Bella's Gift

by Rick Santorum

  When we brought Bella home from the NICU, a dear friend of ours, who has a special-needs child, told us that this time would be hard on our marriage if we did not hold tight together. She said to never forget that “you are husband and wife—you are lovers.” Rick and I promised each other the gift of time to nurture our marriage every day. Whether it was a walk through the neighborhood, a drink on the porch, or reading together around the fire, we actively planned time to talk with, listen to, and love each other.

  And so, when our special girl entered into our lives, we continued to do what we had always done; no matter what the day might bring, Rick and I make time for each other and take care of each other. “I will seek him whom my soul loves” (Song 3:2). This promise has made all the difference in our marriage. Bella has made our marriage even stronger. All the ups and downs of life have made us closer and have deepened our unity and love for each other.

  When Bella was two and a half months old, her pediatrician told us she would need a feeding button. Bella was taking some breast milk by mouth, but not enough to sustain her. Most of her nutrition came through the nasogastric tube, but as Bella got older, she began to pull on it. We were concerned about her aspirating if she suddenly pulled out the tube during a feeding. We met with two local physicians who performed this type of surgery, and they both said our baby would never survive the surgery. At both appointments, I reminded the doctor that my baby’s name is Bella, but that did not seem to matter, and they did not refer to her by name. Their reactions told me that because of Bella’s diagnosis, they weren’t even considering the surgery.

  To them Bella was a liability, at best, and, at worst, she simply wasn’t worth the effort. These appointments were definitely momma bear moments. I knew that I would never think, even for a moment, of putting my dear baby into their care. If the physician believed Bella would not survive the surgery, then the outcome could likely be just that. I wanted a physician who was positive and believed in Bella and hoped for her.

  When Jesus was here on earth, He healed the sick. He did not disregard them or throw them away or say, “You will have a poor quality of life, so I will not care for you.” Rather, Jesus said, “Go and tell John what you hear and see: the blind receive their sight and the lame walk, lepers are cleansed and the deaf hear, and the dead are raised up, and the poor have good news preached to them” (Matt. 11:4–5). The apostle Mark wrote of Him, “He has done all things well; he even makes the deaf hear and the dumb speak” (Mark 7:37). It was the weak, the fragile members of society, whom Jesus made the focus of His care and attention. “So the last will be first, and the first last” (Matt. 20:16).

  The Gospel of John describes Jesus healing a blind man: “As he passed by, he saw a man blind from his birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘It was not that this man sinned or his parents, but that the works of God might be made manifest in him’ ” (John 9:1–3). During that time in Israel, people assumed that such afflictions were brought on by sin or uncleanness. Jesus made it clear that no one was responsible for the man’s blindness; rather, he was blind so that God’s providence could be shown through him. Like the blind man, Bella is here so that “the works of God can be made manifest in [her].” God has a plan for Bella’s life. There is a reason why Bella, and all of us, are made in such unique ways. God has a purpose for all of us.

  The verdict from the icy people who called themselves physicians left me with a heavy heart, and I stayed up all night crying as feelings of devastation overwhelmed me. Even the smallest challenges of Bella’s care sent me into dead-end alleyways. I had to and I wanted to scale walls to care for her. And I was exhausted. My heart was weary, pushed to the breaking point.

  In those moments when the soul is stripped of hope, the frantic desperation one feels is akin to Job-like madness. Venturing into uncharted, stormy seas, my vessel was my faith, and it separated me from the sea of madness and sorrow. In different moments, I resented the vessel for not being strong enough to calm the storms.

  The day after our appointment with the last doctor we had visited, Rick helped me pick up the pieces. Together we were resolved and strong. We would find a team of physicians to care for Bella. After all, we would never put our child into the hands of physicians who didn’t see her as a valuable, beautiful life. Rick and I called Dr. Scott Adzick, a friend of ours at the Children’s Hospital of Philadelphia (CHOP) and one of the most impressive surgeons in the world. He is kind and compassionate. He recommended Dr. Thane Blinman, a brilliant surgeon who has spent years perfecting many surgeries laproscopically.

  Dr. Blinman could not have been nicer, and he referred to Bella by name. This sounds like such a small detail, but in the world of people with disabilities, a name gives hope. He acknowledged her life, her person, and gave her value by saying her name.

  Dr. Blinman wanted to know about Bella and her needs, something the other doctors had never even asked. At the end of a long and compassionate conversation, Dr. Blinman said he had several Trisomy 18 patients and believed Bella would do really well. And she did. Bella had the surgery at CHOP when she was three months old, and there was no problem getting her on or off the ventilator, no infection, and no problem with her feedings. Dr. Blinman did the surgery laparoscopically, and in one procedure Bella had the feeding button in place. She was home in two days. Bella is almost seven years old now, and she’s never had an issue with her feeding button.

  Until Bella was five, we went up to CHOP every three months and then every six months since. Bella sees all her physicians and her nutritionist, Robin Cook, whose cheerful demeanor always made our visits with her so pleasant. She would quickly calculate Bella’s nutritional needs, giving us guidance with every detail of Bella’s feedings, such as vitamins, minerals, fiber, calories, and fluids. Dr. Blinman and Robin work together with us on Bella’s nutritional needs. Dr. Blinman’s disarming sense of humor and Robin’s vivacity still light up the hospital room. Both Robin and Dr. Blinman have played pivotal roles in our journey with Bella, and we are so grateful to know them.

  At CHOP, the doctors approached Bella optimistically, with compassion and respect. While other doctors said Bella would never talk or walk, physicians at CHOP said, “Bella communicates well with her eyes and facial expressions. She has good muscle tone and, with the proper therapy, may be able to use a walker.” While local doctors told us Bella’s face was abnormally small and would give her breathing problems, doctors at CHOP said Bella was beautiful and her sweet face was petite. They told us they could help her breathe better.

  While other doctors commented that her mouth was too small, a doctor in CHOP’s PICU told us that she loved Bella’s little mouth and would find an oxygen mask that fit just perfectly. Not only did they see her beauty, but they also recognized her potential and wanted to help her reach it. While other doctors were saying there was no hope, CHOP physicians were saying to just give her a chance.

  Almost seven years have passed since Bella’s birth. Nearly seven years since we received the crushing diagnosis of Trisomy 18. Virtually seven years since those words “lethal diagnosis” and “incompatible with life” were coldly spoken by the doctor and burned into our hearts. Was it a slip of the tongue? Maybe the doctor just didn’t think before he spoke. Maybe he just didn’t realize the huge impact his words would have. After almost seven years, they still disturb me and echo in my mind as if they had just been spoken.

  As the mother of seven children, I know how powerful words can be, and I tend to obsess over which words I use in various situations with my children. “Pleasant words are like a honeycomb, sweetness to the soul and health to the body” (Prov. 16:24). Words can affirm, encourage, and inspire, or they can frustrate, degrade, and build anger. Through the years I have known what it means to my children when I encourage and validate them with positive words. I have read parenting books about how our words will have lasting effects on our children, and I
regret the times I have carelessly spoken without thinking. I know all of us have said things we wish we hadn’t.

  These doctors, however, seemed to have no remorse over the toxic words they used. Maybe they had taken the line right out of a medical book or their medical school professors had used these words.

  When Bella was three and a half, she was hospitalized for pneumonia. A few days into her stay, she was sitting up in her bed, playing with her toys. A young physician who had been assisting in her care stood at the foot of her bed. He was watching Bella, and she looked up at him. She kept smiling and giggling. I looked over at this tall, athletic physician and was surprised to see tears running down his face. When I asked if he was all right, he said, “I didn’t know kids like Bella existed. All we were told in medical school was kids with Trisomy 18 never lived. I feel so lied to.”

  I wish that doctors, like parents, would choose their words more carefully and understand that when they say “lethal diagnosis” it can too often lead to deadly outcomes. “Death and life are in the power of the tongue” (Prov. 18:21). God Himself instructs us to use caution with the words we choose to use.

  Rick and I are not alone in this experience. During the past seven years, I have become immersed in the world of Trisomy parents and their children. I frequently talk or correspond with parents. I have read every article and watched every video I could find. What I have learned is that doctors always refer to Trisomy 18 infants as having a “lethal diagnosis” and always say that the children are “incompatible with life.” All the Trisomy 18 parents I have spoken with have faced this same battle. The only place where we did not hear Trisomy 18 referred to as “lethal” or “incompatible with life” was at the Children’s Hospital of Philadelphia.

  When parents hear the word lethal, it places fear into their minds and gives them a sense of hopelessness. When we watch the nightly news, we hear about people dying from lethal attacks, lethal weapons, and lethal drug doses. In all those situations, the people are already dead, and we are learning about what lethal thing killed them. To refer to a child who is still alive as having a “lethal diagnosis” is grossly inaccurate; many children who have Trisomy 18 survive and thrive, even into adulthood.

  The tongue of the wise dispenses knowledge,

  but the mouths of fools pour out folly.

  A gentle tongue is a tree of life.

  (PROV. 15:2, 4)

  Moreover, any good physician knows that a thorough patient exam and evaluation is necessary to make an accurate diagnosis. After reviewing the patient’s history and analyzing the tests and labs, then a physician can come to a conclusion. Making a diagnosis should be a thoughtful process. Sadly and too often in the Trisomy world, a physician will get the Trisomy 18 results from an amniocentesis or blood tests and quickly write the child off without any further evaluation as to what his or her issues are. It’s a sweeping assumption that is careless and irresponsible.

  Trisomy 18 is a serious diagnosis, but physicians need to first look at their patients and see what the issues are before disregarding the infant and eliminating all hope. If they fail to do this, they abandon their patients and should not be practicing physicians. Patients deserve better. A friend of mine once said that “the MD after their name does not stand for ‘Medical Deity’!” I wish doctors would realize they should not be playing God.

  What follows after a Trisomy 18 diagnosis is the long, drawn-out, bleak list of what the child will surely suffer from and will not ever be able to do. It’s the “will never” list. Rick and I painfully sat through the “will never” list many times, hearts heavy, but hopeful that Bella would prove them all wrong. We were told Bella would never sit up, never walk, never know us, never talk, and that she would be a vegetable who would never live past a month at most. But, essentially seven years later, Bella does know us. She plays with her toys and frequently looks up and smiles. She is a spunky girl who loves being silly and making everyone around her laugh. She has her favorite music that she loves listening and dancing to, and she loves books.

  Bella walks all the way across the kitchen floor in her walker. She works hard at walking and knows she’s done something great when we tell her how proud we are of her. She may not speak English, but she speaks “Bellish” quite well, and we always know what she’s saying. Like any of our children, Bella is her own unique person and will do things in her own way, in her own time. We think she’s perfect and love her just the way she is! But the fact is that what Bella (or any other person with special needs) “can do” does not determine her value. What truly matters is that Bella and other children like her are all created in the image of God. My prayer is that they be treated with love, dignity, and respect, not dismissed and left to die.

  The summer of 2008 was the summer of small miracles: firing hospice, Bella’s g-button surgery, and figuring out how to balance family life. These small miracles were wondrous affirmations of God’s compassionate hand acting in our broken world. C. S. Lewis wrote, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”

  As the summer months went by, the “Happy Birthday Bella” sign still hung in the doorway. Determined to make every minute count with Bella, we recognized those moments as pure gifts and worthy of joyful, grateful celebration. As the weeks went by, we changed the birthday sign from one to two to three weeks. Eventually weeks turned into months and months turned into years. Bella continued to beat the odds. Hope endured. Bella’s story is small and simple, but perhaps that purity makes it possible for us to see the miracle of her life. Her large life is written in small letters.

  7

  LOVE IS HEROIC

  • Rick Santorum •

  Heroism is endurance for one moment more.

  —GEORGE F. KENNAN

  When I hear the word heroic, my mind conjures up images of a soldier single-handedly taking out an enemy position or those New York City firefighters rushing into the World Trade Center on September 11.

  Webster’s Dictionary defines heroic as, among other things, “brave, courageous, extremely noble and self-sacrificing.”

  To some degree, all parents engage in acts of heroism in raising their children, because we disregard our own desires to meet their needs. The superhero in our house under that definition is Karen, the love of my life and my wife.

  When I met Karen, she was a second-year law student who was working part-time as a nurse. She graduated from law school a week before our wedding with a job in hand to clerk for a federal judge in Pittsburgh. She delayed the start of the clerkship to knock on doors with me in what every political observer, and I mean every one of them, believed was a quixotic run for US Congress.

  After our miraculous win, Karen was all set to start her legal career. Unfortunately, just after the election the federal judge rescinded his offer to Karen. It turned out the judge, who was a Democratic activist before being appointed by the court, was a good friend of the congressman we defeated. Since he approved her delayed start until after the election, we assumed he was going to honor his offer. It turned out the offer was good only if I did what he expected of me—lose.

  You might be thinking, no big deal. She was a law review graduate of a well-respected law school in town, the University of Pittsburgh, plus the wife of a congressman. Piece of cake! That may have been true if it weren’t for her physical condition. We had found out just before Labor Day that Karen was expecting our first child, Elizabeth.

  Karen wanted to continue working until the baby came. Back then, Pittsburgh was a tough town for women in the workplace, much less pregnant ones, even tougher on Republicans, and toughest yet on the wife of that conservative upstart, Rick Santorum.

  We decided that after a grueling election, my starting a new job that would take me out of town three days most weeks and getting ready for our first child in that environment would max out the stress meter.

  And so it was, from the very b
eginning of our marriage, Karen put her professional dreams on hold to put family first and help me pursue my calling. That was only the beginning. She was an integral part of two campaigns for Congress, three campaigns for the United States Senate, and a national election for president, during which we personally campaigned in twenty-five states before exiting the race.

  She not only held down the fort, but in several of the campaigns—particularly our first race for the House and even more so during our first Senate race—she hit the campaign trail. In 1994 the biggest issue in our campaign was health care because my general election opponent was the Senate sponsor of “Hillarycare.” Karen was a neonatal intensive care nurse with a law degree, with an emphasis on health law. She turned out to be our secret weapon, traveling the state and giving her strong and well-grounded arguments against government-run health care.

  Then there was the daily heroism of being a mother at home. There is no more important and fulfilling, while at the same time humbling and at times demeaning, job than running a household. Karen dedicated herself to it every day, and thanks to my campaigns and serving in the House and Senate, they were long days.

  During our first four years in the House, we kept our home outside of Pittsburgh. We rented an apartment in Alexandria, and Karen and I would drive back and forth to DC every week for session. After I was reelected in 1992, our son John was born, and it became a bit more of an ordeal to travel back and forth. We also decided right after that election to take a leap of faith and run for the United States Senate in Pennsylvania.

  Because of the proximity of Philadelphia and Harrisburg to DC, I knew there would be many a night that I would travel up to the state to campaign. We decided to keep the family at home in Mt. Lebanon and I would sleep at “Club Fed,” as we called it. Many members of Congress who, like us, did not come to Washington with a hefty balance sheet, slept in their offices and used the House gym locker room to shower and get ready for the next day. What that meant for Karen, of course, was more time on her own caring for two children.