Imagine delivering a beautiful baby girl. Your heart is hopeful, and life is renewed. Witnessing the miracle of life is humbling and awe inspiring. My heart was filled to the brim as I met my little girl, my Bella. She was beautiful. Curly hair, dark lashes, pink skin, and the most perfect little fingers and toes.
Yet, these words, “Why do anything?” were ones my husband, Rick, and I heard repeatedly from the attending doctor in the Neonatal Intensive Care Unit even though my Bella was doing well. Bella had been diagnosed with a rare genetic condition called Trisomy 18, a diagnosis we were told was “lethal” and “incompatible with life.”
I wanted to scream, “She has a name! Look at her!” He denied her the dignity of personhood, by referring to her as some sort of inconvenience to rid us of, a burden without a name.
As so many of you understand, Bella’s birth was a paradox. We welcomed the birth of new life while simultaneously mourning what we were told was imminent and inevitable: that she would die. But, Bella went home from the NICU and she thrived. We loved her, we hoped and prayed, and more importantly, we gave her the best shot at life, like every parent wants to do for their child.
In that doctor’s eyes, she “defied the odds,” but my family and I have always wondered if those bleak odds exist because too often kids like our Bella aren’t even given a chance. Sadly, too often they are written off simply because of their diagnosis. We understand that Trisomy 18 is a serious diagnosis, but in Japan where these kids are given a chance, the survival rates after birth are 5 times higher than in the United States.
We thank God for the physicians who did give Bella a chance. Bella is not just surviving – she’s thriving – and is an extremely joyful little girl who has a very happy life. It would simply take too long to recount the many ways in which Bella has changed our family. We are more selfless, compassionate, hopeful, and focused on the important things in life. Bella has taught us some of the most important things in life, and has done it without ever saying a word. If you’ve been touched by the life of a special angel like Bella, you’ll know what we’re talking about.
I want to encourage all of you parents, siblings, and care takers of people with special needs, because you are truly heroes to us. We know that, often, the days are long and the needs are demanding. But we also know that the joy and love our special children give is immeasurable. We are changed and we are made better through both the sacrifices and the love exchanged. Some of the best advice and guidance we received in the past almost seven years was from other parents. They helped us through some really tough times and we’re so grateful for their love and support. I’m not an expert in anything, but to pay it forward I would like to share a few thoughts with all of you:
1. Know that what you are doing in loving and caring for your special child is incredibly important! Our world too often determines our worth by our abilities and glorifies selfishness, so the witness of these special teachers is needed more than ever. Our role is not to forget or abandon those who suffer, but to love and care for them as they live out their own personal life journeys.
2. Your child has a place in your family and in your hearts. Give him or her a name and honor the dignity of his or her life. You will never regret love! Take a lot of pictures and videos. Create keepsakes, such as, footprints and handprints. Save locks of hair, blankets, and clothing. You have been thrown into an emotional storm, a sea of confusion, but know that you are stronger than you think. Where there is grief there is also healing.
3. Take time for your marriage and love your spouse completely and unconditionally. Remember the beauty and meaning of marital love. The strain on your marriage and family life can often be overwhelming. Take time to nurture your marriage every day. Be quick to forgive, heal, and reconnect. Marital love deepens and matures through both the good and sad times.
4. Don’t be afraid to simplify your life. When we brought Bella home from the neonatal intensive care unit, I knew that I was not just the mother of a very special baby, but also the mother of six other very special children who also needed me. So after Bella, our world got a lot smaller so that each of my children could have meaningful mom time every day. Take one day, one step at a time, and realize that you can’t do it all. Allow people to love you by helping out.
5. “Always seek to do good to one another and to all. Rejoice always, pray constantly, give thanks in al circumstances; for this is the will of God in Christ Jesus for you” (1 Thess. 5:11-18). Use your faith to strengthen you. You can’t do it all, but God always can. He loves you so much!
Rick and I understand both the beauty and joy, as well as, the challenges and heartache in the journey of having and raising a special needs child. For any parents who are on similar journeys your hard work, dedication, and love inspires us. We pray for you every day. God bless you!
Rick and Karen Santorum have written Bella’s Gift: How One Little Girl Transformed our Family and Inspired a Nation. Rick Santorum, a native of Pennsylvania, was a candidate for the Republican nomination for president of the United States in 2012. He served in the House of Representatives from 1991 to 1995 and in the Senate from 1995 to 2007 and is the author of several books, including the 2005 New York Times bestseller It Takes a Family. Rick’s most important role and love in life is being a husband and father. Karen Santorum is a former neonatal intensive care nurse and attorney. She is the author of two books: Letters to Gabriel and Everyday Graces: A Child’s Book of Good Manners. Karen and her husband of almost twenty-five years, Rick, are the parents of seven wonderful children: Elizabeth, John, Daniel, Sarah Maria, Peter, Patrick, and Isabella. Her greatest role and love in life is being a wife and mother.
Elizabeth Santorum, graduated magna cum laude from the University of Dallas. During the 2012 Republican presidential primary, she spent a year campaigning on behalf of her father, Senator Rick Santorum. Appearing on CNN, Fox News, NBC, and many other news outlets at twenty years old, she became one of the campaign’s most requested surrogate speakers. Elizabeth has spent time doing mission work in Uganda, is currently a John Jay Fellow, and has always been a great big sister.
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