Less than a week ago, I walked beside the hospital bed as my seven-year-old son was wheeled down the hallway to the procedure room where he would spend the next few hours. There, a catheter tube inserted through an artery in his leg would enter his heart and small pieces of tissue would be taken to test—this procedure is called a cardiac biopsy. This last one was the eighth time he’s had this procedure and it is still a harrowing experience, made worse now as he understands what is happening and can voice his fears. Just before he fell under the anesthesia, he said “I’m scared, Mommy.”
It is no small task to face a child’s fear in the face of chronic illness. In fact, there have been times where the pressure of it all has driven me to my knees in anguish and times where I was certain the despair would overtake me completely. Since my son’s diagnosis with a life-threatening heart defect, I have become intimate, if uncertain bedfellows, with death anxiety. There is the near-constant awareness of death lurking around our family—indeed, given that he is a heart transplant recipient, his very life is tied to death.
The experience of pervasive death anxiety is not unique to my family or families like us; we are just more aware of it. The reality is that death is everywhere around but most people have the luxury, if you can call it that, of ignoring it. The leaves that fall off the tree, the animals whose last breath came on the side of a busy road, and the seasons changing are all reminders that time continues to march on, each day delivering us a little closer to the inevitable dance we will do with death. Life offers an invitation in those reminders and asks us “How will you live before you die”?
Of course, there are those who will chastise me for saying and writing that I fear burying my child. There are those who will tell me to have faith, to pray to an unseen God, to not dwell on the “negative,” but to me, facing the reality of our lives and the circumstances we face is not negative at all. Paradoxically, it has been the death sentence hovering over our household that has made passionate living possible. Yalom (2008) describes the difference between “how things are” and “that things are”—or a normal existence that is concerned with surroundings whereas the ontological mode that causes one to “focus on and appreciate…that things are, that you are” (p. 33). Being aware of the contingency of life has encouraged me to “make significant changes” (p. 34) and to begin to build a life that is authentic, engaged, connected, meaningful and fulfilling, and as I have done this work, I have attempted to pass this way of being onto my children.
As Yalom writes, “it is not easy to live every moment wholly aware of death. It’s like trying to start the sun in the face; you can only stand so much of it” (p. 5). It is true that there are many times where the weight of it all seems to much, and I have turned away but those times are happening less often and are showing up less intensely. The more I “stare at the sun,” the less blind I become.
When my son was diagnosed, I had no idea what the future held. I still have no idea what will come. I don’t know if he will live to be 18 or 80. I don’t know if he will get married, have children, or do anything that most parents assume their children will do. What I do know is that this experience has taught me how to value time, how to appreciate what really matters, and how to actively choose how I want to spend however much time I have with my loved ones. I hope you choose to do the same.
I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denyin’
And he said, Someday I hope you get the chance
To live like you were dyin’
–Tim McGraw & Craig Wiseman
— Lisa Vallejos