When Death Came Calling: a family’s encounter with Leukemia

Death has never made itself more personal than when it came calling for my daughter, Aria. She was 4 years old.

My husband, Doc, told me about her cancer with words I will never forget. “Honey, they think she has Leukemia.”

The image that statement instantly brings to my mind is of death pushing and shoving me to the edge of life while clutching Aria to my body. The experience was unapologetic, undeniable and horrific in my complete helplessness.

For three years I stood on the edge of life holding Aria above what looked like an infinite well of darkness. On either side of me, I could see countless other parents holding their children. Some were able to bring them closer to their bodies and slowly step away from the edge turning back toward life. Others, I watched in complete disbelief, as death snatched their beloved little ones in ways so merciless I fear I shall never fully recover. And then there were those families who I watched release their children in such a way that death and acceptance seemed bound in some kind of transcendent beauty.

Regardless of the experience, one thing was certain. Very few of these families were, at the time, fully comforted by their religious beliefs regarding God and death. Many of them put on a brave face, thanking people for sentiments like; she’s in a better place. Now he’s an angel watching over you. God must have needed her with him. But when the masks came off, the tears poured forth and they raged against their God with agonizing bewilderment.

That seemed a kind of additional suffering of which I wanted no part. I knew I might have to let Aria go before I was ready, before I wanted to, before I could accept it on any level. So I became a student of death.

I needed to learn how to walk the knife’s edge of life and death utterly fearless and more than anything I needed to teach Aria and my two other children how to do the same. I learned very quickly that the best way to allay some of my fears was to talk candidly about it—openly and use the language of death. Phrases like; went to sleep, passed away, went to heaven and so forth were not helpful to my children or to me.

Instead, I found myself talking to them about some of the children we knew who were dying or had died saying things like; it was their time to die even though it feels too soon. We all die so little so-and-so just did what we’ll all do someday.

When Aria was really ill and started asking if she was going to die, naturally it took a Herculean effort not to burst into tears and console her with lies like; No darling. Never. You are not going to die. This is the voice of fear and she deserved my unwavering courage.

Instead I told her emphatically, “Yes! Of course you’re going to die. Someday. When it’s your time. I don’t think that time is right now though. But I don’t know when your time is going to be so let’s focus on right now and being alive.” Then I would say something like, “Let’s play ponies!”

As a pagan, I find my connection with the earth and its rhythms helpful and consoling. I own a farm and sought the gardens not only as analogy for death but as a place of tangible comfort. Many times working in the garden with the kids we talked about how healthy death brings forth new life in a never ending unbroken cycle. Death is a completely natural organic process. I watch plants die and rot and in that process I see their inevitable return in some other plant or as nourishment for the soil. With respect to humans, I suppose this is why the concept of rebirth sits well in my mind. It is what I observe in nature.

It’s been six years since I heard those words. Aria is alive and well. It wasn’t her time to die. In the slow savoring walk away from the edge, I have learned that we honor our beloved dead best by learning to better live. What that means to me is learning how to live authentically while staring into death fully embracing its Mystery despite fears and reservations. I spend almost no time wondering or worrying about what comes after death. I don’t know.

All I know is that death comes for us all. I want to be able to go toward the end like an autumn leaf that falls whimsically from the tree back to its beginning.

Join us for Coffee Talk at 10 a.m., Saturday, at Indaba Coffee for a discussion entitled, “The Wonder of the End.” Hayes is a panelist.