September 21, 18:31 at home where "Pipipi" and "Wahaha" echo

"I think the happiest thing is to be able to laugh every day at home with the sound of the kokyu (beep-beep-beep) and the sound of the machine,"

wrote a 5th grade girl. It's a composition.

I expressed the laughter of the family that echoes with the sound of the machine that keeps the bedridden sister alive.

She used to feel lonely behind her mother who was busy taking care of her, but now she is desperately trying to get in front of her.

(Saga Broadcasting Station reporter Yuko Watanabe)

Sisters who grew up like twins, suddenly separated one day

This is Hanon Tsukahara from Saga City, who wrote the composition.

Her older sister, Mei, is one year older.

She grew up to be a close twin sister who went everywhere with her.

However, five years ago, something strange happened to her older sister, Mei-chan.

One day when she had a high fever that didn't go away, she was taken to the hospital by an ambulance.

She was diagnosed with "autoimmune-mediated encephalitis/encephalopathy" after many tests.

It was a serious disease in which the immune system reacted abnormally and attacked the brain.

She was hospitalized for a long time, with her sister and mother at the hospital, and Hanon, her younger brother, and her father living separately at home.

Her mother, Emiri, stayed at the hospital and took care of Mei constantly, but she was worried about the family she had left behind.

Hanon was 6 years old at the time.

She was often left at her grandparents' house, and at night she cried because she was lonely.

Emiri decided to start her exchange notebook to ease her loneliness.

The day after the annual "Balloon Festa" in Saga City.

Emiri wrote that she could see many hot air balloons from the hospital window, and she encouraged her.

"When you miss your mother, look at the sky! Under the same sky, there are mothers and sisters!"

In response, Hanon replied with a picture of a hot air balloon and a hiragana letter that she had just learned, saying, "I love you."

A mother and daughter who finally try to communicate with each other through a notebook.

Looking back on those days, Emiri says:

Emiri

: There wasn't a day when I didn't think about how she was doing (even while I was in the hospital). I feel like I want to be divided into three parts. It's important. I want to be with everyone somehow, but right now I can't.

Around-the-clock medical care started

About half a year after hospitalization.

Mei has been discharged from the hospital and has returned home with her mother.

However, her life has changed completely.

Mei became bedridden and required nine types of medical care.

The speed of the gastroinjection, in which nutrition is injected through a tube connected to Mei's stomach, needs to be adjusted according to Mei's physical condition.

A ventilator sounds an alarm when breathing is disturbed or the device comes off, and it is necessary to respond each time.

At a time when there were not many facilities to take care of children with medical care, Emiri worked hard to remember the various medical care that her nurses taught her and supported Mei.

Hanon was also concerned about her sister's physical condition, so she started checking the numbers displayed on the machine's monitor.

She has just entered elementary school and she has just learned her numbers.

Even so, she naturally memorized what was displayed on the monitor, and when the numbers got worse, she told her mother before the machine sounded.

"Don't bother me"

Every day, everything in the home revolves around the older sister.

Emiri rarely attended Hanon's school events, and even when she caught a cold, she couldn't take her to the hospital right away.

When she said she wanted to go out with her friends, and when she said she wanted to take piano lessons, I couldn't give her what she wanted.

When she asked Hanon how she felt in her home at the time, she said:

Hanon-chan

: “(Mama) doesn’t smile like she used to.

Emiri, on the other hand, felt that she was forcing Hanon to put up with her, even though she tried to be as natural as possible.

Emiri- san:

"I've made a lot of money (for Hanon-chan). After all, you can see that mommy has to do this and this and this. That's why I'm going to put up with this for myself."

Loneliness felt by “siblings”

The number of children requiring medical care is increasing due to advances in medical care, and it is estimated that there are approximately 20,000 children nationwide.

As parents are overwhelmed with caring for children in their care, how to provide emotional care for their brothers and sisters, so-called "siblings," is also an issue.

In order to investigate the living conditions of the families of children requiring medical care, the government conducted a survey and compiled a report in March the year before.

Among them, about 60% of the 528 families with brothers and sisters answered that they felt that their siblings were stressed.

Siblings reported feelings of loneliness due to the lack of time spent with their parents, and earnest feelings about being restless at home.

"I want to go on a trip with my family. I want to take lessons, but I can't because I need my parents to pick me up

.

"

I have to go to my grandma's house. I'm so lonely. I hate it

.

" (From Survey Report on Living Conditions of Children in Special Care and Their Families)

“A place to melt the burden of the heart”

How can we ease the burden on our often overlooked “siblings”?

In May this year, a temporary care facility for children with medical care that opened in Saga City has a space where siblings can spend time.

It is a “family place” where parents and siblings can spend time while the child in care receives medical care from a nurse.

Many toys were lined up, and mothers and children were playing crazy.

The facility also holds events where families can interact with each other.

I decided to create horizontal ties in the family and create opportunities for siblings to get to know other children in the same situation.

Mother of a child in need of medical care:

“At home, I am busy caring for my child, and there are times when I don’t care about my siblings.

Junko Aramaki, who is the representative of the facility, was previously involved in pediatric medicine as a nurse.

Seeing that her family, who should have been happy to be discharged from the hospital after her treatment, was having a hard time at home, she decided to establish a temporary care facility.

She decided to go there to support not only the caregiver, but also the family, including siblings.

Ms. Junko Aramaki:

“Without any medical knowledge, I was suddenly handed over a caregiver child. However, I also felt

that caring for the family is also important.After

all, the most important thing is the connection between the parties.When you are in trouble, you can complain to each other, and you can play with your children without worrying about anything.A little bit of heart. I hope that it will be a place to dissolve the burden of

"I'm not alone" gives me emotional support

Hanon Tsukahara from Saga City, who has been feeling lonely, has also participated in these family exchange events.

Two years ago, I was invited by my mother, Emiri, to participate in an exchange event specially held by a temporary care facility.

There were many children in medical care, just like my sister.

I also met “siblings” like myself.

Eating sweets together, playing tag, and forgetting about the time, it is said that there was a change in his feelings.

Hanon wrote what she felt at that time in her school composition.

“I thought that I have many friends who are doing their best just like my sister! At the same time, I was able to meet many children like me who have sick siblings. It was embarrassing, but we got along naturally, laughed a lot, talked and played.It was a really fun time.I'm not the only one with a sick sister.I'm not alone. It made me feel like

Hanon-chan realized that she was not alone while interacting with children in the same situation.

In the essay, she also expressed her family time spent with her sister in this way.

“When my sister got sick, I had to endure a lot more. I cried a lot. Would I have been able to laugh now?I wonder if I would have been able to laugh if my sister was gone.I think that we

can laugh every day at home together with the sounds of the kokyu (beep, beep, beep, beep !)

I think I'm happy more than anything.When everyone laughs, my sister always smiles.Then everyone laughs again.I feel like my family has become more united than before. ."

Hanon

: I'm not the only one who has a sick child among my siblings, so there are many others, so I feel relieved.

Even if Mei is sick, I can be confident. It makes me feel like I'm not alone because I'm not there."

Hanon-chan, who had to put up with her sister suddenly getting sick.

Still, I look forward to the laughter that resonates at home now.

Her feeling that she is not alone is what keeps her going.

[Waiting for information] We are waiting for information

from children in medical care and their families, supporting medical and welfare personnel, childcare and educational personnel, etc. from the submission form below.

Child under medical care Submission form is here

Saga Broadcasting Station Reporter

Yuko Watanabe

Joined in 2020

Covering social issues surrounding children, including young people who find it difficult to live with their parents