Bella's Gift (19 page)

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 home 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 convinced 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 knows me and lights up like a Christmas tree when she sees me, as well as the others who love and care for her. Standing next to her crib, I became overwhelmed with gratitude that God gave her the ability to know us and clearly express her love for us.

As I thanked God for giving Bella that gift, it suddenly dawned on me that my relationship with Bella is like the Father’s relationship with me. Like Bella, in the eyes of the Lord I am totally disabled. And like Bella, all I can really do for Him, all He really wants from me, is to love Him.

This revelation spurred me to think:
Am I as excited to be with our Lord as Bella is to be with me?
Bella is happiest when she is in our arms.
Am I most content when I am close to our Lord?
My relationship with Bella is different from any other. It is as simple as it can get. I love her and she loves me. There are no expectations, no disappointments, no drama, no bad days, and no arguments. Bella is just her same adorable self every day.

I look in her crib in the morning, and she either greets me with a big smile or lets me know she needs a few more minutes to get that smile ready, but it always arrives just in time to steal my heart away. Yes, every day she needs to be bathed, dressed, fed, and sung to. Well, she doesn’t have to be sung to, but singing to Bella is a guaranteed way to brighten up your day. She loves it, particularly if you include her name in the words to the song. I have gotten pretty creative with lyrics over the years!

We have exercises to do with her to strengthen her muscles and bones, and I often exercise with Bella, literally. She loves to be lifted in the air, so I lift Bella instead of my weights when I do Bella bicep curls and Bella bench and shoulder presses. Let me assure you: I tire out before she wants to quit!

She loves it when I dance with her and swing her around. Now that she is older and bigger, Daddy can dance longer and roughhouse with her more than Mom can, so it is a special time for the two of us. Bella doesn’t like the water, but we take her into the pool every now and then, and that is strictly a Daddy event. It takes a while to ease her in to avoid frightening her, but once we are in, she has a ball.

From time to time we notice little changes; for instance, she will discover a different part of her body or make a slightly different sound. But mostly it’s the same. At times it makes me
sad that she can’t do more, that she can’t learn more, but in the end does any of that really matter to our Father in heaven? She is who God made her to be. Bella’s relationship to all who know her is one-dimensional and in many ways perfect. She loves unconditionally and is loved the same way.

11
LOVE IS PATIENT

•
Karen Santorum
•

Time is too slow for those who wait,
Too swift for those who fear,
Too long for those who grieve,
Too short for those who rejoice,
But for those who love, time is Eternity

—HENRY VAN DYKE

S
itting at our kitchen table, I watched the spring rain slide down the windowpane outside. As dusk settled around us, the house was unusually still. Hearing the drops ping softly on the sill, I turned to Rick. “Do you believe it’s God’s will?”

He put his arms on the table and leaned closer, “Do you?”

I looked back outside. This time, I saw a bird dart through the rain from one tree to the next, then back again. My heart went back and forth, torn like that little bird. I couldn’t count the number of times we’d had this conversation, prayed through this decision together, and sought advice from wise friends and mentors. As much as I hesitated and fought it, I knew my answer.