I was in the depth of despair three times in my life: when I learned that my son was born with Down syndrome; when my husband passed away suddenly; and when I became paralyzed from the waist down due to acute aortic dissection in 2008.
Each time, I felt desperate and spent days crying. I can say, however, that I’m at my happiest now. Each one of those despairs has taught me to appreciate simple happiness in everyday life. I have learned that despair can be the beginning of new life.
Having a Son with Down Syndrome
Now I am sharing my experience and viewpoints as a mother of a child with Down syndrome, a former non-disabled person, and a wheelchair user. As an advocate on accessibility and inclusion, I have also been giving talks on what we call “Universal Manners”. I hope I can share my observations and feelings with you.
My son, Ryota, has Down syndrome as well as intellectual disability. When I gave birth to him in a hospital, no one gave us blessings. I was so perplexed and worried that I even thought of killing us both. Ryota grew up very slowly, but he acquired skills one by one. When he was going to enter a primary school in the neighborhood, I made sure he could say “thank you,” “I’m sorry,” and “hello.” He was not able to speak well, but I was sure that these phrases would help him make friends.
He learned to say “thank you” when someone helped him. “I’m sorry” when he couldn’t follow some rules at school. “Hello” to his classmates in the morning. His classmates weren’t sure how to communicate with him at first. But gradually, they started interacting, and Ryota was often seen at the center of a circle of friends.
Ryota may not be able to study or speak, but it doesn’t matter. He and his friends taught me that. My worries dissipated and I came to be proud of him.
A favorite childhood memory of Ryota
The most memorable event in Ryota’s childhood is a sports meet in his kindergarten. The five-year-old class was to compete in a relay race. Everyone took it very seriously, and only those kids who were good runners took part in the race. Ryota, however, didn’t fully understand the situation and volunteered to be on the team. He has hypotonic and cannot run fast. If he joined the team, they were bound to lose. I was about to tell him to step down.
Then, one of his classmates, suggested. “Ryota cannot run fast. So, we should run faster to cover him. Let’s practice!” In the sports meet, Ryota’s team stood out in passing a baton and became the first place. My eyes welled up as they were cheered and praised. “Ryota is our friend. There is nothing special in running together. If he wants to run, he should.” The children had a very simple idea. Ryota and I cherish those days he shared with them.
I was hospitalized for two years between 2008 and 2010, and underwent three big surgeries. For several months after the third surgery, I could hardly move and was confined to bed. Irritation, sadness, and the feeling of being useless. I was overwhelmed with the fact that I was moving further away from the society. I told my daughter, Nami, who was a high school student, that I could no longer live.
After some silence, she said to me. “If you want to die, you can die. But I don’t care if you cannot walk or leave your bed. For me, you are my mother, no matter. We will be fine. 200,000,000 % fine. Trust me.” When I was assured that we would be fine by my daughter who was so dear to me, I felt I could trust her and accept everything in life. Gradually, I came to feel I wanted to live. 200,000,000% fine. Nami’s words still hold me up. Later I found out where the number came from – a lottery poster!