The Tears and the Fears
“Ayanna, you have a minute?” I stopped at the mention of my name. I turned in the direction of the voice to find one of my school’s coordinators.
“Sure.” I replied.
The coordinator for the Early Intervention program, you know, the program that helps parents of babies with visual impairments?”
“Yeah,” I wondered how this pertained to me.
“Well, they’re having a gathering with the parents, and were hoping you and a few other girls would be interested in coming to talk about your lives as blind young women.” She said hopefully.
“Ok, sure.” I replied.
“Great!” She said enthusiastically as she proceeded down the hall. I was greatful that I was one of the students chosen to speak to and inspire these parents, but I didn’t understand why they chose me. I didn’t think my life story was very inspiring. What enlightenment could I offer? But little did I know, that on that day, they would teach me just as much as I taught them.
I walked into the room not knowing what to expect. At the table seated were four couples as well as an older woman, a toddler who looked to be her grandson, and his nurse. The coordinator asked all of the parents to introduce themselves and explain the visual disability of their baby. Opposite me were a man and his wife who after stating their names, proceeded to explain the disability of their baby. "Our son is six months old, and he was recently diagnosed with..." The mother's voice trailed off as she reached for a tissue to wipe the tears from her eyes. "He was diagnosed with Leber's Congenital Amaurosis." "The doctor told us that it's like having a camera with no film. You have all of the working equipment but the film or retina is damaged. So like a camera, with no film the images can't be properly processed." There was sadness and uncertainty in the father's voice as he said this. I heard a similar sadness as all of the parents spoke about their children and their varying visual disabilities. After each parent introduced themselves and explained the visual disability of their baby, the students were instructed to introduce ourselves and speak a little about our lives. I was sure that each of the other students, as well as I were trying to find a way to inspire these parents, help them be optimistic yet still be honest about how troubling blindness can be sometimes. The girl to my right spoke first, "Uh, I'm tatyanna, I have albinism. This means I have no pigment in my skin, hair, or eyes. So I always felt different. When you lack the pigment known as melanin, you usually are fair in complexion as well as hair color and have uncorrectable vision. I always wanted to fit in.” confessed Tatyanna.
“I don't want that for my baby, I don't want him to feel that way." Said a mother sorrowfully. "Who does? Every parent, whether they have a blind or sighted child hopes that their child will fit in. Why? Because all teenagers go through periods of insecurity. All of us, both sighted and blind. What else you got? Give me a specific fear that is unique to a blind child. Once you think about it, you'll realize that there aren't many." I interceded. I wanted to challenge them. I wanted them to understand that the things that they were stressing over, weren't the important matters in a blind person's life. "My name is Ayanna, and I too have Leber's congenital amaurosis." At this the woman in front of me began to weep again. This was understandable; seeing the severity of my disability frightened her, as most things did a new mother. I made a point to speak directly to this couple in particular. "You should know that LCA, has a very wide spectrum, so your child could be completely blind or they may only have low vision. All you can do now is nurture him to your best ability.”
"He seems so happy.” Said the older woman. We were getting through to someone. The way This woman said this showed me that she understood the point that my peers and I were trying to make. "He laughs and plays. He's so young he doesn't notice." She lifted him from the floor and seated him on her lap.
"They shouldn't notice." Said one of the students. "Treat them as you would an average sighted child. My parents never made me feel different, my siblings and I were always treated equally. I'm Britni, I was born in Panama, and spent six months in an orphanage, until my parents saw me and adopted me. From the day I became their daughter, I was never treated any differently. I never felt anything less than their youngest daughter who happened to be blind. They chose me. Knowing nothing except that they wanted me, no matter the hardships we would face. We would face them together as a family." As Britni was speaking, I'd heard my mother enter the room and discretely introduce herself. I’d asked my mom to attend this gathering hoping that she could connect with them being that she too, went through their experience twice before. After Britni had finished, I asked my mother to share her experience of being a young mother caring for a blind child. "Hi, I'm Robin, When Ayanna was born there was no indication of any visual abnormality. It wasn't until she was six months old that doctors diagnosed her with LCA. I was twenty-one years old and knew little about many things, least of which was blindness. Then when I was thirty-five, my third daughter was born, with an entirely different eye disorder. Completely unrelated, and they are both the most amazing girls that a mother could ask for." I believe my mother got through to them. If no one else did, she did. My mom represented perseverance, they could look at her and say to themselves, "If the lady with two blind kids can do it, then so can I." That's what I wanted. I wanted each parent to understand that simply because their child is blind does not mean that he or she will spend all of their days in darkness. I wanted them to know that their light will be the happiness and love they receive from the important people in their lives. "There are accommodations available for us." I told them. "With the necessary equipment, we can perform everyday tasks just as competently as anyone else." Meeting with the parents of those blind babies was a very impacting experience. Prior to that day, I'd rarely considered the massive amount of stress that weighs on the shoulders of the parent of a visually impaired child. It inspired me to be more involved in the blind community. I want to motivate families to except their situation, understand how it will affect the life of the blind individual and work on strategies to ensure them the best possible quality of life. I wonder if had I declined the offer to come share my story with these families would I have been inspired to start a charity organization with my mother that aims to improve the lives of these children.
“Ayanna, you have a minute?” I stopped at the mention of my name. I turned in the direction of the voice to find one of my school’s coordinators.
“Sure.” I replied.
The coordinator for the Early Intervention program, you know, the program that helps parents of babies with visual impairments?”
“Yeah,” I wondered how this pertained to me.
“Well, they’re having a gathering with the parents, and were hoping you and a few other girls would be interested in coming to talk about your lives as blind young women.” She said hopefully.
“Ok, sure.” I replied.
“Great!” She said enthusiastically as she proceeded down the hall. I was greatful that I was one of the students chosen to speak to and inspire these parents, but I didn’t understand why they chose me. I didn’t think my life story was very inspiring. What enlightenment could I offer? But little did I know, that on that day, they would teach me just as much as I taught them.
I walked into the room not knowing what to expect. At the table seated were four couples as well as an older woman, a toddler who looked to be her grandson, and his nurse. The coordinator asked all of the parents to introduce themselves and explain the visual disability of their baby. Opposite me were a man and his wife who after stating their names, proceeded to explain the disability of their baby. "Our son is six months old, and he was recently diagnosed with..." The mother's voice trailed off as she reached for a tissue to wipe the tears from her eyes. "He was diagnosed with Leber's Congenital Amaurosis." "The doctor told us that it's like having a camera with no film. You have all of the working equipment but the film or retina is damaged. So like a camera, with no film the images can't be properly processed." There was sadness and uncertainty in the father's voice as he said this. I heard a similar sadness as all of the parents spoke about their children and their varying visual disabilities. After each parent introduced themselves and explained the visual disability of their baby, the students were instructed to introduce ourselves and speak a little about our lives. I was sure that each of the other students, as well as I were trying to find a way to inspire these parents, help them be optimistic yet still be honest about how troubling blindness can be sometimes. The girl to my right spoke first, "Uh, I'm tatyanna, I have albinism. This means I have no pigment in my skin, hair, or eyes. So I always felt different. When you lack the pigment known as melanin, you usually are fair in complexion as well as hair color and have uncorrectable vision. I always wanted to fit in.” confessed Tatyanna.
“I don't want that for my baby, I don't want him to feel that way." Said a mother sorrowfully. "Who does? Every parent, whether they have a blind or sighted child hopes that their child will fit in. Why? Because all teenagers go through periods of insecurity. All of us, both sighted and blind. What else you got? Give me a specific fear that is unique to a blind child. Once you think about it, you'll realize that there aren't many." I interceded. I wanted to challenge them. I wanted them to understand that the things that they were stressing over, weren't the important matters in a blind person's life. "My name is Ayanna, and I too have Leber's congenital amaurosis." At this the woman in front of me began to weep again. This was understandable; seeing the severity of my disability frightened her, as most things did a new mother. I made a point to speak directly to this couple in particular. "You should know that LCA, has a very wide spectrum, so your child could be completely blind or they may only have low vision. All you can do now is nurture him to your best ability.”
"He seems so happy.” Said the older woman. We were getting through to someone. The way This woman said this showed me that she understood the point that my peers and I were trying to make. "He laughs and plays. He's so young he doesn't notice." She lifted him from the floor and seated him on her lap.
"They shouldn't notice." Said one of the students. "Treat them as you would an average sighted child. My parents never made me feel different, my siblings and I were always treated equally. I'm Britni, I was born in Panama, and spent six months in an orphanage, until my parents saw me and adopted me. From the day I became their daughter, I was never treated any differently. I never felt anything less than their youngest daughter who happened to be blind. They chose me. Knowing nothing except that they wanted me, no matter the hardships we would face. We would face them together as a family." As Britni was speaking, I'd heard my mother enter the room and discretely introduce herself. I’d asked my mom to attend this gathering hoping that she could connect with them being that she too, went through their experience twice before. After Britni had finished, I asked my mother to share her experience of being a young mother caring for a blind child. "Hi, I'm Robin, When Ayanna was born there was no indication of any visual abnormality. It wasn't until she was six months old that doctors diagnosed her with LCA. I was twenty-one years old and knew little about many things, least of which was blindness. Then when I was thirty-five, my third daughter was born, with an entirely different eye disorder. Completely unrelated, and they are both the most amazing girls that a mother could ask for." I believe my mother got through to them. If no one else did, she did. My mom represented perseverance, they could look at her and say to themselves, "If the lady with two blind kids can do it, then so can I." That's what I wanted. I wanted each parent to understand that simply because their child is blind does not mean that he or she will spend all of their days in darkness. I wanted them to know that their light will be the happiness and love they receive from the important people in their lives. "There are accommodations available for us." I told them. "With the necessary equipment, we can perform everyday tasks just as competently as anyone else." Meeting with the parents of those blind babies was a very impacting experience. Prior to that day, I'd rarely considered the massive amount of stress that weighs on the shoulders of the parent of a visually impaired child. It inspired me to be more involved in the blind community. I want to motivate families to except their situation, understand how it will affect the life of the blind individual and work on strategies to ensure them the best possible quality of life. I wonder if had I declined the offer to come share my story with these families would I have been inspired to start a charity organization with my mother that aims to improve the lives of these children.