My oldest daughter was born after we had waited 11 years to have a child. She was a healthy and happy child. She was not picky about food. She had a calm personality and was easy to raise.
Until the upper grades of elementary school, she was a good runner and even took dance lessons.
At the same time, there were things that worried me.
She had a hard time dealing with changes in her environment or sudden changes in plans. She struggled to keep up at school. She had a poor sense of time and distance, so meeting friends at the right place and time was often difficult.
She always needed my guidance and support.
I felt she needed to be tested, but she strongly refused. So she entered a public junior high school without any evaluation.
Around that time, running, swimming, and even small hand movements slowly became more difficult.
She fell further behind in school. I think it became painful for her as well, and even when she went to school, she often spent the day in the nurse’s office.
When she began thinking about high school entrance exams, she told me that she wanted to be tested. An intelligence test showed that she had a mild intellectual disability.
I remember feeling relieved. I no longer had to tell her,
“Try harder. Why can’t you do it? You need to try harder.” Instead, I realized my job was to help create a place where she could live peacefully.
She entered a correspondence high school with strong support for students.
She was surrounded by kind teachers and good classmates, and she enjoyed her high school life.
But in 2022, during her third year of high school, she had her first seizure. After medical tests, she was diagnosed with epilepsy.
After that, she took medication and attended a life skills training center and a job support program.
My husband was a kind father who loved our children very much. But once something caught his attention, he became completely focused on it and could not let it go.
Around 2011, he seemed to lose the ability to control his behavior and his impulses. He caused financial problems again and again. Each time, I felt betrayed, and little by little, I lost trust in him.
At that time, I was raising our children while also caring for my husband’s parents. Life was already very difficult. Instead of supporting me, my husband lived as he pleased. He spoke harshly to me and continued to cause financial problems.
I was exhausted, both mentally and physically.
I had reached my limit. I decided it was time for a divorce. But just before that happened, my husband suddenly lost consciousness and was taken to the hospital by ambulance.
After many tests, he was diagnosed with DRPLA.
The doctor told us, “It was most likely inherited from his late father. There is also a high chance that your daughter inherited it.
She should have a genetic test.” The test showed that she had the same disease.
In that moment, countless fears rushed into my mind.
Is my healthy son also at risk?
How will this disease progress?
Can I take care of both my husband and my daughter by myself?
Will we be able to survive financially?
Even so, I couldn’t spend my days crying. The disease continued to progress. I became busy with government paperwork, pension procedures, and applications for long-term care services.
About one year after his diagnosis, my husband now uses a wheelchair.
He still speaks harshly to me. And once he becomes fixated on something, he cannot stop.
My daughter’s seizures come and go. Some days they are under control, and some days they are not. It is hard to ever feel at ease.
Her thinking ability is getting worse, and her walking is becoming more unsteady.
Her thinking ability is getting worse, and her walking is becoming more unsteady.
I know many more hardships lie ahead.
But we want to overcome each challenge, one step at a time, and live our lives with no regrets.
That is how I feel today.
