The Monday after Easter was Elizabeth’s birthday, and she was a champion on the campaign trail. She handled everything with intelligence, grace, and strength. We made her birthday a beautiful celebration of her life, and we were all happy that our sweet Bella was home. The following morning we held a press conference, and Rick announced, with me, Elizabeth, John, Daniel, Sarah Maria, Peter, and Patrick at his side, that he was ending his run for president. It was a bittersweet day. Bella was on the path of recovery, but I knew in my heart what the outcome of the presidential race would ultimately be, and I feared for the future of our nation. We had just given the United States presidential race to someone who would not talk about the most important issue and our ticket to success: the Affordable Care Act.
When the presidential race ended, and all the goodbyes were said and all the numerous details to wrap things up were completed, Rick and I took a three-week vacation with our children and my dear mom to our favorite place in South Carolina. It was a perfect three weeks, and everyone, including Bella, had the time of their lives! We were finally able to gather around the table as a family for all our meals; we rode bikes for hours on the trails and on the beach; we played board games and laughed the entire time; we soaked up the sun for hours while listening to the soothing sounds
of the ocean as we built sand castles and jumped the waves; and we went to church and thanked God for all His blessings for which we were eternally grateful. It was a healing time for our family, and a time when we added a lot of memories that we will always treasure.
It is in our brokenness that we are healed and brought to new life. We are the clay and Christ is the Potter, and it is He who renews our souls.
Elizabeth recently read a passage to me from one of our daily meditations that touched me. It is about a very special boy named Armando. His story reminds us that only through our brokenness do we really grow.
Armando [is] an amazing eight-year-old boy . . .
Armando cannot walk or talk and is very small for his age. He came to us from an orphanage where he had been abandoned. He no longer wanted to eat because he no longer wanted to live cast off from his mother. He was desperately thin and was dying of lack of food. After a while in our community where he found people who held him, loved him, and wanted him to live, he gradually began to eat again and to develop in a remarkable way. He still cannot walk or talk or eat by himself, his body is twisted and broken, and he has a severe mental disability, but when you pick him up, his eyes and his whole body quiver with joy and excitement and say: “I love you.” He has a deep therapeutic influence on people . . .
What [many people] do not always know is that they have a well deep inside of them. If that well is tapped, springs of life and of tenderness flow forth. It has to be
revealed to each person that these waters are there and that they can rise up from each one of us and flow over people, giving them life and a new hope.
That is the power of Armando. In some mysterious way, in all his brokenness, he reveals to us our own brokenness, our difficulties in loving, our barriers and hardness of heart. If he is so broken and so hurt and yet is still such a source of life, then I, too, am allowed to look at my own brokenness and to trust that I, too, can give life to others. I do not have to pretend that I am better than others and that I have to win in all the competitions. It’s okay to be myself, just as I am, in my uniqueness. That, of course, is a very healing and liberating experience. I am allowed to be myself, with all my psychological and physical wounds, with all my limitations but with all my gifts too. And I can trust that I am loved just as I am, and that I, too, can love and grow.
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Non nobis, non nobis, Domine
Sed nomini tuo da gloriam.
Not to us, not to us, O Lord,
But to thy name give glory.
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LOVE CHOOSES JOY
•
Karen Santorum
•
We have to choose joy and keep choosing it.
—HENRI J. M. NOUWEN
D
ay 2,553: Wednesday is an important day in the Santorum house. On May 13, 2015, Bella turns seven. As some people can imagine, having seven kids in our family, we do a lot of birthday parties. Various decorations, party hats, and reused gift bags are always floating around the house, waiting to be used in the next celebration. Our house is a happy one, full of life. That being said, Bella’s birthday is always uniquely joyful and the cause of grateful reflection.
Sitting on the lawn in front of our house, I watched as Bella
sat alert in her stroller and played with her toys, kicking her dangling, sandal-clad feet back and forth. She looked up at me every now and then to smile or talk. She doesn’t talk like any other little girl. She has her own language; as previously mentioned, instead of speaking English, we say she speaks “Bellish.”
The birds’ songs occasionally broke her concentrated focus on her baby doll. I couldn’t help but laugh as Sarah enthusiastically piled dandelions on Bella’s lap, showing her how to blow the “white fairies” into the wind. “Make a wish, Belle,” Sarah whispered.
Make a wish,
I thought.
A birthday wish for many more years to continue rewriting the medical textbooks, proving the statistics wrong, and offering hope to other families with Trisomy 18 children
.
I watched Bella’s dainty fingers grab the stems, spraying the fairies. Her smile broadened, sea-blue eyes watching the fairies soar up and into the wind. Make a wish. I have made wishes and prayers for you, little one, more than I know how to count.
When Bella was hospitalized, we prayed constantly and found strength in sacred Scripture:
When the cares of my heart are many,
thy consolations cheer my soul.
(Ps. 94:19)
I prayed for His consolations, to be comforted by my Father. As I sat there with Bella, I couldn’t help but smile at how He had answered my prayers. Bella’s condition and sicknesses have given my heart anxiety, but her joy and her life have been my consolation. When she was born, He led me
down a path of growth that was ultimately drawing me back toward Him. When I looked back on the past seven years, I saw that the source of the journey so often riddled with anxiety and suffering was the same source of my consolation: this smiling little girl.
Bella’s life is founded on the prayer, the wish, and the hope that my family will be graced with one more day with her. Nearly seven years later, the outward effects of her condition are hardly apparent physically. Even though, in our minds, she will always be our baby, she falls in the typical height range for a child her age, and her condition has no physical manifestations, save her sweet little fingers that she likes to hold in the typical Trisomy 18 fashion.
Each day is marked by small but invaluable moments. I’ve watched her stare into Sarah’s eyes as she sings her songs or be in stitches as Daniel makes goofy voices. I’ve laughed as she dances with John to the Beatles or giggles as Patrick bounces her on his lap. I smile whenever Bella plays the piano with Lizzie, hands on top of her big sister’s. I’ve witnessed her drive as she walks with Peter, so proud of herself when we sing the “Bella song” in praise. The song is a new take on an old tune, but we are quite sure Bella thinks it was written just for her, because she never fails to light up when we sing it:
We love you, Bella
Oh, yes we do
We love you, Bella
And this is true
We love you, Bella, we do
Oh, Bella, we love you!
Simple joys. In those moments, life is sweet and we are grateful. For each rough day, there are a hundred healthy days in the sun. Ironically, the bad days make the good ones even better. They provide perspective, which in turn changes our attitudes. We appreciate the days of health and happiness all the more because we know they are precious gifts.
Initially, life with Bella was a crash course on learning to see the joy of the moment. When the present is all you are sure of, you can either live in fear of the future and be consumed with the predicted pain, or you can choose joy, making every blessed moment one of beauty. When Pope Benedict XVI arrived in Portugal on May 12, 2010, he discussed one of his favorite themes: beauty. He told the pilgrims who had gathered:
Dear friends, the Church considers that her most important mission in today’s culture is to keep alive the search for truth, and consequently for God; to bring people to look beyond penultimate realities and to seek those that are ultimate. I invite you to deepen your knowledge of God as He has revealed himself in Jesus Christ for our complete fulfillment. Produce beautiful things, but above all make your lives places of beauty.
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“Make your lives a place of beauty.” When I read those words, I immediately thought of our little Bella. Bella makes the Santorum house a place of beauty, and she doesn’t need to change to do that. She doesn’t need to have one less eighteenth chromosome. God created her, and He calls her “beloved.” He knit her together in my womb, has numbered the hairs on her head, and knows her innermost being.
She is beautifully and
wonderfully made!
She has impacted the lives of many, helping them to find the way of beauty and to choose joy, no matter what the prognosis.
In Plato’s
Republic
, Socrates crafted a famous story about men who are chained in a cave. Staring at blank walls, they see only the shadows that are cast from the fire behind them. Unable to reach beyond their limited experience, they accept these shadows as reality and never know what is beyond these wisps of truth. They cannot break their chains or crawl out of the cave and into the light. Socrates said that a philosopher, a lover of wisdom who sees the truth and leads others to it, must save them.
To many, Bella is the one in the cave, but I know that it’s quite the opposite. I am the one staring at the walls. We all are. In
The Weight of Glory
, C. S. Lewis explained this paradox of the human condition, saying, “We are half-hearted creatures, fooling about with drink and sex and ambition when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased.”
In their beauty, wisdom and truth are capable of changing minds. Yet, there is a different type of beauty that leads man out of the cave of his own primitiveness: the beauty of love. Love in its purest form is completely selfless, strong in its gentleness, and the virtue that gives value to all action. “If I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not
love
, I am nothing” (1 Cor. 13:2, emphasis added).
Love is the greatest of all virtues, the necessary intention
behind all sincere and good actions, and it happens to be the quality our Bella practices best. She gives love. Through her constant, radiant love, she leads. In the midst of the most mundane days, her smiles and sweetness draw us up and out of the caves of our own mediocrity, reminding us to rise and live joyfully.
On my own journey of faith, Bella’s silent witness to the power of love has transformed me. Perhaps this new perspective is best summed up in a passage by G. K. Chesterton, who said, “Let your religion be less of a theory and more of a love affair.” Bella has a simple heart, one that will never understand the intricacies of theology, but she practices the core of the Christian faith: love.
As I watched Bella and Sarah play on the lawn that spring day, I was reminded of how Bella’s love continued to restore an appreciation for the simple joys of life, like dandelions drifting in the wind. She will always be innocent, always childlike. It was our Lord who said, “Truly I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child, he is the greatest in the kingdom of heaven” (Matt. 18:3–4).
In a world too often focused on instant gratification and personal satisfaction, it is no wonder that lives like Bella’s are considered “inconvenient.” Joe Klein talked about just that in an article he wrote for
Time
during the presidential campaign:
I am haunted by the smiling photos I’ve seen of Isabella with her father and mother, brothers and sisters. No doubt she struggles through many of her days—she nearly died a few weeks ago—but she has also been granted three years
of unconditional love and the ability to smile and bring joy. Her tenuous survival has given her family a deeper sense of how precious even the frailest of lives are. . . . I also worry that we’ve become too averse to personal inconvenience as a society—that we’re less rigorous parents than we should be, that we’ve farmed out our responsibilities, especially for the disabled, to the state—and I’m grateful to Santorum for forcing on me the discomfort of having to think about the moral implications of his daughter’s smile.
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Bella has opened our eyes to many things: the importance of treasuring each day, how to hope even in the darkest of circumstances, that faith is our foundation, and most important, what pure, unselfish love looks like. As we look back on another year of life, another year of miracles, we are filled with gratitude and hope. We are grateful for one more year of life with our precious girl. We are hopeful that through the witness of Bella’s spirit, people will continue to be inspired, challenged to think about the “moral implications” of my daughter’s smile. Through her life, we see that value is not determined by what society calls “usefulness,” but, rather, value is measured by our capacity to love.