Bella's Gift (22 page)

“After I left the United States Senate, Karen and I were blessed with another child. Right before the end of the pregnancy, we found that there might be some problems. So, a long story short, Karen delivered our baby, Isabella Maria, early. They immediately took her to NICU and did some testing. Four days later they told us she had a fatal condition and was going to die. She had a condition called Trisomy 18, which is like Down syndrome; Trisomy 21 is Down syndrome. It was Trisomy 18, which is far worse. They said she’s lucky to be alive; there is only a 10 percent survival rate at birth. And of the children who survive, 90 percent die in the first year, most in the first few weeks or months.

“Well, we decided to do everything we could; she was our daughter; we were going to help her. And she did well. She sailed through the NICU and after ten days, we decided there was nothing more they could do for her, so we took her home.
I’ll never forget the pediatrician doing the exit interview with us. He kept saying to us, ‘You know, you realize that your child is going to die.’ I said, ‘We have the Internet. Yes, we know all about this disorder.’ And he talked about how it would probably be a lung problem. She would probably die because of respiratory failure. And so Karen suggested that we should maybe have a prescription for oxygen if she needed some help. The doctor looked at her and said, ‘You have to learn to let go.’ I said, ‘All we’re asking for is oxygen,’ and he said the same thing to me. Well, then Momma Bear stood up and [interrupted by applause]. So after we got the prescription for oxygen [laughter], we left and went home.

“We went home on hospice care. Little Bella did amazingly well for the first few months, but then she got a cold. She got sick, and that’s a killer for children like this. And it was for her in the sense that she quickly went downhill, and before we knew it, her heart had stopped and she had stopped breathing. Karen was able to do CPR. We got the EMTs; we got her to the emergency room. She did okay. She came back, but then a couple of months later, she had the same thing happen.

“This time I was home holding her when it happened. I’ll never forget seeing her fail, not being able to breathe. We had a monitor on her. She stopped breathing, and I put her on the bed, and I tried to do everything I could to try to get her to start breathing again. The next thing I know, Karen comes knocking me out of the way with an Ambu bag and does CPR and Bella comes back again.

“We went to the hospital emergency room. And there she is lying on a table. She’s about five months old. And she has her hand out on the emergency room gurney. And I went over and
I reached her—reached out and held her finger. For the five months leading up to this, I had been the rock in the house. I was the guy who held everything together. Karen always asked, ‘How can you be so—’

“I said, ‘Well, you know, I’m just—this is how I deal with things.’ And it was a lie; it was a lie. I decided that the best thing I could do was to treat her differently and not love her (like our other children) because it wouldn’t hurt as much if I lost her. I was holding that finger, looking at her and realizing what I’d done. I’d been doing exactly what I had fought against with partial-birth abortion. I had seen her as less of a person because of her disability. And I prayed at that moment:
Please, please let her live. I’ll do everything to commit to her, and not just her, but to every child like her . . .

“And so one of the reasons I’m here tonight is because . . . of ‘Obamacare.’ We’ve gotten involved in the world of special needs. Bob and Darla [Vander Plaats, chairman of the Iowa Family Leader] can tell you all about it; I’m sure they know it’s a different world. And it’s a world that, with socialized medicine, for children like Bella and Bob and Darla’s son and others like them who I’m sure are in this room, they will not get the care they need. I will fight to make sure that happens. I will honor them.” [Applause.]

I recently watched the video of my answer, and it was clear I was being vulnerable and authentic in telling of my relationship with Bella in her first few months of life. Then it dawned on me that the story itself was a story all about vulnerability. I had held back on giving myself fully to Bella because she was supposed to die. Having gone through that heart-wrenching pain of losing Gabriel, I believed I could minimize the pain if
I just held back and didn’t commit fully to a relationship with her. I walled off a part of my heart so it wouldn’t be vulnerable, so I wouldn’t get hurt.

That night in the emergency room, having almost lost her again and seeing her hanging on to her life by a thread, I realized that treating her differently, loving her less, being less vulnerable would only lead to more pain. I would have missed whatever opportunity and for however long a time to love her completely. I was missing the joy that comes with the completely selfless loving of my gift from God. I would miss the memories of those times and the comfort for the rest of my life in knowing I gave Bella my best.

I am now convinced it would have hurt more and forever haunted me had I not had that second chance to love Bella vulnerably and completely. Like so many lessons in life, what you think is simply a horrible incident in your life turns into one of the great blessings.

As it turned out, blessings abounded from my vulnerability that night. When that debate took place, I was at 3 percent in most of the polls in Iowa, and even lower (if that is possible) in national polls. With the exception of Ron Paul and me, everyone on that stage had been the front-runner for the Republican presidential nomination during 2011. At that time, Newt Gingrich had just become the fifth Republican to take the lead in national polls in the past six months (Romney, Bachmann, Perry, and Cain were the others), and reporters were beginning to ask what some would call unkind questions. “When are you getting out? What’s wrong with you? And aren’t you embarrassed?”

It would be a stretch to say the only debate of the campaign that was not televised by a national network was the turning
point in our campaign, but I have no doubt it had an impact. For the next few weeks, the one question I received more than any other as I traveled Iowa was, “How’s Bella?” While the nation couldn’t watch the debate, caucus-goers did. I was told more than once that they appreciated our love and fight for Bella and the raw vulnerability I displayed when I spoke about her.

My vulnerability at the debate was not well received by everyone. My dear Karen was hurt, and it broke my heart that I hurt the person I love more than anything in the world. She was upset that I shared my personal struggle, and she thought it was too private to open up to the world about. There are things that stay between a husband and a wife. We’ve been to the depths of each other’s hearts and souls, and this privacy is almost sacred ground in a marriage. I should have explained things better, more thoroughly. What probably upset her more were the words I’d used to describe my feelings toward Bella. In the emotion of the moment, what I’d meant to say was not what came out of my mouth.

What I said was “I decided that the best thing I could do was to treat her differently and not love her as much because it wouldn’t hurt as much if I lost her.” Telling a story for the first time creates energy and emotional connections with the audience because it is so obviously raw. So raw is good, but it’s also new and . . . words don’t come out the way you want.

I meant to say “and not love her as much as I love my other children—” but that is not what came out.

It hurt Karen because, as the mother of a Trisomy 18 child, she is all too aware of how so many in the world see them as less, and therefore not deserving of being treated like other children. In her eyes one of the most outspoken pro-life warriors, a
well-known Catholic, and a dad of a special-needs girl had confirmed that sentiment to the world. I related to her that we had been tracking social media, and no one in the press or even on the blogs had interpreted my remarks that way, but that didn’t matter. After this incident Karen was even more opposed to bringing up Bella in the context of the campaign. I agreed, but that moment of exposing the vulnerability that comes with love had sparked an interest in Bella that was not going to subside.

13
LOVE UNIFIES

•
Karen Santorum
•

“Have you not read that he who made them from the beginning made them male and female, and said, ‘For this reason a man shall leave his father and mother and be joined to his wife, and the two shall become one’? So they are no longer two but one. What therefore God has joined together, let not man put asunder.”

—MATTHEW 19:4–6

I
, Karen, take you, Rick, to be my husband. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.”

Staring into the eyes of the man I loved, I uttered these
words as my own eyes filled with tears. Dressed in white lace and standing at the altar in a majestic Gothic chapel with stained-glass windows reaching up to heaven, I promised him, before God, a lifetime of love and fidelity, to honor and to care for him from this day forward. He promised the same in return. Finishing, I placed a gold ring on his finger. Looking at each other, we smiled. He squeezed my hand. In those blissful moments, my heart nearly burst with joy as I anticipated the prospect of forever with this man. I could not have loved him more.

In those sacred, life-changing moments, you envision a lifetime of shared joy and adventure. Two become one. Your journey together begins. When you say, “I do,” it is hard to understand the full breadth of those vows.
I do
promise to love you always and faithfully.
I do
promise to honor you and grow with you.
I do
promise to care for you in sickness and in health.
I do
promise to weather any storm.
Any
and
every
storm.

During the sacredness of that Mass, I thought about the Song of Songs from the Old Testament and the mystery and depth of marital love. The covenant Rick and I were entering into joined us together in a sacred union. When we were dating, we would talk about building a stone castle around our marriage so that nothing would ever come between us. Looking around me, I observed that the chapel in which we were being married was built from limestone, something so strong that it lasts forever and stands the storms of time. The architectural details were impressive and breathtaking. All the woodwork in the chapel was made from oak, one of the strongest woods in the world. I prayed this would also be my marriage: strong, stable, and able to withstand any storm that
may come our way; however, at that point in my life, I was convinced this life would be spent in a garden, a bed of roses. Sure, there would be rainstorms and maybe a rumble of thunder, but hurricanes happened to other people.

Back when Rick and I were dating, I worked as a neonatal intensive care nurse while putting myself through law school. I took classes during the day and worked at the hospital at night. I was terribly busy but had the energy of a young woman who felt she had the world at her feet. Everything was new, exciting, and promising. Some of the Pittsburgh law firms were interested in hiring me, and on one of the evenings when they wine and dine you, I realized someone other than the law firm was trying to pick me up.

Rick was an associate at the law firm and one of the lawyers who took me out for dinner that evening. We hit it off instantly. I always said it was love at first laugh, because he had me in stitches all night. He was so handsome, carefree, and funny, not stiff or formal. After dinner we went to a comedy show, and he sang Christmas carols all the way there, even though it was early November.

The joy in the simplicity of watching Rick sing as we were walking through the streets of Pittsburgh was refreshing. When Rick and I met, even though on the surface I was on top of the world, I was going through a horrible phase of life. I was an energetic nurse and determined law student but also a foolish girl making a lot of stupid and sinful decisions. I thought that doing whatever I wanted, whenever I wanted, was freedom and that it would lead to happiness. But instead, it only led to loneliness.

I became a slave to my own desires. My self-seeking will became the rule of my life, I didn’t have time for God, and I
convinced myself that He wanted nothing to do with me. How could He? After all I had done, surely God could only hold disdain for me. Falling away from the grace of God had put me in the loneliest place in the world.

But then it all changed. I will never forget the moment. I was out to lunch with a dear nurse friend of mine, Gretchen, and she simply said, “Karen, God loves you.” It stunned me to hear her say this. Because of my wayward ways and lack of formation in the faith, I didn’t think God could possibly love me after all my bad decisions. I thought about Gretchen’s words constantly for a few days, torn between disbelief and hope. I wanted her words to be true; I wanted to believe I could be forgiven.

A few days later, after a tremendous amount of thought and soul-searching, I walked into Saint Paul Cathedral, the mother church of the Diocese of Pittsburgh. I gazed up at the gables, spandrels, frescoes, and stained-glass windows depicting the life of Christ; it was breathtakingly beautiful, and I was in awe. But my heart was heavy, and I could not hold back the tears. Intimidated by the holiness of the place, I felt small and unworthy to be there. I was also afraid of the huge step I was about to take, because I thought the priest would yell at me; instead, after hearing my thorough and heart-wrenching confession, he was loving and compassionate.

He quoted 1 John 1:9: “If we confess our sins, he is faithful and just, and will forgive our sins and cleanse us from all unrighteousness.” I will never forget him saying, “Welcome home. God is so happy you’re here.” He told me to not be afraid and to allow myself to be purified by the grace of God and to be free from the slavery of sin.