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Special Needs, Special Love

Special Needs, Special Love

Editor’s note: This introduction to Bella’s Gift by Rick and Karen Santorum was written by Bella’s older sister, Elizabeth Santorum.

In 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 Corinthians 13:13

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.” 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 Corinthians 12:9

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 Bella’s Gift, 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.

~ Elizabeth Santorum

Excerpted with permission from the introduction of Bella’s Gift by Rick Santorum and Karen Santorum, copyright Thomas Nelson 2015.

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Your Turn

Loving a child with special needs inspires a special love. How has a child with special needs touched your life and further demonstrated agape love in a way you’d never before imagined?