As humans, we take the awareness of others for granted. We expect people to see us — our unique selves, our value as individuals.
Those with disabilities, however, often don’t have that luxury. They are often overlooked by people, who might be embarrassed or unsure how to approach someone different from them.
That’s why U.S. National Cerebral Palsy Awareness Day is important. It is a reminder that persons with disabilities, like Cerebral Palsy, have the same hopes as everyone does.
PSEG Director of Client Relations Phil DiVuolo and his wife, Liz, understand that. They have three children — Alex, 13, and 11-year-old twins, Sophia and Maya. Sophia was born with Spastic Quadriplegia Cerebral Palsy, a serious form of the disorder that affects her legs and torso. She uses a wheelchair, receives physical and occupational therapy, and needs help with everyday tasks.
But despite her illness, Sophia is in many ways a typical pre-teen. “She’s so witty, observant and intuitive,” said Phil. “She just wants people to get to know her and see past the disability.” His wife Liz added, “Especially in middle school, Sophia feels that sometimes kids don’t give her a chance because of her wheelchair and the apparatus around her — and she’s just a regular kid. She wishes people wouldn’t always associate her with her disability.”
Like all parents, the DiVuolos want the best for Sophia and her sister and brother. They encourage her to dream and surround her with people who do the same.
Family helps. Phil’s mother is a superstar. She has been a devoted caregiver since Sophia was an infant. And there are aunts, uncles, and other relatives who have surrounded the DiVuolos with their love.
A 30-year veteran of PSEG, Phil praises the company’s support. He participates in the ABLE EBRG, dedicated to creating a workplace environment where employees with disabilities and caregivers are recognized, respected, and valued.
“Working at PSEG really feels like a family,” he said. “I do feel blessed. I’ve always had managers that were supportive.”
He recalled that his daughters were born nine weeks early and spent their first two months in the neonatal intensive care unit (NICU). “The bosses all told me to put my family first, and I never missed a night at the NICU.
“And now, 11 years later, if we need to be in New York for Sophia’s surgeries, I know I can take the time. Especially in the past two years, flexible work options have helped me balance work and the special needs of our family.”
That’s the kind of awareness — not one day of the year, but every day — that can really make a difference in someone’s life.
A touching story about an amazing family.
Thank you for sharing your story Sophia. You have a beautiful smile and are an inspiration to all of us with and without a disability. Thumbs up!
Great story way to go Sophia