Most children develop pretty similarly. They are born, they learn to crawl then walk and then run. My life didn’t start that way. I was born in February of 1994 in Redwood City, California to two loving parents. My parents were in their late twenties when they had me and were anxious to start a family. They had been married for seven years by the time I was born so I was brought into a very stable environment. Although my mother had taken good care of herself throughout her pregnancy, my health upon birth was not what they expected it to be. My mother recalls seeing me for the first and asking the nurse what was on my back.
It was soon realized that I had a closed meingocele on th lower section of my back meaning that I had Spina Bifida. Within an hour, I was placed into a bulletproof box and taken across the hospital to be watched closely. Since my meingocele was not open, the doctors decided that they would wait to operate on me until I was stronger. My parents were immediately given a crash course in this rare birth defect and began to learn how to cope with my possible life-long deficits. It was expected that I wouldn’t be able to walk nor would I be able to feel various parts of my body.
Originally, the doctors wanted to preform my first surgery at six months (or before I began to roll over) but I started to dramatically improve and grow rapidly so they pushed my surgery up three months. After the surgery, I had to lie flat on my back for seven days without being held or moved. The worry was that the spinal fluid would not settle correctly (causing me major damage) so my parents had to anxiously wait for the week to pass. Luckily, all went as planned and I did not need to have a shunt installed to drain excess fluid. At this time, my family and I lived in San Mateo, California in a two-bedroom condo near a lake.
My mother was working in San Francisco at Anderson Consulting and my father was working in Oakland at Firemen’s Fund. I spent most of my time feeding the ducks that lived by the lake, playing in the pool and laughing in my playroom. I continued to visit the doctor but I was still doing activities that a normal child would have been doing at this time. Around my first birthday, my parents decided that they wanted to buy a house. We eventually moved into a brand new development in Pleasanton, California. My parents quickly made friends with the other young families that had moved in around us and I soon joined a playgroup.
I remember this time as one filled with children playing in the streets, barbeques, potlucks and fun. Around age three, my parents enrolled me at Gingerbread Preschool. After a few months of attending preschool, I began asking for a baby sister. I remember noticing that many of the kids at my school had babies in their family and wanting one in my own family. Due to my medical history, any child that my parents had after me had a much higher risk of having the same birth defect. My parents began taking all preventive measures possible so that this child would not experience the same difficulties I had.
In July of that year, my little sister was born in Walnut Creek, California. I was immediately infatuated and loved spending as much time! could with her. Thankfully, she was not born with Spina Bifida to the great joy of my family. The next year, I started kindergarten at Mohr Elementary. The same year I joined a soccer team through the city, started dance lessons and became a member of a Girl Scout troop. The idea of community and respect were traits that were instilled in me from an early age so being around others was something I enjoyed greatly.
Girl Scouts taught me how to be fair and polite to all and to help those that were less fortunate than myself. My mother was my troop leader, which was great because I got to spend more time with her and enjoy the company of my friends at the same time. My father also helped coach my soccer team. Having both my parents be so involved in my extracurricular activities made me realize how important family is early on. In December, 1 preformed in a dance recital for the holidays. I was able to keep up with the other dancers and preformed my steps relatively accurately.
Soon after this, my class began a tap unit and my parents saw some major changes in how I was moving. My left foot was unable to tap at the same rhythm or speed as my right and I was falling and tripping much more often than before. Outside of dance, I began to experience some other issues with my body and losing control of functions I had previously mastered. Every six months, my parents and I attended sessions at the Oakland Spina Bifida Center. On St. Patrick’s Day of my kindergarten year, we went in for an annual visit. Miraculously, at the time we went in for my check up a new neurosurgeon had just started practicing there.
My parents explained to him the changes they were noticing in my abilities and he was able to quickly identify what he th? ought was going on. We were instructed to get a rush MRI and within a few days | was diagnosed with Split Cord Malformation. My parents were both shocked and upset because they realized that this condition had been previously overlooked and had gone undiagnosed for years. The initial reaction was that I most likely had lost nerve function in most of my left leg due to this oversight. A surgery was immediately scheduled and I was taken out of school right as Spring Break was beginning.
The friends | had from my neighborhood gave me a beautiful princess nightgown and my parents went out and bought movies and books for me to read during my hospital stay. I spent a week at a hospital in Sacramento with my parents while my sister was sent to stay with my aunt. I do not remember much from this surgery but I can vividly remember the pain I felt upon taking my first steps after surgery. I can also clearly remember counting down while the anesthesia set in for my surgery. Although these memoires are tough to look back on, I see as points of strength rather than times of weakness.
Since my surgery was occurring in May, I ended up missing the remainder of the school year. I ended up visiting my class a few times in my wheelchair to say hello and be around other kids. Thinking about this time now, I feel as though missing a good deal of my first year of formal education cost me more than anyone would have ever dreamed. I luckily had the ability to easily make friends at school so my social skills did not suffer greatly from this time away. Unfortunately, I fell behind in curriculum due to this regardless of the fact that I had a home schoolteacher for the time I missed.
The biggest deficit I encountered was in my mathematic skills and my word recognition. By missing vital instruction in these basic concepts, I had to use more will and determination to learn the content I did not already know going into first grade. Since my back was so fragile, I was not allowed to be in large crowds due to the fear that someone may bump into me. This meant that I couldn’t go to large gatherings and walk around causing me to be confined to a wheelchair when going outside. Although, I was able to walk, the clinic was taking every caution possible when it came to my recovery.
When soccer season came around again, my doctor suggested that|| be moved to the goalie position so kids wouldn’t run into me or hurt me in anyway. Although this was not my choice, I look at this decision now as a metaphor for my life. Since birth, I have been forced to guard myself in order to stay healthy and live a normal life. Just like a goalie, I have to protect myself from outside forces and block out any negative energy or people. Around this time, I began to notice that many of my friends were participating in youth groups and taking their First Communion.
Although, I knew I had been baptized I wasn’t exactly sure what that meant nor did I understand why people went to church every Sunday. My father was raised in the Mexican Catholic Church while my mother was brought up as Protestant. Therefore, my parents never selected one religion to raise my sister and I in. I never had a religious sense of self nor did I think I needed one. Many of my friends questioned why! did not partake in church activities like they did. As a seven year old, I simply explained it as not wanting to wake up on Sunday mornings.
As an adult, I admire my parent’s decision to not force me into a particular religion. I find it slightly corrupt and wrong to force particular religious views onto children who do not know better therefore I am thankful each day that I had the freedom to decide my religious path. I identify myself a agnostic because I believe that there is some sort of higher power but I do not subscribe to any particular one. I have been able to create my own set of beliefs and values without having to listen to that of a scripture, which I believe, is a beautiful thing to be able to do.