Friday, July 22, 2016

Journaling Joy


In the dark of winter, aware of the approaching two year anniversary of Larry’s kidney failure, I decided that one antidote to the anxiety of care giving and waiting and not having much certainty about our future, would be to record my joys. I trusted that when I took a moment to examine the small things that make up each day, I would find joy. Somedays it has been more challenging than others. On July 22, the 204th day of 2016, I have only missed one day recording an experience or an observation that brought me joy. 
In the last week, my joys and thus, my moments of gratitude, have included the taste of vine ripened tomatoes off my own vine; the grandeur, beauty, and mystery of Haleakala, “the house of the sun,” on the island of Maui; the beauty of my neighbor’s flowers; rainbows; and a good night’s sleep in my own bed. Often it has been the laughter and love that comes to me through my grandchildren, the gifts that my daughters, step son, and daughters-in-law and son-in-law bring to my life. I celebrate their integrity, and record the names of others who exhibit kindness, generosity, and compassion. Quilting, reading, writing; friendships, old and new; the natural world; the color blue: all bring me joy. When I pause, I recognize that my life is filled with privilege and abundant blessings. The challenge is to remember, to value the smallest of things.

The smallest of things....
My guess is that the PD nurse (PD stands for peritoneal dialysis, and there is a nursing specialty that focuses on home dialysis patients) on call on Maui considered that she was only doing her job when she answered her phone (in the shower) on Wednesday, July 6th. We arrived at our vacation destination to find that the seventeen boxes of solution that Larry would need for the next ten days had not been delivered. Our twelve hours of travel meant he was overdue for “an exchange” (a manual dialysis treatment), and there would be nothing for the machine overnight. We had no way of knowing when or if it was to be delivered. 


Her name was Shari, and we never actually met her face to face. After drying off, she dressed and went to the Dialysis Center, gathered enough supplies for Larry for three days, gave us directions, worried for us about the hour it would take us to get there, and had everything loaded on a cart ready for us to get it to the car. She checked on us the next two days, and ran interference with the delivery company. We weren’t on their schedule, but they might get to us on Friday, the day of the wedding. That was unacceptable to us, and to her. The boxes came Thursday night.
It may have been her job, but Shari was kind, considerate, and compassionate. She brought joy to our day.


Sunday, July 3, 2016

Tethered

Independence Day has an odd ring this year. Reflecting on a life of interdependence.
We are tethered to a machine. It is called the Cycler. Overnight, for ten hours, with plastic tubing from machine to toilet, plastic tubing from stomach port to machine. Bodily waste drained out, peritoneal cavity filled with fluid, left to dwell for ninety minutes, drained out, refilled, four times, machine sometimes buzzing, beeping, clicking, always humming. Larry cannot walk any farther than fifteen feet. Enough to reach the bathroom, not enough to leave the room. A machine to do what healthy kidneys do. Dialysis. It is all miracle and mystery. The process keeps him alive. The cycler and two boxes of solution accompany us for any overnight away from home. Trips require planning, fifteen boxes are sent ahead, delivered, and waiting.

We are tethered to clocks and calendars and record keeping. To bed by 9, awake at 7:00. Home each day by four pm for another exchange of fluids. Monitoring blood pressure, heart rate, taking temperature, recording numbers.  Inventorying supplies, reordering once a month, sterile gauze, face masks, antiseptic solution, mini-caps to close the port, antibiotic for changing the dressing, hand sanitizer, bottles of liquid soap. Placing the order, planning to be home on delivery day, between the hours of 10 and 12. Two monthly appointments for lab work, to receive a shot, stock up on protein supplement, to see the doctor and nutritionist and social worker and nurse. We are tethered to the medical community. They help him stay alive.

We are tethered to each other. No space for independence. Learning interdependence. Working to stay cheerful and optimistic. Tired, always tired. Waiting for the call that would change everything. Tethered to our phones. Always tethered.