Bella's Gift

by Rick Santorum

  I felt God was putting me to the test. After going through a period of vacillating between disbelief, anger, and a resolve to fight, I had an epiphany. It struck me what an amazing opportunity God had given us. It was no coincidence that I had led the debate on partial-birth abortion a week before this sonogram. It was no coincidence that children with disabilities were being used to justify that procedure. And it was no coincidence that I had mentioned our soon-to-be-born baby as an example of accepting all God’s children into our human family, no matter what their condition.

  I thought maybe this wasn’t a test at all but the perfect opportunity for God to show the way. He was going to use Gabriel’s condition as a sign for the world that He loved every baby in the womb. I was convinced God was going to save Gabriel’s life so I could tell the miracle of His love not just for the unborn but also for the disabled.

  We were encouraged that the doctors could surgically fix Gabriel’s condition in the womb. They cautioned, however, that, should Gabriel survive in the womb long enough to be born, they weren’t sure he could survive outside the womb. And if he did, he would have serious health issues involving constant care, expense, and stress. I was ready for a miracle, but was I ready for all that Gabriel’s life could bring?

  Frankly, I never faced that possibility in my mind. I was convinced Gabriel was going to be the miracle boy. I could see God’s hand everywhere in this saga. He was not going to pass up the chance to let the world know of His glory!

  I dove into my plan for God’s glory, but there was no water in that pool. Gabriel died, and with him, my plan for revealing God’s glory.

  As God revealed His plan through Karen’s book Letters to Gabriel, I saw how faithful He had been in the end. I also saw how living through this pain of having a baby in the womb with a severe problem gave me a powerful personal witness to share. The abortion debate was now very personal. It spurred both a passion and compassion. Passion to defend what I now knew firsthand—that child in the womb is one of us, part of our human family—and compassion to help all the wounded women with unplanned pregnancies who had believed the lie of sexual freedom without consequence.

  I championed every pro-life bill in the Senate for the next twelve years, including the passage of the Unborn Victims of Violence Act and the Born-Alive Infant Protection Act. I fought for funding for pregnancy care centers that provide care and support for pregnant women in a crisis situation.

  To me the pro-life debate was about abortion first and foremost. Then Bella arrived on the scene to teach me a whole new dimension of the issue.

  As I previously mentioned, I was horrified that senators wanted to keep late-term abortions legal so parents could kill their children if they found out they were disabled. As the lead sponsor of the bill, I was bombarded by letters from parents of disabled babies in the womb who were outraged because they had to go to multiple hospitals to find both an obstetrician and a hospital willing to deliver their babies. Most reported that the hospitals were more than willing to do an abortion but didn’t want to risk the legal liability of delivering a child with severe health complications.

  As we became more involved with the pro-life issues, we discovered the battle is also waged at the bedsides of the very sick and disabled. It is one thing to know of parents fighting to get care for their babies or trying to find professionals to deliver their babies; it is another to be a father afraid to leave his child’s side for fear of what may happen when he is away.

  George W. Bush made the case for education reform with a devastating line that put the educational establishment on its heels. He referred to the lax attitude and standards of education professionals for minority and poor children as the soft bigotry of low expectations. When it comes to medical professionals and children in the womb with severe mental or physical disabilities, the soft bigotry of low expectations for the disabled is often deadly.

  The culture of death is everywhere. Not that the hospitals are crawling with evil mercy killers, but rather, with many people who value human life according to what a person is able to do, rather than on how he or she can love and be loved. Bella, like so many other people with severe disabilities, can’t “do,” but she is loved, and we are especially blessed that she can love. What is more valuable than that?

  5

  LOVE THROUGH CHANGES

  • Karen Santorum •

  One sees great things from the valley;

  only small things from the peak.

  —G. K. CHESTERTON

  Ten days after she was born, Bella came home from the hospital. Outside the hospital walls, the sun was shining. The weather seemed to be God’s way of welcoming us home. I’ll never forget fitting Bella’s tiny body into her car seat. She seemed lost in the infant seat, with her curly-haired head nestled in the preemie head support. Looking at her bewildered expression and wide eyes, Rick and I smiled. As she tried to stretch but couldn’t seem to move in her little coat, we laughed for the first time since her birth. It felt good to hope. Our little girl was coming home. She had graduated from the NICU. She had survived the combat zone when no one thought she would. No one except us.

  Although usually a lead foot in the car, Rick drove slowly. Coasting over the bumps, he took care to make sure Bella wouldn’t wake up. As I watched scenes of office buildings change to trees and sky, I exhaled. I inhaled. The May air was fresh, not sterile or tinged with rubbing alcohol. I heard the hum of the engine and the silence of my own thoughts. Spring was changing to summer. Closing my eyes, with the sun warming my face through the window, I felt like a bird just out of a cage. Fresh air and sunshine were the perfect medicines to begin healing my brokenness.

  When we arrived home, we heard pounding footsteps from upstairs and squeals of joy. “She’s home!” All the children were there to welcome their sister. As they rushed into the hallway, they beheld her. Their animated excitement turned quickly into hushed, awe-filled whispers. The little boys started tiptoeing closer, eyes wide with anticipation. Gathering around her, they were all mesmerized.

  Bella had fallen asleep in the car but had begun to shift and awaken to the sound of their voices. A pink hat hid her curly hair, and her rosy skin lay against the soft, downy blankets surrounding her. Such serenity. We watched as her long eyelashes batted awake, revealing her sea-blue eyes that moved to take in all the faces surrounding her. Sarah reached and grabbed Elizabeth’s hand. Caught up in the moment, I felt a knot forming in my throat and then Rick’s arm around me. Strength returned to my limbs.

  Above the doorway to our family room, our children had hung a huge, colorful birthday sign, lovingly decorated with crayons. It read, “Happy 1-Week Birthday Bella!” The kitchen table was covered with cards, frosted pink cupcakes, balloons, and, of course, pink roses. Bella quickly roused from her nap as she took in all the excitement. The children took turns holding her. They were all so gentle, tender, and loving as she was placed in their arms. Swaddled and drowsy, her yawns stirred choruses of “aah” from all, even the older boys.

  All the children had visited with Bella in the NICU and had held her many times, but now they had the luxury of holding her for longer than a few minutes and without all the tubes and wires. Elizabeth, who had just celebrated her seventeenth birthday, was old enough to understand the implications of Bella’s diagnosis. She appeared strained, heavyhearted, and lost in thought as she stared into the eyes of her goddaughter. Her eyes welled with tears as she told me that she was so grateful for her little angel, no matter how long she would be with us. Our fifteen-year-old, John, reacted differently. He was nervous about holding her and offered to go last. He later told me he was afraid of breaking her because she was so small.

  Daniel, who was twelve, couldn’t stop looking at Bella’s toes and fingers; they were delicate and small as a doll’s. Considering his big heart and quiet demeanor, it was little surprise that Peter tried to hold Bella the tightest. We had to remind this sweet ten-year-old that she was fragile, but he just loved her so
! Our youngest boy was Patrick, age six, and he glowed with the pride of a newly crowned king. He had joined the ranks of the “big brothers” and was entirely pleased with himself. He wanted to hold her for the longest, and he talked to her about all the scary things he would protect her from: dragons, bears, and piranhas would never touch her.

  Later on, our dear friend Susie came over to take a family picture of us. She was a steadfast and devoted friend who was such a great blessing to our family during this painful time. Gathering the kids, we went outside and snapped away. I remember the beauty of that spring day: the garden in bloom, the earth alive again, and the smell of honeysuckle. The heat felt welcoming as its tender touch soothed me. I had been cold for so long.

  Taking a family picture is not an easy feat when you have seven kids to organize. Nonetheless, the family picture we took that day would become an important memory for us. Every physician we spoke to had said that Bella would surely die after a few days. If we were exceptionally lucky, they had said, she would live for a month. With those words ringing in my ears, I wanted a moment to capture our family while Bella was with us.

  Click. Flash. Stop. The boys were in their worn T-shirts and shorts, so we had them change into something a little better and brush their hair, something I need to remind my boys to do. We went outside, where the sun was shining, and fumbled around trying to best arrange the kids. I sat in the middle of the outdoor couch, holding Bella. Sarah, Peter, and Patrick crowded next to me, eager to be as close as possible to Bella. Daniel, John, Rick, and Elizabeth stood in the back, all leaning in toward Bella.

  Everyone was happy that we were having this family picture taken but simultaneously fearful that it would someday become a sad reminder of a fleeting period of time, a time when Bella was briefly with us. The treasured picture captured our exhaustion but also our joy, hope, and gratitude.

  Even though Bella was our eighth baby, our anxiety made it seem as if she were our first. In a very real sense, we were new parents. We learned how to perform newborn care differently, more carefully, more thoughtfully. Because Bella could not nurse, I rented a pump so she could benefit from the nutritional benefits of my breast milk. We tried lots of different bottles and nipples made specifically for special-needs infants, but she got dusky every time she tried to take a bottle, because she could not suck and swallow properly. We even tried giving her oxygen when she fed, which helped, but she still wasn’t able to eat enough through a bottle to sustain her. So she received her mother’s milk through a nasogastric tube that went through her nose and down into her stomach. Breastfeeding was always so important to me, and it made me happy to know that Bella was healthier because of it.

  Details were everything, and prayers timed all Bella’s feedings. We were getting to know our Bella, her issues, and how best to take care of her. We were with Bella around the clock and watched her constantly. There were always treatments to be given and medical supplies that needed to be washed. As much as my experience as a NICU nurse helped, this was a skill set I had never dreamed I would need to use for my own baby.

  Though her care was extensive, Bella was not “sickly.” In fact, she acted like a normal, sleepy, newborn baby. She was a preemie, but she was growing. Other than her little fingers, only a geneticist would notice the other outward manifestations of her rare condition. We told the children that Bella was not sick; she was just made in a different but very special way. We took care of Bella as we did our other infants; we just fed her differently.

  At her one-month birthday, Bella weighed five pounds, five ounces. We were proud of that simple, yet important, milestone. With her putting on weight and allowing us to measure her life in months, not weeks, we had many reasons to be hopeful. The night before this birthday, we took her to our church for the first time. In the presence of our Lord, we gave thanks for her life and resolved to continue treasuring each day with our angel.

  My dear family was there for us every single day, delivering gifts, talking, praying, and helping us in every possible way. My friends Katy, Nadine, Jennifer, Leanne, Chris, Mary, Muriel, Kathy, Melanie, Laura, Katie, and, of course, Susie were all there for us. They made meals, brought Bella the sweetest baby gifts, and sat and talked. The love and support we received from our family, friends, and church community helped to strengthen and fortify us during this challenging time.

  Rick wrote an e-mail on the night of Bella’s one-month birthday to thank our family and friends for praying for her during her first month of life and for being there to help us. We thanked people for celebrating her life with us and for contributing to our miracle by sustaining us through prayer and support. He shared the story of how I had contacted Archbishop Chaput after hearing his homily where he mentioned our family and Bella’s birth. He told me that after Mass, a woman came up to him and said she had an eleven-year-old daughter with full Trisomy 18. Her home parish was called Our Lady of Fátima—Bella’s confirmation name. Rick explained that it was stories like this that had helped us keep the faith and fight the battle. Our God is a God of miracles.

  We held a huge celebration for Bella’s one-month birthday. Actually, it was a huge celebration in our hearts! Concerned about germs, we had a simple party with family and friends. I always say I’m so blessed to be walking through life with my family. It’s a great comfort going through everything together with family, and many of our friends have shared the journey of life with us for a very long time. We have had our babies together; prayed together; celebrated baptisms, first communions, and confirmations; done sports and piano recitals together; gone on retreats together; and shared all the ups and downs of life.

  God blessed us with such dear family and friends on this journey of life. Bella’s one-month birthday was a joyful celebration. We had food and wine and toasted to Bella’s life. We had a strawberries-and-cream cake with pink frosted roses for Bella, and almost seven years later we still have the same cake for Bella at every celebration for her. She has her own signature cake!

  We built a life that summer based on new hopes and small milestones. This was the summer of simple pleasures like neighborhood walks and baseball games. Peter and Patrick were playing Little League baseball, and Rick was their coach. Their team played well that year, and I had missed watching them play, so we packed up Bella and brought her to a few games.

  Bella’s diaper bag was unlike any other diaper bag. It was like a physician’s bag filled with gauze, syringes, tubing, and a tiny portable pulse oximetry finger probe. Standing away from the crowded bleachers, under the shade, I swayed her back and forth. Smelling clipped grass and cooking hamburgers, I smiled as I gratefully shared these peaceful moments with my little one. She was dressed in a pink dress and a sunhat as I cradled my little love tenderly. This was one of the first outfits I had bought her that wasn’t a preemie size. Her wearing it was a little milestone. It sounds silly, but I was proud of her. Maybe she knew. I smiled as she cooed sweetly to herself. She loved to coo when she was drowsy, singing herself to sleep.

  Peter was a catcher, and as soon as he saw me standing there with Bella, he took off his mask and grinned. Patrick spotted us from the outfield and almost ran over during the game! Rick waved him back, reminding him to keep his eye on the ball. I laughed at their sweet reactions. Peter and Patrick lost the first game Bella attended. We think they might have been a little distracted, but we had our own victories to celebrate.

  Since arriving home, Bella always loved being outside. She responded to the warmth of the sun and the soft breezes. We went for walks every day, and Bella loved the birds’ songs. When she heard their sweet melodies, her little legs kicked and her eyes lit up. Occasionally, she liked to sing with them, cooing and squealing her own little harmony. The walks were good for her and therapeutic for me. Frustrations and concerns were left on the side of the road.

  Since being in the NICU, Psalm 23 had become my constant prayer. As I walked, I would thank God for bringing me out of the dark valley and into the light. We held B
ella, sang to her, rocked her, and gave her massages. She especially loved foot massages. We would nestle her in a pillow and rub each of her feet with lavender oil while listening to the sounds of whales on her Sleep Sheep. Her feet were so tiny we only needed to massage them with one finger. Inevitably, she would relax and quickly drift off to sleep.

  As she grew out of the sleepy newborn-baby phase, Bella began to interact more with us. She loved to laugh, particularly if the boys tickled her tummy or chin. She’d pull her arms to her sides, tuck in her chin, and giggle until the boys relented. Afterward, she’d inhale and exhale very deeply, like any dramatic little sister.

  During these first crucial months, our family, friends, and church community showered us with love, prayers, and support, active witnesses to the embracing body of Christ. They brought meals to us every day for a few months. They prayed for us, sent gifts and flowers, and helped with the children. There’s something very soothing about a delicious home-cooked meal with warm, homemade bread. It was comforting to gather as a family around the table for a meal that neither Rick nor I in our exhaustion would have been able to prepare.

  All these little changes helped me quickly learn that we were in a new phase of life. From the moment we brought Bella home from the NICU, one of my greatest challenges as a mom had been to make sure all my children had some “mom” time every single day. Taking care of a special-needs baby can be all-consuming, but I was the mother of seven children and needed to take care of every one of them. Night after night I would lie awake in bed, trying to process everything, and wonder how on earth I was going to do it all: sports, music lessons, playdates, plays, parent–teacher conferences for the kids who were in school, and homeschool lessons for the children at home. The list went on and on in my mind.