Bella's Gift (28 page)

17
LOVE GIVES PURPOSE

•
Rick Santorum
•

God is looking for people through whom he can do the impossible. What a pity we plan to do only the things that we can do ourselves.

—A. W. TOZER

O
ne of Bella’s gifts is that she has no plans to do anything for herself. She seems perfectly happy being able to do almost nothing for herself. She can’t wash herself, dress herself, stand on her own, crawl, walk, feed herself, or tell us how she feels or where it hurts. She will always need our care.

None of this appears to distress her. She doesn’t get frustrated by any of her apparent deficiencies. She is just content to be who she is. Now, medical experts may opine that she lacks the mental capacity to feel otherwise. I am fairly certain that if such a statement were made, it would be wrong. Bella does at times get upset, irritable, and even demanding. She does so for the same reasons you and I would express those emotions. Unlike with many of my less-than-pleasant moments, however, when the demand is met, the lack of sleep or the pain goes away, so does her complaint.

During my presidential run, the country got to know of Bella. They learned of her illness in February that caused me to suspend the campaign within days after I was announced, belatedly, the winner of the Iowa caucuses. Because of her illness and its impact on our campaign, we felt compelled to release information about Bella’s condition, Trisomy 18, and all the physical complications that made her illness more serious.

That is what they knew of Bella, but the country had no way of knowing any of the things about who she is—her personality, likes, and dislikes. Out of an excess of caution because of the way the media and the left treated Sarah Palin’s son, Trig, with Trisomy 21, we kept all our comments about Bella to her condition, not her physical and cognitive abilities. In fact, the only insight anyone could have gleaned from the information we provided about Bella was a picture we released to the press and on our website of Bella sitting on her daddy’s lap on the front porch of our house. That picture of an adorable smiling little girl with her completely enthralled daddy was the only glimpse the country had of who she really is.

As Karen and I sat in her room in January 2012, enduring Bella’s first hospitalization in more than two years, it really never crossed our minds what was going on outside of that room. We were obviously completely focused on Bella’s minute-by-minute condition, but there was also part of me that felt maybe God was pulling me out of the intensity of the race to give me perspective.

This race, even though we had only had three primaries so far, had been going on intensely for almost a year, and Bella’s illness was only one of the considerations. Over the past few weeks, Karen and I had had some very candid conversations about all the children, not to mention how she was holding up. Most of the kids were doing fine. In fact, some of them were really blossoming. The cool factor of having a dad run for president was wearing thin, however, as the reality of having both more responsibilities at home and unwanted attention at school and on social media began to sink in. At Bella’s bedside, I looked at the face of a mom who had been up all night and stretched as thin as plastic wrap over a container, holding everything in place. Even though we had just been declared the winner in Iowa (two and a half weeks after the caucus), I had to broach the subject of getting out of the race. Her response took me aback.

Karen was the last of our family to sign off on getting in the race. When I started traveling to Iowa, New Hampshire, and South Carolina in 2010, the press began asking questions about running for president. I recall our first serious conversation about the idea of running. I talked about all the reasons I was thinking of running. Why I was feeling called to run. After I finished, Karen’s answer was right to the point. “No.”

I said, “Fine. I think we both need to pray about it before we decide anything.”

She said, “No.”

I said, “Honey, you and I always have prayed about decisions like this.” In fact, Karen is a big-time prayer warrior and never makes any decision of consequence without taking it to God in prayer.

She fired back, “God could not possibly want you to run for president!” Then she proceeded to lay out a list of reasons why God had to agree with her.

When she finished, I said, “I’ll put you in the undecided category for now!”

Over the next few months, Karen slowly, but surely, came to the same mind as mine. In fact, she admitted that while she didn’t want me to run, she had felt God’s call on her heart from the very beginning. She simply didn’t want to take on that cross, at least not at that time in our lives.

As we sat next to Bella’s bedside, thinking we were going to be in the hospital for days or even weeks, I couldn’t help but think that, though Bella was the principal impetus for me to get into the race, it now looked as though she might be the trigger for my exit. I couldn’t imagine leaving her side. I sometimes tease Karen and the children that Bella loves me the most, but they know Bella and I have that special daddy–little girl bond. She loves to play with Daddy throwing her up in the air, spin dancing, and doing “Bell-ups,” lifting her above my head so she can touch the ceiling. We have our quiet time, too, where Bella’s innocence and unfiltered joy pulls me in. There was no way I was going anywhere until she was out of the woods, and the last time she was in this
condition, she was on a ventilator for five weeks in the intensive care unit.

When I broached the subject with Karen, I thought she would simply say, “It’s over.” Instead she made many wise observations about both our campaign and personal lives but concluded with “Bella will tell us what is in store for us.”

Karen was right. When the doctor came in moments later with the news on Bella’s chest X-ray, it appeared Bella had spoken. It was awful. Her lungs were full of fluid. They looked just like the previous pneumonia.

After the initial shock, Karen looked at me and said, “We just need to pray for a miracle. Bella’s life is a daily miracle, so today we just have a more immediate request.”

And pray we did, all day and into the night, but we were not alone. We kept getting texts and e-mails from all over about people praying for Bella, including her special friend Brendan Kelly. We could feel the power of the intercessory prayers, and there was no doubt that so could Bella. Nights are always worse than her days, so we hunkered down for the worst.

The next morning brought the X-ray tech to take a new chest X-ray to compare with the day before. We were hoping for stability; no worse than the day before. They weren’t only stable; her lungs were perfectly clear. All the fluid was gone! For a normal person such a turnaround is highly improbable; for a lung-compromised Trisomy 18 child, well, Bella told us what was in store for us.

Throughout the night she had required less, not more, oxygen support, and that continued through the day. Bella was going to be moved out of intensive care to a step-down unit.

Now what to do? Karen and I decided to look at this respite
as a chance for the two of us to spend quiet time with each other in prayer, see the Lord at work, and try to make some sense of what this all meant for our family and the campaign.

We made a strategic decision that we would have never made but for Bella’s illness. We decided not to go back to Florida for the last few days before the primary, but to jump ahead to three states that were having caucuses the week after the Nevada primary. We would get a jump on our competitors and have more time to run the kind of grassroots, personal campaign that led to our success in Iowa.

Bella was doing so well we decided on Sunday morning to travel to suburban Missouri, St. Charles County, on Monday, and restart the campaign the very next afternoon. I must admit, I questioned the wisdom of scheduling our “restart” campaign event with only twenty-four hours’ notice to a state where I had not done much campaigning. Because I wanted to talk about providing training for jobs that would be created with our manufacturing plan, we planned on holding the event at the logical place for that training—a community college. To say the least, colleges are not a hotbed of support for any conservative presidential candidate; we wouldn’t have a built-in crowd on such short notice.

By Monday morning, Bella was back to being all smiles, so I was off to Missouri. I knew the media was going to cover my return to the trail and was concerned that the expected small crowd would result in a snarky headline, like “Santorum returns, nobody notices.” When we pulled up to the auditorium on campus, I panicked. There was a good, not great, crowd, but they were standing outside the building. All I could think was that we couldn’t get in touch with the college over
the weekend and never booked the auditorium. When I got out of the car, I was greeted by our lead staffer at the event, and I told him to open the doors and let the people in. He told me the auditorium was packed with several hundred people, and this was the
overflow
.

There was an energy and enthusiasm I had not seen since we were in Iowa a month before. What was happening? As I took the stage amid a frenzy of enthusiasm, three people caught my eye. Right in the front row was a young man in a wheelchair. I am sure we had people in wheelchairs at other campaign events, but the expression on his face grabbed me. For a flash there was no one else in the room as he mouthed the words
thank you
.

I then swung to my left to wave to the crowd, and there stood a tall young man with a five- or six-year-old child on his shoulders, waving a sign back and forth. The little girl had Down syndrome, Trisomy 21. The sign read, “I’m for Bella’s Dad!”

From that point on in the campaign, they came—to rallies, to volunteer, to social media, and anywhere else to be part of a campaign that valued people equally. A few weeks later I met a young man with spina bifida in Oklahoma City. Our whole team was excited to meet him. He had completed more advocacy and get-out-the-vote calls in the last two months than anyone else in the country—from his home, in his wheelchair.

For the rest of the campaign, from shaking hands with rally goers at rope lines, to checking in to another hotel, the first thing out of most people’s mouths after hello was, “How is your daughter?” or just “How’s Bella?” It continued after the campaign for months. Even now, most days someone I don’t know asks me about Bella.

I have never asked, but I suspect from comments I have
received since the campaign that many people saw her as the underdog beating the odds, and Americans love an underdog. Others saw a family with its priorities in the right place—family first, even if it means backing out of a presidential race. Neither of these points of view were limited to Democrats or Republicans or liberals or conservatives. Just a few days after I announced my withdrawal from the campaign, Elizabeth, Sarah Maria, and I attended the White House Correspondents’ Dinner. (I didn’t want to go, but the girls said it was payback for dragging them all over the country.) I felt like a paparazzo taking pictures of them with all the Hollywood celebrities in attendance. After the click, most of the stars, from George Clooney to Sofía Vergara, asked how Bella was and said something like this: “I don’t agree with your politics, but I was impressed with how hard you worked in your campaign and how you put your family first.”

At the root of that statement is the recognition that a mentally and physically challenged little girl who counts every day on earth as a miracle is worth it. This was coming from many people who would think nothing of aborting a child with Bella’s condition. That only makes sense if they look at Bella and children like her not through their own eyes, but through the eyes of a father who loved her. It allowed them to see her not as a personal inconvenience, as a burden to society, or as having no economic utility, but for who she is: a beautiful soul.

Love opens up windows not only for the lover but also for those who see love in action. Bella is a font of love from which all our family drinks every day and who, through God’s perfect plan, opened the eyes of a confused and misguided world to see the truth that only love can reveal.

18
LOVE BRINGS HOPE

•
Karen Santorum
•

Hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

—ROMANS 5:5

A
s Rick and I conclude this book, we are overwhelmed with gratitude. The Lord has blessed us with so much. It is the gift of living faith, however, that has opened our eyes to see His love in a special way in the eyes of our little angel, Bella. We tell Bella’s story so that her sufferings and strength
may remind people of where real hope comes from: our Lord Jesus Christ. Our friend, and world-renowned evangelist, Nick Vujicic, who was born without arms and legs and lives a successful and blessed life, expressed this eloquently:

God loves you and he hasn’t forgotten your pain. He hasn’t forgotten your family. And maybe as you’re watching this interview, you’ve compared your suffering to my suffering. And that’s not where hope is, to know that someone else, in your opinion, is suffering more than you. That’s not where hope is. The hope is in the name of God; the name of the Lord Jesus Christ. Hope is when you compare your suffering to the infinite, immeasurable love and grace of God. Isaiah 40:31 says those who wait upon the Lord will renew their strength and they shall mount up on wings as eagles. I didn’t need my circumstances to change. I don’t need arms and legs. I need the wings of the Holy Spirit, and I’m flying because I know Jesus is holding me up. Don’t give up on God, because God will not give up on you.
¹

Many doctors warned us that Bella’s condition would mean total dependency and full-time care. Thus, we anticipated the daily demands of her care, the late nights waking to beeping alarms, and her vulnerable immune system. These are the biological, material realities of her condition. She relies completely on us for food, shelter, care, and love. Dependency. Helplessness. Yet, in the same way, isn’t that how God must see us? We are the lost, wandering lambs from the fold, who depend completely on their Shepherd for life, mercy, and redemption.