My birth was an emotional event for much of my family. I honestly couldn’t tell you what it was like. The memories are a little fuzzy or more seriously nonexistent. On my way into the world I was lodged in the birth canal for a few seconds and freed by a suction device. I was set on a table after appearing and didn’t move or make a sound for fifteen minutes. The following months were filled with doctor appointment and worried family members. By the time a plan was implemented to help, seven neurologists had examined me and given independent diagnoses.
Just days after birth the first neurologist took a look. During those first days I experienced the one seizure I have had in my life. After running a variety of tests the doctor presented her findings to my parents. With mom still in the hospital bed I was given a diagnoses. The trauma from birth had cause brain damage and it was difficult to comprehensively understand the extent. My parents were told the damage seemed to affect my physical mobility. I would have impaired function in my gross and fine motor movement. Mom and dad asked for an example of what it might look like and the answer was I most likely would struggle to perform complex motor movement like handwriting and would probably never ride a bike. I would have trouble with balance and coordination, so my ability to walk independently would be a question. I was having difficulty controlling my drool bringing my ability to speak into question as well.
Within the first few weeks of life I saw more neurologists each giving a slightly better outlook. No doctor could predict with certainty what my life would look like. When the final neurologist examined me he provided the best news. He has been described to me as an older gentleman who was partially retired at the time. The doctor had characteristics of a nurturing grandfather figure that my mother took to quickly. It’s possible if he had brought bad news he may have been described quite differently, but I digress… The neurologist thought I would probably be okay. It would be a struggle but living an independent life wasn’t out of the question. He wanted me to begin intensive physical and speech therapy.
The prospects of my life hung in the balance for a long time. The physical milestones read about in books for newborns were discarded. The rules for me had to be rewritten so we got to work. I worked with a physical therapist nearly every day for the first years of my life. We worked on coordination and balance. My body had trouble naturally knowing what to do so we taught it how to move. Slowly I made progress gaining balance and coordination. The milestones other babies’ hit I began to achieve it simply took me longer and I was required to work more diligently to reach them.
I was placed on a physical continuum from birth because there was little way to understand how much my cerebral palsy could improve. I could end up needing a walker to get around or I may struggle walking without support, but have the ability to move independently. There was simply no way to tell how my movement would turn out early in my life. As a child I was pigeon-toed, so each night my legs and ankles were put in braces to shift my leg position outward rather than inward. I wore ankle braces and special shoes until entering elementary school at which time the doctors made insoles for my shoes. The insoles continued helping with stability but it also signified my balance and gate were improving. By the end of elementary school I didn’t need the insoles to be placed in my shoes. I could wear any shoe I choose as long as it gave me stability. My stability continued to improve giving me the ability buy shoes thinking less about shoe structure and more about style.
It’s a blessing to have the mobility I have today. There was no way to guess at 35 I would be playing golf, skiing, cycling, and strength training. The long road of physical therapy early in life paid dividends. My journey of continuing to build strength and stay in shape only becomes more important as I age. The doctors were skeptical about me riding a bike and having accomplished that task my challenge now is to keep that ability into old age. Accomplishing the goal of physical activity today is similar to accomplishing the goal of walking without the assistance of braces or specially made insoles. Strength training has taken over for physical therapy along my path to greater stability as I continue my lifelong challenge to improve mobility.
A Journey With Cerebral Palsy 