palliative care

Bottled Tears

“There are worse things in life than death.”  That is a statement I have heard my Mom make many times.  I didn’t really understand the significance of her words as I recall the first encounters of her making them.  But through the years, I knew what she meant and I knew that those words were her sense of peace. My Mom showed up to the scene of my brother and my accident over 25 years ago now.  Her senses received the reality of immense tragedy.  Smoke.  Fire.  Wreckage.  And amidst it all lay her little boy’s dead body.  There was nothing within her power to change what took place there.  Nothing she could do would bring him back.

How does one process an incredible loss?  How does one begin to cope?  I know that my Mom’s walk with God carried her through that unimaginable pain and grief.  I also know that she was at peace knowing my brother was at peace.  In a time that no one could have ever anticipated or prepared for, it helped to look for the goodness, even when it seemed there was none.  That goodness was that my brother Jon did not suffer in his death.  Jon’s days were full. He had a life of quality, despite such short duration.

I find myself confronted with this scenario in my career as a neonatal nurse.  I have observed such unfair realities of mommies and daddies faced with losing their baby.  My heart breaks, between my sympathy for the family and my compassion for the baby.  There are times their little bodies are put through so much, with every effort to save their life.  Where is the line between saving a life and a peaceful passing?

An article featured in Advances in Neonatal Care, titled “What Neonatal Intensive Care Nurses Need to Know About Neonatal Palliative Care,” explores this ethical issue. “Advocating For a Dying Baby, Assessing and Managing Pain in a Dying Baby, and Helping Parents Say ‘Goodbye,’” are just a few of the twenty-three items identified as providing good palliative care in neonatal nursing. But what left an impression on me was that although 40% of graduating neonatology fellows “felt well-equipped to discuss predictions of morbidity and mortality and treatment options, they felt less well trained to address the more emotional and social issues related to palliative care, such as discussing families’ spiritual and religious needs.”

When there is nothing within our power to change the circumstance, what need is higher than those emotional and spiritual? There is no black and white.  But there is prayer.  And I pray over each of the babies I care for.  A recent assignment had me specifically praying for quality.  It’s a prayer fueled from those words spoken by my own Mom; my Mom who knew that there was a God greater than her grief.  He held her as He does her son, as He does the babies and their precious parents who say goodbye.

Psalm 56:8 (NLT) “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.”

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