I can only imagine how my parents
felt when they were told I might not live to see my first birthday. I was born
with a rare genetic disorder called campomelic syndrome or dysplasia. Its
symptoms include deformed bones and weak muscles among other health issues. I’m
hearing-impaired, and I’ve used a wheelchair for as long as I can remember. For
more information about campomelic syndrome, you can go to http://ghr.nlm.nih.gov/condition/campomelic-dysplasia.
During
her pregnancy, my mother Tracy knew there was something amiss about me. She
retired from her job for the federal government so she could focus on taking
care of me. My father Marty, a mechanical engineer for over 30 years so far,
has been actively involved in my life from the minute I was born. A few days
after my birth, my parents took me home with a heart monitor. Due to my soft
cleft palate, they had to force-feed me milk for three months. Their tender,
loving care helped me survive beyond infancy.
After
my first year of life, my parents enrolled me in preschool, which aided the
development of my social skills. I then attended an elementary school with an
excellent program for students with disabilities. My parents signed me up for
4-H (my first of many clubs). Over time, parts of my body such as my spine, hips,
and knees needed medical attention. My parents searched for the best orthopedic
surgeons, even if it meant going outside the state of Florida where we live. I underwent
15 surgeries during my childhood in Minnesota and Maryland as well as Florida. Prior
to these operations, my parents donated blood to be used in transfusions. My
father walked with me to the operating room and held my hand as I drifted off
to sleep from anesthesia. My parents tended to me during months of recovery.
One
series of surgeries followed by an extended period of rehabilitation left me
unable to physically go to school during the seventh grade, so I studied with a
tutor at home. Upon my enthusiastic return to school in the eighth grade, my
parents were supportive of my studies, extracurricular activities, and
volunteering, which carried over into my high school and college years. While I
was in class in high school, my mother spent thousands of hours volunteering at
my school. My father spent some of his time away from work helping me with my
math homework and science fair projects.
My
parents continued to show their unconditional love while I struggled with
mental health issues as a young adult. Giving my life a sense of fun, they took
me on memorable vacations from California to Canada. For example, my father
drove me to Elmira, New York, the burial site of one of my favorite authors,
Mark Twain. Later, my mother flew with me to New York City so I could try out
for Who Wants to Be a Millionaire?
and consoled me when I wasn’t accepted as a contestant.
As
Catholics, my parents instilled in me values such as an everlasting faith in
God and respect for others as well as myself. Whenever I felt discouraged by my
physical limitations, they encouraged me to focus on what I can do. Even though
I’m almost 30, I still live at my childhood home with my parents, who help me
with several activities of daily living and drive me wherever I need to go.
For
all of the above, I’m forever grateful and indebted to my parents, who dealt
with many challenges in raising me. They should be honored on more days than
Mother’s Day and Father’s Day. If it weren’t for them, my life as a person with
disabilities wouldn’t be as fulfilling.
