Part 1 of 2 As a new parent, there are few things that could scare you more than hearing that your infant had a stroke. These are five words no parent wants to hear. On May 26th, 2001, two days after I was born, my parents received the news that I had a neonatal stroke. According to John Hopkins Medicine, pediatric stroke is a rare condition that affects one in every 4,000 newborns and 2,000 older children each year. Today, I am thankful the effects of my stroke are not as severe as they could have been, but I did not always feel that way.
My neonatal stroke was on the right side of my brain which affects my left arm and leg. I was born premature via cesarean section after having a low heart rate and my umbilical cord being wrapped around my neck. I spent six weeks in the Neonatal Intensive Care Unit (NICU) at Rush University Medical Center. My initial diagnosis was left hemiplegia, which is a form of cerebral palsy affecting the left half of my body. My parents were unsure of what to expect in the future until I struggled to meet certain milestones like pulling myself up or walking unassisted. I had my first and only seizure when I was three years old.
My parents have supported me through so many difficult times, like when I used to cry from pain when I received Botox injections to treat the tightness in my arm. They held my hand when I was still wearing braces until I began middle school and was extremely scared of the saw used to cut off the molds for my braces. They took it one step at a time, because that is all they could do after their daughter was diagnosed with an adult-associated diagnosis.
Personally, I will never know what it is like to have two fully functioning arms and legs, because I only know what life is like with a permanent disability. As a result, I have never learned how to complete tasks bilaterally, even after about 12 years of either occupational or physical therapy. I was a stubborn child, so my parents and medical team had to convince me to do my exercises to strengthen my extremities and to wear my braces. As an elementary and middle schooler, I became aware of how different I was from my classmates, because I was the kid who wore braces and left class to receive in-school physical and occupational therapy a few days a week. I wanted to do more than just go to occupational and physical therapy after school. At times, this made it difficult to make close friends until I was in college.
In addition to difficulty with bilateral fine-motor tasks, I was closely monitored for signs of visual neglect on my left side as I got older. As a result of my stroke, I have a permanant visual impairment called Left Homonymous Hemianopia. In the simplest language, that means I am unable to see out of the left side of both eyes, so about 50% of my vision is gone. This was one of the hardest and most emotional diagnoses I have dealt with, because I was diagnosed while in high school at the age of 16. Then, I was told I would be unable to legally drive, because I do not meet the visual requirements for most states. I remember being in shock that day. My neuro-ophthalmologist explained to me that my eyes were perfectly healthy with 20/20 vision, but I had brain damage and there would not be anything we could do to fix it. Since receiving this life changing diagnosis, I have battled anxiety and depression. At the time of my diagnosis, I was a junior in high school running competitive cross country and track and field. So many things ran through my head that day about what the future would hold with so many unknowns and wondering whether I would still be able to run.
With all my diagnoses post-stroke, I could focus on being sad about what I might not be able to do or be thankful for the abilities God has given me and all that I have overcome so far. Now, I am a senior in college, studying Health Communication with a minor in Psychology. I have been able to excel academically after being told by various educators I was not smart enough to take higher level classes or when I was older that I was faking my mostly invisible disability. Today, I am grateful my parents encouraged me to participate in cross country in 5th grade, a sport where my disability did not affect my ability to compete with my teammates as other sports did. 12 years later, I would never have dreamed that I would have had so much success in running, especially at the collegiate level, and be able to compete for two different colleges. Now, I can say that I won a team National Championship for Cross Country and am an individual All-American. I was finally able to fulfill my dreams of going away to college for my junior year after earning my associates degree, although I knew it would be a scary transition and difficult adjustment. After graduating with my bachelor’s degree, I hope to work for an organization like the American H
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