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A Penny for our thoughts.
It didn’t help that we had responded to Penny’s diagnosis so differently. Two days after our return from the hospital, Peter finished grieving and he walked outside and never looked back. Penny was his beautiful daughter, and that was that. I trusted him — he had immersed himself in grief and had emerged ready to receive our daughter. He didn’t worry about her future. He didn’t wrestle with the theological questions surrounding Down syndrome. He just loved her.
I wasn’t there yet. I felt too fragile….
— From A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny, by Amy Julia Becker
It was in a forum on Nov. 19 of last year. For seven minutes and 38 seconds, Rick Santorum spoke about the health struggles of his daughter Bella, and his response thereto. The most stunning line was this, after saying that for the first five months of her life he had tried to be “the rock” for his family, the one who didn’t break down and show too much sorrow or grief. But he wasn’t really a rock, he said:
“It was a lie. I decided to not love her like I did because it wouldn’t hurt as much if I lost her…. I had seen her as less of a person because of her disability.” But then, he realized as he held her little finger after she had been resuscitated from a situation where she had completely stopped breathing, he realized his pose was a façade: He loved her fiercely, desperately.
One cannot watch that video and not like Rick Santorum. Similarly, the 3:38 video on Bella on his campaign website is too raw, too honest, to have been scripted, and it is quite moving and inspirational.
“Bella makes us better,” he said. “Some people describe people like Bella as ‘disabled children,’ and I look at her and I look at the joy and the simplicity and the love that she emits, and it’s clear to me that we’re the disabled ones, not her; she’s got it right. She’s got a great and beautiful spirit — one that emits unconditional love, and we can learn a lot from that.”
While Santorum was still campaigning for president, it didn’t seem appropriate to write much about his special-needs daughter, for fear it would look like making her a campaign issue. But as he spoke at appropriate times and places about her, it was striking to see how often he said things very similar to what Amy Julia Becker wrote in A Good and Perfect Gift, quoted above. Becker’s daughter Penny has Down syndrome, or Trisomy 21, which involves an extra 21st chromosome; Bella Santorum has Trisomy 18, also known as Edwards Syndrome, which involves extra material on the 18th chromosome. The two ailments are similar, except that Trisomy 18 is associated with more severe, indeed more life-threatening, medical complications.
Becker’s book is a remarkably candid, wonderfully moving memoir of events during the first two years of Penny’s life. It carries no political agenda, so it merits a light touch when its material is used in the context of a political candidate such as Santorum — but the points to be made here are not political at all, but rather cultural and humane.
Pre-echoing Santorum’s comment about Bella making us better and offering a gift rather than being a burden, Becker wrote (in a letter to her daughter): “When you were first born, I was worried, I didn’t know much about Down syndrome, and I was afraid. I’m not worried anymore. I am proud of you — our smart, funny, beautiful, delightful daughter. Thank you for being in our lives.”
What is striking is how often even the most well-meaning of Becker’s acquaintances say things about Penny that made Penny sound like a terrible burden rather than a joy. Especially frustrating were the times medical professionals seemed to assume that a baby with Down would be a baby not worth having. They also, rather insistently, pressured Becker to have various forms of pre-natal testing when she again became pregnant. Becker’s observations tracked closely with what Santorum said in a famously contentious interview with the clueless Bob Schieffer on Face the Nation.
Here’s what Santorum said: “We’re talking about specifically prenatal testing and specifically amniocentesis, which is a… procedure that creates a risk of miscarriage when you have it and is done for the purpose of identifying maladies of a child in the womb, which in many cases, in fact, most cases, physicians recommend, particularly if there’s a problem, recommend abortion.”
Here are extended passages from Becker’s lovely book:
I turned on NPR as I drove home, and the story was about a new ethics recommendation from the American College of Obstetricians and Gynecologists (“ACOG”). It stated that doctors unwilling to provide abortions had an obligation to refer their patients to another physician who would provide the procedure. In the words of the spokesperson on NPR, “If a physician has a personal belief that deviates from evidence-based standards of care… they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service.” I thought about all the women who were offered prenatal tests to screen for Down syndrome. And I had to wonder how much those tests were really offered care for those women, for those babies. I knew that new medical guidelines — evidence-based standards of care — suggested that all pregnant women, regardless of age, be screened for Trisomy 21. And I knew that studies showed that women who received a prenatal diagnosis of Trisomy 21 terminated their pregnancies the vast majority of the time. Evidence-based standards of care resulted, more often than not, in the elimination of people like Penny from our society. I felt the anger surge. The report came across as so factual, so neutral. But I knew from talking to friends who had children with Down syndrome that the information about that extra chromosome was rarely delivered in a neutral manner….
ACOG had pitted “personal beliefs” against evidence, as if a physician who was unwilling to perform an abortion had defied the evidence about how to care for this woman, this child…. “Evidence-based standards of care” included all the physical problems Penny could face, but not the joy she could bring or the abilities she might have…. “Evidence-based standards of care” didn’t include the reality that all of life is fragile and uncertain, with potential for heartbreak and potential for great delight.
Before the actual text of the book, the publisher printed a series of questions and answers with Becker. One was about pre-natal testing. Here’s what Becker answered:
A man of faith in a godless age is hitting Americans where it hurts.
Mr. and Mrs. American Spectator Reader, let P.J. O’Rourke talk sense to your kids.
In Britain, defending your property can get you life.
It won’t take long for conservatives to scratch this presidential wannabe off their 2008 scorecard.
Was the President done in by the economy, or by the politics of the economy?