#渐冻症##爱情婚姻##器官捐赠##环游中国##乞讨##怒放生命极限#
This is the 3,730th real story we have told
It is said that children are the bond that holds my parents together, but ironically, my parents divorced a little more than a month after I was born, and my mother never appeared in my life again.
When I'm a little older, I can walk, but I walk like a duck, swinging and swinging, and always wrestling. I asked my grandmother, "Grandma, why am I different from others?"
When I was 5-6 years old, my grandparents took me to get a needle, I was crying in pain, my grandmother wiped my tears while wiping my own tears, and she didn't forget to coax me in her mouth: "The baby doesn't cry, it's good if you get the needle!"
But I pricked a lot of needles, but the disease did not improve. Some doctors even asserted: "This baby will not live to be 10 years old!" but my grandparents always said: "Zhang Wei, you will definitely live!"
Over the years, I have experienced many critical illnesses, and I have long seen through life and death. But now, I wish I could live a little longer, a little longer, and watch my son grow up a little longer. To that end, I will do my best.
(Unyielding Me)
My name is Zhang Wei, and I was born in 1990 in a farming family in Heze, Shandong. Since I was a child, I knew that our family was very poor, my grandfather was so poor that my grandfather needed to go up and down to the fields, and my grandmother needed to break one penny into two cents to maintain the family's livelihood.
I also know that the root cause of our family's poverty is not because my grandfather is not hardworking, nor because my grandmother can't calculate how to live, but because I have been weak and sick since I was a child.
When I was 5-6 years old, my legs began to get thinner, and my grandfather took me to the provincial hospital for a check-up. The doctor said I had muscular dystrophy (what is now known as ALS) and needed needles every day.
When needles of different lengths pierced my delicate head, face, hands, and legs deep and shallow, I cried in pain. My grandmother hugged me tightly and wiped my tears from my tears.
(This is my grandmother)
It is said that the children of the poor are sensible. Indeed, I am sick and poor, and I am more sensible. I was reluctant to shed tears for my grandmother, and since then, every time I get a needle, no matter how painful it is, I have endured it.
But even so, the doctor said that my condition deteriorated rapidly and that I probably didn't live to be 10 years old.
When I was 6 years old, I went to school. The school is not far from home, just 1000 meters, but I walk like a duck and fall from time to time, so it is not easy to get to school safely.
The sunny day was fine, but when it rained, my grandfather or grandmother had to take me to school. I remember one time when it was raining, my grandfather went out to run errands, and my grandmother took me to school.
It was raining heavily that day, and I was carrying an umbrella and my grandmother was carrying me, walking one foot deep and one foot shallow. Suddenly, she fell to the ground and threw out the umbrella in my hand, but I was firmly held to my back by my grandmother's hands, and the rain instantly drenched me and my grandmother into soup.
That night, I learned that my grandmother's knee was bleeding from a fall.
Barely finished the first grade, and I stopped going to school. I don't want my grandma to get hurt by sending me to school, and I don't want my grandparents to worry about my 100 yuan a semester tuition.
More importantly, I think that I won't live to be 10 years old anyway, so what's the use of going to school for a few more years? It's better to lighten the burden on my grandparents and make me a little less troublesome.
(I can't walk upright)
Under the care of my grandparents, I survived the age of 10 safely, but my grandfather fell ill and died when I was 11 years old.
When I was dying, he took my hand and said with great difficulty, "You must live well!" I wailed and cried, holding my grandfather's hand to prevent people from putting him in the coffin. Grandma hugged me tightly: "Child, let grandpa go with peace of mind!"
I don't know if my grandmother was sad or not, but the morning after my grandfather died, her hair turned white.
Grandpa is gone, the pillars of the family are gone, and grandma has to take over the burden of grandpa, go to the fields and fields, and be busy at home and abroad. I feel sorry for my grandmother, when she is not at home, she squats and moves her legs little by little, sweeps the floor, wipes the table, and does what she can.
At that time, I especially wanted to earn some money and reduce the pressure on my grandmother.
At this time, a disabled person came to me and said that there was an art troupe for the disabled, and they could learn to sing and perform to earn money.
I briefly talked to my grandmother and left with him. Unexpectedly, he took me to a gang specializing in begging, and it was full of disabled people.
(175 cm me, only a few dozen pounds)
During the day, they sent people to take us to the overpass and under the bridge...... All kinds of places with a large flow of people. Then, put a broken bowl in front of us, and when someone passes by, ask us to ask someone for money. Everyone has a task, and if they complete it, they will be able to eat enough, and if they can't complete it, they will not be given food.
I was hungry a lot. This made me, who was already very thin, even thinner. Once, I took advantage of their inattention, and I sneaked out, but before I could run home, I was tricked into another place to beg, and then ran away and was deceived again.
When I was deceived for the third time, I was fourteen or fifteen years old, and I weighed only fifty or sixty pounds, and I had no strength to run anymore.
I was sent to the flyover, where I lay dying. At this moment, a wheelchair stopped in front of me. I looked up, and an old woman was looking at me with a kind face.
Behind her, there was an aunt: "You give this child 100 yuan and let him buy something to eat, he is too thin." The old woman said.
The aunt put 100 yuan in the basin in front of me. I didn't touch the 100 yuan, I just watched my grandmother shed tears. The old grandmother sighed and let the aunt behind her push her away.
(Although life is hard, I still love to laugh)
Unexpectedly, the police came after a while, and I was rescued. Later, I learned that it was the grandmother who called the police, and she told the police that the child was crying sadly and that he had been deceived at first glance.
I finally got home. Seeing me, who was so thin that I was not in human shape, my grandmother's heart ached. She cried and wiped my body, applied medicine, changed clothes, recuperated my body every day, and told me not to run around anymore.
Just as my health was getting better, my grandmother fell ill with a complication caused by diabetes. At first, she was able to walk on the ground, but later, she couldn't even go to the ground, so she could only lie in bed all day, and I took care of her, and our grandparents and grandchildren depended on each other.
My aunt bought food for us every week, my father, who did not have a high income, secretly sent me and my grandmother a little living expenses, and the village cadres also applied for a monthly subsistence allowance of 300 yuan for us, so that my grandmother and I were able to continue our lives.
Every day, I water my grandmother, feed me, wipe my body, and change diapers on time...... I only hope that my grandmother can live more comfortably and live longer under my careful care, because she is the only person who loves me in the world.
(This is my grandfather)
But my grandmother has only been with me for less than 7 years. Before leaving, her waist, hips, hands and feet had ulcerated. Like my grandfather, she was most at ease with me, and she knew that as soon as she left, there would be no one around me. She told me: "Child, no matter how difficult it is, you must live well!"
My grandmother is gone, taking with me the last bit of attachment to the world.
I feel that the world is too unfair and cruel to me, why did I give birth, why did I give birth to a weak and sickly body, why did I have the best grandparents in the world, but I wanted to take them away from me?
I couldn't eat, I couldn't sleep, and I committed suicide several times, but I was rescued.
Later, my aunt took me to the hospital. The doctor said that I had depression and obsessive-compulsive disorder and prescribed me a lot of medication. Before leaving, he told me that no matter how much medicine you take, it is useless, you have to come out on your own.
But how am I going to get out? I'm a wretch, no one likes me except my grandparents, no one loves me. They let me live well when they left, but how can I live well?
(How am I going to live well?)
In desperation, I saw a TV show. In the show, Hochul without limbs is giving a speech: you will have good days and you will have bad days, but you will always learn more or something newer. Being brave is not about not being afraid, but about being able to persevere when you are afraid......
I was deeply touched by how sunny Hochul looked and how inspirational he lived.
It's true that I can't get up and walk, but I can move my legs, and I'm weak, but my hands can do a lot of things. I'm lucky compared to him. What reason should I not live well?
In the summer, a homeless boy came to the village, his clothes were in tatters, and his knees were worn out, and he said that he had been abandoned by his parents.
I sympathized with him and cooked him a bowl of noodles and an egg. The homeless child said that he had traveled a lot and seen a lot of scenery.
I had an idea, can I also carry the expectations of my grandparents, with my still intact eyes, unsound hands, and legs that cannot stand up, to feel the world and measure the great rivers and mountains of the motherland instead of them?
(I've had a lot of help in the past)
Since then, I have embarked on a journey to visit the great rivers and mountains of the motherland.
Because I didn't have to be entangled, I would stay for a few days at every place I went, or set up a stall, or beg, to prepare for the next stop. In this way, I traveled almost all of China.
In 2017, I came to Xi'an and decided to stay here for a while.
I rented a house near the Big Wild Goose Pagoda Park, then wholesaled some things, and often went to set up a stall near the train station. At that time, it was about September to October, and it was already a little cool in Xi'an in the morning and evening.
Due to the long period of displacement, I became ill and had a fever for seven days and seven nights. Caring people set up a group for me and asked people for help in the group.
A lady named Meng Mian learned about my situation in the group, so she came to see me with many caring people and brought me fried rice.
They saw that the conditions of my accommodation were really poor and wanted to help me change my accommodation. But I was so sick that at 175 centimeters, I weighed only 45 pounds. As a result, many landlords are reluctant to rent to me, fearing that I will die in the house.
(This is my Meng Mian's mother)
Ms. Meng Mian took me over to take care of me. She buys me medicine, cooks, washes my clothes, and wipes my body every day...... About a little over 1 month later, I cried and called her mother, because I could feel that she really hurt me and thought I was hurting as her son.
At this time, the landlord finally agreed to "rent" the house to me without charging rent. In the spring of 2018, the doctor said that my condition was out of control and that I would probably not live to be 30 years old, and I was desperate.
Meng Mian's mother knew that I liked to climb mountains, so she took me to climb Cuihua Mountain in Xi'an. But I was weak and didn't make it the first time.
My mom encouraged me not to give up, and a few days later, she took me to climb again, and this time, I finally climbed up. I also regained my confidence that I could do something meaningful.
Because every year in June, it is World ALS Day. After obtaining the consent of Meng Mian's mother, I organized an activity with a brother from the Xi'an TX public welfare organization and the Beijing News, and on June 17, we went to climb Mount Tai to call for more people to pay attention to ALS people.
(I climbed Mount Tai)
On that day, I wore gloves and walked step by step with my hands, Meng Mian's mother was behind me with tears in her eyes, and some caring people were always by my side to cheer me up...... It took me nearly 12 hours to finally climb to the South Heavenly Gate.
On the top of the mountain, Meng Mian's mother carried me on her back. At that moment, I felt that the sky and the setting sun were so close that it seemed that I could reach out and touch it.
I've always been afraid of heights, but I didn't feel scared at all. I only feel a vigorous force stirring in my heart: I don't want to be frozen, as long as I live for one day, I will never admit defeat!
Later, I climbed Mount Hua, Mount Song, and the Great Wall......
In October, my body failed again. I don't know if I'll be able to survive this time, but I want to give back to the society when I think of the gifts I have received from so many caring people.
Someone once said that my eyes were beautiful, and the doctor said that my internal organs could still be used, so I signed an organ donation agreement.
I think that if one day I really can't bear it, I hope that someone can see through my eyes, through one of my organs, to continue my life, and I hope that my body can provide some research value for the medicine of ALS in China.
(My mom is standing on the top of the hill with her back on her back)
When the agreement was signed, Meng Mian's mother kept crying, and she was reluctant to let me go. The ancient Chinese tradition is to settle in the ground, but I think that when people die, it is useless, if you can give back to this world full of love when you are dying, it is very good!
Unexpectedly, this organ donation agreement brought me an unexpected person. After the organ donation agreement was reported, many people saw the news. A girl who works in Liupan Shuihua saw this news and was very moved, and she wanted to donate money to me.
After many twists and turns, she finally added my contact information, transferred me 1,000 yuan, and told me that she would come to Xi'an to see me when she had time. I didn't take it seriously. But at the end of September, she suddenly messaged me that she and a friend were going to fly from Liupanshui to see me.
I was so excited that I pinched and waited for them downstairs in the rental room. The first thing she said when she saw me was, "You're the same as you were reported." ”
In the evening, I took them to Meng Mian's mother's house to eat mutton steamed buns, and after eating, they said that they were going to stay in a hotel, and I said, "If you don't dislike it, go to my residence, and I will stay at my godmother's house." ”
(I lie on my stomach on the bed and sign the organ donation agreement)
They agreed, and I sent them there. After arriving at my residence, she sighed with emotion: "I didn't expect your house to be so clean, like a girl's room." ”
Later, she often came to Xi'an to see me. For about a year and a half, I developed other feelings for her. But I didn't dare to tell her, for fear that she would reject me if she found out, and even take away the opportunity to be my sister.
Until that day, she pushed me out to set up a stall. When passing by a bridal shop, a couple was taking wedding photos.
I watched with envy, walked a long way, and looked back frequently. She asked me, "Girl, do you want to take wedding photos?"
I looked longing: "Isn't it a pleasure to take wedding photos? I haven't taken them, and the people I talked to before didn't make it." ”
She said to me very seriously, "I won't let you have regrets in your life." I plucked up the courage to ask her, "Will you marry the girl or marry me?"
(She and her friends came to Xi'an to see me)
She didn't answer me, just silently pushed me forward. My heart sank instantly: yes, she was right not to agree, who wants to tie their lives to someone who could die at any moment?
I think she was silent for at least a century, until she was about to reach her destination, she said solemnly: "Zhang Wei, I promise you, as long as you live well, you live for one day, I will be your wife for one day, and I will be your wife for one year if you live for one year." ”
This sentence was like a heavenly sound, and my tears flowed down at once.
I was abandoned by my mother when I was a child, and my father only provided me with limited living expenses for a limited time. But I first had grandparents who loved me deeply, and then I met Meng Mian's mother, who treated me like a son, and now, I will have a lover again. God treats me well, and I am fortunate to be lucky.
Subsequently, she told her parents about her decision. But her parents were adamantly opposed. Her father said, "You care about him, love him, take care of him, it's all right, but marrying him, it's not okay!"
(My wife and I are in Xi'an)
Seriously, her parents' opposition, and I expected that if I had a daughter, I would definitely not want her to marry someone like me.
I asked her to call her parents and say that I agreed to be their son and wanted to visit their second elder in Bijie, Guizhou as a son. Unexpectedly, when her parents saw me, they were distressed, especially her mother, who wiped her tears when they looked at me.
During the meal, her father thought that I could not understand Guizhou dialect, so he asked her in Guizhou: "We have all read his report, he is a good boy, but his illness will not be cured, if you marry him, he will leave at any time, how will you live in the future?"
She told her father: "If he lives for one day, I will be his wife for one day, and if he lives for one year, I will be his wife for one year." ”
Before leaving, her father took my hand: "My daughter said that if she wants to marry you, she must have feelings for you, and we don't have to stop you, it's just that you have to make sure you live, right?"
I felt a burst of ecstasy in my heart and said: "Over the years, I have experienced countless critical illnesses, and I have carried them all over, I don't want to die, and God can't take me away, please give me a chance, I will definitely live well." ”
(Wedding photo of me and my favorite wife)
On September 20, 2020, with the help of many caring people and my mother, Meng Mian, I held a wedding with her in the Xi'an Big Wild Goose Pagoda Scenic Area, and she became my wife.
Married life is as happy and harmonious as I imagined. We returned from Xi'an to my hometown of Shandong.
But soon after we got married, my wife asked me a problem, she wanted to have a child. This is something I never thought about.
Because, during the premarital physical examination, the doctor said that I was in the advanced stage of ALS, the tadpoles were almost inactive, and most importantly, I was worried that there would be hereditary.
The wife insisted: "You keep a child for me, so that if one day, you fall asleep, or...... I can at least have a thought. ”
Her words made me burst into tears again. The thought of me leaving, leaving her alone, makes my heart ache.
But I have to make sure that I have healthy children. I first had a genetic test in Xi'an, and then I went to Jinan for a genetic test. The results all showed that I did not have ALS gene strand and no mutations.
I went to the hospital again to check on the tadpoles. At first, the doctor didn't want to do this test for me, fearing that the result would not be good and I would be disappointed, but I persisted. The doctor prescribed me some medicine to take and told me to check it out in 1 month.
(My wife and I are the most cherished baby)
Thankfully, my baby tadpoles have a 1% survival rate. The wife got pregnant smoothly. On September 2, 2023, my son Enbao was born safely, and the mother and child are safe.
Now, my son Enbao is almost half a year old, he is very naughty and cute, we are a family of three, living a simple and ordinary life, but I feel rich in the world.
Along the way, I have endured a lot of hardships, but I have also been reaping happiness and touching.
It is always said that when God closes a door for you, he will also open a window for you.
That's true. Although God gave me a weak body, gave me a native family that my mother didn't hurt and my father couldn't accompany, it also gave me the best grandparents in the world, and at the same time, Meng Mian's mother made up for my lack of maternal love, gave me the best wife, my favorite son, and many caring people who helped me.
Therefore, I am unlucky, but I am lucky.
Now, I only hope that I can live a little longer, a little longer, accompany my son to grow up a little more, see more of this world full of kindness and love, pass on some positive energy, and do something useful to society.
(Welcome to pay attention to the protagonist of this article "Zhang Wei")
[Dictation: Zhang Wei]
[Editor: Xu Xiaoqin (Double Mermaid)]
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