My Story: Living with Cerebral Palsy, Part I: Birth and Early Childhood

I was born prematurely on September 12, 1996. That day, as being 32 weeks pregnant, my mama underwent an emergency c-section because she had miserable pains in her bump after admitting to the hospital two days before. I FINALLY made it @ 11:54 am! I weighed 5 lbs 5 oz. Shortly after my birth, I suffered from a traumatic stroke as a result of my diagnosis of cerebral palsy which leaves me unable to speak on my own.

Me as a newborn baby girl. 

Me as a newborn baby girl with my daddy 

Me as a newborn baby girl with my mama 

Me as a newborn baby girl

Cerebral Palsy is a neurological disorder caused by brain damage which affects my ability to move, walk, and speak. The disorder also affects muscle coordination and balance. There’s no known cure for CP. However, people with cerebral palsy will need a wide range of medical care, therapies (physical therapy, occupational therapy, and/or speech therapy), mobility aids such as walking aids and wheelchairs, and/or assistive technology. So each person with CP has uniquely different treatments and accommodations for those needs. 

The serious traumatic injury forced me to stay in NICU for 17 days. It was a tough but beautiful day.  My parents were so excited to be able to have a beautiful daughter. They called me a miracle baby. For the first couple of years of my life, I have loved cuddling with my loved ones, especially my parents. That made me feel so special, happy, and joyful. 

Me as a 1-2 year old girl 

Me as a 2-year old girl. 

I was officially diagnosed with spastic quadriplegia cerebral palsy at age 2.5. Spastic quadriplegia is the most severe form of spastic cerebral palsy, affecting both arms and legs. Doctors said I didn’t meet milestones like crawling and feeding myself. Most importantly, I couldn’t even sit up. Although I was diagnosed with spastic quadriplegia CP, I started gaining control of my mind and body movements. I couldn’t hold my head up until I was around 3 years old. The prognosis went very well but it’s not really severe. Luckily, CP doesn’t affect any cognitive and visual functions in my brain. My type of cerebral palsy is very mild. My body is fully functioning. 

I began developing my own skills and abilities around the age of 3. I learned to read at the age of 3 and spell at the age of 5. At the age of 3, I started using a computer as I received a mini laptop, and I loved playing with the mini laptop. My dad taught me how to use technology which rendered me a tech genius. I would use a desktop computer with PC games including fashion games every single day. I received many PC games from my loved ones for my birthday parties and Christmas until I was about 12. These PC games have allowed me to learn everything in a fun and educational way. At the age of 5-6, I started dreaming about becoming a fashion designer and entrepreneur while playing these PC games on a computer. These fashion PC games were Barbie Fashion Show, Beauty Studio, and even more that I loved. I still have many of these computer games.Therefore, I discovered that I have developed an exceptional passion and eye for fashion. 

Me as a 3-year old girl using a computer, 

For using a computer, I can typically use a trackball mouse which is much easier to navigate the point through the desktop, an on-screen keyboard which allows me to use a trackball mouse to type letters/predictable words, and a physical keyboard which allows me to use my fingertips to use directional keys to scroll through the screen, and type sometimes. These gadgets for the computer are very helpful for those with poor hand dexterity and motor disabilities. 

My schooling began at age 3. I was enrolled in a unique preschool education program for physically impaired kids. At first, I used a picture chart to communicate my needs, answers, and understanding of what I was learning. With three months, I was given a computerized speaking device. My instructors had discovered I was a self-taught reader because they witnessed me programming a computer for the next day's school work. Officials at the school told my parents and I that having a photographic memory and an abundance of determination is what sets me apart from other individuals with Cerebral Palsy. They had never seen a three year old read. I honestly feel like other kids with CP would be able to have a sharp mind and develop her literacy skills such as reading, spelling, and writing even if their mind is not affected by their disability. These kids with cerebral palsy can learn to complete their studies through their own accommodations as I did. Perhaps they look quite different in their own ways.  

 Me as a preschooler walking with a walker.

This is the end of the blog post... In this blog post, I shared my story about living with Cerebral Palsy from newborn baby to preschooler with pictures of me. I built some wonderful memories of my birth and early childhood. My experience of early childhood was the beginning of my skill and ability development. I still have a childhood dream of becoming a fashion designer and entrepreneur. I thought it would be easy and fun to learn about fashion. I grew up loving fashion. My passion for fashion has grown stronger since I was a little girl. Fashion is my life. 

Thank you for reading this blog post. I hope you enjoyed reading it. Please share this blog post with your community and leave your comments below. I would appreciate your support. 

❤️ Marisa