Growing up with Cerebral Palsy
My name is Juliana Ruggiero. I’m eighteen and have Spastic Cerebral Palsy. My story begins in 1999. I was a fragile preemie who weighed only 3.10 pounds. My parents were not able to hold me. Instead, I was taken away to the NICU. I was on a breathing machine and closely monitored by a team of doctors until I was stable enough and my lungs were developed enough to function on their own.
Only a few days into life, I had a stroke, and my brain bled. Doctors thought it was nothing, but the neurologist on call that night didn’t believe it and wanted to do an ultrasound. At just four days old, the results were not what my parents and family wanted to hear. “There’s a black spot and a bleed on your daughter’s brain,” the doctor said. She paused and explained it was brain damage. I might have cerebral palsy, but only testing would confirm it.
The neurologist started with a basic test to see how much damage the stroke had caused to my body. She had me move my fingers, hands, feet, and toes. The stroke caused me to lose movement in those important body parts. I spent most of my time in the hospital. When I was finally stable enough, they thought I could go home and “live a normal life.” But I was a tough baby, always crying, sick, fussy, and on a ton of medications. But no one, not even my doctors gave up on me. Without that amazing team of doctors, my family and I would not be where we are today.
Once I was released from the hospital, I started going to routine check ups with the neurologist. With a little bit of hard work and instruction, I regained feeling in every place… Except for one. My legs. The stroke had done the most damage to my legs; they were motionless. It still had not been confirmed whether I had CP or not. About a month or two later, I had another ultrasound done to see if the black spot or bleeding went away. The results were still the same, and my legs were tighter then ever.
On January 7, 2000, we got the confirmed news from that same neurologist that would change all of our lives forever.
“It is confirmed that your daughter has cerebral palsy.”
What would that mean for us, for me?
An orthopedic doctor recommended a gait test be done to see what form of CP I had. So, we headed to Hartford Hospital where the gait test was performed. When I walked, the doctor noticed I dangled my legs underneath me like “scissor blades.” He said I had a very mild form of the most common type of CP, spastic diplegia. The doctor also noticed when I sat on a table, my leg muscles wouldn’t relax and dangle naturally. He said to give it some time and, if nothing changed, I would need surgery.
I started school in the year 2002. That year, my health started to get out of control. I was always sick, in and out of the hospital again and again for countless ear infections and many other things. But, in the year 2001, my family was faced with a tough choice: There was no progress with my legs, so the doctor decided I needed to have surgery to release my muscles and walk effectively with a walker.
So, on January 7, 2003, just a few days after I turned four, I had my leg operation. I was supposed to be out of school for two months. But it didn’t go that way. I was back in school a week after having surgery and had no option but to do my recovery plan while in school. After two months of stretching, frustration, and tears, I was able to get my casts taken off and walk with the help of leg braces. Without the branch of support back then, I would not have made it through that difficult time.
Today at eighteen, I’m thriving, stronger and heather than ever. I have graduated high school and am a student at Gateway Community College. CP doesn’t define me. You should not let it define you no matter what people say or how “good” or “bad,” “mild” or “severe” it may be. I have my “why me” days sometimes, but I don’t let it stop me from doing what I want to do!
- Juliana Ruggiero
Juliana Ruggiero is nineteen, currently finishing her first year of college at Gateway Community College in New Haven, CT. When she graduates from her college transition program in two years, she will study journalism and Mental Health Counseling.