Bella's Gift (11 page)

Since Bella’s birth, we had been fervently praying for a miracle, and we believe she received one at her one-month visit with the cardiologist. Bella had two large VSDs (ventricular septal defects), holes in her heart, that were diagnosed in the NICU. Waiting for the results of this one-month echocardiogram, our hearts were heavy, fearful we were going to be told Bella would need surgery or that she would develop pulmonary hypertension or cyanosis. Instead, the cardiologist, Dr. Mary Donofrio, entered the exam room with a huge smile on her face and told Rick and me the holes in Bella’s heart had closed! Praise God! Before we left, she said with confidence, “I’ll see you in a year for Bella’s follow-up.” For the first time since her birth, we burst into tears of joy. No one had ever given Bella a future like that.

The transition from the NICU to trying to establish a new normal way of life was a strange time. Activities that had never been a big deal suddenly became a huge challenge, like simply going to the grocery store and running errands. For the first couple of months after Bella came home from the NICU, I did not go anywhere except to church. I was completely consumed with taking care of Bella, my six other children, and my dear
husband. There were days when just taking a shower or brushing my hair seemed almost impossible.

Bella needed to be fed every two hours, and it seemed as though I would finish one round of care only to go right into the next. Bella had to be fed slowly with a syringe through her NG tube, and so I timed each milliliter of milk with a prayer. In between Bella’s feedings we gave her baby massages, bathed and dressed her, washed her medical supplies, and I pumped breast milk. Bella was always in someone’s arms, and we knew she felt the love. Fortunately, by the time Bella came home from the hospital, our kids had finished school and were able to help out with chores and driving.

I was completely exhausted, and it was a huge challenge keeping the kids’ lives as normal as possible with their usual routines: music lessons, sports, and friends. As time passed, we realized we were living in a completely different world, and things that used to matter no longer did. C. S. Lewis, in
A Grief Observed
, said, “Perhaps the bereaved ought to be isolated in special settlements like lepers.” So funny and so true!

There was no real normal anymore, and I was trying to figure out what our new life looked like and how we would live. It was as if my happy, organized life had been swept up in a tornado and then thrown all over the ground, and we had to pick up the pieces and make sense of everything. Little by little, we figured life out one day at a time. My emotions were like a pendulum, swinging from joy and gratitude that Bella was doing well, to grief and despair over the concern for her health and medical issues.

There was also a sadness in my heart that we could not go to Mass as a family. We loved being at Mass together, praying
as a family and then talking with our friends after Mass. When I went to church, I sat in the back, clinging to my phone, afraid of getting a call about Bella being in a crisis, and I cried the entire time. After Mass, I exited quickly to get back to Bella.

One day after Mass, there was an ambulance rushing by my car and heading in the same direction as my home. This triggered a flood of tears and emotion; I was convinced it was going to my home. When I returned, my dear Rick, as always, held me and calmed my anxious heart.

When we brought Bella home from the NICU, a dear friend of ours, who has a special-needs child, told us that this time would be hard on our marriage if we did not hold tight
together
. She said to never forget that “you are husband and wife—you are lovers.” Rick and I promised each other the gift of time to nurture our marriage every day. Whether it was a walk through the neighborhood, a drink on the porch, or reading together around the fire, we actively planned time to talk with, listen to, and love each other.

And so, when our special girl entered into our lives, we continued to do what we had always done; no matter what the day might bring, Rick and I make time for each other and take care of each other. “I will seek him whom my soul loves” (Song 3:2). This promise has made all the difference in our marriage. Bella has made our marriage even stronger. All the ups and downs of life have made us closer and have deepened our unity and love for each other.

When Bella was two and a half months old, her pediatrician told us she would need a feeding button. Bella was taking
some breast milk by mouth, but not enough to sustain her. Most of her nutrition came through the nasogastric tube, but as Bella got older, she began to pull on it. We were concerned about her aspirating if she suddenly pulled out the tube during a feeding. We met with two local physicians who performed this type of surgery, and they both said our baby would never survive the surgery. At both appointments, I reminded the doctor that my baby’s name is Bella, but that did not seem to matter, and they did not refer to her by name. Their reactions told me that because of Bella’s diagnosis, they weren’t even considering the surgery.

To them Bella was a liability, at best, and, at worst, she simply wasn’t worth the effort. These appointments were definitely momma bear moments. I knew that I would never think, even for a moment, of putting my dear baby into their care. If the physician believed Bella would not survive the surgery, then the outcome could likely be just that. I wanted a physician who was positive and believed in Bella and hoped for her.

When Jesus was here on earth, He healed the sick. He did not disregard them or throw them away or say, “You will have a poor quality of life, so I will not care for you.” Rather, Jesus said, “Go and tell John what you hear and see: the blind receive their sight and the lame walk, lepers are cleansed and the deaf hear, and the dead are raised up, and the poor have good news preached to them” (Matt. 11:4–5). The apostle Mark wrote of Him, “He has done all things well; he even makes the deaf hear and the dumb speak” (Mark 7:37). It was the weak, the fragile members of society, whom Jesus made the focus of His care and attention. “So the last will be first, and the first last” (Matt. 20:16).

The Gospel of John describes Jesus healing a blind man: “As he passed by, he saw a man blind from his birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘It was not that this man sinned or his parents, but that the works of God might be made manifest in him’ ” (John 9:1–3). During that time in Israel, people assumed that such afflictions were brought on by sin or uncleanness. Jesus made it clear that no one was responsible for the man’s blindness; rather, he was blind so that God’s providence could be shown through him. Like the blind man, Bella is here so that “the works of God can be made manifest in [her].” God has a plan for Bella’s life. There is a reason why Bella, and all of us, are made in such unique ways. God has a purpose for all of us.

The verdict from the icy people who called themselves physicians left me with a heavy heart, and I stayed up all night crying as feelings of devastation overwhelmed me. Even the smallest challenges of Bella’s care sent me into dead-end alleyways. I had to and I wanted to scale walls to care for her. And I was exhausted. My heart was weary, pushed to the breaking point.

In those moments when the soul is stripped of hope, the frantic desperation one feels is akin to Job-like madness. Venturing into uncharted, stormy seas, my vessel was my faith, and it separated me from the sea of madness and sorrow. In different moments, I resented the vessel for not being strong enough to calm the storms.

The day after our appointment with the last doctor we had visited, Rick helped me pick up the pieces. Together we were resolved and strong. We would find a team of physicians to
care for Bella. After all, we would never put our child into the hands of physicians who didn’t see her as a valuable, beautiful life. Rick and I called Dr. Scott Adzick, a friend of ours at the Children’s Hospital of Philadelphia (CHOP) and one of the most impressive surgeons in the world. He is kind and compassionate. He recommended Dr. Thane Blinman, a brilliant surgeon who has spent years perfecting many surgeries laproscopically.

Dr. Blinman could not have been nicer, and he referred to Bella by name. This sounds like such a small detail, but in the world of people with disabilities, a name gives hope. He acknowledged her life, her person, and gave her value by saying her name.

Dr. Blinman wanted to know about Bella and her needs, something the other doctors had never even asked. At the end of a long and compassionate conversation, Dr. Blinman said he had several Trisomy 18 patients and believed Bella would do really well. And she did. Bella had the surgery at CHOP when she was three months old, and there was no problem getting her on or off the ventilator, no infection, and no problem with her feedings. Dr. Blinman did the surgery laparoscopically, and in one procedure Bella had the feeding button in place. She was home in two days. Bella is almost seven years old now, and she’s never had an issue with her feeding button.

Until Bella was five, we went up to CHOP every three months and then every six months since. Bella sees all her physicians and her nutritionist, Robin Cook, whose cheerful demeanor always made our visits with her so pleasant. She would quickly calculate Bella’s nutritional needs, giving us guidance with every detail of Bella’s feedings, such as vitamins, minerals, fiber, calories, and fluids. Dr. Blinman and Robin work together with
us on Bella’s nutritional needs. Dr. Blinman’s disarming sense of humor and Robin’s vivacity still light up the hospital room. Both Robin and Dr. Blinman have played pivotal roles in our journey with Bella, and we are so grateful to know them.

At CHOP, the doctors approached Bella optimistically, with compassion and respect. While other doctors said Bella would never talk or walk, physicians at CHOP said, “Bella communicates well with her eyes and facial expressions. She has good muscle tone and, with the proper therapy, may be able to use a walker.” While local doctors told us Bella’s face was abnormally small and would give her breathing problems, doctors at CHOP said Bella was beautiful and her sweet face was petite. They told us they could help her breathe better.

While other doctors commented that her mouth was too small, a doctor in CHOP’s PICU told us that she loved Bella’s little mouth and would find an oxygen mask that fit just perfectly. Not only did they see her beauty, but they also recognized her potential and wanted to help her reach it. While other doctors were saying there was no hope, CHOP physicians were saying to just give her a chance.

Almost seven years have passed since Bella’s birth. Nearly seven years since we received the crushing diagnosis of Trisomy 18. Virtually seven years since those words “lethal diagnosis” and “incompatible with life” were coldly spoken by the doctor and burned into our hearts. Was it a slip of the tongue? Maybe the doctor just didn’t think before he spoke. Maybe he just didn’t realize the huge impact his words would have. After almost seven years, they still disturb me and echo in my mind as if they had just been spoken.

As the mother of seven children, I know how powerful
words can be, and I tend to obsess over which words I use in various situations with my children. “Pleasant words are like a honeycomb, sweetness to the soul and health to the body” (Prov. 16:24). Words can affirm, encourage, and inspire, or they can frustrate, degrade, and build anger. Through the years I have known what it means to my children when I encourage and validate them with positive words. I have read parenting books about how our words will have lasting effects on our children, and I regret the times I have carelessly spoken without thinking. I know all of us have said things we wish we hadn’t.

These doctors, however, seemed to have no remorse over the toxic words they used. Maybe they had taken the line right out of a medical book or their medical school professors had used these words.

When Bella was three and a half, she was hospitalized for pneumonia. A few days into her stay, she was sitting up in her bed, playing with her toys. A young physician who had been assisting in her care stood at the foot of her bed. He was watching Bella, and she looked up at him. She kept smiling and giggling. I looked over at this tall, athletic physician and was surprised to see tears running down his face. When I asked if he was all right, he said, “I didn’t know kids like Bella existed. All we were told in medical school was kids with Trisomy 18 never lived. I feel so lied to.”