19 Dec Live From Dialysis, Post #2

About a week ago, Venetia and I were amidst our evening ritual with our girls: dinner, bath, bed. We were all hovering around the running bath, I think Celeste had already gotten in, I was halfway through a negotiation with Aviva for her to follow… and Venetia asked me some question…”after dialysis tomorrow, could you pick up some (blah, blah, blah)” and then Aviva, our three-year-old, asked her follow-up question, “Why do you go to dialysis, daddy?”

Let me back up a little…

It’s been about five months since I started dialysis. It had been about eighteen months prior to that that Venetia and I watched my kidney numbers slowly declining, unresponsive, even as my diet did a 180, I met with nutritionists, naturopaths, “holistic” nephrologists and other very well respected specialists, I took twenty supplements a day to keep everything in balance… NOTHING HELPED.

Ok, maybe that’s a touch dramatic.  There were numerous other benefits, just nothing changed the decline in those kidney numbers…

And as we struggled through all of these experiments, somewhere along the way I made a decision not to burden our kids with this stuff.

I remembered back to high school… a good friend’s father had health issues that I vaguely remember to be kidney-related… and I remember how much it scared the family (there were four siblings and I remember the looks from at least three of them).  I knew I wanted to spare my girls this ongoing fear (of losing their daddy, etc) and that they were definitely too young to grasp what I was going through.  In my mind, there was zero hope of nuance, of informed hope, of determined, optimistic, engaged patience… Venetia and I and our close circle of support had strategies, we had information, we had case studies and stories…  We knew this was a scary process, but we also knew that kidney failure is a fairly well-rehearsed rescue process…  our kids would know none of that.

And so, at least initially, our lips were tight around all things medical. I was in and out of the hospital and testing and evaluations and dialysis and Venetia reassured our girls that I was “at work.”

But then, over time…

And so last week, when I heard the word DIALYSIS escape Aviva’s lips for the first time, I was .. well… overwhelmed.

I immediately reprimanded Venetia for using the word, a parenting sin of my own making, a sin I had committed so many times myself over the course of the past two plus years.  This was a fantastic partner misstep: blaming the love of my life for a tiny “error” and one that I myself am at least equally responsible for…

Luckily, the moment didn’t ‘blow-up’. We changed the subject and it set off a thought process for me that has lingered for easily a week:

• How long do we keep this up?
• Is it really saving our children any suffering?
• Now that my health has somewhat stabilized (we know what dialysis is like, we see a path to a transplant, etc) do we keep up this charade that daddy has to “go to work” three times a week at 5 in the morning?

So, I tell this story because I want to hear how others facing chronic illness handle it with their children…

• At what age are these conversations appropriate?
• Do you make it “a conversation” or do you just let them know what’s happening without making a big deal?

Remember, our girls are two and three. Half the time, they spend easily half of their creative energy pretending to be doggy and owner and they spend the other half either chasing or being chased… So I have no illusion that they can fully grasp what is happening with my health… but I also want them both to experience how health challenges are actually inevitable for all of us at some point, and that they are not, by any means, the end of the world.

I welcome your two cents on this… thanks for reading and for supporting me on this journey.