Days spent with my daughter who has a rare disease 【Happy Science Faith Experience】

My newborn daughter had a rare disease—.
That was more than enough reason to think, "I am unhappy."

Living each day as if in the depths of despair...

What saved me from such days was the encounter with a book of Buddhist truth.

Today, I would like to share that story.

On February 24, 1989, I gave birth to my second child, C.
It's a girl.

Perhaps it was around a month and a half after birth.
I started to feel a bit concerned that C's neck wasn't quite stable yet.
However, during the two-month check-up, no particular abnormalities were observed.

"Well, she's a girl. Maybe this is normal."

However, even after four months, C still hadn't stabilized her neck.

"I'm really worried..."

When I took her to a nearby hospital, I was referred to the pediatric neurology department.
There, they conducted a series of tests including a blood test.

"Her neck stability is a bit late, but as far as I can see, I don't think there's anything particularly wrong. Just to be safe, shall we do a CT scan of the brain?"

The doctor's attitude changed suddenly after looking at the CT images.

"This is... Please call the father."
"Huh?"

Feeling confused by the doctor's stern expression, I contacted my husband.
He rushed over immediately.

"...Mr. K, this child may not live for a year."

The doctor continued speaking calmly while pointing at a part of the brain shown in the CT image.

"The brain folds here haven't developed."

I couldn't help but peek into C's face as I held her.

"This is a very rare disease. I think we've only had about six cases in our hospital so far. They generally pass away within a year. In the end, they suffer from pneumonia or convulsions..."

"Wait. But she looks fine and smiles normally. She drinks milk well, so how can that be..."

The tragic words from the doctor and my daughter's lively appearance felt so disconnected that it sounded like someone else's story.

The diagnosis on the medical certificate read "Lissencephaly."

For tests, two days later, I began living in the hospital with C.

There are many severely ill children in the neurology ward.
Doctors and nurses were running around attending to children who had seizures.

"I'm in such a difficult place too."

Thinking that I had to accept this reality made me very scared.

"She's fine now, but will she end up like that in the future?"

My anxiety ballooned, and I spent sleepless nights from the very first day.

There were no other children with the same illness as C, but I heard many stories from other mothers accompanying their children about the difficulties of parenting and the side effects of medications.

The uncertainty of the future.
By hearing in advance, I thought, "I have to prepare myself to endure it if it really happens someday."

One month after the hospitalization for tests.

"We have conducted various tests, but in the end, we couldn't determine the cause."
The doctor told me this.

"We don't know how many more years C can live. However, it seems there are no immediate factors that would cause her to pass away."

I felt a sense of relief for the time being with those words.
Finally, I returned to my daily life.
But something felt different from before.

Even when I went for a walk while holding her, I felt like people around me were looking at us with curious eyes.
I couldn't help but compare C with other children.

C has poor temperature regulation, and in summer, she would suffer from dehydration or pneumonia, repeatedly going in and out of the hospital.
One night during a re-hospitalization, I was staring blankly at the night view visible from the hospital room window next to C, who was sleeping quietly.

The lights of the city visible through the window.
That area was a place I had visited many times when I was working as a company employee.

"I can never go back there again."

Suddenly, tears began to flow.
The night view that I had been looking at normally until then appeared to be a different world, separated by a single pane of glass.

Having a child with a rare disease brings various hardships.
I can never return to the time when I knew nothing—.
I felt as if I was the only one left behind in the world.

"Even modern medicine doesn't know what will happen to this child's life. Why was C born?"

I can't understand it, no matter how much I think.

I asked doctors, acquaintances, and sometimes even people said to be psychics, but no one could give me an answer.

“Maybe there is something invisible...”
I couldn't shake that feeling.

One day when C turned 1 year old, the feared convulsions finally began.

“Finally, this moment has come.”

My knees trembled.

The unfortunate events I had been vaguely thinking about suddenly hit me with a sense of reality.
My husband was busy with work, and I was always on high alert to not miss any slight changes in C's condition.

With just one decision to give medicine or take them to the hospital, my child's life could be at stake—.
That pressure was unbearably painful.

“I have to hold it together.”

Feeling like I was about to be crushed, I somehow managed to rally my spirits.

C, who was said to not last a year,
somehow managed to celebrate their 2nd birthday safely.

One day, I was sitting next to the baby seat, soothing C.
I spoke to them while recalling the cherry blossom viewing we had done as a family a little while ago.

“C-chan. The cherry blossoms were beautiful, weren't they? Did you have fun too?”

When I gently touched C, I suddenly thought.

“I thought I had to do something... But I can't manage this child's life.”

Inside the baby seat, C was moving their small hands with all their might.

“Let's leave it to the invisible God.”

As soon as that thought arose, the tension I had been holding onto eased away.

A little while later,
when I returned from shopping, my mother, who lived with us, called out to me.

“Today, someone brought this book.”

It was brought by a believer of Happy Science open_in_new who lives nearby.
It was a book called 'The Law of the Sun' open_in_new by Ryuho Okawa open_in_new.

When I read it, it was filled with teachings about Buddha and the soul, and I turned the pages as if I was drawn in.

“...First, it is necessary to consider the original purpose and mission of humans. The starting point is why humans are born into this world.” (Chapter 4 'The Ultimate Enlightenment')

I finished reading it in one go.

“So we are born with a purpose!”

The essence of humans is a spiritual existence, and we carry the same light as Buddha.
We plan our lives in the afterlife and are born into this world for soul training.
Every life has meaning...

A sense of relief enveloped me.

“Why am I going through this?” “Why did this child become ill?”—Questions I constantly pondered while raising C.

I felt as if I had received an answer to that 'why'.

“If there is meaning... then let's do our best.”

I felt as if the world around me had opened up, and I was filled with energy.

I searched for Ryuho Okawa's open_in_new books at a bookstore and read them.
Every book I read moved me.

Wanting to know the latest information, I boldly visited a nearby branch open_in_new.

“Hello... This is my first time here.”
“Welcome. Please come in.”

I was a bit nervous, but I felt relieved by the smile of the person who welcomed me.

That day, the branch manager first talked about the truth of the Buddha's teachings.
After that, participants formed groups of 4 to 5 people.
I was also included in one of the groups.

Everyone shared their thoughts on what they heard from the branch manager and about Happy Science's teachings open_in_new.
I was surprised to see some people seriously considering the problems of those close to them as if they were their own.

“I came here with my own troubles, but these people are trying to do something for others...”

Encouraged by those at the branch, I decided to join open_in_new Happy Science open_in_new.

One day, I found some free time and read the monthly magazine open_in_new of Happy Science open_in_new.
It said, “Offering is the love we give, and bringing smiles to others is also a form of offering.”

“Wow. C-chan, your smile is also a way of giving love.”

I couldn't help but talk to C, who was sitting next to me.

C laughed and smiled.

I was taken aback.

“C smiles a lot! She has always given me such a wonderful smile.”

I felt a tremor in my heart, and tears began to overflow.
C, who could do nothing.
I thought she couldn't even live without me.

“No, that's not it. C has also lived with all her might, giving love.”

I felt like I understood a little why C was born.

I don't know how much longer I can live. But just having C with me makes me so happy...

My husband always held C's small hand affectionately when he came home late from work.

Mothers don't compare C with other children and treat them the same way.

My eldest son K reads his favorite picture books to C.

Everyone loves C. They support me too. I'm so grateful...

Is C's stomach not feeling well?

C had been feeling well for about a month, so I decided to wait and see for a while and take her to the hospital the next day.

—It seems she is showing some signs of dehydration. We should admit her.
"Huh? Another hospitalization...?"
I felt a bit fed up.

At that moment, I had a five-month-old baby in my belly, and honestly, I thought it would be tough to stay overnight at the hospital.
After that, I entrusted C to the doctor and went to the reception to complete the admission procedures.

Around 3 PM—.

K-san, could you come here for a moment?

While I was in the middle of the procedure, a nurse rushed over to me.

Is something wrong?
"For now, please come with me."

I felt uneasy.

The doctor was standing in front of the treatment room.

K-san, C's condition has suddenly changed. We don't know the cause, but we will do everything we can right now. Please stay here.

Saying that, the doctor and the nurse went into the treatment room.

I felt anxious.
I sat on a long bench and prayed fervently.

When I turned my face, it was a nurse who was my classmate in high school.
She had always cared for C when she was hospitalized.

She bent down to my eye level and said.

You might want to call your father...

After that, I don't remember much of what happened.

Even when I tried to call my husband, my hands were shaking, and I couldn't pick up the dropped notebook properly.

—K-san, please come inside.

Called by the nurse, I went with my husband to C's side.

(C!)

A small body lying on the bed.

The time we could face each other was very brief.
C quietly passed away.

Tears overflowed, and I couldn't see C's face well.

When I left the hospital, a very beautiful full moon was floating in the sky.

Thank you, C, for everything until now...

When I enter the living room, when I'm preparing a meal... in those casual moments, my eyes inevitably turn to the place where C always slept.

How many times have I thought, 'Oh, C is not here,' only to return to reality?

2 years and 8 months—.

C lived that short time to the fullest.

It's strange, but I feel like C and I have been connected since the past.

I often reflected on my memories with C and felt that way.

There was sadness in this world of 'no longer being here,' but strangely, my heart was calm.

I wonder if knowing that there is an afterlife is like this...

Since the soul is eternal, I will meet C again someday—.
I feel like I was repeating that in my heart.

In 1998, I received training open_in_new at the Main Temple, Seishinkan open_in_new.
During the morning meditation time there, I had a mysterious experience.

While meditating, feeling like the wind blowing and flowing like clouds—.
I felt C's presence in my heart.
A smiling, lively C—.

Ah, C is doing well in the afterlife.

At that moment, I was overwhelmed with the thought that C had lived her life to the fullest in her own way, and tears flowed.
Deep in my heart, I felt sorry for not being able to do enough as a parent.
But that smile...

C passing away early was surely a life plan that we decided together for soul training. Thanks to C, I was able to find my faith.

I thought that conveying how I was saved by this faith would also illuminate the life that C lived.

I have been reporting my current situation through letters and phone calls to the nurses who took care of me at the hospital and to the mothers who are suffering from their children's illnesses, sharing my experiences more than ever before.

"How can you be so cheerful when you've lost C-chan?"
"Maybe it's because I realized that even though C's life was short, it had meaning. I've been learning the teachings of the heart, and knowing that 'it's not the end even after death' has really encouraged me."

At first, my friends listened in surprise, but gradually they became interested in Happy Science open_in_new, and some even converted open_in_new and started studying together.

Just as I have received a lot of love from many people, I want to live as someone who can give love as well.

President Ryuho Okawa open_in_new, thank you very much.

Lastly, to C-chan.
Mama will do her best.
I look forward to seeing what you will say to me when we meet again in the afterlife.

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