Wednesday, June 25, 2014

Snow and Lollipops: Reflections on caring for the dying while raising children



Over the past year of my palliative care fellowship, I have learned that the discoveries made by the dying are not always that unlike the discoveries of my newly growing children that somehow get lost to us who are hopefully somewhere in the middle. While I am far from a philosopher, it is with humility that I would like to briefly share 5 lessons I have learned from my three year-old son, Ezra, as a reflection of the many wonderful people whom I have been privileged to care for over the past year.

Lesson #1: Snow

“Snow” is a children’s book about the adventures of two little children on a snowy day. They throw snowballs, sled, ski, and build a snowman together. Then in the midst of their fun day, the sun comes out and their snowman starts to melt. Ezra, who has never seen snow, looked at me worriedly the first time he heard the story and asked, “Mommy, am I going to melt?” Even at three years of age he confronted impermanence. He slept in our bed that night, scared, and needing to be held by we who loved him, needing reassurance that he would not melt. We have all witnessed the impermanence of lives lived well, lives lived in regret, and lives shortened too soon. But in these moments of fear, wives have crawled into the husband’s hospital bed, sons have hugged their fathers tightly with dignity, and mothers have held hands with their daughters before their last breaths.

Lesson #2: Lollipops

One day after a long family hike, we gave Ezra a small lollipop. It was red like 3D glasses and seemed flimsy next to his joy. I asked him what it tasted like. He answered “red.” It did not taste like strawberries, cherries, or licorice. It simply tasted as he perceived “red” would taste. As I have grown as a physician, I have learned to appreciate that sometimes things just are. Pain may be pain. Not necessarily sharp, dull, aching, radiating or electric. Just as love can be love and healing healing indescribable and without question.

Lesson #3: Tantrums

Ezra has to eat his broccoli before pizza, share his favorite toys with his younger brother, and brush his teeth before bed. I do not let him sleep at the playground or stay up until 10 o’clock at night. He does not eat cookies for breakfast nor play games on the iPad. Any one of these or a long list of circumstances might lead to a tantrum. While it is hard to acknowledge in the midst of him crying and stomping, nearly all tantrums stem from the absolute amazingness of a world with pizza and technology and friends worth talking to for hours. Tantrums happen because life is good and yet is also filled with boundaries. While no patients have lain prone on the floor screaming in my office, the disappointment of a recurrent cancer or failed chemotherapy regimen is the grief of loving this life fully and facing our own human limitations.

Lesson #4: Easter egg hunts

We celebrated Easter with a small egg hunt. Plastic eggs filled with goodies were scattered throughout the park. While we were preventing his younger brother from running into the street, Ezra took the liberty of exploring the contents of each egg well after his chocolate quota had been reached. When we finally noticed, Ezra continued, saying “uh-oh, I opened another one” as he peeled off another chocolate wrapper and quickly popped it into his mouth. Over the past year, I have witnessed hope. Simple hope to eat one more chocolate as well as vast, inspiring hope for a cure, hope for reconciliation, hope to have years, months, or even minutes more to live even when being told no.

Lesson #5: I’ll miss you

Every night we read books together, sing 2 songs, then I tuck Ezra into bed, give him a kiss and say “I love you. I’ll miss you. Sleep well.” Because even after a difficult day, the time between good night and good morning starts to feel long and I miss the boys sleeping in the room beside me. I have seen many people die over this past year of fellowship and years of residency, but I remember most the big, large, deep love I have seen fill hospital rooms and homes. So on behalf of all of those who were lost this past year, I write with a full heart, to our loved ones who have gone before us “We love you. We miss you and sleep well.”

by: Laura Koehn (@lauraekoehn)

4 comments:

Ruth Hill said...

Very well written. Thank you for sharing.

Mary Warden LVN said...

As a hospice nurse for the past 12 years, this really hit home.....Food for thought!! Mary Warden LVN

Danielle Sara said...

Beautiful post .. sweet and wise ..

Linda Payne, RN said...

Beautifully written and extraordinary in it's insight.