According to statistics, there is one child with cerebral palsy in every 500 newborns in China today, and children with cerebral palsy in China are growing rapidly at a rate of 46,000 per year, and these figures represent that more and more families are experiencing such pain. Because more than 70% of children with cerebral palsy live in poor areas, many children face medical and family abandonment. One day at the end of March 2019, we visited a child with cerebral palsy that we met in a free clinic, Su Mao.
Su Mao is fifteen years old and can't speak.
In fact, he will not have a lot of things: he can't dress; he can't walk; he can't eat and drink by himself; he can't go to the toilet; he can't read and play games like other children his age...
But he would laugh, always with a smile on his face, and he would smile when we saw him, and he would laugh when we left.
Su Mao's body was frozen in the appearance of four or five years old, and we had no way of knowing what his spiritual world was, because his intelligence level was only two or three years old and could not be expressed. Perhaps we have all fantasized countless times about staying in the joy of childhood, but Su Mao, who really stayed in childhood, has never had joy, and all this seems to have been frozen from the moment he was born.
Su Mao was born in 2004 in a farming family in Shrimp Town, Zunyi City, Guizhou Province, and when he was born, his family was very happy about the boy's arrival, and he did not feel that the child was any different. But gradually, it was found that the child's growth and development were somewhat slow, some changes that should have occurred at a certain stage, but he did not see it for a long time, he would not crawl around, nor would he hum, at that time, the family still felt that maybe the child was slow to learn, and it would always come, just wait.
Until Su Mao was more than two years old, he still did not learn to speak, let alone walk, and at this time, the family was finally in a bit of a hurry. Therefore, mom and dad took Xiao Sumao to the hospital in the city for examination, and after taking the film of the brain, the doctor just said that the child was congenital cerebral palsy and could not be treated, and the only thing he could do was to go home, try his best to help him do rehabilitation, and wait...
Such a blow, the family can not understand and accept, but also at a loss, the first to be defeated is Su Mao's mother. For her, marrying into this family that was already living in poverty should have done some mental struggles at that time, but now she knows that the children will never get better, perhaps not knowing where the future of the family is, so she does not quit. Escape is everyone's most instinctive choice.
After leaving for half a year, perhaps it was still attached to the family and the child, or perhaps for some reason, Su Mao's mother returned, and soon after, Su Mao's younger brother was born. For this family, it is not easy to support two children, so the couple and other relatives and fellow villagers go to Zhejiang to work together, compared to the barren land and mountain villages here, the rapidly growing cities and factories are a better way out for them. On the days when the couple went out to work, the brothers were left to their grandparents to take with them.
However, the family's life, like Su Mao's body, has not changed much. When Su Mao was more than four years old, his parents took him to Zunyi Medical College again for examination, hoping that a miracle would happen, but the miracle did not happen. What happened was only a more gloomy reality, and Su Mao's mother once again chose to leave, a complete and resolute departure.
At that time, the couple was still working in Zhejiang, and the last message that Su Mao's father received was: "Can you give me some money, I will go to take a bath, you go back to make a meal and wait for me." But he didn't wait for his wife to return, and Su Mao and his brother couldn't wait to come back to their mother. Selfless love is not something that everyone can do.
Grandma sat by the kitchen stove with Su Mao in her arms, and when we went, Grandma was feeding Su Mao breakfast, and my brother ran to another room with a bowl to watch cartoons. Su Mao's father and grandfather rushed out to work before they had time to eat breakfast in the morning, and there were only three grandchildren in the family. We sat down by the fire and talked to Grandma about Su Mao.com.
In Zunyi in April, light rain will fall at some point, and the house is always cold and wet. The house the family now lives in, which Su Mao's aunt and other relatives helped to buy together, only moved in from the rented place more than a year ago.
It was a twenty-year-old house, with a family living on each floor, a faint light sent into the building from the window of the patio, the narrow steps spiraling up the patio, which was by no means a place for children to chase and play, and the end of the staircase next to the patio was a low wall, and when we looked down from above, we all thought in unison. Such buildings are next to each other, with only an alley of about a meter in the middle, and no matter where the windows are facing, the house never welcomes sunlight.
"She's so bad for both kids!" Grandma told us in dialect about the child's mother before, although we can't fully understand it, but we can also feel the strange resentment in her heart from her tone, the child lost her mother's love at a young age, and grandma is their biggest reliance.
The younger brother, who had eaten breakfast, came to help Grandma feed his brother fried rice. When eating, Su Mao would often drop or spit out the rice, and in order to avoid wetting the clothes, Grandma sewed more than a dozen thick bibs with waste cloth.
Grandma said that the bib should be kept every day, and it should be changed two or three times a day, because it is wet here, and it is difficult to dry the bib that is washed clean, so it is necessary to prepare a lot. I told grandma that there was now that kind of plastic bib, which was very well taken care of, and Grandma asked, "That must be very expensive."
Usually, when he finishes his homework, his younger brother will always help his grandmother take care of his brother, and he will also take out toys to play with him. Many times, the younger brother is like an older brother, he will feed the older brother, play with him, and also help him to move slowly in the corridor. Su Mao would also hear his brother call him "brother", although he didn't know what such a title meant.
In fact, Su Mao was sometimes able to understand that his family was talking to him, but most of the time, he could only observe everything around him in his own world, perhaps he had never thought about it, but it did not prevent him from feeling what his family had done for him.
More than ten years of grandma's careful care, his brother playing with him with a smile, and the occasional appearance of grandpa and dad, I don't know what kind of story these pictures will leave in his heart, maybe it doesn't matter, because the regrets and troubles of the past and the future will not remain in his heart.
Hearing that we had come to visit the children, Su Mao's father hurried back. Talking about the experience of more than ten years, Su Mao's illness, the departure of his wife, the hardships of going out to work, the uncertainty of the future, etc., I can't see too many fluctuations in his eyes, I can only see the lime powder on his hair and clothes, and the he has worn out pants.
This tall, confused Guizhou Hanzi knows what he is experiencing, in addition to a child who needs someone to take care of him because of cerebral palsy, he also has a healthy son who is in elementary school, and his parents are getting older day by day, he needs to carry the pressure, he also needs to be optimistic, he needs to let go of the past. But he had no intentions or know about the future of the child and the family.
In the chat with Su Mao's father, he can still feel some of the shortcomings in his heart, even if the broken family has not burned out all his hopes, but the cruelty of reality still needs to be faced when he opens his eyes every morning.
At that time, in order to let Su Mao have a good treatment and recovery environment, but also in order to let the younger son have a good learning environment, with the help of relatives and friends around him, he borrowed money to buy the current house, but also because he moved to the town, they lost the welfare of poor households, rice, oil, charcoal for heating in winter and the renovation of old houses, these subsidies are not, this is a knot in Su Dad's heart, but there is nowhere to find a solution.
During the conversation, a phone call came, sue dad hurriedly ate a bite of food to go out, we decided to go to the place where he worked together to see. In fact, Su Mao's father does not have a fixed workplace, his current job is to move cement, what time and place is a temporary notice, the only certainty is that he can only do these manual work.
Today a prefabricated board factory outside the town came with a truckload of cement, which needed him and another fellow villager to move, the car stopped, he climbed to the roof of the car more than two meters high, and the protection of the body was only a dust mask.
Su Mao's father told us that the biggest problem of such work is not dust and hard work, it is uncertain, and therefore there is no stable income, which is only about two thousand yuan a month. After moving to the town, there is no land to plant, Su Mao's grandfather also had to go to the town to find work to do, the monthly income is more than a thousand yuan, the income of two people three thousand yuan is only enough for the daily expenses of a family of five, Su Mao's rehabilitation treatment can not be talked about, and the repayment of the foreign debt of buying a house is far away.
Before leaving Su Mao's house, I asked Su Mao's brother, "When is your birthday?" He smiled and said he didn't know, I still didn't believe it, I asked dad, Su Dad also laughed and said he didn't remember, and then took out the household registration book to show me, he said, the two children have never had a birthday. I didn't know what to say for a moment, so I smiled and touched my brother's head, and regretted asking such a question.
Su Mao is not the first child to lose his family due to congenital cerebral palsy, nor will he be the last.
In the process of zunyi shrimp town serious illness free clinic, we have encountered too many children who have been abandoned by their parents because of the disease, the departure of the father or mother has caused them far more harm than the pain, and there are many children with cerebral palsy like Su Mao who cannot feel this pain.
But they still have the company of their families, without their father or mother, grandparents are their last support, but for the elderly, the worry is that they do not know what kind of hope their aging bodies can bring to their children.
Children with cerebral palsy are already a very large group in our daily lives, and more than one-third of the zunyi free clinics in Guizhou that ended not long ago are children with cerebral palsy or other brain diseases. They are inseparable from the care of their families all the time, daily life should be meticulous, but also vigilant against epilepsy that may occur, and it is not an easy task to persist for many years.
The phenomenon of family breakdown due to the child's illness has become common, and it has also led to insufficient financial capacity to support the child's treatment and rehabilitation.
For those children with cerebral palsy, although it cannot be completely cured, through professional rehabilitation training, it can still help children restore some physical functions and intelligence levels, and in the long run, it can also relatively reduce the burden on the family. But in poor areas, many families can't know how to help their children recover at home, and they don't have the money to go to professional rehabilitation centers for rehabilitation, and the fate of these children is often abandoned.
No matter what kind of body we come to this world with, living is always the purpose we try our best to achieve, although everyone's pursuit of life is different, although it is not easy, but living is not only the continuation of our own life, but also the continuation of love, at least we will not live alone.
"The important thing is not to be cured, but to live with the pain." The French philosopher Camus wrote. Compared to the final result, hope is ultimately what we are working on. (Photo: Yan Fei Text Editor: Great Grizzly Bear Photography Studio Dahe Native)