Written by Jasmin Garcia, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease.
To this day, I cannot remember a time in my life that our lives did not revolve around my brother Brian. I was only three years old when he was born so I can’t say that I was excited or that I remember when he came home from the hospital.
My memories of him start when my parents had to leave me with my aunt or grandma to seek out of state medical help for him. He had his first seizure at three months old. First it was UCLA for a couple of months, then it was Florida. Eventually my little sister Karina was born, and then I wasn’t so alone. My parent again had to leave me and her behind for the sake of Brian’s health.
Do I have resentment towards my parents or Brian? Never. I did have to grow up a lot faster compared to those around me. I had to care for myself and my little sister. After some time, my mom took responsibility of my younger cousin Anthony. So, it was my mom, me, Brian in a wheelchair, and Anthony and Karina in a double stroller. Of course, I had to step up and help my mom. She had so much on her plate, going from different doctors’ appointments in Las Vegas to driving me to school in Pahrump. There really wasn’t time for me to be a kid.
As years passed, I grew up learning the different medications Brian needed. How to connect him to his feeding pump, how to boles feed him. When to change his diaper, or calm him down after a seizure. I was my mom’s right hand. As Brian grew, so did my knowledge in Epilepsy and LGS (Lennox Gastaut Syndrome). I grew up to be able to transfer him from the car, to his wheelchair to his bed. I would care for him overnight when my parents needed a break. I was always there for him, I always there for my family.
The fifteen years Brian was alive, my family faced many hardships. We were never able to take trips as a family. Someone always had to stay behind with Brian because it was hard to stay on schedule with feedings and medications the older he got. If we did go on trips we were limited to time. Brian couldn’t sit for too long in his wheelchair, he couldn’t be out in the sun for too long without having a skin reaction due to his medicine. There was always some sort of issue that would come up as to why we couldn’t do things as a family.
When Brian was in the hospital, I had to miss school to either stay with my younger siblings or I would stay with my mom in the hospital so she could have time to rest and not have to worry about my brother late at night. I would miss school for months at a time, due to his health being so poor and my parents needing my help. My parents were not able to attend a lot of my sporting events because they had to take care of Brian. If anyone was able to go, it would only be one of my parents because again, someone always had to stay behind with him to avoid any health complications. My family was never ever truly complete.
Since he has passed, I have still faced several hardships. I know he is no longer suffering and that he is at peace. But I feel so lost, I don’t really understand my life without him. My motivation and power for school has dropped significantly simply because I had always worked so hard because I knew I was next in line to assume his care. To this day, I try to motivate myself I try and find reasons why I need to continue my career.
When Brian passed away, I was in the middle of spring semester. His loss made it extremely hard for me to focus in class. I found it a lot easier to not get up at all in the morning than to pretend to be okay around my classmates. Brian may have prevented us from living like everyone else but he gave us something else. He was the heart of my family, and he continues to live on in all of us. Brian’s epilepsy was never a burden to me.
I would do anything for him and I will be eternally grateful for the lessons he taught me in life. I learned to cherish my abilities, to cherish the simple fact of being able to walk. I learned to never take life for granted, I learned to love a child for who they are beyond their disability.