Bella's Gift

by Rick Santorum

  In April 2012, after fifteen competitive primary contests in which Rick won eleven states and almost four million votes, and after almost a year of intense campaigning, the promises of Easter and a few days off from the trail were enticing. We felt like weary travelers who needed a respite from the journey. Rick came home on Holy Thursday, eager for some time to sleep, regroup, and spend time with the family. Sadly, in the wee hours of the morning, Bella, who had been struggling with a runny nose, got really sick and went into her death spiral.

  Her lungs were congested, and she was not breathing enough to keep her oxygen levels up. She was having one apnea after another; in addition, she had a high fever and was tachycardic. When Bella is sick, we immediately call the pulmonologist and start the nebulizers, suctioning, chest PT, various medications, and oxygen if needed. It’s a frightening and stressful time. Rick has always been a rock for me during times when Bella is sick. It’s extremely emotional for us both, and I must admit that I cry a lot when she’s sick. I don’t cry while I’m focused on Bella’s care; rather, it’s in the quiet of the night after we’ve stabilized Bella that tears come spilling out.

  Rick and I had been up with Bella all night, and instead of improving, she continued to decline. Her fever was raging, despite the acetaminophen, ibuprofen, and sponge baths. We were giving Bella frequent nebulizers, but her congestion only got worse. Her oxygen requirements kept going up as her oxygen saturation levels dropped, and her heart rate was frighteningly high. Whatever was making her sick was a nasty bug, and we could not get it under control. We had spoken with the pulmonologist several times throughout the night. In the morning the pulmonologist recommended some treatments, but when Bella did not respond to them, her doctor said we needed to bring her into the hospital.

  The last place we ever want to take Bella is the hospital. We’re always concerned we’ll bring her in for one illness, but she’ll catch something else. With the superbugs that are in the hospitals today, and the fact that during cold and flu season the isolation rooms are in high demand, this is a legitimate concern. Because of these concerns, the decision to take Bella to the hospital is one that we always leave up to her physicians, but they also know we try to get through Bella’s crises at home. Rick and I, together with the pulmonologist, do everything we can to avoid the hospital, so when her doctor said we needed to bring Bella in, our hearts sank.

  Rick radioed the Secret Service agents who were outside our home. He told them we had to take Bella to the hospital. As always, the cars were ready and waiting in the driveway. Since we had the oxygen, monitor, and medications, the pulmonologist suggested we just get in the car and get to the hospital. We could be there by the time an ambulance arrived at our home; in addition, the ambulance would only have been allowed to take Bella to the local hospital and not to the one that had the pediatric unit where our pulmonologist worked.

  We bundled up Bella, got into the SUV with her oxygen tank and monitor, and drove to the hospital. At a moment like that, I was grateful that the intimidating, black caravan of SUVs commanded the respect and interest of other drivers as they cleared the way on the road. We made it to the hospital in record time.

  Since we did not have time to go all the way to CHOP, we had to go to our local hospital, Fairfax Hospital, which has an excellent pediatric intensive care unit. I must admit that once you’re used to the excellence of CHOP, it’s really hard going to another hospital, and there is an additional layer of stress added since we were not going to the hospital that we knew and completely trusted. I was nervous going to a place where I did not know the physicians or the facility; however, this was not the same hospital that Bella was in when she was six months old. We will never go back there.

  It was a great comfort to Rick and me that, when we arrived, Bella’s pulmonologist met us in her room and cared for her the entire time she was in the hospital. Dr. James Clayton, Dr. Sunil Kapoor, and the nurses at Fairfax Hospital took great care of Bella. They were able to get her stabilized, and it was a huge relief when Bella turned the corner. Dr. Clayton and Dr. Kapoor and their team were bright, professional, compassionate, and thorough in their assessments of Bella, and included Rick and me in the decisions regarding her care.

  It was no coincidence that Bella was admitted into the hospital on Good Friday, a day that is highly significant to us as Christians. From the moment our Savior was born, His entire life was directed to the supreme moment when He was crucified and died on the cross. As Bella lay in her hospital bed that day, I thought about Christ’s passion and how Mary, His dear mother, must have felt watching Him being mocked and treated with such horrific cruelty.

  Anytime Bella was in the hospital, it was like a constant spiritual retreat. I would hold her and stroke her head and pray constantly. My Bible and spiritual books were always with me, and the inspiration from them helped me stay focused on Christ and the meaning of suffering. His cross is the tree of life that gives us our salvation. His cross is the stairway to heaven and God’s glory. “If any man would come after me, let him deny himself and take up his cross and follow me,” He said (Matt. 16:24).

  There were times when I felt as though I were on the cross—not at the foot of the cross, but on it. It was during those moments, when the worries and burdens were crushing me and pulling me down into a dark valley, that our dear Lord filled me with His grace and gave me the strength to see the light through the darkness. My entire being is filled with thanksgiving, and it is a great consolation to know that no matter what happens in life, our Savior will hold us, strengthen us, and walk my family out of the darkness and into the light.

  Through Bella’s life, I have witnessed one of the most important lessons of Christianity firsthand. When there is no purpose to pain or sickness, it becomes suffering, but when we unite ourselves with Christ and trust completely in His divine providence, we are filled with hope. It is the hope of an intimate relationship with Jesus Christ and that we are one step closer on our journey toward heaven, and heaven is all that matters in life. I don’t understand this mystery of suffering; I can only trust that somehow it will all work for the glory of God.

  It was on Good Friday that Rick and I, in the midst of caring for Bella in the pediatric intensive care unit, began sifting through the decision to continue with the presidential race or to bow out gracefully. We were immersed in our Lord’s passion in a way like never before. Our marriage and children had always been our most important priorities, and having Bella in the hospital tipped the scales of emotion and sapped us of our strength. We had been on a high-speed train and by the grace of God were able to handle it; that is, until Bella got sick. The most important focus for Rick and me was getting Bella better and tending to the hearts of our six other children, who were worried about their little sister.

  We gathered the children together in Bella’s room, and we hugged and prayed. We listened to their thoughts and wiped their tears. For the entire Easter weekend, we prayed for Bella’s health and about the decision to leave the race or continue. By Easter Sunday, that most glorious day of Christ’s resurrection and the promise of new life, the decision was made clear in our hearts and minds as we prayed.

  Praise God, Bella was well enough to come home the following day. We came home to a house full of pink roses. I have often mentioned that Bella loves pink roses. Initially, the children bought them to congratulate me when we found out we were expecting a girl. They thought pink roses would be perfect for a baby girl, and with time they had become “Bella’s flower.” We frequently buy pink roses simply because they are cheerful and brighten up the house. Only later did we learn that pink roses symbolize gratitude. Throughout her life, we have had vases of pink roses in the house, an unknown and silent declaration of gratitude. We will be forever grateful for Bella’s life, her joy, her impact on our family, friends, and church community. On this particular day, we were especially grateful for her healing.

  The Monday after Easter was Elizabeth’s birthday, and she was a cham
pion on the campaign trail. She handled everything with intelligence, grace, and strength. We made her birthday a beautiful celebration of her life, and we were all happy that our sweet Bella was home. The following morning we held a press conference, and Rick announced, with me, Elizabeth, John, Daniel, Sarah Maria, Peter, and Patrick at his side, that he was ending his run for president. It was a bittersweet day. Bella was on the path of recovery, but I knew in my heart what the outcome of the presidential race would ultimately be, and I feared for the future of our nation. We had just given the United States presidential race to someone who would not talk about the most important issue and our ticket to success: the Affordable Care Act.

  When the presidential race ended, and all the goodbyes were said and all the numerous details to wrap things up were completed, Rick and I took a three-week vacation with our children and my dear mom to our favorite place in South Carolina. It was a perfect three weeks, and everyone, including Bella, had the time of their lives! We were finally able to gather around the table as a family for all our meals; we rode bikes for hours on the trails and on the beach; we played board games and laughed the entire time; we soaked up the sun for hours while listening to the soothing sounds of the ocean as we built sand castles and jumped the waves; and we went to church and thanked God for all His blessings for which we were eternally grateful. It was a healing time for our family, and a time when we added a lot of memories that we will always treasure.

  It is in our brokenness that we are healed and brought to new life. We are the clay and Christ is the Potter, and it is He who renews our souls.

  Elizabeth recently read a passage to me from one of our daily meditations that touched me. It is about a very special boy named Armando. His story reminds us that only through our brokenness do we really grow.

  Armando [is] an amazing eight-year-old boy . . .

  Armando cannot walk or talk and is very small for his age. He came to us from an orphanage where he had been abandoned. He no longer wanted to eat because he no longer wanted to live cast off from his mother. He was desperately thin and was dying of lack of food. After a while in our community where he found people who held him, loved him, and wanted him to live, he gradually began to eat again and to develop in a remarkable way. He still cannot walk or talk or eat by himself, his body is twisted and broken, and he has a severe mental disability, but when you pick him up, his eyes and his whole body quiver with joy and excitement and say: “I love you.” He has a deep therapeutic influence on people . . .

  What [many people] do not always know is that they have a well deep inside of them. If that well is tapped, springs of life and of tenderness flow forth. It has to be revealed to each person that these waters are there and that they can rise up from each one of us and flow over people, giving them life and a new hope.

  That is the power of Armando. In some mysterious way, in all his brokenness, he reveals to us our own brokenness, our difficulties in loving, our barriers and hardness of heart. If he is so broken and so hurt and yet is still such a source of life, then I, too, am allowed to look at my own brokenness and to trust that I, too, can give life to others. I do not have to pretend that I am better than others and that I have to win in all the competitions. It’s okay to be myself, just as I am, in my uniqueness. That, of course, is a very healing and liberating experience. I am allowed to be myself, with all my psychological and physical wounds, with all my limitations but with all my gifts too. And I can trust that I am loved just as I am, and that I, too, can love and grow.1

  Non nobis, non nobis, Domine

  Sed nomini tuo da gloriam.

  Not to us, not to us, O Lord,

  But to thy name give glory.

  16

  LOVE CHOOSES JOY

  • Karen Santorum •

  We have to choose joy and keep choosing it.

  —HENRI J. M. NOUWEN

  Day 2,553: Wednesday is an important day in the Santorum house. On May 13, 2015, Bella turns seven. As some people can imagine, having seven kids in our family, we do a lot of birthday parties. Various decorations, party hats, and reused gift bags are always floating around the house, waiting to be used in the next celebration. Our house is a happy one, full of life. That being said, Bella’s birthday is always uniquely joyful and the cause of grateful reflection.

  Sitting on the lawn in front of our house, I watched as Bella sat alert in her stroller and played with her toys, kicking her dangling, sandal-clad feet back and forth. She looked up at me every now and then to smile or talk. She doesn’t talk like any other little girl. She has her own language; as previously mentioned, instead of speaking English, we say she speaks “Bellish.”

  The birds’ songs occasionally broke her concentrated focus on her baby doll. I couldn’t help but laugh as Sarah enthusiastically piled dandelions on Bella’s lap, showing her how to blow the “white fairies” into the wind. “Make a wish, Belle,” Sarah whispered. Make a wish, I thought. A birthday wish for many more years to continue rewriting the medical textbooks, proving the statistics wrong, and offering hope to other families with Trisomy 18 children.

  I watched Bella’s dainty fingers grab the stems, spraying the fairies. Her smile broadened, sea-blue eyes watching the fairies soar up and into the wind. Make a wish. I have made wishes and prayers for you, little one, more than I know how to count.

  When Bella was hospitalized, we prayed constantly and found strength in sacred Scripture:

  When the cares of my heart are many,

  thy consolations cheer my soul.

  (Ps. 94:19)

  I prayed for His consolations, to be comforted by my Father. As I sat there with Bella, I couldn’t help but smile at how He had answered my prayers. Bella’s condition and sicknesses have given my heart anxiety, but her joy and her life have been my consolation. When she was born, He led me down a path of growth that was ultimately drawing me back toward Him. When I looked back on the past seven years, I saw that the source of the journey so often riddled with anxiety and suffering was the same source of my consolation: this smiling little girl.

  Bella’s life is founded on the prayer, the wish, and the hope that my family will be graced with one more day with her. Nearly seven years later, the outward effects of her condition are hardly apparent physically. Even though, in our minds, she will always be our baby, she falls in the typical height range for a child her age, and her condition has no physical manifestations, save her sweet little fingers that she likes to hold in the typical Trisomy 18 fashion.

  Each day is marked by small but invaluable moments. I’ve watched her stare into Sarah’s eyes as she sings her songs or be in stitches as Daniel makes goofy voices. I’ve laughed as she dances with John to the Beatles or giggles as Patrick bounces her on his lap. I smile whenever Bella plays the piano with Lizzie, hands on top of her big sister’s. I’ve witnessed her drive as she walks with Peter, so proud of herself when we sing the “Bella song” in praise. The song is a new take on an old tune, but we are quite sure Bella thinks it was written just for her, because she never fails to light up when we sing it:

  We love you, Bella

  Oh, yes we do

  We love you, Bella

  And this is true

  We love you, Bella, we do

  Oh, Bella, we love you!

  Simple joys. In those moments, life is sweet and we are grateful. For each rough day, there are a hundred healthy days in the sun. Ironically, the bad days make the good ones even better. They provide perspective, which in turn changes our attitudes. We appreciate the days of health and happiness all the more because we know they are precious gifts.

  Initially, life with Bella was a crash course on learning to see the joy of the moment. When the present is all you are sure of, you can either live in fear of the future and be consumed with the predicted pain, or you can choose joy, making every blessed moment one of beauty. When Pope Benedict XVI arrived in Portugal on May 12, 2010, he discussed one of his favorite themes: beauty. He told the pilgrims
who had gathered:

  Dear friends, the Church considers that her most important mission in today’s culture is to keep alive the search for truth, and consequently for God; to bring people to look beyond penultimate realities and to seek those that are ultimate. I invite you to deepen your knowledge of God as He has revealed himself in Jesus Christ for our complete fulfillment. Produce beautiful things, but above all make your lives places of beauty.1

  “Make your lives a place of beauty.” When I read those words, I immediately thought of our little Bella. Bella makes the Santorum house a place of beauty, and she doesn’t need to change to do that. She doesn’t need to have one less eighteenth chromosome. God created her, and He calls her “beloved.” He knit her together in my womb, has numbered the hairs on her head, and knows her innermost being. She is beautifully and wonderfully made! She has impacted the lives of many, helping them to find the way of beauty and to choose joy, no matter what the prognosis.

  In Plato’s Republic, Socrates crafted a famous story about men who are chained in a cave. Staring at blank walls, they see only the shadows that are cast from the fire behind them. Unable to reach beyond their limited experience, they accept these shadows as reality and never know what is beyond these wisps of truth. They cannot break their chains or crawl out of the cave and into the light. Socrates said that a philosopher, a lover of wisdom who sees the truth and leads others to it, must save them.

  To many, Bella is the one in the cave, but I know that it’s quite the opposite. I am the one staring at the walls. We all are. In The Weight of Glory, C. S. Lewis explained this paradox of the human condition, saying, “We are half-hearted creatures, fooling about with drink and sex and ambition when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased.”