Bella's Gift: How One Little Girl Transformed Our Family and Inspired a Nation

Bella's Gift: How One Little Girl Transformed Our Family and Inspired a Nation

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by Rick Santorum, Karen Santorum
     
 

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Rick and Karen Santorum’s inspiring story of life with Bella, their special-needs youngest child

Four days after Rick and Karen Santorum welcomed their eighth baby into the world they were given the devastating news that their little girl, Bella, was going to die. The full story of life with Bella has never been told until now. This inspiring family

Overview

Rick and Karen Santorum’s inspiring story of life with Bella, their special-needs youngest child

Four days after Rick and Karen Santorum welcomed their eighth baby into the world they were given the devastating news that their little girl, Bella, was going to die. The full story of life with Bella has never been told until now. This inspiring family memoir explores what it means to embrace and celebrate the life of each person, and find hope, even in the midst of painful challenges.

Bella’s Gift is the story of how the entire family came together to love and care for Bella and how God strengthened them during the storms and blessed their family with grace, peace, and joy.

Searchingly honest, faith filled, and surprisingly joyful, Bella’s Gift is a loving, lived-out testimony to the truth that everyone counts, even “the least of these.”

Product Details

ISBN-13:
9780718021955
Publisher:
Nelson, Thomas, Inc.
Publication date:
02/10/2015
Pages:
272
Sales rank:
264,855
Product dimensions:
5.90(w) x 8.50(h) x 1.20(d)

Read an Excerpt

Bella's Gift

How One Little Girl Transformed Our Family and Inspired a Nation


By Rick Santorum, Karen Santorum, Elizabeth Santorum

Thomas Nelson

Copyright © 2015 Rick Santorum and Karen Santorum
All rights reserved.
ISBN: 978-0-7180-2196-2



CHAPTER 1

Love Is a Leap of Faith


* Karen Santorum *


I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

— Romans 8:18


There were five. Five fragile, tiny fingers held the cord that monitored her heart. The lifeline was coated in grey rubber and connected to a machine. Up. Then down. Then up. Then down. The jagged line stenciled her vitality. Glass separated me from her, her beautiful heart that I longed to know, to comfort. I put my fingers to the glass. There they were, those five perfectly formed fingers. Did they reveal that much? I saw nothing lacking. I saw her vulnerable figure, her soft skin, and her wisp of curly hair. Like mine. Her hair was like mine. Three pounds, fifteen ounces of body and soul grew to visible perfection in the safety of my womb.

Sometimes I still can imagine Bella kicking within me. All the more reason why every feeling revolts at seeing her outside of me, before it was time, before she was strong. Did I fail to protect her? She shifted in the isolette, hand releasing the grey line. I saw it then. To this day, I wish I had imagined it, that there was a mistake. Pinkie finger and index finger rested on top of the two middle fingers, points touching. There was my sign. That natural and simple movement had shattered my hope, because my sweet little girl had just displayed one of the classic markers for Trisomy 18.

The doctors had tried to prepare me. As Bella grew in me, they knew that something was "off," but without prenatal testing, they were unable to determine exactly what. A rare genetic disorder called Trisomy 18 was only one of the possible diagnoses. But no, not that, I had thought. I was so sure. So sure.

We had given away our baby things and thought we were moving into the next phase of life, but God had other plans and blessed my womb once more with another child. Surely He would protect her. But doctors had done tests, confirming what I had never dreamed possible. As a nurse, I knew what this meant. 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.

Like the blood pounding in my head, the list of symptoms boomed like a frosted iron hammer pummeling my heart. Yet, for some reason, I needed to see for myself. I had to look at my darling little girl and see some physical manifestation of the fatal condition she was dealt. Her delicate hands, those five fingers: they were my sign that she did in fact have Trisomy 18.

Within those whitewashed halls, I had no concept of time. It passed like water running through my fingers. My husband, Rick, and I were ghosts in a hollow world that was frozen inside hospital windows. Cheap blinds provided a thin veil between the fragility of the ill and the vivacity of the healthy world. Stooped shoulders, cold acidic coffee, rubbing alcohol, dripping IVs, beeping monitors, and white walls defined my physical reality.

A haze had come over me, my eyes never free of tears. I had so many questions and no answers to satisfy the screaming voice in my head that asked, why? My child had been given a death sentence. Scrubbed doctors with words of compassion that felt hollow and insincere told us mere days remained until her body would fail her. No surgery could fix this, no medicine heal it.

Fruit baskets and flowers filled my hospital room as I recovered from the C-section. Rick and I were supposed to be receiving congratulatory cards celebrating the birth of a new life. Instead, paper notes with cheap expressions of sympathy mocked me from my bedside table. Did they make cards for "staying alive," not just "getting well"? And then there was the silence from those who did not even acknowledge Bella's life. It was as if she did not exist. They appeared to ignore everything that made my Isabella Maria unique and wonderful.

My heart was angry and bitter, lashing out in response to such acute sorrow. When my other children were born, we were overflowing with joy and left the hospital within twenty-four hours. Would my new little one know nothing but this sterile cage? Hurt and anger burned through me, searing hot in my veins. I felt heat and, with it, some sense of life again. How can life and death be dealt in the same hand, at the same moment?

My hands rested on my stomach, feeling the stitches from the C-section. The first I'd ever had. Five fingers skimmed the coarse line that held my incision together. I winced in discomfort as I flexed my stomach muscles. The pain was horrible at first, but not now. There was an ache, a dull ache. This six-inch stitched line was a tangible representation of those scars left on my heart by a different kind of scalpel. Time would heal the gash in my tissue, but at that moment I doubted that even eternity could heal the gash in my heart.

Rick was a strong husband through this dark time, but I didn't know how he could be at peace as a father. As always, he took things standing up. He brought me coffee, food, clothes, and comfort. He took off work, cared for the other children, and held me as we both cried. He told me we were going to get through this together—with emphasis on the word together. I can still see Rick sleeping on the hospital room sofa with a couple of the children, while a few of them were in bed with me. We were completely exhausted.

On Sunday, five days after Bella's birth and the day after we had received the diagnosis, we walked to the coffee shop on the ground floor of the hospital. I took my coffee black that day. I never used to enjoy the hot bitterness without milk, but now I felt that it made me stronger. I couldn't really taste it anyway. Rick's brown eyes were soft, searching my face. I suppose my expression was vacant, my blue eyes listless and out of focus.

"I wish they would at least let me see her face. It's hard enough that she can't nurse," I whispered. The doctors had Bella on a CPAP machine to help with her breathing and kept a mask over her eyes for the first few days to prevent optometric damage caused by the lights. Like other babies with her condition, she was fed through a feeding tube, as she lacked the ability to nurse.

Rick held my hand. "Soon you'll know her eyes."

I knew God had a purpose for Bella's life, but this did not lessen the pain of my broken heart. "When am I going to see her eyes, Rick? When they don't have life in them anymore? Tell me! Aren't you angry?" My voice was strained and coarse. I didn't really want a response to the question, as I knew we were in two different places. Even in those days, Rick was at peace with God, with His plan for our little girl. I could not boast the same confidence. God help me, I could find no goodness or purpose in Bella's diagnosis.

Rick's eyes looked away from mine and then down as he said in a whispered voice, "I'm at peace with everything." Hearing him say that made me feel so confused and upset.

I wondered how Rick could be "at peace" during such a painful time. Peace is not something you feel when a doctor gives your daughter a death sentence. Peace is not something you feel when your life is, in an instant, changed forever. Peace is not something you feel when your daughter is in the neonatal intensive care unit. Peace is not something you feel when you've been abandoned and thrown to the far corner of a desert. Peace is for the next phase, maybe in a year or two, after going through the fire and clearing the rubble. At a time like this, peace is simply the last thing a parent will feel. I moved my cup of coffee away and got up from the table, weeping and barely able to stand from the pain of the surgery, and said what I sometimes say to my children, "I love you so much, Rick, but I really don't like how you're acting right now. I just don't understand." We walked back to the neonatal intensive care unit (NICU) together, but I felt alone, as an unbearable loneliness seemed to suffocate me.

* * *

The children met their sister, Isabella Maria, for the first time on the day she was born. We decided to call her Bella because it means "beautiful," and she is beautiful. All of them came in to see her: Elizabeth, John, Daniel, Sarah Maria, Peter, and Patrick. We were trying to fit a lifetime of love into what we were told would be a short life.

As they entered my room, I hugged them all so tightly, so desperately. My shoulders shook with silent sobs. Their hearts were heavy, and they needed to be assured that Bella was going to be all right. "Mommy, you look so tired. Are you okay?" My six-year-old, Patrick, knew that something was wrong, but not exactly what that meant. He squirmed away from my embrace, looking at me with innocent concern and confusion in his wide, brown eyes.

"Mommy's getting better, sweetheart. I'm so happy to see you."

He smiled in self-assured contentment. Peter and Sarah quickly curled up under my arms, buried their faces in me, and cried.

Rick and I did our best to explain to our children that Bella was going to be all right. We needed to protect their delicate hearts and minds and assure them that we were going to get through this together as a family, that we were going to love Bella and care for her just as we cared for them, and that if she left us, she would be with our Father in heaven, knowing only love. We framed everything in the light of faith and described the legion of angels who might come and take Bella to heaven. We also described the NICU world in words and pictures and told them that everything in and around Bella was there to help her.

Patrick proceeded to buzz to the nurse's station, telling them he had a new baby sister. The other children wandered over to the NICU window, elbowing for the best view of Bella's isolette. I looked at Rick as I struggled to stand up. His eyebrows furrowed in concern, hands flexing as he deliberated whether or not to help me up. We had not spoken since yesterday. Then, Rick took both my hands, then wrapped his arms around me, and said, "This has been the hardest thing I've gone through in my life. I want you to know that. I'm just trying to understand it as best as I know how. What I do know is that Bella is who she is, and we're going to love her just the way she is. I think it's wonderful that all she'll ever know is love. Our love." And we stood there together, eyes united.

* * *

"Mom, look: I got a green one! And green's my favorite!" Patrick held out a sticky lollipop he had received from the nurses. Somehow it had already found its way onto his shirt and face.

Peter whipped around upon hearing that: "Patrick! Blue is better than green!" Peter, our eight-year-old, has always argued with Patrick about which color is better.

Kids. Rick and I smiled. It felt good. We all cleaned our hands and put on scrubs. Patrick didn't even protest when the nurse took his green lollipop. Could they all sense how important this moment was? Rick and I helped the children into clean hospital gowns that were far too big for them. Hospital policy only allowed one of the children to visit Bella's isolette at a time.

We decided that Sarah, who was ten, would go in first. She had prayed for a little sister for so long and understood the seriousness of her condition, but perhaps not the severity. Holding Sarah's hands, Rick and I walked with her into the NICU. Sarah bent down so she was eye level with Bella. Silence at first. Mouth formed in a wondering o. Eyes taking in everything in front of them. She looked up at me, then Rick. Receiving our smiles and nods in return, she turned back to look at her new baby sister. Brushing her hair out of her face, she leaned in closer, nose nearly touching the glass, and then sat in the rocking chair next to Bella's isolette.

The nurse carefully placed Bella into Sarah's arms. She had removed the eye mask, but Bella's eyes remained tightly closed against the harsh hospital lights. What came next was barely audible, a timid whisper. "Hi. I'm Sarah, your sister. I prayed to Jesus that your angel would have a pink ribbon. Mom said that would mean you were a girl. I've always wanted a baby sister! My whole life!" Sarah paused. Looking up at me, she smiled. "Mom, she's like my baby doll! She's so small." Beaming with pride and joy, she looked back at Bella. Sarah's smile disappeared as the beeping of the heart monitor startled her. The beeps stopped, and Bella's heart rate went back to normal. Staring intensely, Sarah said, "Oh my gosh, you're so cute. I'm sorry you're sick. I'm praying for you, Bella." She kissed her as she said, "I love you, Bella."

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. My dear parents and family called me every day, offering support and consolation. My mother's compassionate heart and unwavering inner strength anchored me during that stormy time. I vividly remember my sister Kathy saying, "Karen, of all the members of our family, you are the one who can handle this. Your faith will get you through." I didn't believe her.

My friend Susie visited me when others shrank away. I'm grateful for that. She brought me flowers that added some warmth to the cold room. She was wearing khaki capri pants and a linen blouse; her brown hair was pushed back behind her ears. What a pair we must have made, me with my hospital gown, raccoon eyes, and unkempt curls thrown up in a desperate bun. I'll never forget Susie's face during that talk. It was warm. Her smile was soft and understanding, even through tears. She brought light and warmth.

We sat together, I tried to describe what I was going through, and she patiently listened. She knew. She knew the immense heartache. We talked about faith and the need to trust completely in the will of God. My faith, which had previously been a consolation during challenging times, now offered little comfort. I was mired in tormenting questions. I wanted to know why God would have done this, why He would have allowed this. I wanted to know how God, the God I had loved so completely, could be so unloving and so distant. I felt abandoned. It seemed as though my pleas for help were not heard. It felt as if I had been thrown into the desert.

As a Christian, I knew the symbolism of the desert, but now I experienced the reality: the aridity and deep sense of loss and loneliness. During those long, lonely nights in the NICU, I thought about Jesus and about Moses, Abraham, John the Baptist, and so many others whose faith was tested in the desert. The desert meant long periods of silence and fasting and enduring the enemy's attacks. I didn't understand what was happening. My time in the hospital and wrestling with the diagnosis was a desert time.

My friend Susie offered the hope and comfort of an oasis during that desert time. Susie came into the NICU every day. She took pictures, organized meals at our church, helped with the children, drove our pastor Fr. Alexander Drummond, in for Bella's NICU Sacrament of Holy Baptism and Confirmation, and held me together. "A faithful friend is a sturdy shelter: he that has found one has found a treasure." Susie was and is a treasure.

Bella's baptism was a significant moment in her life and in ours. Rick, me, Elizabeth, John, Daniel, Sarah Maria, Peter, and Patrick were all in our hospital gowns gathered around Bella's isolette. Elizabeth was Bella's godmother, and our dear friend Mark Rodgers was her godfather. They are two very holy people in the spiritual care of an angel from heaven. Heavy hearted and exhausted, we stood and prayed as Father Drummond led us in prayers for our Isabella. He placed a white garment over Bella symbolizing her purity as she "put on Christ" (Gal. 3:27). Father then anointed her head with oil as a reminder that Bella was receiving the Holy Spirit. Since we were in the NICU, we could not light the candle, but it was there to remind us that Bella would always be a light to others. As he poured the water over Bella's head, he said, "[I baptize you] in the name of the Father and of the Son and of the Holy Spirit" (Matt. 28:19).

This moment always filled Rick and me with so much joy as we welcomed our infants into the Church and promised before God to raise our sons or daughters in the faith. At the moment of our children's baptisms, we were on a lifelong mission to pray that our newly baptized baby would live a life that was pleasing to God and guided by the teachings of Christ. Bella's baptism was different. Something so holy was taking place and all the focus was on Bella, but it was somber and there were a lot of tears. None of us even noticed the bright lights or heard any of the NICU alarms. Rick and I just kept hugging the children and telling them that we loved them. Susie was there taking pictures and capturing moments that in our exhaustion we do not even remember.


(Continues...)

Excerpted from Bella's Gift by Rick Santorum, Karen Santorum, Elizabeth Santorum. Copyright © 2015 Rick Santorum and Karen Santorum. Excerpted by permission of Thomas Nelson.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Meet the Author

Rick Santorum, a native of Pennsylvania, was a candidate for the Republican nomination for president of the United States in 2012. He served in the House of Representatives from 1991 to 1995 and in the Senate from 1995 to 2007 and is the author of several books, including the 2005 New York Times bestseller It Takes a Family . Rick’s most important role and love in life is being a husband and father.

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Bella's Gift: How One Little Girl Transformed Our Family and Inspired a Nation 4.7 out of 5 based on 2 ratings. 17 reviews.
HappyHockeyMom More than 1 year ago
I just finished, Bella's Gift. (bought it at BN) Wow. It is such an encouraging, thought provoking, personal and intimate account of not only raising Bella (who has physical and intellectual disabilities), but also how of the entire Santorum family functions as a team to support each other. I am deeply moved by their candid story and vulnerability. Touching on the story of losing their son, Gabriel, born too soon, and now raising a child with special needs, this book really gives the reader a glimpse into how their family functions, and just how devoted Rick and Karen are to their family through their faith. Even if your family struggle is different from theirs, this book will encourage you with their testimony of both good times and horrible times, and how in the end, love and faith in God, brings hope to the hurting. I wish everyone could read this book.Then they would understand just how committed Rick and Karen are 24/7 to help address the problems our country is facing and how together they make it work despite their daily demands. I have a big lump in my throat and tons of respect for them. I give it 5 stars!
susanwalkergirl More than 1 year ago
A few years ago, I heard Rick and Karen Santorum on Dr. James Dobson’s Family Talk radio show as they shared about their daughter Bella. I was also familiar with Rick from his 2012 Presidential bid and appreciated his conservative pro-life values. That’s why I was eager for the chance to read their new book Bella’s Gift. I really liked Bella’s Gift and highly recommend it. This is a challenging book to read because you may find yourself evaluating what it means to be pro-life. Especially, when you read about the ongoing fight the Santorum family had to endure to have their precious daughter Bella treated when she got sick and the ongoing care she had to receive at home on a daily basis. I was very angry at what I read about the medical establishment, doctors and nurses, who refused to give Bella basic treatment that they would have given to any “normal child” who was sick. But when it came to Bella, who has physical and mental disabilities as a result of Trisomy 18, she didn’t qualify in their minds for treatment. It was shocking to hear them say that Bella’s condition was incompatible with life. When treated properly Bella had a fighting chance of improving from her immediate sickness. I was heartened to read of the exceptional care that Bella received at the Children’s Hospital of Philadelphia. A place where the doctors and nurses called Bella by name and chose to come alongside the Santorum family to fight for her life. What a haven CHOP is for families with sick children. I know the Santorum’s didn’t write this book seeking adulates for all they’ve done for their daughter Bella. They are the first ones to tell you that their entire family has been blessed by Bella far more than any sacrifice they’ve made for their daughter. It’s through Bella they have learned what pure and true love is. They’ve seen a picture of what absolute dependence upon our heavenly Father looks like. I appreciated Rick and Karen’s openness and transparency about their inner struggles, individually and as a couple, as they fought daily for Bella to live. They shared how their faith was the driving force in their fight for Bella and how it upheld and sustained them in the very dark valleys they walked through. Bella’s Gift will get you thinking. Would I have the wherewithal to do what the Santorum’s did to help save their little girl? Has the pro-abortion and right to die culture in our nation made it much easier do away with helpless disabled children? Either killing them outright in the womb or refusing treatment once they are born? After all, our culture doesn’t bat an eye when it comes to extinguishing the life of an innocent healthy pre-born baby when it’s not convenient for the parents. Is a human being any less human or less valuable because they are disabled mentally or physically? If I had a child who would be totally dependent upon me and require fulltime care, how would I respond? I wanted Rick and Karen to give the names of the doctors, nurses and hospitals who didn’t want to treat Bella. But at the end of the book I found out why they handled those people with grace. It’s through their faith and because of the grace God has shown to them through Jesus Christ that they chose to forgive the doctors and nurses and pray for them. Love covers a multitude of sins. I highly recommend Bella’s Gift by Rick and Karen Santorum. It will challenge you, help you grow in your faith and encourage you. I would like to thank the people at BookLook and Thomas Nelson Publishers for the opportunity to read Bella’s Gift in exchange for an honest review. I was under no obligation to give a favorable review.
Anonymous More than 1 year ago
Thanks so much to the Santorums and their family for opening their hearts for us to see the true values of being a part of persons with special needs. Avoiding any political emphasis possible, the book stays focused on it's purpose. It is easy to read and clear in its direction.
Anonymous More than 1 year ago
This book was difficult to read. It was not in chronological order and jumped from 2010 to 2012 then back to 2008 and up to 2015. After reading it I still knew very little about Trisomy 18. I would like to have found out more about Bella and her condition. It is supposed to be a story about her life, but it is more about the life of Rick and Karen. It's an OK book, but not what I was expecting. Some of it was repetitive as Karen and Rick both told the same stories.
Luv_to_read More than 1 year ago
I had no idea of the sacrifices the Santorum family have made while caring for their much loved daughter Bella. I was touched by the family's faith, love and joy. Through all the hardships their faith and joy and love of family come through.
Fraber More than 1 year ago
The book is so inspiring and very easy to read too. I would recommend it to everyone, even if they don't have the same situation as the Santorums for it made me realize how important and beautliful life is!
Anonymous More than 1 year ago
Time flew as my husband and I read “Bella’s Gift” aloud to one another in a few short evenings. While reading we sometimes stopped choked up and had to wipe our tears away to continue and other times we laughed out loud at the amazing similarities of Bella’s life to our own daughter’s, who also has Trisomy 18. It was encouraging to read Rick and Karen’s candid stories of Bella’s medical challenges because while there was no escaping the tough reality of Bella’s fragile life they gave us the privilege of looking through the lens of committed and loving parents who were willing to lay down their own lives (and a Presidential campaign) for their child. The Santorum’s story gives everyone the opportunity to understand the intrinsic beauty and treasure in every human life. 
Anonymous 10 months ago
Anonymous More than 1 year ago
Anonymous More than 1 year ago
I just finished reading,"Bella's Gift",,, a wonderful story, shows us how to deal with "Special needs children,  Also, what a great family., this precious little girl was born into. Rick, and Karen are truly wonderful people(I never met them),, but their character  shows,,I only he was our president??, Wow, just think what America would be like now>>
Anonymous More than 1 year ago
A little repetitive but. Bella couldn't have gotten any better parents than the santorems.
BJ_Alabama More than 1 year ago
Karen's raw pain and thoughts come across not only loving, but also desperately sad at the reality of her youngest daughter had been condemned to death by a disease that was so rare she had not even heard of it. Instinctively, I want to help her endure and conquer her fears and sadness. I will buy the eBook through B & N so that I can anonymously insert myself into their lives for just a while until I understand how their strong marriage and spiritual faith were greatly tested but inevitably held their hearts, minds and marriage together until each could recover from the awful shock of "No Tomorrow" for young Bella.
efm More than 1 year ago
Easy reading story of love, courage and conviction in the face of doubt. I read it in one day!
FluffyOH More than 1 year ago
This is a truly inspirational story of parents who wouldn't give up and left no stone unturned to care and nourish their child when doctors gave no hope for Bella's survival. Awesome read.
RRMAG More than 1 year ago
A very inspirational story. I was swept up in the emotion and couldn't turn the pages fast enough. And, yes, it did make me cry.
Anonymous More than 1 year ago
Just finished reading Bella's Gift!  It is a wonderful book written by Rick and Karen Santorum about how to live and love in the face of devastating news of their newborn daughter's health. Told that Bella's condition is "incompatible with life," Rick and Karen quickly learned that they needed to become experts on Trisomy 18 and be able to insist on proper medical attention and care for her!  There are so many lessons conveyed not only for parents of children with disabilities, but for everyone about what really matters while we walk the Earth. The Santorums are a model of what it means to be family and, with their faith in God, are able to experience the  joy that flows from love as a fruit of sacrifice.
Anonymous More than 1 year ago
Did she live? Is she alive?.