Bella's Gift: The Santorum Family's Unlikely Hero

NORTHERN VIRGINIA -- When you mention the name Rick Santorum, social conservatives see a former senator and presidential candidate who has been a hero on the cultural issues of the day.

But in the Santorum household, Rick isn't the hero at all. It's actually their 6-year-old daughter Bella.

Doctors didn't think she'd make it, but she's proved them wrong. It is a story of hope, love and the belief that every person matters. Bella has been a gift to the entire Santorum family.

"She's all about love, massive amounts of love and joy," Karen Santorum told CBN News from her Virginia home.

Bella was born with Trisomy 18, a rare genetic condition. Only 10 percent of babies survive, and of those survivors, only 10 percent make it to their first birthday.

Doctors told Rick and Karen Santorum that Bella's condition was "incompatible with life."  But someone should tell that to Bella because she turns 7 years old next month.

"She's just beautiful, vulnerable, dependent," Rick Santorum told CBN News. "Just completely dependent on us."

Bella's Gift

The Santorums have written a deeply personal book about their journey of caring for a special needs child.  Along the way, Bella taught all of them some very special lessons. The book is called Bella's Gift.

Karen Santorum explains what that gift is.

"She taught so many people how to love better, love and serve Christ better, live in the moment, how to treasure each and every day, how to focus on what is most important in life and to celebrate each and every life," Karen told CBN News.

"She reminds us that every person matters, and we say she's a great teacher of souls because she really is," she said.

One lesson went to their oldest daughter Elizabeth, who also wrote part of the book. She initially struggled with the thought of losing a relationship with a younger sister.

"Bella taught me that love isn't about what someone can do for you," Elizabeth Santorum told CBN News. "It's about giving to the beloved. It's about selflessness."

"…I remember holding her for the first time and all of this was internal at that point and I really just saw a vulnerability and I thought, 'Gosh, that is how my Lord looks at me.' He sees all of us as vulnerable, as totally unable to do anything without Him or His love and Bella's looking at me and I thought, 'just love me,'" she said.

There's no doubt Bella is thoroughly loved -- not just by her family, but also by people she's never met. During Rick Santorum's 2012 presidential campaign, supporters came to rallies with Bella signs. 

Through the Valley

Still, the family felt a desperate need and Karen Santorum says help came from leaning on the Lord and his Word, especially the 23rd Psalm.

"It's such a powerful image because when any parent gets a bad diagnosis it's crushing and heartbreaking and it's a very hard and emotional time," she told CBN News.

"The beautiful thing is that when you have the Lord there and you're going through a really hard time, it's the most beautiful thing to know that He is there with you, bringing you through out of this dark valley and giving you the strength for this journey," she said.

And they needed that strength, especially for their marriage. Many couples with special needs children end up divorced.

"You have moments where you may feel differently about care, decisions, where to go, what hospital to go to, lots of different things. But in the end you forgive, you heal and you know that you are in this together," Karen Santorum said.

Her husband says there is a marriage lesson taught through Bella.

"Here's this little vessel Christ sent to us to teach us what He is trying to teach us, which is to give of yourself fully and completely, not to just this little girl but to each other in marriage," he explained, "because that's what marriage is about. It's about selfless love."

"The reason marriages break up in America is because we go in there with the expectation that marriage is about what's for you, as oppose to what you can give, as oppose to what you receive," he said.

'It Will Get Better'

The Santorums hope this book helps other parents with special needs children, to let them know it's going to be okay.

"You've been thrown into a sea of confusion, a real heartbreak," Karen Santorum said. "But I promise you it will get better. You have more strength than you think and you take one day at a time. Sometimes you are literally living moment to moment."

And the Santorums' thank God for that strength, patience and knowledge that their little girl was worth it all.

"His plan, as unwelcome as it can be, is in fact the perfect plan," Rick Santorum said. "I would say that Bella was unwelcome. I didn't want a child with Trisomy 18, but if you ask Karen or I if we would trade Bella for anything, absolutely not."