A Lifelong Job: Living with People with Disabilities

My life is full of things that don't go as planned.
No matter how hard I try, nothing works out, and I'm constantly feeling down.

Even as I reach the later stages of life, my heart is filled with anxiety.
I have no money, and I have no hope.
It's almost painful just to be alive.

So, what exactly am I trying to say?
It's that while my head understands, my heart just can't keep up.

I understood it in my head from the beginning.
That in this world, there are people with disabilities, people with illnesses, and all sorts of people, and everyone is living their lives.
But when it came to my own child having a disability, my heart couldn't keep up with the fact that my entire way of life would change completely.

That inability to keep up has now lasted for 53 years; ever since Hokaron was born with an intellectual disability, my heart has not been able to keep up with reality for these past 53 years.
I'm not like Adrien Brody, who ran and caught the Darjeeling Limited after it started moving; I'm like Bill Murray, who couldn't catch up and missed the train.

But it was good to see that in a later scene, Bill Murray seemed to be able to catch the next train.

And why can't I keep up?
It's because my own preconceptions, conditioning, common sense, calculations of gain and loss—well, it sounds nice to call it human nature, but to put it bluntly, my ego, which just wants to live a normal life, is too loud.

Just because you are the parent of a person with a disability doesn't mean you have to be a saint or a perfect person. People with disabilities, and their parents, can be selfish, bundles of ego, and self-centered.
But my heart keeps interfering.
Whenever I try to put myself first, I feel guilty.

I understand it in my head.
Parents are human too, so it's okay to rest your mind and body, and it's okay to do things that are fun.
It's better for both parent and child if we live happily with a smile and take care of our health.

However, the "good child" deep inside my heart brings up feelings of guilt.
This is harder than practicing inclusion, and it becomes a battle within my heart.
Unless I forgive this heart of mine, I cannot practice "inclusion" either.
This vicious cycle traps me, and I find myself wondering what to do.

Everyone hides guilt deep in their hearts.
Those who are caregivers are the ones who have the most opportunities for guilt to surface.
I am one of them.
Since guilt won't go away, let's just let it live deep in our hearts.

My doctor once told me, "It's okay to be more absent-minded."
I ended up taking every single thing seriously because I have been living with Hokaron.
"Living with a person with a disability."
This is my lifelong job.

It's okay if I can't keep up.
I'll just catch the next train.

Being on the same train as Bill Murray doesn't sound too bad, does it?

Header:
"The Darjeeling Limited"
Directed by Wes Anderson, 2007