Sunday is an important day in the Santorum house. On May 13th, we’ll be celebrating a birthday. My little sister, Bella, is turning four. As some of you can imagine, having seven kids in my family, we do a lot of birthday parties. Various sweets, party hats, and re-used 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. I say this because every year with Bella is a gift. Bella was born with a rare genetic condition called Trisomy 18. Of the 10% of babies with Trisomy 18 who survive birth, 90% won’t make it to their first birthday. When she was born, the prognosis was bleak. The odds were simply stacked against her.
Ten days after she was born, Bella came home from the hospital. As doctors explained to us how to best prepare for her death, we chose to celebrate her life. And we did, every, single day. I remember when we first brought Bella home; we hung a sign in our living room. It read, “Happy 1-Week Birthday Bella.” As the weeks went by, we changed the sign from 1 to 2 to 3 weeks. Eventually weeks turned into months and now, thanks be to God, years. We fought for her each step of the way, giving her every opportunity to do well. She beat the odds and has been doing so ever since.
As I reflect on this last year of her life, it has been amazing to see how many people Bella has touched and the issues that have been discussed in the public sphere as a result of her condition. In the middle of winter, when the world found out that Bella had been hospitalized, the response was overwhelming. Our inboxes and mailboxes were flooded with notes of encouragement, prayer, and support. People in all walks of life from around the country united around the witness of a three-year-old little girl. We even got notes that said, “I don’t agree with you politically, but thank you for being a voice for the special needs community.” She brought unity and refocused us on what was really important in the midst of a heated primary season.
When her hospitalization hit the news networks, commentators started discussing important issues surrounding the special needs world, such as the legal struggles that occur when special needs children aren’t given fair medical treatment or any treatment at all. A whole host of issues were brought to the forefront of the debate, dealing with families, the pro-life movement, the special needs community, and so much more. It was as though people realized that the pro-life movement doesn’t end at birth, but it continues at the bedsides of the disabled, the elderly, and the vulnerable. Bella put a face to the helpless, those whom society looks upon as “useless.” When did we become so utilitarian that we measured worth in terms of “ability?” Bella is able to do the most important thing in life more perfectly than I will ever be able to: love.
As people started to learn more about Bella, we discovered that more and more people were bringing their special needs kids to our campaign events. We even met several beautiful children with Trisomy 18. They talked to us about their struggles, and all were different, but there was a common thread in all of their experiences: the irreplaceable joy and love their child brought into their lives. In a world too often focused on instant gratification and personal satisfaction, it is no wonder that these lives are considered “inconvenient.” Joe Klein talked about just that in an article he wrote for TIME several months ago: “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.”
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 importantly, what pure, unselfish love looks like. So 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 sister’s smile.
Happy 4th Birthday Bella
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