February 20th

Everyone has days in their life that they will remember with startling, painful clarity.

For us, that day was February 20th.

Until that date we were having a pretty wonderful few months. The boys were thriving -  all of them (if you don’t count William’s episode of Nephrotic Syndrome after the New Year). Harry was loving school, I enjoyed having William at home because he never really took to school in the same way his older brother had, Ben started preschool and after a little bit of a rocky start soon became the class funnyman, Edward started being, well, older and therefore easier, and the days were (mostly) a joy with my sons.

But Matthew was still travelling more than I cared for and working long hours, often not back before 9 o’clock in the evenings. We live in a beautiful rural area but we are otherwise basically suburbanites – a two-car, rat-race-dependent, time-poor family with zero work-life balance for either Matthew or me because he slogs away at work and I slog away at home with no help.

But we hoped it would only be temporary. Our longer-term plan is to buy a big plot of land and live self-sufficiently as far as we are able to, to spend more time together as a family and to do work worth doing – fulfilling work that contributes as much to society and self-worth as to the economy – and the children to be increasingly involved in similar kinds of work as they grow up.

At 1.19pm on Friday, February 20th the consultant paediatric nephrologist came into the ward where we had pushed three beds together so that Matthew, Edward and I could sleep next to William after a dreadful night during which a catheterisation procedure went very badly wrong leaving William screaming in pain as they attempted to get a massive tube into him without any anaesthetic or sedative. After hearing him begging me over and over with terror-filled eyes for it to stop, his whole body shaking with fear,  I honestly thought I would never experience anything worse. But I remember looking at the clock on the wall as the nephrologist told us that the biopsy had shown signs of ‘mesangial proliferation’ which meant nothing to me and delivered the diagnosis of FSGS and I remember then a single tear falling down my right cheek because I knew what that meant for my son.

February 20th put our lives into perspective. For certain, I no longer sweat the small stuff. But more importantly there is no waiting for ‘one day in the future’ for us as a family because William’s childhood and future is so uncertain. We have to live for now and do what we wanted to do in the future now because the future may be more full of hospitals than I care to think about. We want to have the life we want despite William’s disease and to have it sooner rather than later because of his disease.

So we have this idea and it sounds relatively easy to achieve but it doesn’t seem to be within our reach at the moment whichever way we try to make it add up.

But it seems more important than ever that we work out how to achieve it.

Tagged as: chronic kidney disease