real life

"In 2017, I lost my daughter. Her death pulled the rug out from under my life."

Ana was sick for four and a half years. During most of that time, even as her cancer progressed, I didn’t think that she was going to die from her disease.

I thought that she would beat it. I thought that her tenacious will to live would help her overcome the odds, and that scientists or doctors would invent something miraculous to shrink her tumours and restore her health.

When it eventually became obvious that a miracle wasn’t going to happen for Ana, I turned my focus to helping her die.

Her death pulled the rug out from under my life. It shattered my understanding of the presumed natural order of things. It left me with the dilemma of trying to make my way in a world that made absolutely no sense to me. It robbed me of my ability to feel joy, at least for a while.

my child died cancer
Ana, Age 8. Image: Supplied.

Living without Ana wasn’t something I’d ever considered. When I did let myself think about it — her empty room, my empty days — my mind recoiled from the thought.

But it happened, the worst possible outcome — I woke up one morning in a world without Ana.

I had to get out of bed, had to do laundry, had to try and function for my husband and my remaining daughter. I had to walk Ana’s dog and feed her ancient gerbil (a creature, to my unending chagrin, that had outlived his own life expectancy by nearly triple the length).

There were a million everyday scenarios that required me to move through life as if a piece of my heart wasn’t permanently gone. Those early days of living in a post-Ana world felt like an affront.

ADVERTISEMENT

Back then, I had an almost obsessive need to tell whoever crossed my path that my daughter died.

“Don’t you understand?” I wanted yell, “None of this matters because my daughter died!” (by “this” I meant everything — work, life, the upcoming season of Game of Thrones and everything in between).

Sometimes I did (and still do) tell total strangers— I blurt it out or I slip it into an email, because I want them to know. I need them to know.

My child died. That happened. I am here and she is not.

my child died cancer
Ana, age 11. Image: Supplied.

I barely worked for months after I lost her. I spent my time walking outside and watching birds. I searched for her, for any sign she was trying to communicate. I stared up at the sky constantly.

I outsourced most of my work to subcontractors who kept my consulting business going while I drifted through the days in a fog of numbness and grief.

Back then, most people who knew me knew that Ana had died. I’d been blogging about her for years.

I also told everyone — and I mean everyone — her story. Bank tellers, a rabbi I’d just met, prospective new clients, my dental hygienist, a life insurance broker, unsuspecting cashiers and the mechanic who fixes my car. I told them all. It made for some very awkward moments.

ADVERTISEMENT

I eventually learned to suppress the urge to tell every single person I met about Ana. But I’ll never stop saying her name and when someone asks how many children I have, I will never hesitate in my response.

“I have two daughters,” I will tell the unsuspecting questioner, “One living and one who died from cancer.”

It’s probably harder to hear that than to say it.

The fact that I’m no longer telling everyone about Ana could be construed as some measure of progress. But, from where I’m standing, it doesn’t feel like much.

It’s taken me two years to get to a place where, sometimes, I feel almost okay, but this wound hasn’t healed, not by a long shot.

my child died cancer
Ana, Age 13. Image: Supplied.

I think part of my compulsion to tell people about Ana, and about the long, painful trajectory of her illness, is that sometimes I still don’t quite believe it all happened.

Ana was a healthy, vibrant child before she got sick. She’d never been hospitalised. She hated needles and doctors. She loved cats and swimming. She was supposed to grow up.

I had no idea how lucky I was before cancer came into my home and took up residence. It’s appalling, really, the assumptions I’d made about cancer and terminal illness and grief, before I was dragged into this darkness.

ADVERTISEMENT

I haven’t fully emerged from a place of despair. I probably never will. There are people I knew before Ana got sick that I don’t see or talk to anymore. I’ve withdrawn from them, for the most part, and in some cases, they’ve withdrawn from me.

I can’t really blame them. I’m a completely different person now. The version of myself that existed before I lost Ana, died with her.

my child died cancer
Ana, Age 15. Image: Supplied.

I am a more fearful mother, afraid of losing Emily, my remaining daughter. I am always bracing for catastrophe.

When I drop Emily off at school each morning, I push away visions of a gun-wielding kids bursting into her homeroom, erasing her from my life.

When something hurts — her head, her hip, her arm — my head fills with visions of tumours growing on her bones or in her brain.

In a little less than two years, she’ll be driving, and I will have to squash the images of fiery car crashes that will inevitably haunt my troubled imagination.

I want the universe to spare me from anymore loss. I want people to understand the weight I’m carrying and help me carry it.

I want them to accept that I’ll never be my old self again — the shape of my soul is different. A piece of it is gone. It’s this way for all of us, the grieving parents of the world. I wish we could get a free pass from further pain forever.

ADVERTISEMENT

I know it doesn’t work like that. I was lucky once, incapable of believing that either of my children could die even though the evidence was all around me.

my child died cancer
Ana, age 15 (with her dog, Roo), a few days before she died. Image: Supplied.

These days, I’m more selective about who I tell about Ana. I tell the people that have the potential to stay in my life for more than a brief moment.

I tell them because I can’t bring myself to care about small talk or politics or the cost of gasoline. I’m compelled to acknowledge my new self, my changed self, and hope that they accept this broken version of me. Some of them do. As it turns out, grief lurks below the surface for many of us.

It’s a true source of solace to meet someone who can walk this lonely path with me. Sharing grief makes it more bearable. That’s the biggest reason I tell people that my child died.

This post originally appeared on Medium and has been republished with full permission.

For more from Jacqueline Dooley, you can find her on her blog, or on Twitter.

If this has raised any issues for you or if you would like to speak with someone, please contact the Sands Australia 24 hour support line on 1300 072 637. If you think you may be experiencing depression or another mental health problem, please contact your general practitioner. If you're based in Australia, please contact Lifeline 13 11 14 for support or beyondblue 1300 22 4636.

00:00 / ???