Tonton and the Days Ahead
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I Wish This Moment Could Last Forever

At around half past three in the afternoon, I drive to pick Tonton up from the daytime disability support service she attends.

Once we get home, I first give her something to eat. Then I ask,

“Would you like to play something?”

These days, she answers, “Karaoke.”

We use karaoke on the Nintendo Switch. I bring up the screen showing the songs we have sung before and ask,

“What would you like to sing?”

That is how we choose.

Her recent favorites are Disney songs: “Love Is an Open Door,” “A Whole New World,” and “Beauty and the Beast.” She chooses duets, so I sing with her.

When the intro starts, Tonton asks me,

“Which of us starts again?”

When the male part comes around, she hands me the microphone. And as we sing together, she looks at my face while singing the final lines of the chorus.

I get a little shy, too.

But in those moments, I find myself thinking,

“I wish this moment could last forever.”

In my previous post, I wrote about why I am looking for a future home for her. There is a lot we need to think about, but our days together also hold moments like these.

Coming home, having something to eat, and singing together.

For me, it is an ordinary yet irreplaceable moment of happiness in everyday life.

About this blog

I am a father in Japan living with my daughter, Tonton, who has Dravet syndrome. I write about our days and our search for her future home, keeping her feelings and the things she loves at the heart of our plans.

This blog shares my personal experiences as her father. The services described are in Japan; eligibility and procedures vary by place, time, and individual circumstances.

I respect the privacy of my daughter, our family, and the people involved in our lives. I do not publish potentially identifying details that are unnecessary to tell our story.