Bella's Gift (2 page)

Every day of Bella’s life is a blessing and a challenge for Rick and Karen. Something as simple as going out to dinner, much less dealing with Rick’s many responsibilities, requires accommodating Bella’s needs. Even getting a sitter for the evening is an adventure, because babysitting Bella is not your average babysitting job.

Yet, I’ve never heard members of the Santorum family complain of any inconvenience or extra workload they have inherited because of Bella’s condition. In fact, if you didn’t know about Bella, it is unlikely you would guess the Santorums have a special-needs child. They seem oblivious to anything they might be giving up to serve Bella, what they can’t do, or the places they can’t go, simply because Bella is unable to join them.

If Bella’s needs are great, so is the love she expresses in her own ways. Talk to any of the Santorums, and it won’t be long before your hear, “Bella brings such joy to our family.” Bella draws them together. Every family member’s face lights up at the mere mention of her name. They regard each day with Bella as a gift and they choose to live it in hope. The Santorums are transparently honest and remind us that hope is not a guarantee of satisfaction. It is an inner attitude, a power to believe that life matters. Even if it is not perfect or not what we had expected, it is worth the struggle. They are quick to remind us that the power to embrace and accept life as it is, not simply as we would like it to be, is dispensed from only one Source.

What some people might consider a tragedy, the Santorums have allowed God to turn into a blessing.

In
Bella’s Gift
, you will fall in love with the Santorum’s special child, but you will also discover the real Rick and Karen Santorum. Within these pages, they reveal their unvarnished innermost thoughts and feelings. They make no attempt to sugarcoat their questions.
Why us
?
Why this? Why now
?
Where is God in this situation and how could He allow this calamity to strike our family
? Yet they always come out on the positive side of the ledger, emphasizing, “We receive so much more love from Bella than we could ever give to her.”

They share important lessons learned about keeping their own spiritual reserves filled, because the draw upon them is deep and frequent. Perhaps most of all, they remind us what really matters in life.

If you are a person who believes that love is a choice grounded in commitment, yet you wonder at times what that commitment really means, what it asks of you in the hard places, when the arguments for calling it quits seem to be carrying the day,
Bella’s Gift
is for you. I must warn you: this book does not pander to wimps. Quite the contrary, the courage and commitment exhibited by the Santorums call each of us to deepen our relationships. They practically dare us to risk taking this journey with them, to risk loving with our whole hearts, to continuously renew the commitments we have made, and to demonstrate our love for one another every day.

Bella’s Gift
challenges each of us to be less selfish, to give more of ourselves. You may not have a special-needs child, but there is someone close to you who needs some special attention, a special smile, a hug, a pat on the back, or a special word of encouragement. These expressions take little time and don’t require a lot of money. Indeed, anyone can choose love over selfishness.

The Santorums effectively remind us that this love requires supernatural assistance—in fact, when you get right down to it, this sort of love comes only from God, working in and through our lives. But that’s the good news: His love is enough; His supply is inexhaustible. So when you find yourself growing weary in well-doing, remember Bella’s gift to the Santorum family—and to all of us.

INTRODUCTION

•
Elizabeth Santorum
•

I
n his letter to the Corinthians, St. Paul told us “now faith, hope, and love abide, these three; and the greatest of these is love” (1 Cor. 13:13
NIV
). Love is the greatest of the theological virtues and is at the heart of Christ’s teachings. Yet, the dictionary defines love as “an intense feeling of deep affection.” If love is merely a feeling, then it cannot be a choice. If the highest similar state is affection, then it requires nothing deeper than tenderness or passion for another.

Love is a concept misunderstood by most of modern society and a look at its origins can clarify what “love as a choice” truly conveys. The ancient Greeks used four words to describe love:
storge
,
philia
,
eros
, and
agape
.
Storge
was familial love and defined the bond man feels toward family, persons, and animals. It often referred to love that is constant, love that one takes for granted.
Philia
described the love of friends or relationships formed based on compatibility and mutual interests.
Eros
was passionate love—not only in a sexual sense, but also in the wonder, appreciation, and desire that man has for sublime beauty.

Finally, the ancient Greeks used
agape
to describe “when one person has much to give to another [who is] more needy.”
¹
This sort of love exists when there is a generous emptying of oneself in the service of another, without expectation of a reward. It is the love our heavenly Father has for His children.

When my sister Bella was born, I was a seventeen-year-old girl without a proper understanding of
agape
love or its practice. No doubt I received plenty of that deepest form of love from my parents growing up, but I had taken its existence for granted. I loved my parents and my siblings in the sense of
storge
and
philia
, but did not distinguish it from my other pleasant, reciprocal relationships. My ambiguous conceptions of love encompassed everything without noting any distinctions. My shallow understanding of love was challenged and deepened when Bella was born and diagnosed with Trisomy 18. I assumed that my little sister would never be able to love me in a way that was familiar to me. We would never share clothes, talk about her crushes, or paint each other’s nails. I only saw dependency, not reciprocity.

I wanted to love her, but I did not know how. Honestly, I wanted her to be able to love me too. I was blind, selfish, and afraid. Yet, when I held Bella for the first time, I saw her fragility and, with it, her perfection. I saw her vulnerability, not her helplessness. She was not passive but responded to me in ways that showed an open receptivity to my love in the form of simple, newborn appreciation. As I watched her, another Bible verse came to my mind, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Cor. 12:9
NIV
). God would do mighty things through this little one. Her vulnerability was the perfect vessel to manifest His strength.

As I held her, I saw that her perfect vulnerability would require a more perfect,
agape
, love. Bella’s very life demanded it. I initially feared this dependency, partially out of selfishness and partially out of unfamiliarity. As I stood next to her at her baptism several days later, I promised to be her godmother, to instruct her and guide her on her journey with Christ. Yet, it struck me that I would learn more about God from my meek, dependent, and “disabled” little sister than I could ever hope to teach her.

She called me to practice
agape
love. I would be called to imitate the love of our Lord for me, to truly walk with Him day by day in my journey with Bella. I could ask nothing in return from her, except for the love that she gives me every day. I am continuously humbled by the example of my parents as they selflessly and joyfully care for her, in both good days and bad. To them the radiance of their beloved baby girl is a reward in itself.

Bella has taught me there are different kinds of love and that the highest form of love is self-giving and chooses the beloved even when it proves difficult. The way our family lives has changed dramatically in the past several years and we wouldn’t have it any other way. Bella is at the heart of our home, a quiet and smiling reminder that every day is a gift. Her tenacity, strength, and unqualified love encourage us daily. We have learned that life is not centered on our individual needs; it is about living for Christ and serving others with a Christlike
agape
love. Love is not about what we can gain; it is about what we can give.

In the following pages, my parents share the story of Bella’s life from their distinct perspectives. They grieved in different ways, but they grieved together. When the realities of caring for a special-needs child could have driven them apart, they held each other even closer. When Bella reached milestones and celebrated huge victories, they thanked God for them and shared in the joy of her life.

As I write this, Bella sits here with her hands on top of mine. Occasionally, she’ll look up at me, find my face with her hand, and then return to following my hands on the keyboard. She reminds me of how we all must look to God the Father, we who are so in need of His love and reassurance. May Bella’s story witness to the transforming love that these special children bring into a world that so desperately needs to experience the self-giving love the Father has for His children.

1
LOVE IS A LEAP OF FAITH

•
Karen Santorum
•

I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

—ROMANS 8:18

T
here were five. Five fragile, tiny fingers held the cord that monitored her heart. The lifeline was coated in grey rubber and connected to a machine. Up. Then down. Then up. Then down. The jagged line stenciled her vitality. Glass separated me from her, her beautiful heart that I longed to
know, to comfort. I put my fingers to the glass. There they were, those five perfectly formed fingers. Did they reveal that much? I saw nothing lacking. I saw her vulnerable figure, her soft skin, and her wisp of curly hair. Like mine. Her hair was like mine. Three pounds, fifteen ounces of body and soul grew to visible perfection in the safety of my womb.

Sometimes I still can imagine Bella kicking within me. All the more reason why every feeling revolts at seeing her outside of me, before it was time, before she was strong. Did I fail to protect her? She shifted in the isolette, hand releasing the grey line. I saw it then. To this day, I wish I had imagined it, that there was a mistake. Pinkie finger and index finger rested on top of the two middle fingers, points touching. There was my sign. That natural and simple movement had shattered my hope, because my sweet little girl had just displayed one of the classic markers for Trisomy 18.

The doctors had tried to prepare me. As Bella grew in me, they knew that something was “off,” but without prenatal testing, they were unable to determine exactly what. A rare genetic disorder called Trisomy 18 was only one of the possible diagnoses.
But no, not that,
I had thought. I was so sure. So sure.

We had given away our baby things and thought we were moving into the next phase of life, but God had other plans and blessed my womb once more with another child. Surely He would protect her. But doctors had done tests, confirming what I had never dreamed possible. As a nurse, I knew what this meant. Of the 10 percent of babies with Trisomy 18 who survive birth, 90 percent don’t make it to their first birthday. The prognosis was terrifyingly bleak; the odds were stacked against her. My little girl, my Bella, had an extra eighteenth
chromosome in every cell of her body, making a genetic code doctors call “incompatible with life.” Lungs shutting down, holes in her heart, kidney problems, and severe intellectual disability were horrors we should expect.

Like the blood pounding in my head, the list of symptoms boomed like a frosted iron hammer pummeling my heart. Yet, for some reason, I needed to see for myself. I had to look at my darling little girl and see some physical manifestation of the fatal condition she was dealt. Her delicate hands, those five fingers: they were my sign that she did in fact have Trisomy 18.

Within those whitewashed halls, I had no concept of time. It passed like water running through my fingers. My husband, Rick, and I were ghosts in a hollow world that was frozen inside hospital windows. Cheap blinds provided a thin veil between the fragility of the ill and the vivacity of the healthy world. Stooped shoulders, cold acidic coffee, rubbing alcohol, dripping IVs, beeping monitors, and white walls defined my physical reality.

A haze had come over me, my eyes never free of tears. I had so many questions and no answers to satisfy the screaming voice in my head that asked,
why?
My child had been given a death sentence. Scrubbed doctors with words of compassion that felt hollow and insincere told us mere days remained until her body would fail her. No surgery could fix this, no medicine heal it.

Fruit baskets and flowers filled my hospital room as I recovered from the C-section. Rick and I were supposed to be receiving congratulatory cards celebrating the birth of a new life. Instead, paper notes with cheap expressions of sympathy mocked me from my bedside table. Did they make cards for
“staying alive,” not just “getting well”? And then there was the silence from those who did not even acknowledge Bella’s life. It was as if she did not exist. They appeared to ignore everything that made my Isabella Maria unique and wonderful.

My heart was angry and bitter, lashing out in response to such acute sorrow. When my other children were born, we were overflowing with joy and left the hospital within twenty-four hours. Would my new little one know nothing but this sterile cage? Hurt and anger burned through me, searing hot in my veins. I felt heat and, with it, some sense of life again. How can life and death be dealt in the same hand, at the same moment?