The effects of Cerebral Palsy (CP) develop during pregnancy or childbirth or shortly thereafter, and caused by an abnormal development of damage to the part of the brain that controls movement. Mine was the result of a stoke at sixteen months old from a heart problem called transposition of the great vessel.
When I was around three, I had the Mustard Procedure. An operation first developed by Dr. William Mustard at the Hospital for Sick Children in Toronto. It allows a total correction, and employs a baffle or tunnel to redirect blood flow. Replaced in the late 1980’s by the Jatene Procedure, in which the native arteries were switched back to normal blood flow. Even after the surgery, the doctors didn’t see a long live for me.
After I had the stroke and the operation that went with it, I had to relearn everything I was able to do as a toddler. Even the smallest thing, like holding my head up straight was a challenge. In order to help me walk, I had numerous operations on my lower extremities. And on multiple occasions I had to wear casts on my legs. Some full leg casts up to my hips, others to my knees.
For the most part, I don’t remember but bits and pieces. Probably a good thing. Two of me earliest memories are waking up and seeing a set of parallel bars my father had built, and sitting on a beer case against the fridge determined to walk the five feet to the back door on my own.
I started preschool at a young age at Beulah Christen church. They continued to help with my legs, giving me physical therapy a few times a week. At times I’d stand in a standing table with a door shut behind my back, to work on balance. I also went to speech therapy while I was there, and continued through the eighth grade.
One of the biggest factors of me walking was my Therapist, Ms. Irene Nelson. She began working with me since before I can remember, and all through grade school. Without her, I would not have had the childhood I did.
I entered public school in the fall on 1976 after my parents fought to get me enrolled. I felt like a regular kid going to a normal school. I began the year in third grade. But within a month the work got overwhelming, and I was quickly falling behind. I was sent across the hall to a second grade class for a couple of subjects, before it became permanent a couple days later.
The work was hard and I wasn’t the best of students, but I got through it with the help from my mom. Looking back, my teacher, Mrs. Joanie Sutter, might have been the perfect for me. She saw something in me that I didn’t see, and didn’t let me quit on myself.
Even though I was able to walk and stand on my own, I still used my crutches in school. One day when us kids were lined up to go outside for recess, I accidentally on purpose left them in the coat room. I was a bit surprised when Mrs. Sutter didn’t say anything to me as we walked out. I proved to myself that day that I was just as independent as the other kids. I didn’t use them again until high school.
The following year when it was time for baseball sign up, my parents let me. My community and the kids were supportive. When I was at bat, I had a runner run the bases. It was more about me playing with the other kids instead of pretending to play in front of my house. Two year later I again player, but that was the extant of my baseball career.
I began to bowl during my middle school years through high school. At one time I was bowling three times a week; in two weekend leagues and with a club in high school. It was a fun way to keep active during the winter months, and I enjoyed the competitiveness of it. I loved to challenge myself to see if I can break a hundred, which I did on more than a few occasions.
Because of my heart, I never got the chance to play high school football like I wanted too. I settled for being a mascot/manager. I’d go to every practice, and be on the sidelines for ever game. God, I loved Friday night. All the guys accepted me as part of the team. They knew if I could’ve gone into battle with then, I would have.
If I haven’t developed CP, I might have not been able to do any of it. I truly believe CP saved, and prolonged my life. I’m about to turn fifty, and my legs gave out on my, but I’m still alive. And that is all that matters.