Bella's Gift (9 page)

Above the doorway to our family room, our children had hung a huge, colorful birthday sign, lovingly decorated with crayons. It read, “Happy 1-Week Birthday Bella!” The kitchen table was covered with cards, frosted pink cupcakes, balloons, and, of course, pink roses. Bella quickly roused from her nap as she took in all the excitement. The children took turns holding her. They were all so gentle, tender, and loving as she was placed in their arms. Swaddled and drowsy, her yawns stirred choruses of “aah” from all, even the older boys.

All the children had visited with Bella in the NICU and had held her many times, but now they had the luxury of holding her for longer than a few minutes and without all the tubes and wires. Elizabeth, who had just celebrated her seventeenth birthday, was old enough to understand the implications of Bella’s diagnosis. She appeared strained, heavyhearted, and lost in thought as she stared into the eyes of her goddaughter. Her eyes welled with tears as she told me that she was so grateful for her little angel, no matter how long she would be with us. Our fifteen-year-old, John, reacted differently. He was nervous about holding her and offered to go last. He later told me he was afraid of breaking her because she was so small.

Daniel, who was twelve, couldn’t stop looking at Bella’s toes and fingers; they were delicate and small as a doll’s. Considering his big heart and quiet demeanor, it was little surprise that Peter tried to hold Bella the tightest. We had to remind this sweet ten-year-old that she was fragile, but he just loved her so! Our youngest boy was Patrick, age six, and he glowed with the pride of a newly crowned king. He had joined
the ranks of the “big brothers” and was entirely pleased with himself. He wanted to hold her for the longest, and he talked to her about all the scary things he would protect her from: dragons, bears, and piranhas would never touch her.

Later on, our dear friend Susie came over to take a family picture of us. She was a steadfast and devoted friend who was such a great blessing to our family during this painful time. Gathering the kids, we went outside and snapped away. I remember the beauty of that spring day: the garden in bloom, the earth alive again, and the smell of honeysuckle. The heat felt welcoming as its tender touch soothed me. I had been cold for so long.

Taking a family picture is not an easy feat when you have seven kids to organize. Nonetheless, the family picture we took that day would become an important memory for us. Every physician we spoke to had said that Bella would surely die after a few days. If we were exceptionally lucky, they had said, she would live for a month. With those words ringing in my ears, I wanted a moment to capture our family while Bella was with us.

Click. Flash. Stop.
The boys were in their worn T-shirts and shorts, so we had them change into something a little better and brush their hair, something I need to remind my boys to do. We went outside, where the sun was shining, and fumbled around trying to best arrange the kids. I sat in the middle of the outdoor couch, holding Bella. Sarah, Peter, and Patrick crowded next to me, eager to be as close as possible to Bella. Daniel, John, Rick, and Elizabeth stood in the back, all leaning in toward Bella.

Everyone was happy that we were having this family
picture taken but simultaneously fearful that it would someday become a sad reminder of a fleeting period of time, a time when Bella was briefly with us. The treasured picture captured our exhaustion but also our joy, hope, and gratitude.

Even though Bella was our eighth baby, our anxiety made it seem as if she were our first. In a very real sense, we were new parents. We learned how to perform newborn care differently, more carefully, more thoughtfully. Because Bella could not nurse, I rented a pump so she could benefit from the nutritional benefits of my breast milk. We tried lots of different bottles and nipples made specifically for special-needs infants, but she got dusky every time she tried to take a bottle, because she could not suck and swallow properly. We even tried giving her oxygen when she fed, which helped, but she still wasn’t able to eat enough through a bottle to sustain her. So she received her mother’s milk through a nasogastric tube that went through her nose and down into her stomach. Breastfeeding was always so important to me, and it made me happy to know that Bella was healthier because of it.

Details were everything, and prayers timed all Bella’s feedings. We were getting to know our Bella, her issues, and how best to take care of her. We were with Bella around the clock and watched her constantly. There were always treatments to be given and medical supplies that needed to be washed. As much as my experience as a NICU nurse helped, this was a skill set I had never dreamed I would need to use for my own baby.

Though her care was extensive, Bella was not “sickly.” In fact, she acted like a normal, sleepy, newborn baby. She was a preemie, but she was growing. Other than her little fingers, only a geneticist would notice the other outward
manifestations of her rare condition. We told the children that Bella was not sick; she was just made in a different but very special way. We took care of Bella as we did our other infants; we just fed her differently.

At her one-month birthday, Bella weighed five pounds, five ounces. We were proud of that simple, yet important, milestone. With her putting on weight and allowing us to measure her life in months, not weeks, we had many reasons to be hopeful. The night before this birthday, we took her to our church for the first time. In the presence of our Lord, we gave thanks for her life and resolved to continue treasuring each day with our angel.

My dear family was there for us every single day, delivering gifts, talking, praying, and helping us in every possible way. My friends Katy, Nadine, Jennifer, Leanne, Chris, Mary, Muriel, Kathy, Melanie, Laura, Katie, and, of course, Susie were all there for us. They made meals, brought Bella the sweetest baby gifts, and sat and talked. The love and support we received from our family, friends, and church community helped to strengthen and fortify us during this challenging time.

Rick wrote an e-mail on the night of Bella’s one-month birthday to thank our family and friends for praying for her during her first month of life and for being there to help us. We thanked people for celebrating her life with us and for contributing to our miracle by sustaining us through prayer and support. He shared the story of how I had contacted Archbishop Chaput after hearing his homily where he mentioned our family and Bella’s birth. He told me that after Mass, a woman came up to him and said she had an eleven-year-old daughter with full Trisomy 18. Her home parish was called Our Lady of Fátima—Bella’s confirmation name. Rick
explained that it was stories like this that had helped us keep the faith and fight the battle. Our God is a God of miracles.

We held a huge celebration for Bella’s one-month birthday. Actually, it was a huge celebration in our hearts! Concerned about germs, we had a simple party with family and friends. I always say I’m so blessed to be walking through life with my family. It’s a great comfort going through everything together with family, and many of our friends have shared the journey of life with us for a very long time. We have had our babies together; prayed together; celebrated baptisms, first communions, and confirmations; done sports and piano recitals together; gone on retreats together; and shared all the ups and downs of life.

God blessed us with such dear family and friends on this journey of life. Bella’s one-month birthday was a joyful celebration. We had food and wine and toasted to Bella’s life. We had a strawberries-and-cream cake with pink frosted roses for Bella, and almost seven years later we still have the same cake for Bella at every celebration for her. She has her own signature cake!

We built a life that summer based on new hopes and small milestones. This was the summer of simple pleasures like neighborhood walks and baseball games. Peter and Patrick were playing Little League baseball, and Rick was their coach. Their team played well that year, and I had missed watching them play, so we packed up Bella and brought her to a few games.

Bella’s diaper bag was unlike any other diaper bag. It was like a physician’s bag filled with gauze, syringes, tubing, and a tiny portable pulse oximetry finger probe. Standing away from the crowded bleachers, under the shade, I swayed her back
and forth. Smelling clipped grass and cooking hamburgers, I smiled as I gratefully shared these peaceful moments with my little one. She was dressed in a pink dress and a sunhat as I cradled my little love tenderly. This was one of the first outfits I had bought her that wasn’t a preemie size. Her wearing it was a little milestone. It sounds silly, but I was proud of her. Maybe she knew. I smiled as she cooed sweetly to herself. She loved to coo when she was drowsy, singing herself to sleep.

Peter was a catcher, and as soon as he saw me standing there with Bella, he took off his mask and grinned. Patrick spotted us from the outfield and almost ran over during the game! Rick waved him back, reminding him to keep his eye on the ball. I laughed at their sweet reactions. Peter and Patrick lost the first game Bella attended. We think they might have been a little distracted, but we had our own victories to celebrate.

Since arriving home, Bella always loved being outside. She responded to the warmth of the sun and the soft breezes. We went for walks every day, and Bella loved the birds’ songs. When she heard their sweet melodies, her little legs kicked and her eyes lit up. Occasionally, she liked to sing with them, cooing and squealing her own little harmony. The walks were good for her and therapeutic for me. Frustrations and concerns were left on the side of the road.

Since being in the NICU, Psalm 23 had become my constant prayer. As I walked, I would thank God for bringing me out of the dark valley and into the light. We held Bella, sang to her, rocked her, and gave her massages. She especially loved foot massages. We would nestle her in a pillow and rub each of her feet with lavender oil while listening to the sounds
of whales on her Sleep Sheep. Her feet were so tiny we only needed to massage them with one finger. Inevitably, she would relax and quickly drift off to sleep.

As she grew out of the sleepy newborn-baby phase, Bella began to interact more with us. She loved to laugh, particularly if the boys tickled her tummy or chin. She’d pull her arms to her sides, tuck in her chin, and giggle until the boys relented. Afterward, she’d inhale and exhale very deeply, like any dramatic little sister.

During these first crucial months, our family, friends, and church community showered us with love, prayers, and support, active witnesses to the embracing body of Christ. They brought meals to us every day for a few months. They prayed for us, sent gifts and flowers, and helped with the children. There’s something very soothing about a delicious home-cooked meal with warm, homemade bread. It was comforting to gather as a family around the table for a meal that neither Rick nor I in our exhaustion would have been able to prepare.

All these little changes helped me quickly learn that we were in a new phase of life. From the moment we brought Bella home from the NICU, one of my greatest challenges as a mom had been to make sure all my children had some “mom” time every single day. Taking care of a special-needs baby can be all-consuming, but I was the mother of seven children and needed to take care of every one of them. Night after night I would lie awake in bed, trying to process everything, and wonder how on earth I was going to do it all: sports, music lessons, playdates, plays, parent–teacher conferences for the kids
who were in school, and homeschool lessons for the children at home. The list went on and on in my mind.

A dear friend of mine, Muriel, who is the mother of three special-needs children, offered some lifesaving advice. She told me to live with more simplicity, make my circle smaller, and know that “doing it all” was not possible, so I had to prioritize. From that moment on, I decided that my husband and children would literally be my entire life. A beautiful simplicity was born, and sweetness suffused everything. I had always struggled with living in the moment, and now it was just happening.

We obviously had to plan the family schedule, but now we focused on a constant awareness of the moment. Rick and I were in this together, as husband and wife, on our mission to take care of our family and nurture our marriage. We mapped out the children’s activities. One of us would be with Bella, while the other was at a baseball game or school event. My friends were great at helping out with playdates and driving when Rick was busy at work.

We were on an emotional roller coaster and had to tend to our children’s hearts. All my children have different ways of opening up and talking, all with their own emotional processes. I became the master of getting them to share their thoughts, which is not an easy thing to do at times! Elizabeth and Sarah liked to talk over a cup of tea; John and Daniel liked to share as we took a hike; Peter and Patrick loved snuggling on the couch and talking. One moment, one day at a time, was my motto.

As we entered into the fall and the meals from our friends stopped, cooking, something I love doing, became a huge challenge. There were many days when my kids would get home
from school and ask, “Mom, what’s for dinner?” and I didn’t have an answer. I used to love making meals from scratch and baking bread every day, but the days were so busy that planning and meal making became next to impossible.