“When I was pregnant with you and went for my monthly checkups, I always saw an older woman reading a Braille book. I thought ‘wow, it must be so hard to read those huge books with those bumps.’ She was always on her own, and I wondered how she did it.”
Little did my mom know she would soon get a crash course on blindness. I was born with congenital glaucoma – an extremely rare disease in children that causes the pressure inside the eyes to increase. This can damage the optic nerve, leading to permanent vision loss. While many people successfully manage it with medications and surgery, the fast progression of the disease left me without sight when I was just 2 years old. Like most people, Margarita Murillo, AKA my mom, had never known or interacted with someone who is blind. It is no wonder she was devastated when the doctors told her I would lose my sight.
“I felt very sad. I cried because I wondered ‘what will become of my child? How are we going to manage? Why my baby girl? Why us?’”
While the possibility of losing my vision was daunting to my parents and older brother, my mom says that my family’s priority was helping me stay healthy and doing everything they could to manage my eye condition. With constant surgeries and hospitalizations, they could only take it day by day. This was such an important priority for my mom that she quit her job and even stopped pursuing her aspirations of becoming an accountant to care for me. Back in Mexico she had earned her bachelor’s degree in accounting, but never used it in the United States. Eventually she returned to work when I started school and my health was stabilized.
My parents immigrated to the United States from Mexico two years before I was born, so they were still trying to find their way and adapting to the American culture. They had no clue where to turn for help or get information about raising a blind child. I was born in the late 1980s, a time when little information existed about the topic. There was no such thing as the internet, so finding information on the web was out of the question.
Fortunately, I was a patient at the University of Illinois at Chicago, which is next door to The Chicago Lighthouse. My mom thinks the doctors at UIC referred us to The Chicago Lighthouse, where I began receiving early intervention services through the birth to 3 program.
“[The teachers] from the Lighthouse really helped us and gave us hope, because you were beginning to receive the early help you needed.”
My family was determined to treat me like any other child. As hard as it might be to believe, I did not feel any different from other children when I was young – everyone did things using only four senses as far as I was concerned! Although my mom was afraid I would fall or get hurt when playing, I was always determined to be like anyone else, and my brother encouraged me to do just that. She also got a lot of encouragement from my teachers.
“We had a lot of communication with your teachers… they always encouraged us and told us you were a fast learner.”
For my mom, my blindness was not the hardest challenge. The most difficult part was knowing I would never see things like the beautiful Christmas decorations and lights during the holidays. Even more difficult was dealing with the stares from the public.
“I felt so angry when people stared at you… I often just stared back at them.”
Nevertheless, she was always determined to treat me like any other child, and encourages other families to do just that.
“It’s so much easier nowadays for parents of blind children to find resources and support groups thanks to the internet. Most importantly, support and encourage your child… that is so important.”
Happy Mother’s Day from the Sandy’s View team and all of us at The Chicago Lighthouse. I personally have so much to thank my mom for, and appreciate everything she has done for me. Although she never reached her dream of becoming a successful accountant, my mom can be sure that all her encouragement, support and high expectations helped me become who I am. From the bottom of my heart, I encourage all mothers of blind or otherwise disabled children to do the same. Your child will appreciate it more than you can imagine.