Vicki Bianchi's third child, a son, was born with microcephaly.
We have all encountered people in our lives that inspire us to be better. These people, through everyday interactions, seem to lift up those around them and give us hope.
The best way to describe these extraordinary individuals would be to call them what they are, lifters. Lifters raise our souls to heights never expected and inspire us to lift others. Vicki Bianchi is one such lifter.
Nineteen years ago Vicki gave birth to her third child, a son she named Harry. He weighed in at a healthy eight pounds — a large baby compared to that of his two sisters’ birth weights, but the size of his head had everyone concerned. Harry was born with microcephaly, a rare neurological condition where a baby’s head is smaller than expected when compared to babies of the same sex and age. His brain did not develop properly while in the womb. Statistically, according to the U.S. Center for Disease Control and Prevention about one in every 33 babies are born with a birth defect.
Harry’s first few weeks and months were like most newborns; he slept, drank somewhat sloppily from a bottle, cried when hungry, and moved his arms and legs, but with noticeable limit ability. However, Harry started to miss milestones that most babies make. He never sat up, he stopped grabbing for things, he couldn’t eat food that was not pureed, he never took a first step, and verbalizing his thoughts was not possible. Children with microcephaly have different degrees of severity and their life expectancy varies accordingly.
Harry’s family relied on the Happy Program, now Nevada Early Intervention, for providing resources from his birth until his third birthday. Vicki lived in a rural, Northern Nevada town and having specialists come directly to her house was extremely helpful, but also a bit exhausting. A speech therapist, nutritionist, occupational therapist, physical therapist and case worker would arrive at her home and leave her with exercises and information to help her promote Harry’s physical and mental growth.
On Harry’s third birthday, the State of Nevada transitioned him from the Happy Program to the local school district where Harry had his first Individualized Education Program planned by a team of specialists, teachers, and his mother.
“He was legally blind, but the physical movements of children kept his brain stimulated because he could see their shadows,” Vicki said. “His hearing was impeccable and the laughter and music they listened to would make him light up. Harry became much more animated when at school.”
Choking on some scrambled eggs and turning blue was the first indication that Harry had begun to face the most severe symptom of microcephaly. He was five and had a seizure; the first of many. Harry’s neurologist concluded that Harry was having seizures of varying degrees which resulted in eye rolling and eye twitching, to the most severe where Vicki would have to administer a life-saving drug.
“Frightening,” Vicki said. “Because I never knew if I would lose him during one of those attacks.”
Vicki pureed all of Harry’s food, sat for over an hour feeding him while she held him in her arms, until at the age of 13, when weighing only 40 pounds the doctors recommended that he have a feeding tube. Harry didn’t have enough muscle to cushion his own bones and gaining extra weight from additional nutrition would help.
“I would wake up an average of ten times a night to roll him from one side to the other to decrease the pain in his hips,” Vicki said.
Harry had two different hip surgeries at the Shriner’s Hospital in Sacramento, which were completely funded by the Shriner’s organization.
“I was grateful that my son had microcephaly and not something more severe because there were children suffering from so much worse; children with burns, cancer, and others who had more profound disabilities than my son,” Vicki said.
Harry’s spine began curving significantly to the point where Vicki couldn’t place her own hand between his hip and rib cage. He couldn’t sit up in his stroller and his wheelchair was no longer accessible because it caused him intense pain. Vicki made another trip to the Shriner’s Hospital in Sacramento where they performed two different surgeries to place a metal rod in his back. Vicki said it was a long and draining experience, but she was grateful for their help because Harry could use his wheelchair again and the intensity of his pain decreased.
Vicki decided a year before Harry’s 18th birthday that she would place him in her town’s nursing home after he turned 18 because she realized that his care was becoming emotionally and physically draining for her. Vicki worried about what everyone would think about her decision.
“I thought people would judge me. They would think I’m a bad mother. Who puts their child into a nursing home?” Vicki compared him to other 18-year-olds who graduate and go off to college. “They have the opportunity and Harry should have the option of leaving home too. The nursing home was two blocks from my home. I was with him all day at school and then in the evening he would have the medical facilities that could provide support that I struggled to provide at home.”
Vicki explained about this new journey for Harry.
“I kept planning and preparing for him to go to the nursing home and I realized it was all about freedom; a freedom, not only for me, but him too.”
Harry transitioned well and continued to go to school. Students with severe disabilities can attend public school until their 22nd birthday.
“I had planned this route for Harry, but he began missing school because his seizures began to intensify. I was called when he had an extremely bad seizure and the hospital said that he almost didn’t come out of it. I had always known since birth that his chances of dying young were great. It is something you always carry in the back of your mind. Eventually, the day came. We did receive the call, the one I always feared. I was sad, but I was also relieved. I knew the kind of pain he lived with every day.”
Harry’s story might have ended on Nov. 8, 2014, the day his body and mind succumbed to a seizure for the final time, but for Vicki, her two daughters, immediate family, and everyone who had a chance to be a part of Harry’s life the story is still being written. Vicki said Harry’s legacy continues on.
“I probably would be hanging out at a bar and working at a convenience store if Harry had not been a part of my life. I worked as an aide in his classroom and discovered that I could go back to school to be a teacher. At the age of 47 I received my bachelor’s degree and now I’m the teacher in the class Harry attended.”
When asked if students with disabilities should be mainstreamed into the regular education environment Vicki stated, “It’s good for our disabled students to be with their peers to interact and learn, but our regular education students are the recipients of life skills that enhance their lives as well. They become friends and learn acceptance, tolerance, and compassion. They also realize that people are different and they no longer need to feel scared around disabled people.”
When asked what advice Vicki would give to parents with a child who has a disability she said, “Begin in the hospital or as soon as you are aware. The hospital will help you connect with what’s available locally and within your state in regards to education, nutrition, and the wide range of therapies that are provided. Put one foot in front of the other, one day at a time. It does go by quickly.”
Vicki wakes up some nights and think she hears Harry crying out for her, but then realizes she must have been dreaming. Sometimes she walks by his open bedroom door and thinks she catches a glimpse of him.
“It’s hard with him gone, my life is different. I’m not taking care of a young man who weighs 95 pounds, but has the needs of a six month old,” Vicki said. “I’m learning to figure out who I am and what interests I have. I never had time to find that out before. I could have been bitter and continually asked why I was the one that had to deal with Harry and his disabilities, but I never made “poor me” the focus of my life. I had three children to support and be there for. My life is better because of Harry. I truly believe that, and there’s always a light at the end of the tunnel.”
Vicki was and still is a lifter. She chose to love her son, even with the severity of his disabilities and the exhaustion of her own self. She continues to lift other children with disabilities in her role as a special education teacher. Her example lifts our souls. Vicki is a lifter. Vicki is a heavy lifter.