My only child died, but I’ll always be a mother.
I will always be India’s mother. But what does that mean now that she’s gone?
My first Mother’s Day without my daughter fell seven months after her death. India, my only child, died at 16, after a six-year battle with a devastating neurodegenerative disease so rare, we were only given a name for it six months before it took her life.
My husband, Mark, and I were driving through the Chicago area that first Mother’s Day. We were on a pilgrimage of sorts, dedicated to our daughter. Inside my purse, in a red Chinese embroidered bag, were 16 handmade colourful glass beads, each containing a pinch of India’s cremated remains. Our plan was to take most of the beads to Japan in honour of what would have been India’s 17th birthday. Ever since she had discovered the animated films of Hayao Miyazaki, she had dreamt of going there. She had even tried teaching herself the language by watching Japanese soap operas. It was her plan to live there one day.
This therapy helps grieving parents process child loss and miscarriageWhen we came up with this plan, it didn’t feel right to simply get on a plane and fly there, so we decided on a road trip through the United States to Vancouver, where my sister lived. We would fly to Japan from there. India was a traveller who loved nothing more than singing in the car and going on adventures. We knew she’d approve. The day before, we stopped at the Rock & Roll Hall of Fame in Cleveland, Ohio, and placed the first bead on Johnny Cash’s tour bus. India was a big fan. One of her favourite songs was “Jackson.”
INDIA AT AGE 15
As Mark drove, I looked out the window, watching as the city became suburbs, thinking about how India had barely woken up on Mother’s Day the year before. By then, she was so exhausted from her near-constant seizures that she rarely left her bed. She could no longer walk, feed, dress or bathe herself. On good days, she still made jokes and danced with me—I moved around her while she sat in her bed, swaying—but those days were increasingly rare.
I remembered sitting by her bed, scrolling through Facebook on my phone and reading about the things my friends were doing with their kids. It wasn’t the walks in the park or the fancy brunches I envied but the fact that their children were healthy. I reached out and stroked my sleeping daughter’s arm. With her black hair and pale skin, she always reminded me of Snow White when she slept. I wanted to cry, but I didn’t. I’d promised myself that I’d never cry about her illness in front of her.
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