If you don’t notice the cane, eight-year-old Mekyla Belgrave comes across as cute little miss who loves sunglasses, and there is nothing about her engaging presence and constant chatter either which would give away the fact that she is blind.
In fact both of the child’s eyes were removed when she was only months old, shortly after she had been diagnosed with retinoblastoma, a form of childhood cancer that starts in immature retinal cells in one or both eyes. This cancer may begin from the time a baby is in the womb and this may have been the case for little Mekyla as she was just four months old when her parents realized that something was wrong with her eyes.
For her age Mekyla comes across as a very intelligent child who is not shy about expressing her opinion, and her mother Celeste Belgrave’s worst fear is that she would not be given the opportunity to fulfil her potential because of her blindness. She is very concerned about her daughter and others like her not being catered for when national examinations are set, and asked how the children could grow to become productive adults if they were not given the necessary tools to develop themselves.
But the young mother of two is not one to sit around and throw her hands in the air; she is on a mission, she told the Sunday Stabroek, to ensure that her daughter is not short-changed. She might have made that pledge when she had to agree for doctors in Trinidad to remove both of her daughter’s eyes.
It is still a very painful memory for her, as she recalled that when Mekyla was four months old she and her husband Michael Belgrave noticed that there was “was redness in [the child’] eyes and it looked as if she was wearing contacts.”
Concerned, the parents took the baby to several eye specialists and some took money but could not diagnose what was wrong with the infant. The last doctor they visited informed them that he had never seen anything like it before, and referred them to Dr George Norton who gave them the diagnosis and recommended that they travel to Barbados for further medical treatment.
In the end they visited a Trinidadian hospital with assistance from the government, and immediately upon examining the child the doctor informed them that the left eye had to be removed to save her life. Just about two weeks later, the right eye also had to be removed. Almost eight years later Celeste still tears up when remembering her experience as she said it was the hardest thing as parents she and husband have had to do, and that when she gave birth to her daughter she thought all was well with her.
“I still can’t explain how I felt around that time, but it was very emotional…” she said as her voice broke and tears came to her eyes.
What made it worse for Celeste was the fact that the doctor informed her that the cancer was hereditary, and once one child had it other children could possibly also be affected in the same way; his recommendation was, therefore, that she have no more children.
“So you could imagine three years after discovering that, you were pregnant again,” Celeste said as she looked at her now four-year-old son who thankfully is free of cancer.
The mother related how fearful and anxious she had been, but she placed it in the hands of God with the help of her pastor who prayed with her regularly and encouraged her to remain strong, telling her it was not what the doctor said but God’s will that would determine the baby’s condition.
Celeste and baby Mekyla remained in Trinidad for almost a year after the operations – her husband was forced to return to Guyana because he was a student at the Cyril Potter College of Education (CPCE) – as the child had to make regular visits to the doctor. Even after they returned to Guyana they visited Trinidad every six months until they were referred to a local doctor, and after five years Mekyla was declared cancer free. Her mother said she still takes her to the doctor for a check-up from time to time.
Emotion
As her mother became emotional Mekyla quietly moved towards her and took a comfortable position on her lap.
“Mommy where the lady you talking to?” she asked, and when her mother directed her to this reporter, space had to be made for her to sit on my lap and with her head tucked into the curve of my arms she remained there for the duration of the interview.
As her mother spoke the child interrupted with pointed questions and comments and she made it clear that sometimes she hates school as the children are always asking her what is wrong with her.
“Sometimes I would tell them, but then they would go and tell the whole school and so sometimes I just don’t tell,” she said.
She said the school she attends – St Agnes Primary and the St Roses Unit for the Blind and Visually Impaired – is “a little bad sometimes” and because at times it is noisy she finds it difficult to manoeuvre.
But she does not allow her blindness to be a hindrance, since according to her she is special and “wonderfully made by God.” She wants to be a paediatrician when she grows up “because I love little children.” The child also boasted about helping her mother in the house and said up to the morning of the interview she helped with the dishes.
And while her brother does not understand what is wrong with her, he knows something is wrong and is very protective of his big sister. So much so Mekyla said with a smile, that she was the big sister when he was a baby, but “he is my big brother now.”
Celeste said in order to help her daughter she has completed an early childhood education course at the University of Guyana, and she also volunteers at the Ministry of Education in special education. She has also done online courses in the use of braille. She joined the Periwinkle cancer group and finds it very supportive, recalling that while she was in Trinidad she received a lot of assistance from the Cancer Society in that country, and they helped with foodstuff every two weeks. Before the Cancer Society in Guyana went defunct, Celeste said they were also members of that organization.
As far as Celeste is concerned, her daughter does not have a disability, and said that she had been informed that in years gone by blind children were sponsored by the government to go to Trinidad to attend a school for the blind, but this no longer happens. Her wish is that her daughter could be granted a scholarship to attend that school since she has relatives there.
She disclosed that she was hesitant about her daughter writing the Grade Two examination as she was at a disadvantage, because the papers are not set to assist children who are blind.
“They are supposed to set it in such a way that if they use a diagram children who are blind can at least feel it, but that is not being done,” she said.
But yet when her daughter wrote the Grade Two examination she placed third in her class, and at that time she was the only person in the class who could not see, and when she wrote the end of term exams last term she got over 70%. The mother said if the Grade Four examination paper is not set to facilitate her daughter’s blindness, then she would not allow her to write the examination:
“It would not make sense and I am appealing to the Ministry of Education to get this done because if we as parents with children with special needs don’t speak up then our children would suffer.”
She does not blame the ministry, as she feels that the school is not informing the ministry about how many children with blindness are enrolled, so they can request the specially set exam papers. She praised the work of the teachers at the unit, who she said need teaching assistants to assist in taking the children to the washroom or attending to their other needs. She said the teachers really try to make a difference, but they do not get the necessary support at the St Agnes school.
