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  PRAISE FOR Bella’s Gift

  “Life takes sudden turns. The horizon brings unexpected storms. The road we walk is prone to go from smooth to rocky in a matter of steps. No one is spared the difficult path. Rick and Karen Santorum weren’t. The birth of their daughter Bella was a birth into a life they never asked to enter. Their faith was tested, their futures were rerouted. And, as a result of it all, they are different people. You know the Santorums as public figures in the halls of Congress and on the trails of a presidential campaign. You are about to know them as parents of a special girl. Their struggles, fears, faith, and fortitude—it’s all in these pages. I urge you to read this book. Life takes sudden turns for all of us. And we need wisdom from a family who has kept their balance and stayed on the road.”

  — Max Lucado, pastor and bestselling author of Before Amen

  “We love the Santorum family and the way they love children like God loves children. Rick championed the bill to end partial birth abortion in America. The Santorum family has tirelessly fought to return our nation back to the Christian values our country was founded upon. Bella’s Gift will inspire families and marriages to draw close to God through the joys and the hard times of life.”

  — Jim Bob and Michelle Duggar, parents on TLC’s 19 Kids & Counting

  “I have gotten to know Rick, Karen, and their family really, really well over the years. This book is a love story from two parents who walk the walk as husband and wife, father and mother. In typical Santorum style, they pull no punches, but they will also pull at your heart and your soul.”

  — Sean Hannity, television and radio host, author, and political commentator

  “One of the joys of being alive is to see love in action and the indelible mark it leaves on the world. Karen and Rick Santorum have written the kind of extraordinary book about their daughter with special needs that moves the heart and stays in the memory.”

  — Archbishop Charles Chaput

  “The radiant truth about special-needs children, such as the Santorums’ Bella, is that they give to those around them something that we all need. This gift, that suffuses every page of this marvelous book, is the reminder that every life is sanctified by the capacity to receive and respond to love.”

  — George F. Will, syndicated columnist

  “Bella’s father was a Fox News Contributor so I have known about this little child since the day she was born. She is nothing short of amazing—she has beaten all odds! This book is a touching love story about how this very challenged child enriched her family . . . and anyone who meets her. You will be enriched—and inspired—by reading her story.”

  — Greta Van Susteren, Fox News Channel personality

  “Bella’s Gift is a must read. I’ve had the privilege of enjoying family dinners at the Santorum’s home with the entire family, including Bella. I’ve witnessed the love that she has for her family and they for her. Bella’s story reminds us that love requires sacrifice, an idea that is becoming increasingly lost in our selfish society. Read it. You’ll be moved, inspired, and encouraged by the story of this little girl and her heroic family.”

  — Mark Levin, lawyer, author, and host of The Mark Levin Show

  “Bella Santorum’s story is one that all medical professionals should read and profit from. Her and her family’s struggle, besides being inspiring, is also medically enlightening. Too many members of her medical team assumed that her situation was hopeless. This was not so much from a lack of caring as it was a lack of knowing. A detailed, careful reading of the medical literature on children with Trisomy 18 reveals that these children do not have the dismal outcomes that some so-called experts claim. In rare disorders like Bella’s, there really are no experts. The ideal professional will yearn to become the expert, seek the truth, know the facts, and assess the entire situation. He or she needs to know in detail all about the child, the medical condition, and the family situation. Only then is one able to really offer good care. Unfortunately, the tendency to ‘write off’ children like Bella is all too common in modern American medicine with its bottom line, dollars and cents, mentality. Hopefully this book will help to change some of that.”

  — Michael G. Lamb M.D. and Kathleen G. Lamb M.D.

  © 2015 by Rick Santorum and Karen Santorum

  All rights reserved. No portion of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopy, recording, scanning, or other—except for brief quotations in critical reviews or articles, without the prior written permission of the publisher.

  Published in Nashville, Tennessee, by Nelson Books, an imprint of Thomas Nelson. Nelson Books and Thomas Nelson are registered trademarks of HarperCollins Christian Publishing, Inc.

  Thomas Nelson titles may be purchased in bulk for educational, business, fund-raising, or sales promotional use. For information, please e-mail [email protected].

  Scripture quotations are taken from REVISED STANDARD VERSION Bible, Catholic Edition. © 1965 and 1966 by the Division of Christian Education of the National Council of the Churches of Christ in the U.S.A. Used by permission.

  “Welcome to Holland” ©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

  Interior page design by Walter Petrie.

  Photo insert: Photos on opening and closing pages are courtesy “Timeless Portraits by Liz,” Sewickley, PA.

  ISBN 978-0-7180-2196-2 (eBook)

  Library of Congress Control Number: 2014947431

  ISBN 978-0-7180-2195-5

  15 16 17 18 19 RRD 6 5 4 3 2 1

  To Bella’s siblings Elizabeth, John, Daniel, Sarah Maria, Peter, and Patrick: Thank you for making Bella’s life so beautiful, joyful, and miraculous. We love you all! Thank you for making our lives complete.

  To all the parents raising special-needs children. You are a light in the world and your love inspires us. We pray for you every day.

  To Bella’s doctors, the ones who never referred to her as having a diagnosis that was “lethal” or “incompatible with life”: Thank you for giving her a chance. You are the gold standard for the medical profession.

  CONTENTS

  Foreword

  Introduction

  1. Love Is a Leap of Faith

  2. Love Necessitates Trust

  3. Love Through Pain

  4. Love Engages the Will

  5. Love Through Changes

  6. Love Is Persistent

  7. Love Is Heroic

  8. Love Implies Sacrifice

  9. Love Obligates Knowledge of the Beloved

  10. Love Is Unconditional

  11. Love Is Patient

  12. Love Requires Vulnerability

  13. Love Unifies

  14. Love Encourages Selflessness

  15. Love Begets Peace

  16. Love Chooses Joy

  17. Love Gives Purpose

  18. Love Brings Hope

  A Mother’s Note of Encouragement

  A Father’s Note of Encouragement

  Acknowledgments

  Notes

  Names and Captions for Photo Insert

  About the Authors

  Photos

  The LORD is my shepherd, I shall not want;

  he makes me lie down in green pastures.

  He leads me beside still waters;

  he restores my soul.

  He leads me in paths of righteousness

  for His name’s sake.

  Even though I walk through the valley of the shadow

  of death,

  I fear no evil;

  for thou art with me;

  thy rod and thy staff,

  they comfort me.

  Thou preparest a table before me


  in the presence of my enemies;

  thou anointest my head with oil,

  my cup overflows.

  Surely goodness and mercy shall follow me

  all the days of my life;

  And I shall dwell in the house of the LORD

  for ever.

  —PSALM 23

  FOREWORD

  • Michael W. Smith •

  Observing a friend or a loved one caring for a special-needs child can be bittersweet. Bitter—because of the pain, stress, and emotional weight they carry; sweet—because of the unconditional love exhibited by families caring for a child who cannot care for himself or herself.

  My wife, Debbie, and I have been privileged to view firsthand both aspects of this mystery. We’ve witnessed the tension, but we have also seen a marvelous example of selfless giving as we have observed Rick and Karen Santorum care for Bella, their beautiful child born with Trisomy 18. Most babies born with T-18 do not survive more than a few hours or days. But, despite the doctor’s dire predictions that Bella did not have a chance, the Santorums refused to give up on her—and Bella refused to give up on life!

  I am a fan of the Santorum family. It’s not too much to say that I regard them as heroes. As parents, Debbie and I share similar values with Rick and Karen. We share a sincere desire to instill in our children a foundational faith in God, love of family, and love for our country.

  I’ve known the Santorum family since Rick served with distinction as a US Senator from Pennsylvania. I have appreciated his courageous stands on important issues, but most of all, I have been moved by Rick’s love for his family. Our friendship deepened and solidified in October 2006, when I was invited to speak at a memorial service following the tragic shootings at a one-room Amish schoolhouse in West Nickel Mines, Pennsylvania.

  Rick was in the middle of his senatorial reelection campaign. He canceled his scheduled rallies and campaign stops to attend the memorial service. Out of respect for the families—and not wanting his presence to have any political overtones—Rick simply sat in the crowd with the other mourners. He supported me that day in a powerful way, for which I will always be grateful.

  So when I heard about Bella, I wanted to be there for my friends. I wanted to tell Rick and Karen and the kids that I understood what they were going through, but such words sounded hollow. I’m not sure that anyone can truly understand the overload of emotions that parents of special-needs children experience unless you have been there.

  Having a special-needs child is not merely like tending to a child sick with the flu, who, after a few days of rest, medication, and TLC, will feel better. Barring a miracle, Bella’s condition will not improve until she gets to heaven. The Santorums know and accept that truth. It would be easy for other family members to become jealous or feel slighted simply because Bella requires so much of Mom and Dad’s time and energy. But the entire family pitches in to help. They realize they will be caring for Bella’s most basic needs every day of her life, for as long as she lives. Yet they are happy to do so. Rick, Karen, and the kids know that love is spelled T-I-M-E.

  Every day of Bella’s life is a blessing and a challenge for Rick and Karen. Something as simple as going out to dinner, much less dealing with Rick’s many responsibilities, requires accommodating Bella’s needs. Even getting a sitter for the evening is an adventure, because babysitting Bella is not your average babysitting job.

  Yet, I’ve never heard members of the Santorum family complain of any inconvenience or extra workload they have inherited because of Bella’s condition. In fact, if you didn’t know about Bella, it is unlikely you would guess the Santorums have a special-needs child. They seem oblivious to anything they might be giving up to serve Bella, what they can’t do, or the places they can’t go, simply because Bella is unable to join them.

  If Bella’s needs are great, so is the love she expresses in her own ways. Talk to any of the Santorums, and it won’t be long before your hear, “Bella brings such joy to our family.” Bella draws them together. Every family member’s face lights up at the mere mention of her name. They regard each day with Bella as a gift and they choose to live it in hope. The Santorums are transparently honest and remind us that hope is not a guarantee of satisfaction. It is an inner attitude, a power to believe that life matters. Even if it is not perfect or not what we had expected, it is worth the struggle. They are quick to remind us that the power to embrace and accept life as it is, not simply as we would like it to be, is dispensed from only one Source.

  What some people might consider a tragedy, the Santorums have allowed God to turn into a blessing.

  In Bella’s Gift, you will fall in love with the Santorum’s special child, but you will also discover the real Rick and Karen Santorum. Within these pages, they reveal their unvarnished innermost thoughts and feelings. They make no attempt to sugarcoat their questions. Why us? Why this? Why now? Where is God in this situation and how could He allow this calamity to strike our family? Yet they always come out on the positive side of the ledger, emphasizing, “We receive so much more love from Bella than we could ever give to her.”

  They share important lessons learned about keeping their own spiritual reserves filled, because the draw upon them is deep and frequent. Perhaps most of all, they remind us what really matters in life.

  If you are a person who believes that love is a choice grounded in commitment, yet you wonder at times what that commitment really means, what it asks of you in the hard places, when the arguments for calling it quits seem to be carrying the day, Bella’s Gift is for you. I must warn you: this book does not pander to wimps. Quite the contrary, the courage and commitment exhibited by the Santorums call each of us to deepen our relationships. They practically dare us to risk taking this journey with them, to risk loving with our whole hearts, to continuously renew the commitments we have made, and to demonstrate our love for one another every day.

  Bella’s Gift challenges each of us to be less selfish, to give more of ourselves. You may not have a special-needs child, but there is someone close to you who needs some special attention, a special smile, a hug, a pat on the back, or a special word of encouragement. These expressions take little time and don’t require a lot of money. Indeed, anyone can choose love over selfishness.

  The Santorums effectively remind us that this love requires supernatural assistance—in fact, when you get right down to it, this sort of love comes only from God, working in and through our lives. But that’s the good news: His love is enough; His supply is inexhaustible. So when you find yourself growing weary in well-doing, remember Bella’s gift to the Santorum family—and to all of us.

  INTRODUCTION

  • Elizabeth Santorum •

  In his letter to the Corinthians, St. Paul told us “now faith, hope, and love abide, these three; and the greatest of these is love” (1 Cor. 13:13 NIV). Love is the greatest of the theological virtues and is at the heart of Christ’s teachings. Yet, the dictionary defines love as “an intense feeling of deep affection.” If love is merely a feeling, then it cannot be a choice. If the highest similar state is affection, then it requires nothing deeper than tenderness or passion for another.

  Love is a concept misunderstood by most of modern society and a look at its origins can clarify what “love as a choice” truly conveys. The ancient Greeks used four words to describe love: storge, philia, eros, and agape. Storge was familial love and defined the bond man feels toward family, persons, and animals. It often referred to love that is constant, love that one takes for granted. Philia described the love of friends or relationships formed based on compatibility and mutual interests. Eros was passionate love—not only in a sexual sense, but also in the wonder, appreciation, and desire that man has for sublime beauty.

  Finally, the ancient Greeks used agape to describe “when one person has much to give to another [who is] more needy.”1 This sort of love exists when there is a generous emptying of oneself in the service of another, without expectation of a
reward. It is the love our heavenly Father has for His children.

  When my sister Bella was born, I was a seventeen-year-old girl without a proper understanding of agape love or its practice. No doubt I received plenty of that deepest form of love from my parents growing up, but I had taken its existence for granted. I loved my parents and my siblings in the sense of storge and philia, but did not distinguish it from my other pleasant, reciprocal relationships. My ambiguous conceptions of love encompassed everything without noting any distinctions. 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.

  I wanted to love her, 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. I saw her vulnerability, not her helplessness. She was not passive but responded to me in ways that showed an open receptivity to my love in the form of simple, newborn appreciation. As I watched her, another Bible verse came to my mind, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Cor. 12:9 NIV). God would do mighty things through this little one. Her vulnerability was the perfect vessel to manifest His strength.

  As I held her, I saw that her perfect vulnerability would require a more perfect, agape, love. Bella’s very life demanded it. I initially feared this dependency, partially out of selfishness and partially out of unfamiliarity. As I stood next to her at her baptism several days later, I promised to be her godmother, to instruct her and guide her on her journey with Christ. Yet, it struck me that I would learn more about God from my meek, dependent, and “disabled” little sister than I could ever hope to teach her.