I got a little bit of a late start this morning because I could not put the Santorums’ new book on their beloved daughter Bella down last night. It’s a beautiful read. Now almost seven, all medical wisdom said Bella never make it past weeks, certainly not to be celebrating birthday after birthday. In Bella’s Gift: How One Little Girl Transformed Our Family and Inspired a Nation, the Santorums — mom, Karen, father, Rick, and eldest daughter Elizabeth all take turns at chapters — give an honest account of the pain and the joy that comes with the news and reality of a child’s life with Trisomy 18.
The book is all about love — and the pure delivery of it Bella’s life is. Skip 50 Shades this weekend and read this. Life, love, marriage, family, beauty. It’s not politics, it’s about wanting, trying, learning.
And it’s a challenge. The Santorums talk about doctors who wouldn’t even say their youngest’s name . . . about the lethal dose of morphine hospice care left with Karen for her daughter for when the end neared . . . parents have to fight for children with “adverse” diagnoses, as they say. We have to fight for them — by saying their names, and looking into their eyes, loving and learning, acknowledging gifts.
Karen writes at one point, in a brutally honest rendition of Bella’s first days:
Outside the world kept turning, everyone moving in his or her own direction. I now realize most people scatter in times of true suffering, overwhelmed and awkward when words fail them as they attempt to console. They’re right. Often, words are not enough. But I will never forget those who were there to sit with me, cry with me, and share the silence. Yes, words can be inadequate, but I think it’s worse not to try.
And the former senator from Pennsylvania writes at one point in the book: When it comes to medical professionals and children in the womb with severe mental or physical disabilities, the soft bigotry of low expectations for the disabled is often deadly.
The culture of death is everywhere, he writes. But hastens to add it’s not that
the hospitals are crawling with evil mercy killers, but rather, with many people who value human life according to what a person is able to do, rather than on how he or she can love and be loved. 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 a gift, as the Santorums share theirs. It’s a profile in love and the courage to be vulnerable — which those who need us most teach best.