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My only child died, but I’ll always be a mother

Author: Lesley Buxton
15 May 2018

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.

When 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.”

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.

That Mother’s Day, my first as a mother without a child, I thought I could avoid the trappings of the occasion by staying off social media. But as we drove, we kept passing gas stations, flower shops and ads on billboards proclaiming “Happy Mother’s Day.” I turned on the radio for distraction, but even that proved painful: The DJ talked about his mom, and his listeners were calling in to request songs for theirs.

I felt like a child aching with a fever who couldn’t quite express where it hurt. The brightness of the spring sky stung my eyes. Sounds hurt my ears: the roar of a passing car, the shriek of a plane flying overhead, the thump of the drums in my favourite song. Everything was too intense.

Around noon, Mark suggested we stop for lunch at a restaurant that a friend had recommended. When we arrived, the parking lot was packed and the line-up was so long, it spilled onto the sidewalk. Kids hung onto their parents’ arms and ran up and down the queue, singing, playing and squabbling with their siblings. Mark and I turned around wordlessly and headed back onto the highway.

We stopped a couple of hours later at a fast food joint. Anyone watching me unwrap my burger from across the room never would have known the significance of the occasion to me, just by looking at me. But I remember keeping my head down as we ate, as if I had something to be ashamed of.

We spent the rest of the day driving, mostly in silence. By the time we reached North Platte, Nebraska, it was getting dark outside. Our hotel room was dingy, with a stained carpet and a sagging bed, but I didn’t care. All I wanted was to go to sleep. That first Mother’s Day was a jarring reminder that I had lost not only my child but also my identity. I was grieving for two people: my daughter and the person I was when I was with her.

I was 31 when India was born. Up until then, I thought happiness came from checking off accomplishments. It was a revelation to me to discover how happy I could be just being with my daughter. Ordinary things became extraordinary with India: A walk in the park became a singalong, a bus ride was a chance to tell a story, a trip to the thrift store turned into a treasure hunt. I was at my very best mothering her.

With India in my life, suddenly I understood that everyone was someone’s child. Because of that, I could connect with people I never would have opened up to in the past. I became friends with people through my child—people with whom all I had in common was the fact that we loved our children. This, we understood, made us all hopelessly vulnerable.

For most of her childhood, India was the picture of health—a theatrical kid who strutted around the house mimicking the models on the TV show Top Model and the characters from Harry Potter. Then, when we were on our summer vacation, a couple of months after she turned 10, India began to fall down. At first, we attributed it to predolescent clumsiness, but then we noticed a strange flickering in her eyes and it became apparent that something was wrong. Over the course of the disease, India’s seizures would grow from milliseconds long, spaced out by weeks, to five seconds long and mere minutes apart.

For the next six years, we tried to find out what was wrong with our daughter. She went from being a daredevil who hung upside down on the monkey bars to not being able to write her name. Still, we kept hoping that the next neurologist would know what to do—that the next medicine would fix things. But these “drop” seizures took over and my daughter gradually lost control of her body. At the time of her death, she was having about 4,000 seizures a day. She was either having one or about to have one. Every sentence she uttered was interrupted by a seizure.

Even now, little is known about spinal muscular atrophy with progressive myoclonic epilepsy (SMA-PME). Back then, before we even had a diagnosis, it was impossible to know how the disease would progress. Eventually, it took our daughter’s mind as well. Her last weeks were filled with hallucinations so terrifying that my brave daughter—who had never once cried during a medical procedure, no matter how much it hurt—screamed with fear.

For me, mothering India was like mothering two different girls: India before her illness and India after. And then, once she died, it felt like motherhood was something I’d dreamed about.

I miss watching India play soccer and ride her purple bike. I miss hearing her sing with a voice that would send shivers up and down your spine with its power. And one of the strangest aspects of my new life is that I no longer feel I can share what I know of motherhood. When my friends tell their children’s birth stories, do I speak about my daughter’s when I know it might make them uncomfortable? When someone’s child has a fever or a bad play date, do I share how I dealt with it when the same thing happened to India? Sometimes I feel like the Greek mythological prophetess Cassandra, a constant harbinger of grief—a reminder that bad things do happen to normal people. It hurts to remember the past, but it hurts far more to keep quiet and deny my own motherhood. Read more...

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