Inspired by Love and Service

"The beauty and charm of selfless love and service should not die away from the face of the earth. The world should know that a life of dedication is possible, that a life inspired by love and service to humanity is possible." - Sri Amritanandamayi Devi

 

This love and service are perfectly expressed in nursing care, whether it is a family member caring for a child who is sick with a virus, or a professional nurse with advanced training, serving in an intensive care unit. One of the most tender aspects of this love and service to humanity is seen in hospice nurses. 

I am privileged to know a hospice nurse who was trained in the ICU, and moved outward from there to care for people with life-limiting illness - those who choose to forego extraordinary means of prolonging their lives, preferring to focus on quality of life over quantity.

When we were faced with Katie's diagnosis of relapsed adrenocortical carcinoma (and with it, "terminal" cancer), Seattle Children's Hospital offered to call hospice and request care for Katie in our home. We accepted, in shock and gratitude. Amy came over a few days later with the hospice social worker, Dee; they explained everything and answered our questions.

 

In many parts of the country, hospice is not available for children. One of the reasons for this is the fact that - even among hospice professionals, where death is viewed as a natural part of life - the death of a child is a very hard thing to witness and accept. Fortunately for us, Amy knew that "The LORD cares deeply when his loved ones die" (Psalm 116: 15), and she came alongside to teach and help us, providing skilled hands to deliver that sacred care.

Over the next weeks, Katie's condition grew more life-limiting as the disease advanced in its unique and terrible way. During that time, Amy was always just a phone call - and a few minutes' drive - from us, all day and night, every day. She consulted by telephone, made home visits, provided comfort care and listened, in the most compassionate, understanding and devoted way. Katie was not happy to be in hospice care, and adopted what we call a "spicy" attitude to Amy (calling her "the quack" when she was out of earshot), but Amy understood this and loved her. 

 

We will be forever grateful to Amy for her support in some of the most tender and sacred moments of our daughter's life and death.

 

Amy writes a beautiful blog, and has just published an article in the American Journal of Nursing which I highly recommend; it can be found HERE. For more insight on this subject, check out this article in The Week magazine (an excerpt from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. ©2013 by Katherine Anne Butler).

 

When one you love is sick or dying - whether you are a family member, friend or professional caregiver - your gifts of love and selfless service are essential. Your presence can bring peace and comfort - even if no cure is possible - and in so doing, you act as the very hands of the Holy One (Matt. 25: 36-40). It is a sacred vocation.

Goodwill from Katie

When Katie found out in July, 2007 that the cancer had returned, in the form of an inoperable tumor, she did something very powerful. A day or two after she got the news, at age 12, she started to write her will...on notebook paper, in pencil. She thought this through by herself. She included her favorite possessions, her money, clothing, books, etc. She was quite specific.

She said that she regretted not being able to leave David something big, like a professional baseball team (I told her that since no one in the family has that kind of money, no one would dream that she would do such a thing anyway). This was after watching the movie, "Little Big League," in case any of you know about it.

One of the most interesting things about her will is how she divided her money. She had a little savings account, where Christmas and birthday money was deposited over the years. In her will, she left half of the money to charity: the Goodwill, to be exact.

We have often donated outgrown clothing to the Goodwill collection site near our town. She and David have been with me on these trips. I don't recall ever discussing this beyond, "We need to make a stop here..." and dropping the items off. But something about it stayed with her. She knew about other charities, because we have decided as a family which charities to support, and have discussed what they do with the money that we give.

The trip to the bank to empty her account was not pleasant for me. The teller was lovely and kind when I told her what I was there to do. She asked how old Katie was, how she died, and and got tearful when I answered her questions; it was awkward. I am a helper; I felt the urge to comfort her. I told myself, "It is not your job to comfort this lady for the death of your daughter." So I stood quietly on my side of the desk, as graciously as possible under the circumstances, and waited as she counted out the money. Then I thanked her, and took it home.

I contacted the Goodwill in Seattle, and after a phone call and a bit of correspondence, I wrote the check, according to Katie's last will: $642.00 to Goodwill. It is a lovely thing, that a 12-year old who has just learned that she is dying, would think to donate half of her money to charity. I love basking in that thought, and admiring Katie for doing it--except that she is my daughter, and I would rather have her here, alive. So actually writing the check and the accompanying note was very, very difficult to do. It felt final. It is a final act, one that I am carrying out for my beloved daughter, because it was her "last will," and she is not alive to do it herself. These acts of closure feel kind of cruel.

But what a gal! She took what power she had, and used it positively. You go, girl!

Article in the Goodwill Ambassador publication about Katie's gift