Don’t Waste Time

I have been meaning get started with my blog that will document Michael’s journey of Kidney Failure doing Conservative Care...letting the disease progress with palliative care rather than dialysis. 

I thought perhaps I needed to write an introduction to how he arrived at this junction but the task just was too daunting to me these days. His journey has been so complicated, with twists and turns and brief stops at enjoyable places. 

So today, I just decided to get on with it. Just start with one small step and write one small post. That is how every journey begins. 

This disease is sneaky. It leaves little hints that it is there, yet not such blatant announcements that one might say, “yes, I am very ill”. The sleepiness is the biggest  hint. 

When Michael wakes up, we spend an hour or two talking while the rest of his body catches up to the fact that he is awake, Sometimes the discussions are deep, some times just silly stuff.

Recently, there has been more silences and longer pauses as he mulls over some comment. I have to be patient as I wait for his answers. 

These days we have thoughts that maybe he will be strong enough to make it to our annual trip to Arizona. It is a long drive. Last year we took the 24 hour drive in four 6 hour days to preserve Michael’s energy. I packed food/ meals to eat at our hotel rooms because, for him, eating out was too much after our travel day.

This year, he is weaker, so I am not sure even this is going to be possible. But the hope stubbornly lingers. Yet, 4 months in the future is a long time when your kidneys are sitting at 14% and you have chosen not to do dialysis. 

After we get up, I make some breakfast/lunch. Some days he doesn’t wake up until 10 am and the time in bed pushes our meal more into the lunch time. After breakfast, it is not long before he gets tired again. Back to bed for a 2-4 hr nap. 

Days go fast for him when he sleeps 12 or so hours a day. Time moves fast when you are not sure you will see another summer, another fall, another winter or another spring. Each beautiful moment in time is sweeter. 

When my Mom’s Dad was older, my parents travelled a lot. They had always travelled through their life, this is what they did. When they would go out of the country, my Grandpa would say to my Mom with a sigh, “Well, I might not be here when you get back!”

One year my Mom had just visited him on a trip back from Columbia where my parents were teaching school in a mining camp. He gave her his same goodbye. When she got off the plane in Columbia there was a message for her that he had just died. She had to turn right around and go back. 

When I go out to do errands, we say our goodbyes each time. 

With a little twinkle in the eye and a rueful smile he says, “Well, I might not be here when you return”. 

It is true for us all but seems a little more real to us.