Adorable Child With Very Serious Health Condition Gives Lessons in Living

03/22/2016 05:10 pm ET Updated Dec 06, 2017

Far from the ocean and high in the Rockies is the last place I expected to meet my first mermaid.

From her parents' living room, a vast and frozen landscape takes your eyes to the snowy crests of the Highland Mountains. To the east looms at 8,300 feet the Continental Divide that for the last 150 years has witnessed, in Butte, MT, some of the most fascinating and colorful episodes in American politics and mining history.

Annalyn is an adorable six year-old girl with a disarming smile. Appropriately for a mining town native, her hair is gold and copper. Her cute round glasses give a pensive look to her expressive eyes. Beyond her lively and beaming personality lies an ineffable depth. It is an exceptionally rare quality in young children. Mostly it is seen in the ones who have lived beyond their years because they have suffered beyond their years.

2016-03-23-1458700774-4162776-IMG_7885.JPG

After Annalyn's birth, elation gave way to shock; there was something terribly wrong with her little heart. Since then, in Seattle, Portland and Stanford she spent more time in hospitals that all the adults I know combined. Early last fall her excellent and dedicated physicians announced to her parents the dreaded news that there was nothing more that medicine could do for her. At the same time she made it perfectly clear that she was irreversibly tired of the tests, the IVs, the smells and the boredom of hospitals. For as long as she lived, she wanted to be home and just to be a child.

2016-03-23-1458700807-5949080-IMG_3298.JPG

The little mermaid was determined to never surrender the joys of childhood. The following lessons come from observing her heroic efforts to reconquer them.

._Imagination is not a form of escape. It is the most human of all explorations. During our first conversation, she disclosed to me, confidentially, that she was a mermaid. A few weeks later she also shared the story with a local TV reporter. Now our whole town is in on the beautiful secret. Even with age we can never surrender the gift of imagination.

._Happiness is much more a choice than we realize. For most of the day, Annalyn is not well. She feels sick after meals. She is constantly hot and thirsty. But during two or three hours every afternoon, she has the courage to recapture the perfection of a little girl's laugher.

._Self-pity is our greatest barrier. Annalyn is much too busy living to waste any time feeling sorry for herself. She never complains about the tragedy of her condition. Her illness is merciless and self-pity would make it even worse. Her life is struggle and mystery, courage and innocence. Her heart may be ailing but every beat from it is still absolutely perfect.

._Time alone is a poor measure of life. Chronology is not a philosophy. Irenaeus of Lyons, a remarkable saint of Antiquity, very famously wrote: "The Glory of God is a human being fully alive." So it is not the mighty universe surrounding us, it is us when we live intensely.

._Children and dogs have a magical bond. To see Annalyn with Bentley, her little Chihuahua, is irresistible. They have their own mysterious language. They share a secret code. Even Tristan, my gigantic English mastiff, became untypically gentle and intrigued by her. He sensed in her little heart a boundless capacity to love.

To the immense credit of Annalyn's parents, Lisa and Wayne, they make the quality of life for their daughter, the absolute priority. It is beautiful and inspiring to observe them very successfully place her joys always before their haunting sadness. It is the hardest thing to do, but it is infinitely meaningful. In spite of the limitations in our human condition, as long as we love, we are never truly helpless.

2016-03-23-1458700838-4293554-IMG_3227.JPG

A few miles from town are the Fairmont natural hot springs. It was a sacred and medicinal site for Native Americans. In a truly grand setting, surrounded by the stunning Pintler Mountains, it is now a destination for tourists in the summer and locals in the winter. The water is so consistently warm that you can comfortably swim outdoors even on the most bitterly cold days. There is flawless happiness in Annalyn's voice and on her face when she describes her water adventures there, especially going down, daringly, a two-story high, twisting water slide.

2016-03-23-1458700882-9977747-IMG_0831.JPG

She has been forced into a terrifying battle, and by all meaningful measures, she is clearly winning it. How precious and fragile is the gift of life!

Never stop swimming little mermaid.