Bella's Gift (16 page)

The children had worked hard to create a Christmas wonderland. The tree was up, the stockings hung, and every corner of the house held our family’s Christmas treasures. The
boys stoked a roaring, cozy fire in the family room, and the girls simmered hot chocolate on the stove next to, my favorite, chocolate chip cookies. We sat together, reading Christmas stories and talking. The kids knew my heart needed to be home with them. I treasure my children and love them with all my heart. Their sweet gestures filled me with warmth and comfort. An oasis.

During those special days at home, Elizabeth told me a story about a game she and Bridget had played with the other kids. Bridget got the idea from a family friend who had suffered loss. This friend had used the game to encourage her own kids to feel comfortable talking about their feelings during a difficult time. So, Bridget and Elizabeth played it with our children.

They wrote out a list of twelve questions. Some were silly and some were more serious, but the point was to get the kids talking. They rolled two dice, and whatever number they got, they’d have to answer the corresponding question. As they went around the circle, they talked about their favorite family memories, what they wanted for Christmas, and a whole host of other topics.

Then it was our seven-year-old Patrick’s turn. When he rolled the dice, he got this question: “How did you feel the night Bella went to the hospital?” The children were quiet as they waited for his response. “It was so loud and I was so scared,” he answered. “Then I thought about a lot of things. I know that Bella’s an angel and that angels have to go to heaven, but I just don’t want her to go yet.” His lips trembled and he looked at the floor, reaching for Elizabeth’s hand. They all agreed they couldn’t have said it better themselves.

A week before Christmas, Rick and I brought Sarah, Peter, and Patrick up to Philadelphia to visit Bella, and also to have fun. Between visits with their sister, I took them to Independence National Historic Park, the Children’s Museum, and, of course, out for the famous Philly cheesesteak sandwiches. We thoroughly enjoyed this time together. They learned a great deal of history and we had plenty of fun.

On one of our visits to the hospital, as they colored pictures for Bella by her hospital bed, I walked over to the window. It was snowing. Watching the large, fuzzy flakes drifting slowly through the cold night air, I conjured memories of all my little ones bundled in their snowsuits and hats, running through the snow, catching snowflakes on their tongues. My children loved the snow, and some of our best memories are sledding and building igloos together.

I was lost in memories, and drifting away from the hospital for a little while felt good. The kids joined me at the window, mesmerized by the beautiful sight as Bella drifted off to sleep. Looking up at me, they asked, “Can we go make snow angels?” I smiled and grabbed their coats. We tiptoed around the room so as not to wake Bella, and kissed Rick. They crept out of the room, but I paused before leaving to make sure Bella had not awakened. Sarah had put a pink bow in Bella’s dark hair. Her cheeks were rosy, her lips rounded into an
o
as she slept. In her hospital bed, she looked like our own little snow angel.

Crossing the street, we walked to a nearby park. The kids ran around, laughing and stomping on the freshly fallen snow. Winter was here and Christmas was around the corner.

Bella was at CHOP for several weeks. Her recovery had many ups and downs, but CHOP’s medical pioneers and their cutting-edge treatments ultimately saved Bella’s life. The pneumonia cleared up, and Bella got off the ventilator. Words cannot express our gratitude for the exceptional care she received. Dr. Blinman and Robin Cook visited us nearly every day, offering compassion, friendship, and guidance. Their visits and the joy they always brought into Bella’s hospital room helped us more than words can say. We love them both.

The physicians, nurses, and therapists took excellent care of Bella. They were friendly and addressed Bella by name, included Rick and me with rounds every morning, allowed our children to visit and stay overnight, and even had a stocked kitchen for the parents to use. These sound like little amenities, but they were huge. We were shut out from rounds at the other hospital, but the physicians at CHOP wanted our input every day. At CHOP, my Bella was a person, a beautiful baby girl who was loved and treated with the ultimate dignity and respect. CHOP’s motto is “Where Hope Lives,” and the physicians often said, “Just give her a chance.”

After nearly six weeks, Bella was cleared to go home a few days before Christmas. Rick and I took down the many cards, signs, and drawings we had taped to her hospital walls. Crayon drawings of princesses, “get well” wishes, and marker-swirled pages drawn by the children were placed carefully into a plastic bag. We packed Bella’s blankets and toys. Many people had visited, sent flowers and cards, and offered support. Back home again, we received a constant supply of homemade meals from our circle of friends. A strong prayer
chain strengthened and sustained us. Our families and friends were the hands of Christ during her hospitalization.

Bella came home to the open arms of her siblings and a cozy home that was decorated for her first Christmas. Christmas is a season of light and birth, a joyful time of remembrance, gratitude, and celebration. That Christmas, we thanked God for the gift of His newborn Son, but also for the gift of our own little babe. He had given her back to us. We went to separate Masses on Christmas Eve so that both Rick and I could also stay home with Bella. She was still fragile and needed rest and oxygen. But that evening, with a little help from us, Bella was able to place baby Jesus in the manger. Singing “Silent Night,” we watched this special moment and offered prayers of thanksgiving.

On Christmas morning, the kids raced back to our room. “Wake up! It’s Christmas!” They were beckoning to Bella. They crowded around her crib, watching her stretch and coo as she awakened. Sarah and Elizabeth took charge of carefully dressing their little baby doll in her red satin Christmas dress, white tights, Mary Janes, and a red bow. After opening presents and enjoying breakfast, Rick and I placed a special phone call to the family of Bella’s spiritual brother, Brendan.

In 2000, Rick and I had been blessed to meet Pope John Paul II in Rome. It was our fourth visit with our spiritual father who we loved with all our hearts. At the time, a three-year-old boy in our community, Brendan Kelly, was battling a virulent form of leukemia, so we brought his picture with us to give to the pope and asked him to pray for Brendan. The next year, Brendan was in remission and was granted a wish by the Make-A-Wish
Foundation. His wish was to meet the man who had prayed for him in Rome.

Brendan’s struggles with leukemia and the debilitating treatments had been an inspiration to all who knew him. But it wasn’t until Bella was born that we fully understood how very special he was. When Brendan found out about Bella’s condition, he committed to pray for her daily. They became spiritual friends because Bella was born with Trisomy 18 and Brendan with Trisomy 21, or Down syndrome.

During the weeks Bella was in the hospital, Brendan was receiving chemotherapy for a relapse of leukemia. Getting a ten-year-old to take medicine that makes him violently ill is not easy, but during that time Brendan would courageously swallow the pills or take the injection and offer up his suffering as a plea to Jesus to heal Bella. Frank, his father, told me that when the pain was the worst, Brendan would repeatedly groan, “I love you, Bella.” Amazing.

On that Christmas morning, we called Brendan to thank him and to wish the Kellys a Merry Christmas. We learned that Brendan had a special Christmas wish. He wanted to meet “his Bella.” Frank and Maura, who were a great source of comfort and strength to us, brought their Brendan over, and the two spiritual friends met for the first time. Sitting on the couch next to the Christmas tree, Brendan received Bella into his arms. Both of their faces were swollen from steroids, pale from too many days inside hospital walls, but beautifully peaceful. Brendan kissed Bella’s forehead again and again, saying, “I love you, my baby Bella.”

Bella looked at him intently and sweetly, as if to say, “Oh, there you are.”

Hugging her closely, he placed his head against hers and closed his eyes tightly as happy tears escaped down his face. It was one of the sweetest things we’ve ever seen.

Brendan and Bella reminded us that love not only implies sacrifice, but that true and unselfish love is in itself an act of sacrifice. They bore their painful treatments and sick days with joy, lifting us up through their hope and happiness. Brendan often spoke of sacrifice, of offering up his own sufferings so that Bella would be well. I like to think that, even in her peaceful silence, Bella did the same for Brendan.

9
LOVE OBLIGATES KNOWLEDGE OF THE BELOVED

•
Karen Santorum
•

[T]hou didst form my inward parts,
thou didst knit me together in my mother’s womb.

I praise thee, for thou art fearful and wonderful.
Wonderful are thy works!

Thou knowest me right well.

—PSALM 139:13–14

I
t was a rainy, cold winter morning. The snow that had fallen a few days before, outlining the shrubs and trees in white and making the world look magical, was melting. The world around us went from looking peaceful and pure to dreary and dark. It was the kind of day when you want to pull the blankets up and stay in bed when the alarm goes off. The aroma of freshly brewed coffee filled the air, and a cup of hot coffee on this cold morning was just what I needed.

I dragged myself out of bed after being up with Bella several times through the night and got Sarah, Peter, and Patrick off to school. We talked at breakfast about their school day and after-school sports schedules and were all laughing because Patrick told us a funny joke. When we realized it was 7:10 and they should have left at 7:00, they ran out the door with their backpacks and lunch boxes, but I managed to fit in hugs and “I love you” three times.

Every morning when the children leave for school, I light a candle and say my morning prayers. I thank God for watching over us during the night, offer up special intentions, thank Him for the gift of this new day, and ask Him to bless and protect my family. As I was reading a meditation, my eyes got heavy, and before I knew it I was asleep at the table. I was awakened to Bella’s singing on the baby monitor. It’s a two-way video monitor, so I pushed the button and said, “Good morning, beautiful!” With that, Bella was beaming with smiles as always.

I stood up from the table, half awake, closed my robe to keep the chill out, and went up to hold Bella. She loves listening to music in the morning, especially Enya, Disney, and Celtic Women. We snuggled in bed as we talked about
the day and sang a few songs. It reminded me of all the times Rick and I would wake up in the morning to our six other children who, when they were small, would wander back into our room and nestle into our arms. Eventually, I had to break away from my morning Bella bliss to begin the work of the day. When I’m with Bella, time seems to stand still and my worries melt away.