We made many trips to our local pulmonologist office in Bella’s first few years of life. The physicians there were smart, thoughtful, and kind. They always did a complete medical assessment with Bella and listened carefully to her lungs, and they were attentive to her and responsive with ordering her medications. The nurses responded to my calls right away and were very helpful. This established pattern of repeat infections, however, was a red flag that something might be off with her immunoglobulins.
I like to think it was just an oversight, and not because of Bella’s diagnosis, that a simple blood test to check her immunoglobulin levels had not been ordered. Whatever the reason, I forgive them and know that we are all human and make mistakes; in addition, I understand that there’s still so much to learn in medicine. Thankfully, my brother-in-law, Mike, took the time to research this issue and urged me to have Bella’s levels checked. He wrote a letter to Bella’s pediatrician and pulmonologist discussing the studies he had found. I talked with our pediatrician about it, and he appreciated the information and ordered the test.
The results of Bella’s blood test confirmed that she did have a severe deficiency with both her main immunoglobulin levels and also one of her subclass levels. Rick and I immediately took Bella to the immunology department at the Children’s Hospital of Philadelphia. As always, the CHOP physicians could not have been more wonderful. Bella saw Dr. Jen Heimall and Dr. Kathleen Sullivan. They did a thoughtful and thorough exam and ordered another blood test. We talked at length about immunotherapy and its benefits and drawbacks. After several discussions we decided that, given Bella’s pattern of repeat serious infections with bronchitis and pneumonia, she would benefit from immunotherapy.
Bella received the first infusion up at CHOP, and they taught Rick and me how to administer it. The infusion is given through a very small subcutaneous needle, not an IV, so I give it to Bella once a week. For three years I’ve been giving Bella her Hizentra (immunoglobulin) therapy here at home, and it has completely changed her life! Bella got off all her daily medications and treatments. She went from being a little girl who was frequently sick and congested to being consistently healthy and able to breathe well. Because she could breathe well, she began sleeping through the night and had a lot more energy during the day.
Her occupational and physical therapists noticed a big difference in Bella’s energy levels during her therapy sessions, and as a result she’s progressing much better with her fine and gross motor skills. The Hizentra immunoglobulin therapy has made literally a night and day difference in Bella’s life! We are rarely at the doctor’s office anymore. When Bella does get sick, instead of doing her death spiral, she gets better quickly. It’s amazing the difference in my little girl. Rick and I will always be so grateful to Dr. Mike Lamb for taking the time to care and to the physicians at CHOP for taking such great care of Bella!
The difference in Bella’s life and the life of my entire family is so huge and significant with the immunoglobulin therapy. Any child who presents with frequent infections and establishes a pattern of sickness is evaluated for numerous things. When different medications and treatments are tried but are ineffective in preventing future illnesses, eventually a patient’s immunoglobulin levels should be checked. It might just be a lifesaver.
10
LOVE IS UNCONDITIONAL
• Rick Santorum •
[T]he Lord appeared to him from afar.
I have loved you with an everlasting love;
therefore I have continued my faithfulness to you.
—JEREMIAH 31:3
A few years back, I was having lunch to catch up on the life of a young man who was on my staff when I was a US senator. When the conversation turned to his marriage, he said, “I am not getting what I want out of my marriage.” I responded, “Good!”
My reaction startled him, so I went on to explain that marriage is a sacrificial relationship of giving yourself to your spouse, not a business contract for a delivery of needed goods and services. His understanding of marriage is widely accepted and often the reason for the high divorce rate. Today, marriage is all about “what I get,” and not about “what I can give” to my spouse and our marriage.
I know a man who is on his fifth marriage. He sums up the contemporary view of marriage rather bluntly, “If my marriage contract isn’t performing, then I cancel the contract and find another partner to marry.” To him, marriage is about romance, pleasure, and companionship. All very important aspects of marriage, but like any contract it is not just about what you receive; it’s what you give, like commitment, caring, self-sacrifice, and unconditional love. These are just some of the ingredients that make marriage different from other relationships. It’s also why every civilization since Adam and Eve has had some recognition of this special relationship between men and women that is both unitive and procreative.
Karen and I are blessed with a great marriage. We are best friends, partners, parents, and lovers, but most important, we follow and base our marriage on a vow we made to God. We are far from perfect in any of those relationships, but because our marriage is built on our love of the Lord, the faith and teachings of the Church, and our commitment to do our best to live in the Word, it’s made all the difference. We see Jesus as the model for us in marriage as in everything. He gave Himself fully to His Church with sacrificial love never before or since seen. He calls everyone in marriage to give of himself or herself fully to love and serve, just as He has done for us.
As is evident from our story, our marriage, like all marriages, is a work in progress. We fall short daily, but we get up the next day and ask for grace to do our best to love and serve Him through our most important and sacred vocation, our marriage. We realize our marriage is about more than us. Of course, our children are greatly impacted by the state of our marriage, but so is my business, our circle of friends, and in our case, the public. Karen always says, “The most important gift we can give our children is a good marriage.” It’s also a great gift to the world around us.
We both were blessed by having great role models. Karen’s parents were in their sixty-seventh year of marriage before Karen’s dad passed away in 2013, and my parents, who didn’t marry until they were in their midthirties, made it to fifty-five years before my dad died in 2011. Their relationships were very different; Karen’s parents were college sweethearts and lovingly devoted to each other and their marriage, and my parents were a tough, career-driven couple. Our parents were well-educated, hardworking survivors of the Great Depression and World War II, and both couples had a full understanding of marriage and the kind of love that is necessary for its success.
Our marriage is built on the solid foundations of our faith, but tragedy shakes your faith. The death of a loved one can even crack the foundation. Losing a child or having to deal with a child with severe disabilities can topple the entire edifice you have built. It can also destroy a marriage, as we have seen, living in the world of families with disabled children.
Bella’s arrival did shake our faith at first. How could it not? We had just finished sixteen years of intensity in the House and Senate, culminating in a humiliating loss by a huge margin. We had just moved into a new home. We were juggling homeschooling the younger kids while shuttling the two older ones to high school. I was trying to discern a new career path, while trying to earn enough money to support the family for the time being. And we had a new baby who could die at any moment and who would require constant care for however long she lived. A new home, new job, new schools, new baby: any one of these presents huge stress. Naturally, we asked, “God, why us?” Why would God take another baby from us? How could the God who loves us unconditionally give us another heavy cross?
When Bella came home from the hospital, we knew her condition required 24/7 care. That was daunting, but I must admit I didn’t dwell on it. Karen was so fragile I needed to focus more on loving her and encouraging her. While Karen was caring for Bella and putting all the pieces together at hom
e with the doctors and medical equipment suppliers, I was being Mr. Dad to the rest of our clan. I am by nature an optimist, and particularly so when times are tough. I am also a Martha, not a Mary (see Luke 10:38–42), and I like to express my love through service. So being the rock who held the family together was natural for me.
But what kept me positive had more to do with my faith than my general disposition. After Gabriel died, I dove deep into trying to put his death in a positive perspective. I found the most satisfying advice from Saint Thomas More. More has always been one of my favorite historical figures. In fact, I hung a portrait of him directly across from my desk when I was in the Senate, so every time I looked up, I saw his picture.
When Henry VIII imprisoned him, More wrote letters to his daughter Margaret, trying to help her understand why he was willing to be executed rather than assent to the king’s divorce. He explained that while he fully embraced his career, his family, and his life, his purpose on earth was to keep his eye on God in heaven. He looked at all his earthly duties through the lens of eternal consequences. As he said at his execution, “I die the king’s good servant, but God’s first.”
More was no mystic hermit or cloistered monk; he was a devoted family man, a world-renowned author, an educator, a lawyer, a judge, and at the time of Henry VIII’s divorce, Lord Chancellor of England; he was King Henry’s right-hand man. The play, then movie, A Man for All Seasons, aptly described this Renaissance man as, first and foremost, a follower of Jesus Christ and a devoted man of the Church.
Faith—how much do we really believe what we say we believe? Jesus said, “If you had faith as a grain of mustard seed, you could say to this sycamine tree, ‘Be rooted up, and be planted in the sea,’ and it would obey you” (Luke 17:6). More had faith and therefore was able to detach himself from many of the earthly restraints that keep us from understanding God’s perfect plan for our lives.
One particular letter to his daughter stands out as an illustration of his otherworldly perspective. As his execution approached, his daughter had written him, excoriating those who once served with and were friends of More’s, but had since turned against him. He admonished her for her lack of charity toward them with this stunning analysis:
Bear no malice or evil will to any man living. For either the man is good or wicked. If he is good and I hate him, then I am wicked.
If he is wicked, either he will amend and die good and go to God, or live wickedly and die wickedly and go to the devil. And then let me remember that if he be saved, he will not fail (if I am saved too, as I trust to be) to love me very heartily, and I shall then in like manner love him.
And why should I now, then, hate one for this while who shall hereafter love me forevermore, and why should I be now, then, an enemy to him with whom I shall in time be coupled in eternal friendship? And on the other side, if he will continue to be wicked and be damned, then is there such outrageous eternal sorrow before him that I may well think myself a deadly cruel wretch if I would not now rather pity his pain than malign his person.1
It is one thing to write such a letter as an academic exercise, but More wrote this letter in the Tower of London as he was awaiting execution. This was faith full-on, and I wanted it. More’s admonition had penetrated my soul. Could I, or anyone, in this day and age have the discipline and equanimity to adopt it as a guidepost in dealing with both the slings and arrows of public life as well as the most personal of crosses?
I prayed for the peace and strength that come from true faith, particularly after Gabriel died. I took great comfort in my belief that Gabriel was in heaven, and if I really believed it, then I should not simply be in peace but full of joy. I first wondered if it were possible to attach my mind and my heart to this eternal perspective and, at once, detach myself from all the earthly thoughts and emotions.
Looking at More’s life, I realized the answer was clearly yes, it was possible, but as I contemplated such a course, I struggled with whether I wanted to walk down that path. Would my family really understand this detachment? In the years after Gabriel’s death, I would on occasion journey down that path, but that resulted in many painful moments with Karen. Why wasn’t I feeling the constant loss and pain she was feeling? That made me question whether I was really at peace with my faith. Was I simply compartmentalizing and walling off my emotions?
As time passed, we both came to terms with losing Gabriel, but the battle continued to rage in me to claim More’s otherworldly faith as my own. I knew it was the only way to truly be at peace with his loss, but particularly in the job I held, it was the only way for me to weather the storms of standing for God’s truth in an increasingly dissenting world. For years, people would tell me that I must have a thick skin, when in reality I was holding on with a thinning faith.
When Bella arrived twelve years later, I faced another test of faith. Was I willing, once again, to accept God’s perfect will even if it meant losing another child? Could I accept God’s will if she survived; could I accept a life dedicated to caring for a fragile child with severe disabilities? And just as important, could I embrace this cross with joy?
Oddly enough, for the first few months of Bella’s life, I had been so convinced by all the doctors and literature that she was going to die, I decided to engage in serving my family and preparing everyone for the day when Bella would leave us. Losing Gabriel was horrible, but I feared that losing a second child would be twice as devastating to Karen, and particularly to our now much older and more aware children. I had to keep my eyes and heart for Bella fixed on eternity, not on the world. I would treat every day as a joyful gift with no expectation of tomorrow. None of our children is ours; they are all gifts from Him. Our responsibility is to make sure they return to Him on the last day, and with Bella, that was assured. Praise God!
I kept all this to myself, because Karen was in a daily—no, hourly—war to give Bella every possible chance to survive and thrive. As it turned out, we had very different assumptions as to God’s will for our little girl. Karen’s assumption was that since Bella had survived longer than most T18 children, it was God’s will that she would make it.
I wanted Bella to be the miracle Karen believed she would be, and I stood at Karen’s side to give Bella every chance to be that miracle. I also looked at the odds, however, and assumed that God’s will was to take Bella to Him much sooner than we hoped. I could feel Karen’s disappointment anytime she sensed my willingness to accept and embrace God’s will for our little girl, whatever it was.
Karen was convinced from the moment we heard the diagnosis that Bella would be different from all the tragic stories we had read and heard about. Her convictions proved to be true. As the days and weeks passed, it became clear it was not God’s plan to have Bella quickly pass through our lives. Our mission this time was to learn to embrace the cross of caring for a fragile little one who would never be able to care for herself, to accept her as she is and to love her as we loved all our children, all the while knowing Bella’s light is a candle in the wind.
With Gabriel I had to understand and accept God’s will, then try to go on with my life as it was before he was born. With Bella, I again had to understand and accept His will that my daughter was probably not going to live long, but she was still alive. So, I had to both deal with the impending death of a child and at the same time change my life to care for her and an equally fragile family. Unlike our experience with Gabriel, our day-to-day lives had changed, and things would never be the same again.
As we all came to grips with this new reality, I was amazed to witness Karen fully embrace it. I had seen this resolve and quick thinking in Karen before when our other children were in an emergency situation. She drew on all the skills she had developed as an intensive care nurse, together with her wisdom learned from years of experience dealing with crises, to organize and provide incredible care for our children. She realized that Bella would need this type of focus twenty-four hours a day, and that is exactly what we provided. She was c
onvinced God had given us this child because we were best able to provide the care Bella would need to live a long, fulfilling life.
I accepted Karen’s perspective and joined her in caring for Bella as best we could, but I had mentally and emotionally prepared myself for the alternative. What I hadn’t prepared myself for were the profound lessons to be learned when you embrace the cross of caring for a disabled person. I had always misunderstood the caring for someone who couldn’t walk and talk—or even feed or clean or do anything else for him- or herself—as a labor of love. I always admired people who would give themselves in such a selfless way, never expecting or getting anything in return. Like all of us, I had my moments of generosity and even selfless giving when I expected and even wanted nothing in return, but they were only moments, not a lifetime habit.
This life with Bella was an unconditional love that wasn’t fleeting; it was constant and often trying and most inconvenient. Karen led the way in our family, but after some eye-opening experiences that I will detail later, I finally joined her in giving myself completely to Bella. Joining Karen was a gift unto itself in our marriage, but so many other blessings also flowed from this unconditional love.
Perhaps the most profound revelation happened on a day Bella was suffering from another respiratory infection. I had just spent an hour or more administering a round of therapies for her and was now standing above her crib, looking at her as she struggled to breathe. She was so fragile, so vulnerable, so totally dependent on us, and none of that would likely change for the rest of her life. Unlike the rest of our children, whom we love just as deeply, Bella will never be able to do anything for us. She will never clean the dishes, make her bed, or make me a cup of soup when I am sick. She is totally disabled, except for, thank God, one thing. She can love.
Bella's Gift Page 13
