A mother's statement of a child with a rare disease: Don't want the aura of God, just your ordinary

Tencent Parenting

2024-05-12 08:00Posted on the official account of Beijing Tencent Parenting

There is a romantic saying: every baby, before being born, is an angel in the sky, they lie on the clouds, carefully choose a mother for themselves.

Zou Yang is such a chosen mother. In her opinion, her son Manman must like her very, very much, so he will choose her and become her child.

"Because he has designated to come to me, he has to give up something."

For Manman, what he "gave up" may be the unbearable weight of life, and that is his health.

Soon after he was born, Zou Yang found that the coffee spots on his body were not only numerous, but also changing and growing, and at the age of 10 months, Man Man was diagnosed with neurofibromatosis, a rare disease with an incidence of only 5 per million.

From that moment on, Zou Yang embarked on the road of fighting neurofibromatosis, which was also a journey of wholeheartedly accompanying the child to grow up, establishing a relationship with the child, and rediscovering himself.

It's Mother's Day again, and Tencent Parenting invited Zou Yang to share her life story as a mother, hoping to pass on love and strength to thousands of mothers.

A mother's statement of a child with a rare disease: Don't want the aura of God, just your ordinary

Other children do addition, but he does subtraction

Neurofibromatosis is commonly known as "inexhaustible tumor" in the medical community, as long as the human nerve is everywhere, it is possible to grow a tumor, which is difficult to remove by surgery, and there is no specific drug for a long time.

Full of patients with neurofibromatosis type I who had solid tumors in multiple parts of his body. The entire right side of the face was visibly swollen due to the growth of the tumor, and the skull was also affected to some extent. The tumor enveloped the right optic nerve, causing his vision to deteriorate dramatically, and the tumor in his mouth severely affected his chewing and pronunciation.

When this rare disease was diagnosed, Man Man was less than a year old. However, the doctor gave a negative judgment, saying that he would probably not live to be three years old.

Zou Yang felt sad and lonely, she silently calculated in her heart: 365 times 3, but more than a thousand days is too short. This gave her a strong sense of crisis, other children are growing up to do addition, and a full life has just begun, but they are about to be forced to do subtraction and enter the countdown.

There is no way to change it, but to force yourself to accept it. So, Zou Yang really made a plan full of only three years old, taking him to the doctor, while trying to make him feel the greatest happiness and joy in his limited life.

Because in her opinion, if this prediction really comes true, in the limited life of the child, she can feel the greatest kindness of the world, "It is not in vain that you will be my child." ”

Later, Zou Yang lived an extremely emotionally divided life, excitedly like a chicken blood during the day, taking his children to see a doctor or go out to play, but often hiding and crying silently at night. The only thing she can do is to take one step at a time and not think about what to do in the future.

She began to record her child's growth in days, checking in on social media every ten days and setting off a small firework in her heart.

On his third birthday, Zou Yang breathed a sigh of relief after a long absence.

She said in a very firm tone: "If we cross this hurdle, there will be infinite possibilities in the future." ”

On the road where there is no choice, I look forward to the flowers blooming

For Zou Yang, optimism, humor, cheerfulness, and strength, all these beautiful qualities are not the result of her own choice, but the way she has to become.

Although fate threw her into the muddy swamp, she longed for flowers to bloom in the dark and barren predicament.

Every time he takes Man Man out on a trip, or even just wandering in the small garden, Zou Yang will carefully match his clothes, sometimes a backpack, sometimes a pair of sunglasses, sometimes clothes and pants of the same color.

Zou Yang felt, "Although you are sick, your family still values you very much, and you are still a very decent child outside." ”

After each medical visit, Zou Yang will take Manman out to play, Lego Center, Disney, the sea, the park, ...... Create one happy and unforgettable memory after another for him.

With the company and care of his mother, Manman has also grown into an optimistic and confident appearance "living up to expectations". In the face of other friends, he is not only not timid, but also has the amazing potential of "social cow", and can integrate into the team of play in his own way.

Zou Yang found that not only did Man Man not feel that he was any different from other children, but felt that he was very good and a little "blindly confident".

Many people will say, "His eyes are full of happiness, and his body is full of happiness and happiness", which makes Zou Yang very pleased.

"Don't want the aura of God, just your ordinary"

The theme song of the movie "I Am Not the God of Medicine" "As Long as Ordinary" sings the hearts of many patients and their families who are troubled by the disease.

Similar to the experience of the protagonist in the movie, the medication problem of neurofibromatosis patients is also a mountain that is difficult to climb.

At present, there is only one effective inhibitor of neurofibromatosis on the market, selumetinib, developed by AstraZeneca, which was approved in China in April 2023, marketed in China in September, and entered the national medical insurance list in January 2024.

Despite being included in the medical insurance, the price of selumetinib is still expensive: the price of 10mg/60 tablets has been reduced from 20,500 yuan to 11,187 yuan, and 22,560 yuan after the price reduction of 25mg/60 tablets.

Despite the huge financial pressure, Zou Yang still believes that the advent of this drug is a great joy, which has made Man Man go from "resigned to fate" to having a cure.

Over the years, Zou Yang's "easy to satisfy" has also been reflected in many aspects.

"When I watch him play with ordinary children, I'm already very content." She even sighed in her heart: "Today is another happy day!" ”

It is true that being an ordinary child seems ordinary to many people, but it is too difficult for Manman. He had to overcome all kinds of difficulties in order to live like an ordinary person for a moment.

On the one hand, Zou Yang accompanies the child to the greatest extent and protects the safety of the child.

On the other hand, she will try to make herself a shadow as much as possible, standing from a distance and watching. Not only rush to the child's side as soon as he needs help, but also give him plenty of space to not deprive him of the choice of independence in the future.

In the face of other children's unfriendly inquiries, Zou Yang told Manman: "You must learn to explain by yourself, learn to be relieved for yourself, and know how to resolve bad emotions."

Every mother has a lot to expect when her child is not born; When the child is sick, she only wants him to be ordinary.

Accompany your children to grow up and never give up on yourself

Zou Yang said frankly: "Manman ranks first in my life, and all the changes in my life trajectory are because of his changes. ”

In order to better accompany Manman to see a doctor and live, Zou Yang resigned from his lucrative job, spent all his savings, and became an older "gnawing old man".

When he was three years old, Zou Yang obtained a teaching certificate and worked as a kindergarten teacher in his kindergarten. Later, when Man Man entered primary school, Zou Yang continued to accompany him, setting up a desk at the back of the classroom to support a full sense of security.

This makes it emotionally difficult for many people to accept, feeling that she has completely given up her life for the sake of her children. And this point is probably the biggest misunderstanding of Zou Yang.

In her opinion, she did not give up on life, but moved steadily on different paths, constantly superimposing knowledge and skills. Whether it is to accompany Man Man to fight the disease together, or to devote himself to rare disease public welfare activities, it is not a bad choice.

"First of all, all my efforts are voluntary, and there is a good place in my character, I am a person who does love and love."

After joining the non-profit organization, Zou Yang met many people who were both capable and loving, many of whom were neurofibromatosis patients and their families. Zou Yang admires their efforts and recognizes his own shortcomings.

She likes to turn her shortcomings into her own driving force, and experience diverse life roles through different types of work. "I feel like I'm getting." Zou Yang said sincerely.

In this process, the little changes are the biggest source of surprise and fulfillment for her. Watching Man Man grow up day by day, feeling his optimism and friendliness made her happier than anything else.

End

The existence of Mother's Day is not premised on the greatness of maternal love; However, the establishment of Mother's Day has allowed mother's love to be recognized and demonstrated.

Zou Yang's full love is like this, moisturizing things silently when silent, but deafening when revealed. The time, energy, money, and mother's love that cannot be calculated...... In the 9 years of full growth, Zou Yang gave him everything he could.

Despite this, Man Man still can't play and live an ordinary life like ordinary children. But the bits and pieces of ordinary life are enough to fill the happiness of their whole family.

Zou Yang also hopes that he will be like Manman, with a low smile and a strong sense of happiness. Between the hardships and pains of life, find the direction that leads to the ordinary.

The fire of life has been ignited, and I hope that there will be no regrets and no regrets in this life.

Copyright Notice:This article is an exclusive manuscript of Tencent Parenting, and it is forbidden to be reprinted by the media without authorization, but you are welcome to forward it to your personal circle of friends.

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