Bella's Gift (5 page)

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Rick Santorum
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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.
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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 very 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.

Shortly after midnight, the monsignor took leave, but left us with holy water to baptize our little Gabriel in the unlikely event he would survive this horrible ordeal.

In the wee hours of October 11, 1996, he surprised us all. The doctor delivered him and, with an air of disbelief in his voice, he pronounced Gabriel alive. Praise God! We knew he was a fighter to have survived his condition, then surgery, but to endure labor and delivery at his age was a miracle. Through tears of joy and sadness came the faint words “Baptize him.” Karen held him in her arms as I poured the water on his forehead, baptizing him in the name of the Father and the Son and the Holy Spirit.

The nurses wrapped him in a baby blanket and left us alone. There was nothing they could do, so they let us spend a lifetime with him, his lifetime.

For the next two hours, Karen and I held Gabriel, took pictures of him and us, and told him how much we loved him over and over and over again. I never took my eyes off
of him—I was afraid I would forget what he looked like, so I wanted to engrave his face in my memory forever. We sang to him, prayed to God, and as his heart, which we could see beating in his tiny chest, began to slow down, we thanked him for fighting the good fight. We thanked God for giving us those moments to meet him, hold him, love him, and pray with him. When his brave little heart stopped beating, for a moment ours did too.

It wasn’t until after the funeral that I began to deal with the reality of life after Gabriel. More than any other emotion, I felt betrayed, by God. You see, after many years of faith not being an important part of my life, the previous two years had been a time of spiritual renewal for Karen and me. When I was elected to the Senate, we moved our family to Northern Virginia and attended a church where the pastor, Fr. Jerome Fasano, was different from the “meat and potatoes” priests we were used to. He lit a fire in us at the very same time we encountered another great man of God, the chaplain of the US Senate, Lloyd John Ogilvie. My faith went from something I did on Sunday to being at the heart of my life both at home and at work.

I rededicated myself to my family, who had played second fiddle to my run for the Senate, and found a passion for the most vulnerable in public policy. I put political considerations aside and weighed in on the most controversial issue of the day, abortion, when I led the fight on the floor of the Senate to ban partial-birth abortion.

After chasing my desires, I began to pursue God’s will—and now this was His response? I recalled a quote from Saint Teresa of Avila, who, after experiencing numerous trials, complained to Jesus. He responded, “Teresa, that’s how I treat my friends.”

Teresa responded, “No wonder you have so few friends.”

“Ask for the gift of understanding.” These were the words of Chaplain Ogilvie that I held on to during this time. “Please, Lord, just make sense of all this,” was my constant plea. He did not disappoint.

In time, I was able to see God’s love through the pain. Now, as I reflect on the night that encompassed Gabriel’s life, I am comforted that in that short life my son knew only love. How many can say that? God’s gift of faith reassures me further with the belief that Gabriel is now with our Father in heaven. The thoughts of a life knowing only love and an eternity nestled in our Lord’s bosom lifted the weight of grief over time. It also made me realize my most important role as a father is to shepherd my children to our Father in heaven, because, in the end, all that really matters is the end.

This realization helped me trust that He is a loving and just God, who loves my son even more than I do, but I still missed Gabriel, missed holding him, caring for him, and watching him become an honorable man. I couldn’t see that God was at work, primarily through Karen, to lift Gabriel up to touch, heal, and even open the eyes of those who would not see.

Gabriel’s life is chronicled in Karen’s book
Letters to Gabriel
, as well as in the media reports and interviews that followed its publication. The book was published in 1997, but there isn’t a month that goes by when someone doesn’t come up to me to thank us for writing the book and telling our story. Even in our darkest moments, God is faithful. I have often said to my children, “If you can accomplish for our Lord what your brother Gabriel inspired with his life, you will be a great warrior for Christ.”

My experience with Gabriel taught me to try and live, not as the world tells me to, in the here and now, but in the here and there, as well as the now and then. Gabriel’s death helped me live fully in the moment, but with my mind’s eye focused on the eternal—trusting in God to help me navigate through the shoals.

Bella was small for her age, so late in pregnancy we were referred to a perinatologist, a specialist in dealing with high-risk pregnancies. At our ages, Karen and I were the definition of high risk. A battery of tests showed just enough to keep us on edge, but not enough to have us really worried—suspicions, but nothing definitive. After Gabriel, the hope for “happy and healthy” had become the hope simply for “alive,” and we would fight it out from there.

As all three-plus pounds of Bella were fighting for her life and she was hooked up to so many contraptions that you could only see her hands, I was praying one prayer: “Not again, Lord, please, not again.” But her hands told a different story. Her pinkie and index fingers were ever so slightly curved in toward each other. That was it—a marker for Trisomy 18. Of all the possible conditions, this was the one the doctors were most concerned about, so this was the one we researched the most intently.