I happened to pass by them after I attended the last Friday Mass in Quiapo. I was moved to pity finding such a cute little girl suffering from a grave illness. I always give something to poor people, whenever I can with what little earnings I make. Yet, I thought that I was never happier than when I gave some money to little Elyn May. I wanted to help in my own little way, for her medications.
I was very touched at the situation of this mother and child, that I decided to learn a little bit about their story. I found that they originally came from Capiz. Elyn May has a father who works in a farm as a day-laborer. She has five siblings. The family is very poor.
When Elyn May was born, the doctors thought that she will soon die. The baby could not breath properly because of her inborn defect in the mouth and nose. Her cleft palate was open, and every time she was breast fed, the milk dangerously lodged into her lungs, collapsing them. She was very very small and weak, and she developed pnuemonia-- a killer disease among newborns. As if all of these tragedies were not enough, the doctors announced that she had holoprosencephaly, a degenerative disease without cure.
A year ago, Aling Arlene brought her daughter to Manila, to seek better medical help. Through the help of neighbors and friends, they were able to raise money for a transportation cost. The father did not accompany them as he must work to support the other five children.
Once in Manila, Aling Arlene sought the help of charities, literally begging from strangers. Some people took pity and gave donations to give the child a fighting chance. But even the specialists in Manila could do nothing to cure the child. Indeed, her condition was degenerative--everything was going downhill. Only palliative care was offered by the doctors.
Elyn May is also severely epileptic. During my short interview with her mother, she had numerous episodes of seizures. A sign that she was having an attack was when she rolls her eyes upwards, her frail body stiffens, and her mouth begins to froth. Her mother never panics when such attacks occur. She just wipes her daughter's mouth with a towel and massages her little frail body.
I asked Aling Arlene if I can hold her child in my arms. It was a brave proposal because I knew it was a sort of personal invasion to her already small space. But she gladly agreed. I was surprised that Elyn May was so light, really just like a little baby, despite her being already four years old.
I was very touched at the situation of this mother and child, that I decided to learn a little bit about their story. I found that they originally came from Capiz. Elyn May has a father who works in a farm as a day-laborer. She has five siblings. The family is very poor.
When Elyn May was born, the doctors thought that she will soon die. The baby could not breath properly because of her inborn defect in the mouth and nose. Her cleft palate was open, and every time she was breast fed, the milk dangerously lodged into her lungs, collapsing them. She was very very small and weak, and she developed pnuemonia-- a killer disease among newborns. As if all of these tragedies were not enough, the doctors announced that she had holoprosencephaly, a degenerative disease without cure.
A year ago, Aling Arlene brought her daughter to Manila, to seek better medical help. Through the help of neighbors and friends, they were able to raise money for a transportation cost. The father did not accompany them as he must work to support the other five children.
Once in Manila, Aling Arlene sought the help of charities, literally begging from strangers. Some people took pity and gave donations to give the child a fighting chance. But even the specialists in Manila could do nothing to cure the child. Indeed, her condition was degenerative--everything was going downhill. Only palliative care was offered by the doctors.
Elyn May is also severely epileptic. During my short interview with her mother, she had numerous episodes of seizures. A sign that she was having an attack was when she rolls her eyes upwards, her frail body stiffens, and her mouth begins to froth. Her mother never panics when such attacks occur. She just wipes her daughter's mouth with a towel and massages her little frail body.
I asked Aling Arlene if I can hold her child in my arms. It was a brave proposal because I knew it was a sort of personal invasion to her already small space. But she gladly agreed. I was surprised that Elyn May was so light, really just like a little baby, despite her being already four years old.
She has a protruding head, a cleft lip and palate, and-- I noticed, she didn't have a nose. She was breathing through her mouth. A little thin hose is inserted in a little opening in a hole in her missing nose. She was being fed through the tube that goes all the way to her little stomach.
While holding her tenderly in my arms, I began talking with her, telling her how pretty and brave she was. Yet, I know her damaged brain could not understand me and her surroundings. Her hands were so tender and frail, her head so small. I found that she was paralyzed. She could not move her hands, feet, and head. The only sign that she was still living was her labored breathing, and her ever open eyes--her small eyeballs sometimes moving from side to side.
The doctors told me to be ready because anytime, she might die" says Aling Arlene. Yet, looking through Elyn May's eyes, I could see a determination to survive. I could not understand it, but I felt it.
Meantime, a few people fresh from the friday Mass were already beginning to flock to see the little child. Some of them gave 20, 50, and one 100. A woman gave a glimpse, touched her purse, but walked away. I knew that she wanted to give, only she may not have the money that time. I was glad that many people still have hearts of gold to reach out for the poor.
It was already getting dark, and I had to bid goodbye to my new-found friends--Aling Arlene and Elyn May. Aling Arlene was teary-eyed that many people shared something to them. I knew she had shed many tears before, and more in the future. I could see her determination to let her child live. She had not slept for whole nights, eschewed personal needs as luxury, and must indefinitely withhold grief, to give way to the needs of her beloved daughter.
While holding her tenderly in my arms, I began talking with her, telling her how pretty and brave she was. Yet, I know her damaged brain could not understand me and her surroundings. Her hands were so tender and frail, her head so small. I found that she was paralyzed. She could not move her hands, feet, and head. The only sign that she was still living was her labored breathing, and her ever open eyes--her small eyeballs sometimes moving from side to side.
The doctors told me to be ready because anytime, she might die" says Aling Arlene. Yet, looking through Elyn May's eyes, I could see a determination to survive. I could not understand it, but I felt it.
Meantime, a few people fresh from the friday Mass were already beginning to flock to see the little child. Some of them gave 20, 50, and one 100. A woman gave a glimpse, touched her purse, but walked away. I knew that she wanted to give, only she may not have the money that time. I was glad that many people still have hearts of gold to reach out for the poor.
It was already getting dark, and I had to bid goodbye to my new-found friends--Aling Arlene and Elyn May. Aling Arlene was teary-eyed that many people shared something to them. I knew she had shed many tears before, and more in the future. I could see her determination to let her child live. She had not slept for whole nights, eschewed personal needs as luxury, and must indefinitely withhold grief, to give way to the needs of her beloved daughter.
I can understand her loneliness. And I knew she needs our compassion. But for me Aling Arlene is a true tragic heroine, for only she knows the special agony and sufferings exclusively reserved for mothers of terminally ill children.
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