My story living with cerebral palsy

During a monthly, routine doctor’s appointment, my mom was told that she was not going home. “You are going straight into the hospital.  We have to do an emergency “C” section to deliver your baby,” the doctor said. My mom, with her dark brown hair, green eyes and white pale skin, was pregnant with me. Her blood pressure was so high that it poised a dangerous to the both of us.

Me being weighted

It was November 1996. I was supposed to be born in 1997. I was early. We were at Credit Valley Hospital. But the hospital was not equipped to deliver a baby in the early stages of pregnancy. The hospital had to notify all the hospitals in Toronto and Buffalo to see who had the room to take my mom in.  Women’s College Hospital in Toronto had space. I was born at 27 weeks, in the early morning on a Wednesday.  I was not fully developed.

Crying in the early stages

I only weighted 863 grams. That’s not even one pound.  My mother was the one that told me about my birth and what I went through as a baby.  When my mom was in the hospital, I went right into the incubator.  My brown eyes were covered for at least one month.

From pictures, I looked like a dead rabbit. My skin was so transparent that you could see every bone in my body. I did not have eyebrows, my head was a size of a golf ball. My mom would say that she saw me grow every day during the first weeks of my life.

Fitting inside the palm of someone’s hand

I was losing a lot of blood on the second day of my life. Another time, they put a tube down my throat. It punctured my lungs and I needed two blood transfusions. The blood they gave me was from a special batch to be used with babies only. 

Then, on December 6, 1996, I got lucky. If it was not for my family, I don’t think I would be here today.

During their visits, they noticed that I was uncomfortable in the incubator. My eyes were still covered. My mom asked the nurse on call to come over to check on me. She told my mom to wait because she was attending to another baby.  My mom yelled at the nurse for her to check me out. She noticed that her son was in bad shape. It was a code blue. People rushed into my room. I had lost oxygen to my brain, and this caused my cerebral palsy.

Inside the incubator

Growing up with cerebral palsy has always been a sensitive topic in my life. I don’t like to open up about it. Being diagnosed and growing up with CP has been challenging for me. People make assumptions about who and what I am. 

But truth be told, I still have a lot of challenges in my life.  When I was little child, I went to ErinoaksKids – a facility for kids with disabilities. That’s where I would go for leg therapy, and to fit leg braces, that I wore when I was 18 months. They were made for me. It was hard.

The looks I got from people as a little boy hurt. I fought with my mom. I didn’t want to wear them. But in the end, I did because the leg braces helped me with my balance.

My disability is here for the rest of my life. I will not get better. What I can do is a lot of exercise. Even now, I still get the odd look and questions about why I use disability parking.

I have endured a lot in my life. I have had so many doctors appointments and I have met with a top paediatric surgeon at Sick Kids Hospital.

Before/after surgery

In 2014, I decided, with the help of my parents, to have surgery on my leg to extend my muscle and straighten my leg and make my foot flat. This meant not walking on my tip toes. That was scary for me. I had the surgery at Sick Kids and then I was transferred to Holland Bloorview Kids Rehabilitation hospital for three months of therapy.  

Walking one day after surgery

My schooling was hard for me as a teenager. Now, five years after my surgery I am healthy and strong. There still are days have where I face challenges. But I am thriving. I am trying to make my life as normal as possible.

My mom had a doctor once tell her that “your son will not walk or do things like other little boys.” Well, I’m proof that doctor was wrong.  My parents fought for me from the day I was born. they always said you can do whatever you want to, go for it and I have.

Mark Freitas
About Mark Freitas 11 Articles
Mark Freitas is an expert when it comes to sports, video games and movies.

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