body, making a genetic code doctors call 'incompatible with life.' Lungs shutting down, holes in her heart, kidney problems, and severe intellectual disability were horrors we should expect."
That girl who seemed doomed is now almost seven years old.
While some doctors were wonderful -- the book is in part an effort to thank them -- others didn't expect much for Bella. One advised: "I don't know why you would want to do anything. You have to let her go. Statistically, there's no hope here." When Bella defied the odds and was still alive seven days later, the same doctor advised the Santorums not to "grow attached to the baby."
As Bella's father puts it: "We had to fight for appropriate life-sustaining care ... Bella, like so many other people with severe disabilities, can't 'do,' but she is loved, and we are especially blessed that she can love. What is more valuable than that?"
"Bella's Gift" is the story of the frightening, painful, loving, joyful journey undertaken by the Santorum family. They wrote it as an encouragement for other families facing some of the same obstacles, as a wake-up call to a culture that all too often sees people in terms of utility and as a testament and testimony to faith, hope and love.
Karen quotes a geneticist, who after being honest about the statistics surrounding her daughter's condition, added, "There is hope." He "leaned forward in his chair, and told us what we desperately needed to hear: 'Bella will write her own book, and I hope it is a good one.'"
And so it is, as Bella keeps writing. In her vulnerability, she helps restore some innocence to our lives, helping us see that giving and receiving love is what we're made for, and that we should settle for and insist on nothing less. With every look of love, we live.
That's not a political slogan, but a prescription for transcendence. And love -- nurtured in families even in the most difficult circumstances -- can lift even politics.
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