We burden and we lift burdens; it’s all a part of being the body of Christ; it’s all part of loving Christ more completely.
As the Alzheimer’s progressed for the last few years of my dear father’s life, my extraordinary mother took care of him and attended to his every need. He was always clean, well dressed, properly nourished, and given the gift and peace of remaining at home. Our family was there every day for my mom, helping out in many ways. As the Alzheimer’s stole my dad’s brilliant mind, what remained were his sweet smiles, gentleness, and kindness. And even as the disease became more entrenched, Dad was never pushed aside or forgotten. We continued to talk to him and care for him. We still saw his dignity.
In my parents’ sixty-seventh year of marriage, my father died surrounded by his loving family and pastor. Rick and I were there at his side, holding his hand as my mother kissed his head and told him she would love him for all eternity. As my father hovered in the veil between heaven and earth, the last words he heard from his family were those of gratitude and love.
My mother’s sacrificial love and constant devotion to my father were a powerful witness to our family. She lived out her marital vows with love, until the very end, and reminded us that Christ teaches that we are here to serve others. “More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Rom. 5:3–5).
Rick and I will be forever grateful to my mother for inspiring us to emulate and live that sort of love. We know without a doubt that her strength and example during my upbringing, throughout our marriage, and particularly as she cared for my father, in turn gave us the strength to navigate life with Bella.
As we reflect back on the days that followed Bella’s birth, we now realize the peace Rick was feeling came from Christ’s love. It was God’s way of strengthening him so he could hold our family together as the storm thrust shards of glass into our hearts. He experienced peace within the storm, and that kind of peace only comes from complete trust and hope in Christ.
For whatever was written in former days was written for our instruction, that by steadfastness and by the encouragement of the scriptures we might have hope. May the God of steadfastness and encouragement grant you to live in such harmony with one another, in accord with Christ Jesus, that together you may with one voice glorify the God and Father of our Lord Jesus Christ. (Rom. 15:4–6)
No one escapes suffering. Everyone goes through tough times. Suffering is a part of our human condition and cannot be avoided. Setbacks, failures, pain, suffering, and hardships are all a part of life, but whether we are able to find peace within the storm depends on our resilience and perseverance. Whenever one of our children tells us that they don’t want to fail at something, we remind them that there will be times in their life when they will fail, but it’s how they come through it that matters. If we choose to focus on the negative, the failure itself, the darkness will oppress and consume us. Eventually it will destroy a person. We need to embrace the fact that we’re human and our lives will be filled with suffering and hardship, but we have the ultimate hope and victory in Our Lord.
As we cared for Bella daily in the NICU, it was a dark time for me. I was allowing despair to consume and exhaust me. I did not have peace in the midst of the storm. Eventually, however, I realized that, as during the birthing of a baby, I needed to embrace the pain. I needed to feel the pain more fully so that I could move through it and allow it to strengthen me. I was walking through fire. And like iron being forged in the fire, or brass polished by friction, that time in the desert shaped me and helped me to grow.
As I found my joy again and reclaimed my hope, I knew that I needed to forgive the doctors, critics, and skeptics who did not want to give Bella a chance. I prayed for their change of heart and I prayed for the grace to forgive them as the Scripture says, “Let all bitterness and wrath and anger and clamor and slander be put away from you, with all malice, and be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you” (Eph. 4:31–32). I understand that everyone makes mistakes, and we’ve all said and done things that we wish we could take back. As time went on, I stopped dwelling on whether their actions were out of ignorance or malice. Through God’s grace, my heart healed from their wounds. I forgave them and carry no bitterness or wrath. My only hope is that maybe the naysayers will pick up this book someday and realize what the world would have missed without Bella and others like her.
How did we crawl out of a pit of despair and maintain a sense of hope? Our help came from a lot of prayers and a book, Arise from Darkness, by Fr. Benedict J. Groeschel. We had read it many years before and realized during Bella’s first year of life that we needed to read it again. Our life was like a pendulum swinging between joy and desperation. The book reminded us of precious truths that we knew but had forgotten in the stress of the time. Father Groeschel’s book reminded us to use suffering and hardship as a time for spiritual growth and healing. He instructs us to see the joy we receive when we place our hope and trust in God and truly, completely live them in our daily lives.
He also pointed out another essential life skill—to lighten up. We need to laugh more at ourselves. We need to feel joy more consistently. So after bringing Bella home from the NICU, or the PICU, Rick and I would make sure to have fun as a family. We did things we had always done, but needed to do again. We went for hikes, swung on our tree swing, played board games, and watched I Love Lucy reruns. Rick took the kids on tractor rides, and we rejoiced in a thousand other happy ways to maintain the joy in our home. This helped our family immensely, especially during Bella’s first few years of life during the times when we felt knocked down, only to get kicked again. Our experience proved to us that hope keeps us going, it gives us joy, and it reminds us that things will get better if we accept our suffering and trust in God’s love, knowing He is there, helping us to bear our cross.
I’ll never forget one of my instructors in nursing school telling the class, “When patients lose hope, they die.” She explained that hope keeps us moving forward and gives us the fortitude and encouragement to overcome whatever obstacles or pain we may be experiencing. She went on to explain that one of our roles as nurses is to help our patients to have hope—not false hope, but hope in something, anything good. During my orientation as a NICU nurse, the head nurse also stressed the importance of sharing the positive aspects of a baby’s condition when giving parents an update on the baby’s plan of care. She said that the babies feel their parents’ love and hope.
When Bella was six months old and in the hospital, I remember sitting at her bedside, holding her tiny hands, and sobbing. I had been praying fervently, but could find nothing good in her situation. I then did what I always do in times of distress: I called my dear mother. She calmed me and reminded me that there are blessings even in the worst situations. She told me to go around the room and give thanks to God for all the blessings.
Perplexed, and a little taken aback, I hesitated, then did what she had asked. It took a while, but eventually I realized that the tubes and machines I had been resenting were actually immense blessings. They were sustaining my little girl and helping her to heal. When we’re able to see the blessings in every situation, as hard as it may be, it elevates us to another level, and we feel gratitude, followed by joy. This is not always easy to do, and it is something I need to keep reminding myself of during each new challenge.
We thank God every day for Bella. She has taught us that hope in Christ brings joy. We don’t know where our lives would be without her. We look at her every day and see the face of God. We know that this little girl, who some misguided doctors thought would be such a burden, has actually become one of our greatest blessings. Bella has shown us that every life is a gift. Bella is totally dependent and totally at peace with her dependenc
e. All that she doesn’t have doesn’t matter. As Nick Vujicic suggests, she doesn’t need her circumstances to change; she has all that she needs. Bella, in her total dependency, lives only to love and to be loved. It’s all she knows and all she needs. Her “infirmities” are what free her completely and give her peace and joy as she soars on eagles’ wings.
Bella has taught us all how to live. We have come to realize our own infirmities, all that we “lack” or complain or worry about. We have come to realize our complete dependency. We have learned what really, what only, matters. God has given us the gift of Bella because He wants us all to be like Bella. If we recognize His all-encompassing, all-sustaining love, we will forget our infirmities and do what Bella does—love everyone in our world, experience the peace that passes understanding, and radiate pure joy.
Through Bella, God gives us the grace to cooperate with His will and empty ourselves for others. Then we can become His arms, embracing the world; His legs, still walking dusty streets; and His heart, still beating with the Divine Compassion manifested in Jesus Christ, the One who became the least of these in order to bring all of us into the full communion of Love.
We hoped. We hoped in Christ, and He allowed His divine grace to shine within us during the darkest times.
Our little Bella has taught us so much about the way to walk along on this path of life. Through her, we are learning more about how to love and finding hope that never disappoints. She teaches us more every day. She fills us with heavenly hope, the kind that reaches out and shines its light into every area of life. We hope that by reading about her, she will touch you as well, no matter where you are in your journey.
A MOTHER’S NOTE OF ENCOURAGEMENT
• Karen Santorum •
God bless you, for you have been thrown into an unknown world, an emotional storm, and a sea of confusion. It’s extremely painful and exhausting, but know that you are stronger than you think. I promise you things will get better. Where there is grief there is also healing.
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 in either ink or plaster of Paris, save locks of hair, blankets and clothing, or ID bracelets. It will be hard, but I promise you it will get better.
Love your husbands completely and unconditionally, and understand that you will grieve differently and that’s all right. Remember the beauty and meaning of marital love. Make your world simpler so that your other children will also receive your love and time. It will be hard, but I promise you it will get better.
Take one day, one step at a time, and realize that you can’t do it all. Allow people to love you by helping with meals, the children, the house, and giving you some time to breathe. Find comfort in support groups.
“Always seek to do good to one another and to all. Rejoice always, pray constantly, give thanks in all 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, but God always can. He loves you so much!
When you are at the end of your life standing before God, the only thing that will matter is how much you loved.
A FATHER’S NOTE OF ENCOURAGEMENT
• Rick Santorum •
It’s true that “God doesn’t give us more than we can handle,” but that doesn’t mean we won’t be stretched thin and at times broken in the process. Place all your trust in God and lean on Him. Pray fervently. One of my favorites is “The Universal Prayer”: “Lord, I believe in Thee; may I believe more strongly. I trust in Thee; may I hope more confidently. I love Thee; may I love Thee more ardently . . . May I learn from Thee the nothingness of this world, the greatness of heaven, the shortness of time, and the length of eternity.” Your child will help you to grow in love and holiness. You just have to allow it. You will come through the dark valley and into the light.
The most important thing, besides our faith, in caring for a child with disabilities is a strong marriage. Pay attention to your marriage, nurture it, and dive all in. Love your wife completely and unconditionally and understand that there is no room for selfishness in marriage. To the people who think happiness can be found someplace else—you are dead wrong—just look through your photo albums.
Esto vir! This means “be a man” in Latin. Real men don’t abandon their wives and children—especially when they need you the most. It’s true, your life has changed and you’ll never be the same. It’s painful and it’s hard, but it’s also an opportunity to grow in character. Fathers are the protectors of their families. Real men don’t walk away from a good fight, and it’s your wife, precious child, and family that you’re fighting for now. Esto vir!
ACKNOWLEDGMENTS
First and foremost, Rick and I thank our dear Lord for all His tremendous blessings in our lives. “O give thanks to the Lord, for he is good; his steadfast love endures forever (Ps. 18:1)! The greatest blessings being our marriage and each and every one of our children: Elizabeth, John, Daniel, Sarah Maria, Peter, Patrick, and Bella. Thank you dear daughters and sons of ours for all your love, support, and patience as we were writing this book. You are all loved “to the moon . . . and back!”
Rick and I give special thanks to our daughter Elizabeth, who cowrote Bella’s Gift with us. It was a complete joy working on this project with you, precious Elizabeth! We laughed, we cried, and shared our hearts with each other. Thank you for your insights, beautifully expressed thoughts, hard work, and organization. Thank you for keeping your procrastinating and busy parents on schedule. Bella’s Gift is a very special book because of you. We love you so much, darling!
As always, my dear mother was a great inspiration and pillar of strength throughout the writing and various stages of this book. Anytime I was overwhelmed or completely emotional as I was writing, Mom, you always calmed my anxious heart. Thank you for all your love, encouragement, and wisdom. You are such a huge blessing to our family. We love you beyond words!
Huge thanks from the bottom of our hearts to Bridget O’Donnell who was an answer to our prayers many years ago. This book would not have been possible if not for your exceptional help and care of our family, especially our sweet little Bella. You have walked every single step of this journey with us and we’re so grateful for all your love and kindness through the years. As you know, my entire family loves you, Bridget!
Rick and I thank our dear friends Mark and Leanne Rodgers, who have traveled an amazing journey with us for the past twenty-five years. We’ve worked on so many issues and projects together, gone to more dinners and trips than we care to count. It’s been so much fun sharing all our hearts and lives with both of you. Thank you, Mark, for being a great book agent and thank you both for editing the book. Your recommendations improved the book. We feel immense love and gratitude toward you.
We thank Nadine Maenza, the executive director of our political action committee, Patriot Voices, and a dear friend for the past twenty years. Nadine is also someone who, like us, experienced the death of a child and has raised a child with a disability. Nadine, you get it and you’ve always understood us. Your empathy and kindness have been great blessings to us. We also give huge heartfelt thanks to our steadfast friend John Brabender. For the past twenty-five years you’ve used your brilliant gifts to let the people of Pennsylvania and the rest of the country get to know us. You are amazing, John, and we treasure your friendship. Thank you, Nadine, John, and our fantastic communications director, Virginia Davis, for editing the book and for everything you’re doing to make sure Bella’s Gift will touch many hearts and lives.
We cannot thank our editor, Janene Maclvor, enough for all her guidance and thoughtfulness with Bella’s Gift. Janene, you always provided valuable advice and direction and did it with so much joy! Thank you for your encouragement every step of the way and for sharing our happiness every time we reached a milestone. I
n addition to Janene, Rick and I are extremely grateful to the entire team at Thomas Nelson Publishing who helped with Bella’s Gift: publisher, Brian Hampton; marketing VP, Chad Cannon; marketing managers, Erica Reid and Katy Boatman; publicity, Emily Lineberger; packaging design, Belinda Bass; and graphic designer, Walter Petrie. Thank you all for your exceptional work on Bella’s Gift.
We give many thanks to our friends Deacon Keith Fournier and Sharon Hickson. You were so generous with your time, suggestions, and edits. It touched our hearts that you cared deeply about this project. Deacon Keith, thank you for your love for Bella and your spiritual guidance that strengthens us. We cherish your friendship. We also thank our family friend Steven Munoz, who lost a lot of sleep working on the pictures with us! You are a whiz on the computer and the pictures would never have been on time without you. Thank you, also, Steven for always being there for our family. You are a true and loved friend to every member of our clan.
Thank you to Ben Kafferlin for your support and for getting the copyright permission for the story “Welcome to Holland” by Emily Perl Kingsley. Thank you, Emily, for allowing us to use your wonderful story that perfectly sums up a parent’s feelings.
Words cannot begin to express how much fun we’ve had when Liz Zernich has taken our children’s pictures. We’ve been going to the Timeless Portraits by Liz studio in Sewickley, Pennsylvania, for twenty years and have enjoyed every minute of being in such a delightful and cheerful place. Thank you, Liz, for taking the most beautiful pictures of Bella and for giving us the gifts of capturing joyful memories that we will treasure forever. You are so kind and talented, and we can’t wait to have Bella visit the moon, the English garden, and the castle just as her brothers and sisters did!
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