Bella's Gift (26 page)

It seems almost axiomatic that if you truly love someone, you would be willing to sacrifice greatly on that person’s behalf. We have visions of movie heroes who leap in front of a lover to take a bullet or dive into a raging stream to rescue a drowning child. Those are indeed selfless acts love inspires and are rightly celebrated as heroic.

True, lasting, loving relationships, however, are not built
or sustained on dramatic or spectacular acts of selfless love. I had the opportunity to meet Saint Teresa of Calcutta a few months before she died. She had a wonderful saying: “God does not call on you to do great things; He calls on you to do little things with great love.” As I write this in the wee hours of the morning, I am sitting next to Bella as she sleeps, massaging her every few minutes to encourage her to breathe. She has a cold and her nose is stuffed to the point where she can’t breathe through it. Because Bella is who she is, she doesn’t always figure out to switch to her mouth to breathe if her nose isn’t working. That is why I am up and blessed with a few quiet moments to write this chapter of her book.

Tonight is my “little thing” that I do willingly and, in spite of the fatigue, joyfully. Karen was blessed to be on duty all last night when I was away in Columbus, Ohio. If you are a parent, I am sure you could tell your own stories of being up late with a sick child. We had our share with our other children, but being the parent of a severely challenged child is different. It’s not the occasional illness or accident; it’s every day. Karen and I learned a lot about selflessness in our marriage, but Bella required us to go to the next level.

I was recently with the great writer and motivational speaker John Maxwell at his alma mater, Ohio Christian University. He gave a talk on the qualities of a good leader that summed up what Bella has taught us about the key to selfless love. He said the biggest key is consistency. Before we had Bella I never would have said that in a million years.

15
LOVE BEGETS PEACE

•
Karen Santorum
•

We draw people to Christ not by loudly discrediting what they believe, by telling them how wrong they are and how right we are, but by showing them a light that is so lovely that they want with all their hearts to know the source of it.

—MADELEINE L’ENGLE

S
tretching out her hand, Bella touched the side of Rick’s face as she often does. Her eyes grew wide as she felt his scruff. Pulling her hand back, she released high-pitched squeals of
joy and giggling laughter. Daddy was home. Bella greeted him with an animated reception, as she always does. As he tossed her in the air, she threw her head back, smiling and stretching out her arms. Flying. He held her, smiling and talking elatedly. She responded to his tone by clapping her hands and nodding vigorously, so happy that her daddy was home.

We gathered as a family and curled up around the fire, one of the last of the season. Rick had just won the Mississippi and Alabama primaries, putting the tally of states he had won at ten. I was so proud of him and of all his hard work. Elizabeth had been campaigning in Hawaii for ten days, a job she had gladly accepted. Rick and I had just returned from traveling to Puerto Rico with John, Daniel, Sarah, Peter, and Patrick for that primary contest. Finally, all of us were at home, if only for a night. I could not remember the last time that had happened.

Watching the children pass Bella around the room, I reflected on how, in the midst of the hurricane that was the presidential campaign, God had put us in the eye of the storm, where there was peace. There was happiness and serenity in the daily rhythm of our family life that could only have been divine intervention. Each of the children wanted to hold Bella next. She loved the attention and her eyes shone as she joyfully responded to their love. Bella’s light soothed our hearts and gave us peace. She had quickly become the anchor for our home life, a joyful and constant presence who would offer only love.

Rick was completely immersed in the presidential race and was extremely busy handling a million demands. As a wife and mother, I tried to balance keeping life at home as normal as possible while having to travel around the country with Rick to campaign. We may have been immersed in a
presidential race, but our children still needed to be educated, participate in sports, get to their music lessons, and see their friends. It was a lot of juggling, and I was thankful that while Elizabeth and John were busy working on the campaign trail, Daniel could drive himself and Sarah to school each day.

People always want to know what the hardest part of the campaign was, and I always tell them that I can handle everything except having to leave my children. I’ve never been good at leaving my kids, and neither has Rick.

Life with Bella made my trips a little more complicated. If I left, Bella needed a nurse with her overnight should any problems arise. Bella’s sleep patterns were often irregular, so it was critical to have someone who knew her and her care, should she stay up to all odd hours of the night. I thanked God many times for the blessing of our talented and compassionate registered nurse, Erin MacEgan. Truly a godsend during the campaign, she and Bridget made my campaign travel possible. Bella loves them and always became excited when she saw them. She’d smile, kick, and wave her arms in the air. We called it the Bella dance.

Life at home was hardly normal. After the Michigan primary, the Secret Service had taken responsibility for Rick’s security. At home, a Secret Service van was stationed in the driveway and agents patrolled the yard. We were so grateful for their protection. Our detail was composed of honorable, professional, and sharp men and women. We were blessed with good people on our security teams throughout the campaign; our first security detail leader, Andy Patrick, became a dear friend. Knowing that Rick and my family were safe put my mind at ease.

When Rick and I would go to events with six of our children, there was not enough room in the Secret Service SUV, so we had to take our truck. There were a few times when we drove in the lineup with a police car, three Secret Service SUVs, and then our truck sandwiched in between. They drove fast and tight, and our son John drove the truck in the lineup. For John, Daniel, and their friends, it was a teenager’s dream come true to drive at eighty miles per hour and not have to worry about getting a ticket! For me, even though John is a great driver, those long, fast trips were stressful at the time, and something we laugh about now.

In April 2012, after fifteen competitive primary contests in which Rick won eleven states and almost four million votes, and after almost a year of intense campaigning, the promises of Easter and a few days off from the trail were enticing. We felt like weary travelers who needed a respite from the journey. Rick came home on Holy Thursday, eager for some time to sleep, regroup, and spend time with the family. Sadly, in the wee hours of the morning, Bella, who had been struggling with a runny nose, got really sick and went into her death spiral.

Her lungs were congested, and she was not breathing enough to keep her oxygen levels up. She was having one apnea after another; in addition, she had a high fever and was tachycardic. When Bella is sick, we immediately call the pulmonologist and start the nebulizers, suctioning, chest PT, various medications, and oxygen if needed. It’s a frightening and stressful time. Rick has always been a rock for me during times when Bella is sick. It’s extremely emotional for us both, and I must admit that I cry a lot when she’s sick. I don’t cry while I’m focused on Bella’s care; rather, it’s in the
quiet of the night after we’ve stabilized Bella that tears come spilling out.

Rick and I had been up with Bella all night, and instead of improving, she continued to decline. Her fever was raging, despite the acetaminophen, ibuprofen, and sponge baths. We were giving Bella frequent nebulizers, but her congestion only got worse. Her oxygen requirements kept going up as her oxygen saturation levels dropped, and her heart rate was frighteningly high. Whatever was making her sick was a nasty bug, and we could not get it under control. We had spoken with the pulmonologist several times throughout the night. In the morning the pulmonologist recommended some treatments, but when Bella did not respond to them, her doctor said we needed to bring her into the hospital.

The last place we ever want to take Bella is the hospital. We’re always concerned we’ll bring her in for one illness, but she’ll catch something else. With the superbugs that are in the hospitals today, and the fact that during cold and flu season the isolation rooms are in high demand, this is a legitimate concern. Because of these concerns, the decision to take Bella to the hospital is one that we always leave up to her physicians, but they also know we try to get through Bella’s crises at home. Rick and I, together with the pulmonologist, do everything we can to avoid the hospital, so when her doctor said we needed to bring Bella in, our hearts sank.

Rick radioed the Secret Service agents who were outside our home. He told them we had to take Bella to the hospital. As always, the cars were ready and waiting in the driveway. Since we had the oxygen, monitor, and medications, the pulmonologist suggested we just get in the car and get to the hospital. We
could be there by the time an ambulance arrived at our home; in addition, the ambulance would only have been allowed to take Bella to the local hospital and not to the one that had the pediatric unit where our pulmonologist worked.

We bundled up Bella, got into the SUV with her oxygen tank and monitor, and drove to the hospital. At a moment like that, I was grateful that the intimidating, black caravan of SUVs commanded the respect and interest of other drivers as they cleared the way on the road. We made it to the hospital in record time.

Since we did not have time to go all the way to CHOP, we had to go to our local hospital, Fairfax Hospital, which has an excellent pediatric intensive care unit. I must admit that once you’re used to the excellence of CHOP, it’s really hard going to another hospital, and there is an additional layer of stress added since we were not going to the hospital that we knew and completely trusted. I was nervous going to a place where I did not know the physicians or the facility; however, this was not the same hospital that Bella was in when she was six months old. We will never go back there.

It was a great comfort to Rick and me that, when we arrived, Bella’s pulmonologist met us in her room and cared for her the entire time she was in the hospital. Dr. James Clayton, Dr. Sunil Kapoor, and the nurses at Fairfax Hospital took great care of Bella. They were able to get her stabilized, and it was a huge relief when Bella turned the corner. Dr. Clayton and Dr. Kapoor and their team were bright, professional, compassionate, and thorough in their assessments of Bella, and included Rick and me in the decisions regarding her care.

It was no coincidence that Bella was admitted into the
hospital on Good Friday, a day that is highly significant to us as Christians. From the moment our Savior was born, His entire life was directed to the supreme moment when He was crucified and died on the cross. As Bella lay in her hospital bed that day, I thought about Christ’s passion and how Mary, His dear mother, must have felt watching Him being mocked and treated with such horrific cruelty.

Anytime Bella was in the hospital, it was like a constant spiritual retreat. I would hold her and stroke her head and pray constantly. My Bible and spiritual books were always with me, and the inspiration from them helped me stay focused on Christ and the meaning of suffering. His cross is the tree of life that gives us our salvation. His cross is the stairway to heaven and God’s glory. “If any man would come after me, let him deny himself and take up his cross and follow me,” He said (Matt. 16:24).

There were times when I felt as though I were on the cross—not at the foot of the cross, but on it. It was during those moments, when the worries and burdens were crushing me and pulling me down into a dark valley, that our dear Lord filled me with His grace and gave me the strength to see the light through the darkness. My entire being is filled with thanksgiving, and it is a great consolation to know that no matter what happens in life, our Savior will hold us, strengthen us, and walk my family out of the darkness and into the light.

Through Bella’s life, I have witnessed one of the most important lessons of Christianity firsthand. When there is no purpose to pain or sickness, it becomes suffering, but when we unite ourselves with Christ and trust completely in His divine providence, we are filled with hope. It is the hope of an intimate relationship with Jesus Christ and that we are one step closer
on our journey toward heaven, and heaven is all that matters in life. I don’t understand this mystery of suffering; I can only trust that somehow it will all work for the glory of God.

It was on Good Friday that Rick and I, in the midst of caring for Bella in the pediatric intensive care unit, began sifting through the decision to continue with the presidential race or to bow out gracefully. We were immersed in our Lord’s passion in a way like never before. Our marriage and children had always been our most important priorities, and having Bella in the hospital tipped the scales of emotion and sapped us of our strength. We had been on a high-speed train and by the grace of God were able to handle it; that is, until Bella got sick. The most important focus for Rick and me was getting Bella better and tending to the hearts of our six other children, who were worried about their little sister.

We gathered the children together in Bella’s room, and we hugged and prayed. We listened to their thoughts and wiped their tears. For the entire Easter weekend, we prayed for Bella’s health and about the decision to leave the race or continue. By Easter Sunday, that most glorious day of Christ’s resurrection and the promise of new life, the decision was made clear in our hearts and minds as we prayed.

Praise God, Bella was well enough to come home the following day. We came home to a house full of pink roses. I have often mentioned that Bella loves pink roses. Initially, the children bought them to congratulate me when we found out we were expecting a girl. They thought pink roses would be perfect for a baby girl, and with time they had become “Bella’s flower.” We frequently buy pink roses simply because they are cheerful and brighten up the house. Only later did we learn
that pink roses symbolize gratitude. Throughout her life, we have had vases of pink roses in the house, an unknown and silent declaration of gratitude. We will be forever grateful for Bella’s life, her joy, her impact on our family, friends, and church community. On this particular day, we were especially grateful for her healing.