Bella's Gift Read online

  Right after Bella’s baptism, Father Drummond looked at Rick and me and asked what confirmation name we would like to give Bella. Rick and I were surprised, because we did not know that Bella was also being confirmed. We looked at each other and at the children and laughed for a moment since confirmation names in our family usually took months to decide. Everyone agreed that Bella’s confirmation name should be “Fátima,” after Our Lady of Fátima, since she was born on her feast day. So Isabella Maria Fátima is her name, and the circle of grace that was given to her just moments before at her baptism was completed with her confirmation (Acts 2:1–12). There was no party that followed, only quiet reflection on the significance of what had just happened. Our Bella was now part of the body of Christ; part of our church family.

  Rick and I were constantly in the NICU, keeping our vigil at Bella’s isolette. During Bella’s ten-day stay in the NICU, we all held her, sang to her, and rocked her. We were trying to fit a lifetime of love into what we were told would be a brief life. The care was excellent, and the physicians and nurses were kind and compassionate. That is, except for one doctor.

  “You must be her parents.” The physician extended his hand. “I’m one of the attending doctors for the NICU. I am so sorry for your . . . situation.” We shook his hand in turn. His skin was tan, his smile white. He was about fifty, with an overbearing presence, and his cologne was out of place in the sterile room. He, like other doctors and medical literature, described Bella as having a “lethal diagnosis” and referred to it as “incompatible with life.” The stark utterance clanged like a hammer against an empty cistern. Rick looked at me and squeezed my hand.

  I turned to the doctor, “Thanks for your concern, Doctor, but we’ll continue to fight for Bella’s life. She’s clearly exceeding medical expectations.”

  The doctor looked mystified. “I don’t know why you would want to do anything. You have to let her go. Statistically, there’s no hope here.” He walked away, not knowing he had prodded a momma grizzly by talking about my little girl like that. My claws were out. She is not a statistic. She is not a diagnosis. She is my child. The medical community is filled with many like him who weigh the value of life according to IQ or in terms of one’s usefulness. They were not going to dismiss my little girl so easily.

  One week had gone by since Bella’s birth. Seven days more than the skeptical and scientific said she would live. One hundred and sixty-eight hours of life, unexplained and miraculous. I remember sitting at Bella’s isolette when the “why do anything?” doctor came over. My eyes flashed and my primal instinct kicked in: the momma bear stood between this scavenger, not healer, and my baby. It did not matter to him that Bella was stable and doing much better than expected. He was rude and had about as much warmth as a lizard. Dr. Iceman. He did not refer to Bella by name and kept telling me not to look at the monitor. My gaze turned stony when he pursed his lips and said, “Well, I think it’s best if you don’t grow attached to the baby. It’s for the best.”

  I froze. Shocked. How could he imagine that I had not loved my little girl from the moment she was in my womb? I love her with a love infinite and unqualified, a mother’s love. My voice quaking with emotion, I responded, “I am attached to Bella. In fact, I’ve been completely in love with her since knowing of her existence, and that is what’s best.”

  During this time our babysitter, Bridget, was a lifesaver. She took great care of the children and kept our home running smoothly. It was a comfort to know that our children were being well taken care of in my absence and with such a kind, holy, and virtuous woman whom they had known for several years and who was like a big sister to them. My oldest children helped with meals and in a hundred different other ways every day. They were in school and visited Bella when they were able to. We thought that keeping their lives as normal as possible with their schoolwork, sports, friends, and music lessons would be best for them.

  After a long week in the NICU, Rick and I continued to spend hours holding each other and staying with Bella. Garbed in a polyester hospital gown, I shuffled to the NICU sink to wash my hands for the hundredth time. As on all previous nights, I traced my fingers along the glass wall that kept me from her. We kept a prayer vigil at her isolette, a special bassinet used for infants who are born prematurely. It provides a controlled temperature, proper humidity, and openings for tubing from IVs or oxygen. But most important, we provided what no machine can and what every child truly needs and deserves: love.

  Rick was asleep in the rocking chair next to Bella’s isolette. Did I look as tired as he did? How I love that man. Darkness inhabited the room, save for the steady glow of red and green numbers on the monitors. Blood oxygen saturation: 98 percent. Heart rate: 147 BPM.

  The night nurse interrupted the silence. “She’s doing fine tonight, darlin’,” she said. Wearing Winnie the Pooh scrubs, she was an older, maternal-looking woman with rich, almond eyes.

  “She is, isn’t she?” I returned, managing a shadow of a smile.

  “You know, she never cries. Always peaceful-like. Talking to the angels, I suppose. Do you call her Isabella?” the nurse queried.

  I hesitated. Saying her name always brought tears to my eyes. “Isabella. Isabella Maria. That’s her name, but we call her Bella.” I choked.

  The nurse’s face lit up, and she smiled. “Bella. Now, that fits. I know that means ‘beautiful’ in Italian! Beautiful.”

  “Yes. She is that.” I smiled at her more fully this time. “Thank you.” I paused and continued watching my sweet Bella. “You know, I love her like I’ve known her forever. Time doesn’t really count when you’re talking about love. I want to tell her that, to look into her eyes. I bet they’re beautiful too.”

  Walking over to stand at the isolette with me, the nurse gazed at Bella, who was waking up. It was almost dawn now, the beginning of her eighth day of life.

  Turning toward me, the nurse said softly, “Would you like to hold your baby girl, your Bella?” She didn’t need to hear an answer. I looked at her, though I thought her words too good to be true. Every chance we had to hold Bella was a great gift and blessing. The whole family held her every day despite all the tubes and wires, and every day I tried to nurse her. Tears filled my eyes as I nodded. I was going to hold my Bella again; that basic maternal instinct would be satisfied once more. I woke Rick. He was groggy but didn’t want to miss any moment when we had the chance to hold Bella. The nurse opened the door on the side of the isolette. After fiddling with the probes and wires, she bundled Bella and took off her eye mask.

  Bella opened her eyes. They were a beautiful blue and fringed with long, dark lashes. Angel eyes. My breath caught in my chest as I beheld them. Those piercing blue spheres locked with my own. I was utterly captivated, breathless. Lifting her from the bed, the nurse placed her into my arms. My left hand cradled her while my right reached to touch her face, her hands. She was so light, her skin pink and soft. Nose like a dewdrop, and dark hair that was fine, silky, and curly. Flush cheeks with rosy little lips. She was like a porcelain doll.

  I held her left hand with one of my fingers. Those five beautifully formed fingers grabbed mine so tightly. When her fingers were holding mine, she didn’t hold them in the way that had identified her condition. Together, we were whole. I drank in every detail of her. Her gaze was mixed with love and a sense of knowing. Thank you for loving me. I love you. Hot tears rolled down my face, tears of joy. Her eyes searched me, focusing on my face as I leaned in closer to her. Bella’s right hand reached upward, though not sporadically, as is typical for an infant. I lowered my head, and her hand touched my cheek. My breath caught in my throat. Tearful laughter. I closed my eyes as I felt her warm little hand on my skin.

  I suddenly realized Rick had been holding me, his steady hands supporting me in these fragile moments. I opened my eyes and whispered, “I love you, Bella. I love you.” I don’t know how many times I repeated those words or how long we sat there. Together, we were suspended in time. I ne
ver wanted those moments to end.

  In all those precious moments with my little girl, something changed in my heart. I experienced the joy and the love that she brought to us, and that tuned out the improbable statistics. I focused on the gift of my baby girl and the hope for her life. Clarity came when I saw those blue eyes. Soon, we would learn the impact of the gift we had received; soon, Bella would come home.

  As we were preparing for Bella’s discharge, I noticed we were being sent home without a prescription for oxygen, even though Bella needed it with her feedings. Unfortunately, Dr. Iceman was the doctor in the NICU at that time. Approaching him, I asked if we could please have a prescription for oxygen so Bella could get through her feedings.

  “I just don’t think it’s necessary. You have to learn to let go.”

  My fists clenched as I exhaled. Being able to feed our baby was undoubtedly “necessary.”

  Rick took a big breath as if he were going to scream and slowly said, “All we’re asking for is oxygen.”

  I went on to say, “Doctor, I’m happy to talk to the other doctors in the NICU or the hospital management, because we both know Bella needs oxygen when she’s trying to nurse. We’re not leaving here without a prescription for oxygen.”

  Eyebrows arched, he pursed his lips as he reached for his prescription pad.

  During our last day in the NICU, Bella’s geneticist, Dr. Ken Rosenbaum, talked to us once again about the devastating statistics pertaining to Trisomy 18 infants. My heart heavy and cold, I heard but hardly listened anymore. I’d heard the bleak statistics. Again. And again. Then he surprised me: “There is hope.”

  Hope. I raised my eyes and felt something different from cold numbness or hot anger. He smiled softly at my reaction, leaned forward in his chair, and told us what we desperately needed to hear: “Bella will write her own book, and I hope it’s a good one.”

  2

  LOVE NECESSITATES TRUST

  • Rick Santorum •

  Cast all your anxieties on him, for he cares about you.

  —1 PETER 5:7

  I stood just off the stage at the Republican National Convention. I was about to walk out to speak to thousands in the arena in Tampa, Florida, and millions around the country, and all I could think about were her hands. I closed my eyes and I saw them, so soft and dainty as I stood next to Bella in the isolette in the neonatal intensive care unit the day she was born. I had stood not only as a father soaking in a precious moment with our beautiful little girl, but also as a detective looking for evidence. There had to be some clues. The doctors had been sure for months something was wrong, but they couldn’t identify it.

  The daydream was abruptly broken with the words: “Ladies and gentlemen, former senator from Pennsylvania, Rick Santorum.” That was my cue.

  The main theme of the speech was restoring the American dream. I concluded by reflecting on my interaction with Americans during the course of my 2012 presidential campaign.

  As my family and I crisscrossed America, something became so obvious to us. America is still the greatest country in the world—and with God’s help and good leadership, we can restore the American dream. Why? I held its hand. I shook the hand of the American dream. And it has a strong grip. I shook hands of farmers and ranchers who made America the breadbasket of the world. Hands weathered and worn. And proud of it. I grasped dirty hands with scars that come from years of labor in the oil and gas fields, mines, and mills. I held the hands that power and build America and are stewards of the abundant resources that God has given us.

  I gripped hands that work in restaurants and hotels, in hospitals, banks, and grocery stores. Hands that serve and care for all of us. I clasped hands of men and women in uniform and their families. Hands that sacrifice and risk all to protect and keep us free. And hands that pray for their safe return home. I held hands that are in want. Hands looking for the dignity of a good job, hands growing weary of not finding one but refusing to give up hope.

  And finally, I cradled the little, broken hands of the disabled. Hands that struggle and bring pain, hands that ennoble us and bring great joy. They came to see us—oh did they come—when they found out Karen and I were blessed with caring for someone very special, too, our Bella. Four and a half years ago, I stood over a hospital isolette staring at the tiny hands of our newborn daughter, whom we hoped was perfectly healthy. But Bella’s hands were just a little different—and I knew different wasn’t good news. The doctors later told us Bella was incompatible with life and to prepare to let go. They said, even if she did survive, her disabilities would be so severe that Bella would not have a life worth living. We didn’t let go, and today Bella is full of life and she has made our lives and countless others’ much more worth living.1

  That speech was given after four years of wonder, delight, trial, and anxiety—four years of living with and caring for an oh-so-fragile living miracle. But when I stood next to her in the NICU shortly after she was born, I had a different set of experiences to draw upon that shaped my understanding of the situation. This was not our first rodeo. Karen and I had already ridden this bull, been launched into the air, then trampled on the ground, and it had left its mark on us.

  Almost twelve years before, I had stood next to Karen at a hospital in Pittsburgh, awaiting the birth of our fourth child. This was nothing, however, like the three previous births. The little boy on his way into the world was not ready to be born. He was just past the halfway point of developing in Karen’s womb, and we knew his lungs were not mature enough to survive long. Yet that was his fate, and we were powerless to save him.

  The saga had begun a couple of weeks before his birth as I stood next to Karen in another medical facility, as the sonographer was going back and forth with her wand over Karen’s abdomen. Karen and I had brought our three children—Elizabeth, John, and Daniel—to see the newest member of our family. It was a routine twenty-week exam, and we were excited to learn whether we were having a boy or a girl. The kids had their preferences, but the standard answer for us was “happy and healthy!”

  I noticed the sonographer was looking at one particular area over and over again, so I asked if there was a problem. Her response was less than reassuring. “The doctor will review the results with you when I’m done,” she said.

  A few anxious minutes after she left the room, the doctor returned, and, with a few words like “Let’s see what is going on here,” he moved the wand around to that same area. Again we asked whether there was a problem. After a few moments, he turned to us and said, “Your son has a fatal birth defect and is going to die.”

  So much for bedside manner.

  Through all the emotions that spilled out during the next twenty-four hours, we focused on two things. First, giving him a name. We weren’t about to let doctors, our friends, and prayer partners refer to him impersonally as “Baby Santorum.” Our child was not going to be an “it” or just a “son”; he was every bit a part of our family as were the other children. His name would be Gabriel Michael, after the two archangels.

  Second, we were determined to do everything possible to give him a chance to survive outside of the womb. Karen and I fought side by side, talking to every possible doctor and specialist to find somebody, somewhere, who could waken us from our nightmare and treat our son’s condition. We ended up in Philadelphia, under the care of a brilliant and exceptionally skilled surgeon, Dr. Scott Adzick, where Karen and Gabriel underwent intrauterine surgery to save his life.

  Miraculously, it worked! The doctor said that although Gabriel was not out of the woods by any means, he should have a good chance to survive the pregnancy. He also said that, as with all surgeries, complications could occur. He focused on the one they always warn you about when you have surgery—infection. His orders were quite emphatic: “If Karen’s temperature starts to rise, go immediately to the closest hospital.”

  We went on with life, believing we had dodged the bullet, that our fight had given us a much-deserved victory. The ver
y next day we headed to Pittsburgh for Karen’s parents’ fiftieth anniversary party. The following day I was in the car, heading to Erie on Senate business, when my mobile rang. It was my sister-in-law, Nancy Garver. With her voice cracking with emotion, she said, “Rick, turn around. You need to get home; Karen has a high fever. I am so sorry. I am so sorry.”

  We all knew what that meant. The womb keeping Gabriel alive was dying. The surgery had caused an infection in Karen’s womb, and the infection would kill her if it weren’t treated. When we arrived at the hospital, Karen was already in labor, her body doing what it had to do to survive. The physicians in Pittsburgh confirmed what we were told in Philadelphia: the only way to stop the infection from killing Karen was to let nature take its course and deliver little Gabriel. He was not even twenty-one weeks, and even without all his complications, we both knew that delivery meant death for our son.

  It was the worst night of my life, trying to comfort my dear Karen, delirious with pain, while she pleaded with me not to allow Gabriel to die, to let him be born. Our dear friend Monsignor Bill Kerr, at the time the president of La Roche College in suburban Pittsburgh, was at Karen’s bedside through the night, comforting us. As the night went on and Karen’s fever subsided, we were able to convince her that she was doing all God would ask her to do—to be the best mother she could be for as long as she could.