For bereaved parents on World Cancer Day

Today is World Cancer Day; a day of awareness raising, prevention, and celebrating survival. The overarching goal according to WorldCancerDay.org is to reduce premature deaths from cancer, and improve quality of life and cancer survival rates. But as a bereaved parent, I can’t help but also think of the non-survivors. Of the tragedy of losing a child to terminal illness no matter their age and the complexities of witnessing their struggle. So for World Cancer Day, I am posting an excerpt from When Your Child Dies that speaks to losing a child to terminal illness. I am also placing a hope into the world that the goals of today are met over time and less and less parents face this tragedy.

“Caretaking is a demanding process, wearing on a parent emotionally, physically and mentally. If you have witnessed your child suffer and die from a terminal illness, you may have:

  • Faced cycles of hope and uncertainty regarding your child’s survival
  • Witnessed the physical transformation and decline of your child
  • Endured a rollercoaster of temporary recovery and return to illness, sometimes on a day to day basis
  • Made treatment decisions on behalf of your child
  • Discussed final rites and potentially resolved unfinished business with your child
  • Managed shifting roles and disruption of the family system
  • Experienced a series of losses in advance of the death, such as a loss of lifestyle or loss of a job
  • Undergone financial stress and strain
  • Balanced the ongoing needs of your family with the needs of your sick child
  • Experienced emotional or physical burnout and fatigue
  • Managed positive and negative interactions in the medical system
  • Struggled with unanswerable questions such as “Why not me?” or “Why my child?”
  • Felt helpless to stop your child’s physical pain
  • Witnessed your child struggle with the challenges and emotions of facing illness and death

Parents have described a sense of relief and peace mixed with a deep sadness at the time of death. The nightmare has ended; your child no longer suffers. Your recovery from the ordeal requires healing from the exhaustion and restoring your reserves. Practice extreme self-care as you move forward.

For parents who have lost a child to cancer, my heart goes out to you. I hope that in reading this excerpt you see that you are not alone in your experience and that what you have faced is very complex and multi-faceted. It will take time to understand the full impact of your experience on your life. Keep your heart close and allow yourself the time you need.

Candles around the World

Last Sunday the Compassionate Friends organized their 17th annual Worldwide Candle Lighting. Across the world at 7pm, bereaved parents and their families joined to light candles in memory of their children. According to The Compassionate Friends website it is “now believed to be the largest mass candle lighting on the globe…a gift to the bereavement community… creates a virtual 24-hour wave of light as it moves from time zone to time zone.”

The magnitude of this event illustrates the degree of individuals and families who are impacted by child loss. Despite that, the death of a child in the eyes of others is the most awful thing imaginable and is often not spoken about. Bereaved parents understand this intimately as they struggle with the social awkwardness that follows the death of a child. People don’t know what to say, if they should say anything, or how to react. Some even retreat in fear, as their own mortality and the mortality of their own children suddenly becomes tenuous in light of the death.

Because I’ve authored a book on the subject, people often share their stories with me. They know I won’t shy away. In some cases it has felt like a confession of sorts. Their voice drops close to a whisper. They don’t want to be overheard. They are guarding themselves from people’s reactions.

But everyone has a story about the death of a child, be it their own or someone in their family. It touches peoples lives in more ways than is acknowledged by society. As I think about the hundreds of thousands of parents that lit candles across the globe on Sunday, I can’t help but wonder what it would be like if we could all take the time to be open to their stories. To stop shying away from the tragedy in life. To listen, acknowledge and create space in our society for the deeply meaningful relationship between life and death.

For now, I’ll try to be a microcosm of that ideal.