Tuesday, February 15, 2011

Kobayashi Maru

The no win scenario...

   I think I've been more aware these last two months than ever before that this is more about compromise and give and take than anything else.  Some days are better than others, that’s for sure, but when you fully believe that everything is going along perfectly fine and that all comes to a screeching halt in one split second, it seems to have a profound effect.

   About four weeks ago, Jonathan had his clinic appointment.  His A1c was exactly the same as it was in October, and that was up over a full % from August.

  “What was I doing wrong?” I asked myself.  Now I know that these appointments are not supposed to parental report cards, and I really do not believe I took it that way, but at the same time I was doing everything I was supposed to and we were only moving backwards.  Not only that, I was under the impression that we were doing really well and then I was abruptly told that it was in fact the opposite that was true.

  So, after leaving that appointment with new pump settings, new targets, and a new mind set, Jonathans average BG reading is now 25% less than it was a month ago and there are very few arrows at the top of the chart (actually had a two week run with none).

  We’re in a new groove, but I still have this nagging feeling over my head that wasn’t there the first year and a bit.  We can’t win, not truly, a stalemate at best.  Keep the monster at bay.

  I think Jonathan has picked up on it too.  He asks every so often “When I’m [insert number here] years old, will I still have to have site changes?”  The one that really caught me off guard was when he asked last week “Daddy… if I stop doing site changes, will I die?”  When I heard that I just about did.  I’ve tried to explain to him amid protests and pouts that the site changes are necessary to keep him healthy and safe, but some how he managed to equate that to staying alive.

  In a way, it seems the first year was easier.  There was shock and naivety and progress in the right direction.  I knew that the more his A1c went down and the better reign we thought we had on his BGs and carbs and exercise and emotions… the harder it would be to not have a “setback”, but even at semblance of equilibrium the scales seem to tip every day and an illusion of consistency is no more.

  I guess my good news is that I seem to be seeing some sort of light at the end of the tunnel.  It's a long tunnel, and I'm on a treadmill going the other way, and that light is probably a train, but it's not as dark as it was.  I'm very fortunate to have some wonderful D friends (online and off) who have been around to keep me up, even if they don't realize they were doing so to such an extent.

  I still hope and pray that this terrible disease is ultimately obliterated and live will go back to the other normal, but I think in the mean time I'm a little more grounded and ever so slightly more prepared to get my head back in the game and keep running up that hill.


  1. Oh Marc...I hear ya. We are over 4 years into this. I think it really hit me, that this "wasn't going anywhere" at around year one or so, which set me "back" a bit. We all just have to keep putting one foot in front of the other...and help our pals along the way. Love to you and the family. You ARE doing a remarkable job. This is as high maintainence as you can get in the Chronic Condition department.

  2. Some notes & observations from a different point of view...YMMV.
    Kobayashi Maru. If there's one lesson i learned from that it's that you don't let the game play you. I focus on my own outcome and make that happen, ignoring the "rules" and "regs". So for my life, I don't want to mire myself in the fact that both my sons are dead, an unmutable fact that most likely will never change. Instead, I scratch it up to something that happened, pile up all the knwoledge & lessons learned & throw it on my back with all the other crap I've collected. And then I make a New Normal.

    The New Normal is framing the existing scenario as "the way it is" and dealing with it accordingly. It's not about shifting how I think about things, it's defining a new way of thinking. A subtle but powerful difference.

    It's the difference of "I want to beat the Kobayashi Maru scenario according to it's guidelines" and "The Kobayashi Maru is a theoretical program problem that needs a solution".

    Ok, I'll take the long way down from my soapbox. FWIW, I'm proud of J for asking the hard questions, and also of you for explaining.

  3. Oh Marc, my heart just broke with you when I read that.

    Keep in mind that his A1C may have been a little lower due to honeymooning. If he's out of that now... then its bound to go up a little.