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 tocare 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 withus 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
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 tocare 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 withus 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
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