California Governor Jerry Brown signed the Right to Die bill into law last week, and I was instantly pulled backed to the memory of my first born daughter's brain damage at birth and the choices we were offered for her end of life.
Twelve years ago, my husband and I anxiously held hands as we sat at a conference table across from a team of pediatric specialists. The hospital's Ethics Review Board called this meeting to tell us that we had two options for our severely brain-damaged child -- to let her live on life support until her organs gave out or remove life support and wait for her to die. The latter would be the fastest of the two.
Someone said, "She will be consumed by dehydration and hunger."
I squeezed my husband's hand as the terrifying thought struck my body in a lightning bolt of pain.
"How long would that take?" I asked through my deep sobbing. The answer came back like a gash in my stomach. A week. Or up to two months.
In 2004 in California, we could not legally do anything to end the suffering of our newly-born brain-damaged daughter, Amaly. We pleaded with the doctors and nurses to help us, but their hands were tied. It would have to be one of the two recourses they offered.
It was only a compassionate hospice nurse that delicately suggested that often a strong dose of morphine was what helped some people die sooner. I was in charge of administering her morphine and I began to consider this as a way of quickening her process.
However, in 2004 as it has been since until now, one was able to legally euthanize a suffering pet but not assist the terminally ill to die with dignity. I faced prosecution if I helped her in any way.
We took our baby girl home from the hospital soon after we took her off life support. We signed "Do Not Resuscitate" documents and we were assigned hospice care especially for children. It took 21 days. With each cavernous minute, I prayed for death to be swift while at the same time, an enormous selfishness fought against that same prayer -- that she stay as long as she could so that I could hold her close to my breast and mother her.
Although she did not speak, the language of her body showed me with unquestionable clarity that her existence was painful. I saw her eyes sink into her face, her fragile body writhe as her cerebral palsy manifested, her emaciating torso holding itself lighter with each passing day. The severity of her suffering outweighed my self each time.
My grief would never be larger than her pain.
I imagined taking her into a full warm bath to let the water wash her into stillness. But I did not have the courage. Would they really prosecute the grieving mother of a child that was already dying? According to another hospice nurse I asked, yes they would because it was considered murder and she had seen it.
We thought about driving to Oregon where assisted death was legal. But in our grief, we could not begin to fathom the logistics of such a move. Plus, she could die on the drive there. I wanted her to drift into death as one slips into sleep -- peacefully, and without struggle. Really, we had no other choice than to stay at home and wait and witness the unspeakable horror that was her slow 21-day death.
It is often said in the hospice world -- in an effort to bring comfort to grieving families --that our loved ones give us a gift with their extended dying. While I see and lived the truth in that belief, and while I'm not sure that the Right to Die bill would have helped us because she was a baby, I am relieved that in California, thanks to this bill, we now have the opportunity to spare the lucidly terminally ill from prolonged and unnecessary suffering.
We now can bring dignity to their passing. The gift of their death is not diminished but only lifted with this one final compassionate gesture.
Photo Credit: Belinda Salazar