A Little Light and an Endless Daily Life

Chapter 2

Thank you for reading the first chapter.

I wrote many plausible things, and
looking back now, perhaps some words that were a bit pretentious, but
yes, raising children is not about theory, but
a accumulation of days that cannot be neatly summarized and do not go as planned.

My eldest son has autism,
his tantrums are intense, he has sensory sensitivities,
and a strong obsession with cleanliness...

Over the most trivial things, his emotions overflow all at once,
and he bursts into tears with a "Waa!"
That is our daily life.

In that moment,
he is like a Tefal electric kettle.
Once the switch is flipped, there is no stopping him.

And I, too, am not a perfect mother,
just a human being.

I, Mom-chan, have the same temperament,
and to my eldest son's "Waa!",
I end up covering it with the same "Waa!" in return.

I wanted to respond calmly.
I wanted to understand him.
But I couldn't.

The ideal mother and the real me.
The days spent swaying between the two
have continued since I became a mother.

We found out about his condition when my eldest son was turning three.

The test results at the university hospital.
The doctor's face was surprisingly expressionless.

The blood test results show
Duchenne muscular dystrophy.

Developmental delays.
Speech delays.
The way he walks.
And the fact that it is often comorbid with autism.

The information I looked up online later
all matched my eldest son.

My tears wouldn't stop,
the guilt toward my eldest son,
the anxiety about the future,
the impact on my second son who had already been born.

Helplessly,
amidst feelings that felt like they would crush me,

even so, a small,
"I'm glad I know"
feeling was definitely there.

I couldn't admit it at the time, but I understand now.
That was a very small light
shining into the darkness.

From then on,
I clung to the internet,
searching desperately for any way to cure him.

There were times when I traveled to hospitals far away,
and after hearing stories from people who had improved their illnesses through diet,
I even took the plunge and tried contacting them.

I think that is exactly what it means
to clutch at straws.

Meanwhile, my doctor
told me about an association for people with muscular dystrophy,
so I decided to join.

However,
just because we knew what the illness was,
it didn't mean my eldest son's tantrums calmed down,
nor did the struggles of parenting disappear.

Every day just continues on, unchanged.

In the midst of those days,
before I knew it, I started thinking
that I wanted to have another child for my second son's sake.
That is how I came to feel.

And then,
my third son became a member of our family.

And so,
Momiage-kaachan
became a mother of three boys!!!