What it's Like to Grow Up With a Terminally Ill Parent

The author with her dad

I don't know if there was a specific moment when I found out my father was dying. I only remember my short life with him in two parts: when he was healthy and when he wasn't.

The first time he collapsed, we thought maybe it was just from exhaustion. He had been working in the fields twelve hours a day, preparing our farm land for the biggest crop our family had ever grown, excited over the prospect of the extra money we could make and what that money meant for our family. If everything went as planned, maybe it would be the first year we wouldn't need food stamps to survive the winter.

When he collapsed the second time, we knew it had to be something more. There could have been earlier signs but my father hated doctors, hated hospitals, and avoided them completely. After he underwent testing everything became sort of a blur I only remember now in fragmented images, emotions, bursts of words and conversations leftover in my brain. Stage 4. Non-Hodgkins Lymphoma. Chemo. Radiation. How much time does he have left? What are our other options?

Just as quickly as my family learned of my father's diagnosis, everything in our lives changed. Soccer practice was canceled indefinitely. Family pets were adopted out. At this stage of the disease the lymphoma had spread to his bone marrow, so anything that was deemed an extra drain on our time and resources was immediately discarded.

What I remember the most about this time is the deafening silence. I was alone all the time, either in hospital waiting rooms or in my parents' farmhouse half an hour from any real civilization. No one would explain to me what was happening to my father so I let my imagination run wild. But instead of worrying about him I began worrying about myself.

Every time I visited him in the cancer ward I passed by other people with lymphoma–namely, other children. Children who were my age, children who were younger, children with bald heads and masks on their faces in rooms with glass walls that waved to me as I walked by. I became obsessed with death and haunted by the idea that I, too, was dying. When this anxiety turned into recurring nightmares I had every night I was afraid to tell my mother. She didn't need one more thing to worry about so I knew it was up to me to find solace in other ways. I was only 10, but it felt like childhood was something that had already left me.

It was at this age I learned how to take up less space, to become quieter than I was before, to become so still and breathless it was as if I wasn't even there. I realized my presence was a burden to my mother; an obligation. Some of the other kids at school started calling me "Ghost" not only because of my pale skin but because I wasn't much more than a mirage in the company of others. My roommate said something to me the other week: "You move so quietly around the house sometimes I forget you're even here." I guess some things always stick with you.

Illness and death are the things that change people and families. It forces us to reveal ourselves in layers, uncovering the seams that keep us together, while at the same time discovering the ways we can slowly unravel underneath. That's what happened over the next several years: my family unraveled. My mother forgot how to speak and write for a short time. My older siblings delved deeper into their addictions. My father was in and out of the hospital for different types of treatment and monitoring. And I was stuck in the middle of everything.

While my friends were focused on boys and keeping up with school gossip I tried hard to keep up with the daily rhythm of teen life. But, as time went on and my father became sicker, I started to feel more comfortable in the company of adults who ignored me than I did with my own peers. It was less exhausting that way.

Not everything was shitty though.

I liked the pity trips to the mall and TGI Fridays my family took me on when my father went through his bone marrow transplant. Spending money is always a good distraction, especially when you're waiting for someone to die. When I was 14, my older sister started taking me with her to her favorite biker bar on nights she didn't want me to be alone. At least in the throng of locals drinking shots of whiskey and pounding Bud Lights I learned a little about life outside of the cancer ward and high school - both places I felt invisible. In the camaraderie of blue-collar workers, bikers, outlaws, and town drunks everyone had a story of their own. In their presence I wasn't a kid to take pity on. I was someone who had scars of my own, who had rightly earned a spot at the table next to them.

Now, at the age of 31, I've lived half of my life without my father. When my friends talk warmly about their childhoods, the family vacations they took, the extra-curricular activities they participated in, I have a hard time relating. I don't know what the typical childhood is like. I don't know what it's like to have the average dad or family unit when you're a kid. And I have no idea what it's like to be able to call your father up as an adult and get advice like so many of my friends are able to. All of that shit sucks, sure, but I don't really look at it in a woe-is-me kinda way, but more so in a that's life, kid–shit happens kind of way.

It's hard to miss a life you've never lived. But even more so, I think it's harder to miss a family you never really had to begin with.

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