Bella's Gift (10 page)

Through the years, our kitchen had been the heart of our home. I knew the importance of our family’s gathering around the table. When we made meals, the children were always there with me, and frequently Rick would pitch in too, chopping, peeling, and stirring. My dear mother taught me how to cook; in fact, in my upbringing our kitchen was the center of our home. She was a wonderful cook and made everything from scratch. I can still hear her singing in the kitchen as we peeled garlic and chopped vegetables. I did not know any other way, and to this day I love making my mother’s recipes. To put a nourishing and delicious meal on the table took a lot of time and effort. Unfortunately, this was a luxury I no longer had. Now it was shortcut time. We could not live on scrambled eggs and grilled cheese sandwiches forever.

I learned every recipe in the book. Rick’s father was Italian and a great cook. He used to take many shortcuts and would say, “Why reinvent the wheel?” I took his advice. I had never used a Crock-Pot, but I broke down and bought one. I found a few slow-cooker recipe books at the Williams Sonoma outlet store. They used fresh ingredients: shallots, garlic, herbs, and wine. The delicious aromas of home-cooked meals, just like my mother made, once again infused our home.

My slow cooker saved me, because it allowed me to make dinner when there was a break in the morning or early afternoon. When the children came home from school and walked through the door, they knew Mom had something special
planned for dinner. I’ll never forget how wonderful it felt, when I was growing up, after a busy day at school to walk across our front lawn and into our front door to the smell of my mother’s homemade bread or cookies. She made the best bread I’ve ever tasted, and we would have it warm out of the oven with butter. It felt so good to be doing this for my children once again.

Determined to make every minute count with Bella, we recognized the moments with her as pure gifts and worthy of joyful, grateful celebration. She continued to beat the odds. Hope grew. From the time we brought Bella home from the NICU until now, almost seven years later, Bella has been our refuge from the stress of the world. When I hold her, all life’s cares and worries vanish and I’m completely caught up in the moment. She renews my perspective and gives me an optimistic outlook on life. She is a source of peace for me.

Bella is a source of peace to every person who is blessed to know her. Her peace comes from heaven and a loving Father who created her in His image. She is here for a reason, and there is no coincidence in the significance of her birth date. Bella was born on May 13, 2008, which is the feast of Our Lady of Fátima. This is an important day in the Catholic Church, because it is the day the Blessed Virgin Mary appeared to three children in Fátima, Portugal, and it’s also the day Pope John Paul was shot.

On May 13, 1917, and on the thirteenth day of each of the next six months, Our Lady appeared to three shepherd children at the Cova da Iria, just outside their home village of Fátima, as they were herding sheep. The children who witnessed these apparitions were Lúcia Santos and her two cousins, Jacinta and Francisco Marto. Our Lady of Fátima
asked people to do penance and to offer up sacrifices and their sufferings for peace in the world. She also asked them to pray for the conversion of sinners and for Russia to turn back to the Christian faith in order to avoid severe harm to humanity. She further stated that the First World War would end, but that a sign in the night sky would come before another world war. On January 25, 1938, a brilliant and fiery aurora borealis lit up the Northern Hemisphere and could be seen all over the world. On March 11–13, 1938, Hitler seized Austria, and then invaded Czechoslovakia eight months later.

During the last apparition, Our Lady promised a miracle to prove her messages were true. On October 13, 1917, around seventy thousand people gathered and witnessed the Miracle of the Sun, when the sun “danced” in the sky. Even anticlerical, non-Christian reporters described the sun as full of brilliant colors and trembling, whirling, and dancing in the sky, defying “cosmic laws.”
¹

On the sixty-fourth anniversary of the apparitions, May 13, 1981, a Turkish gunman shot Pope John Paul II. The pope had a deep devotion to the Virgin Mary and was looking at a picture of her when the militant shot him. Earlier in the day, the pope had met with Dr. Jerome Lejeune, the geneticist who discovered Trisomy 21. Dr. Lejeune was a great advocate for people with Trisomy 21. It was also on that same day that Pope John Paul II started the institute for the study of marriage and the family, and the Communist Party’s pro-abortion march was canceled.

After being shot, Pope John Paul suffered immensely. He experienced serious pain and other medical issues because of the injury. Through it all, he taught the world about suffering.
He taught us that suffering brings us closer to Christ. John 16:33 says, “In the world you will have tribulation. But take heart; I have overcome the world.”

I don’t claim to understand the significance of Bella’s birth date, but I do know that God does; He chose it. Bella’s full name is Isabella Maria.
Isabella
means “consecrated to God,” and
Maria
refers to the Blessed Virgin Mary, who teaches us the joy of saying yes to God’s invitation of love. Mary, the mother of the Lord Jesus Christ.

Mary’s yes, in what would certainly have been called a crisis pregnancy in our day, speaks loudly to an age in which the beauty of every life is all but forgotten. And like Mary, our little girl is filled with grace. She is a gift—a treasure from heaven—and her life is teaching us the meaning of love’s invitation. Bella’s life has affirmed the messages of Fátima, and through prayer and sacrifice we have drawn closer to Christ and felt His bountiful love.

6
LOVE IS PERSISTENT

•
Karen Santorum
•

Death and life are in the power of the tongue.

—PROVERBS 18:21

I
n the summer of 2008, our family began a new journey together as we learned how to love and care for Bella. The doctors had sent Bella home from the NICU on hospice. Care for the dying for our newborn baby—a painful paradox. The hospice nurse who visited Bella once a week was kind and understanding, yet there was a somber darkness surrounding her coming, simply for the reason that hospice doesn’t invest
in life; it prepares for death. Though she was kind, I dreaded her visits. She brought pamphlets about coffins, funerals, and grave sites. “It’s always best to be prepared,” she’d say as she showed me the different types of marble for a tombstone.
Tombstone
. The word bludgeoned my heart.

Hospice offered no pediatric supplies. The few items we did receive for Bella’s everyday care were the wrong size—made for adults and not for a preemie baby. I remember opening a box, thankful for a new shipment of nasogastric tubes, just as Bella was running out. Upon opening the first bag, I realized the tubes were for an adult and far too thick and long to insert into my baby’s tiny nose. My hands began to shake. We were fighting for life; they had settled for death. So many obstacles. Even obtaining those life-giving supplies became another battle.

Rick heard me as I cried out in desperation, and he came in, wearing a confused look of concern. He saw me staring at the box, lip trembling as I cried out: “These are all adult sizes!” Rick simply hugged me as I cried. I immediately called our pediatrician, Dr. James Baugh, and described our situation. Fortunately, his office gave us a few NG tubes from their medical supplies closet. I felt alone, as though crawling up a shale-covered mountain. No summit in sight. No healing.

Other obstacles to hope were the “professional articles” filled with statistical predictions of how long Trisomy 18 children live but offering no advice about how to help them stay alive. Much of my time was spent on the phone, fighting for supplies, talking with doctors, and trying to remain calm while battling my way through all the answering machines at the insurance company and our physicians’ offices. Eventually
I got smart and started ordering medical supplies and necessities, and Bella’s clothes, online. She was tiny and needed preemie clothes. I ordered her some adorable preemie clothes when she came home from the NICU.

Bella was our little love, and we wanted her to have soft sleepers with whimsical princesses, bears, and bunnies. After placing the order, I sat at my computer and cried, wondering if the clothes would get here in time for Bella to wear them. Anytime someone gave us an outfit for six months or nine months, I would sigh and hurt inside, thinking she might never grow big enough or live long enough to wear the outfit.

I brought the sadness from the NICU home with me, but it was time to be positive and count the blessings. The doctors explained to us how best to prepare for Bella’s death; instead, we chose to celebrate her life. And we did, every single day. From the “Happy Birthday Bella” sign to the pink roses (Bella’s favorite), balloons, and cupcakes. We had a “birthday” party every week.

My daughter Elizabeth, who is wise beyond her years, said to me shortly after our return home, “Mom, Bella knows when you’re sad and crying. We should be happy while she’s with us.” She was absolutely right. Even the smallest infants, and all our children, feel a parent’s emotions and are affected by them. Her words struck me, and my attitude changed. From that moment on, we decided to focus on Bella’s life. We lived in celebration of the blessings that came from her life. We would not preemptively mourn her predicted death.

We began doing
well
baby visits. It was a refreshing change to focus completely on Bella’s health and helping her through her medical issues, rather than talk about grave sites. I ordered two books from the SOFT (Support Organization for
Trisomy 18, 13, and Related Disorders) website about caring for a baby with Trisomy 18. They offered valuable advice that we used to guide us in Bella’s daily care and her doctor visits. I ordered extra copies for our pediatrician, Dr. James Baugh, which he appreciated, since he had never cared for an infant with Trisomy 18. He made house calls and took great care of Bella. As always, he was kind, thoughtful, and compassionate. Bella was gaining weight and on the growth chart for normal babies. She wasn’t just surviving; she was thriving!

During one of Dr. Baugh’s visits to our home, I asked him to double-check a dose of morphine that the hospice doctor had prescribed. The day after Bella’s arrival home, the hospice doctor and nurse had visited and explained in cold, graphic detail that Bella would need this morphine when she “began to fail.” The hospice physician had told us with certainty that Bella would go into either cardiac or respiratory arrest and would be cyanotic and restless, gasping for breath, and eventually, her breathing and her heart would stop. Rick and I had made sure the children were outside so they would not hear any of this conversation. They were running around in the yard playing freeze tag and laughing. Rick and I were wondering how we were going to hold it together when they came inside.

Holding on to our tiny love, we sat there in our family room, bleary-eyed, exhausted, and barely able to listen to something so horrible. As I listened to the chilling scene the hospice doctor described, I desperately cried out to our Lord for help and comfort, repeating
help me, Jesus
over and over in my mind. That was the prayer, so simple, but so very important.

C. S. Lewis said, “What may seem our worst prayers may
really be, in God’s eyes, our best. Those, I mean, which are least supported by devotional feeling. For these may come from a deeper level than feeling. God sometimes seems to speak to us most intimately when he catches us, as it were, off our guard.”

As a NICU nurse, I understood the therapeutic effect of morphine in a cardiac or respiratory arrest situation, but I also knew too high a dose would be lethal. Dr. Baugh took the bottle of morphine and turned pale. He could barely get the words out of his mouth as he shook his head, “Well, that
is
a high dose.” He explained that it would have been a lethal dose. That moment confirmed we were navigating our way through a battlefield where there were enemies and allies. I canceled hospice immediately and felt a huge sense of relief and joy.

After Bella’s birth, my dear mom, dad, and sister, Maureen, came to visit us twice. Rick’s parents came to visit us too. Our parents were in their eighties at the time. My dad was in the early phase of Alzheimer’s disease and Rick’s father was in a wheelchair, so traveling was difficult, but the fact they made the long trips meant the world to my family. Our parents’ and sister’s love and support were like an oasis in the desert. They acknowledged Bella as a person—as a member of our family. They held her ever so gently, talked to her in sweet whispers, and loved her with all their hearts. Many pictures captured those moments. Their hugs comforted all the children.

My dad was a distinguished physician and geneticist, but when we needed his advice and guidance with Trisomy 18, he had lost much of his memory to Alzheimer’s disease. Yet, one night, as we sat on the back porch, my dad recalled a little girl
at our church who had Trisomy 18 and had lived to be six years old. My mom nodded in agreement. She remembered her too. This small memory lifted our spirits and gave us one more simple reason to hope. My brother, Jim, and his wife, Anna, told us about a girl they knew in Spain who has Trisomy 18. She is older, and they said she is happy and doing really well. This meant the world to Rick and me.