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.

Finally, a post released 2 days early

'Twas the night before Christmas, when all through the house,

One creature was stirring, but it wasn’t a mouse.

The children were nestled all snug in their beds,

As I looked and found his hand under head,

I peeled open a finger and with a muted click,

I drew enough blood to fill the test stick.

As I left the room there arose such a clatter,

I ran to the window to see what was the matter.

Up on the rooftop I heard the hooves click,

I knew in an instant it must be St. Nick.

I crept down the stairs and patiently waited,

He saw me there standing and quietly stated,

“Oh my, I wasn’t expecting to see you,

Christmas eve meetings I don’t normally do.”

I smiled at him happily and noticed his sack.

“Santa,” I said “you can take it all back.”

With shock and confusion his mouth opened wide,

His curiosity and wonder he just couldn’t hide.

“Santa, you see, there is only one thing we want this year,

but it does not seem to be a wish you can grant, we fear.”

“Our little boy upstairs dreaming of a fanciful trip,

Lives each precious day in a disease’s tight grip.”

“The gift we really want is to take diabetes away,

But we already know that tonight it will stay.”

Santa lowered his head as he pondered a thought,

He knew too well that this matter has us fraught.

A kind smile on his face and a twinkle in his eye,

He said “There is no wish gander, this I can not deny.”

“Sadly, you are right, there are some deeds I can’t do,

But I leave this for your family and you.”

“A Christmas of joy and family together,

Aside from your wish, nothing could be much better.”

He placed with care his gifts under the tree,

Bid me good night and left fast as could be.

Dawn arrived swiftly and the day was at hand,

Over was the wait the children couldn’t stand.

They cheered as they waited to open their first present,

The moment so perfect, the gift missing I could hardly resent.

The old man was right, my wish not granted indeed,

In stead, for the time, we have what we need.

Blessed by the miracles that gave us this day,

We have too much to celebrate to let D in the way.

I will wait again next year with my wish held steadfast,

That once and for all, diabetes becomes a thing of the past.

He's too smart for my own good

   Jonathan's a bright kid (and he better be if he wants to make good on his plans to become a doctor), this was no news to me.  Starting the pump just before he turned 5 I figured we wait a good four to five years before we would start teaching him how to use his pump.  Well... little man had a different plan apparently.  I guess seeing something done three or more times a day, seven days a week, for three months, he was bound to catch on to a thing or two.

   A few weeks back, Jonathan began insisting he could lock his pump himself - and promptly demonstrated the swift button presses to do it.  At first I was a little concerned that he would push any buttons, but knowing how obsessed he is about having his pump locked I thought this would be OK should an occasion arise where he was without us and noticed his pump unlocked.  Content to have him maneuver his tech to a safe place, I let it go for a while.

   Monday night, much to my horror, he unlocked the pump.  "Hmmmmm..." I thought, "this isn't good".  So we had a little talk about who unlocks and who doesn't.  He happily agreed.

   Last night, when it was time for his shower, I was disconnecting him and he proudly told me that he knew how to suspend his pump.  I paused for a moment and then decided I should know if he really could.  I handed him his unlocked pump and S#!T  Click click click - beep.  UH OH!

  While I'm impressed that he picked this up and does it without even seeming to have to think about it, I'm totally horrified that he could suspend it and go hours without insulin... or even worse yet... the unthinkable.... give himself up to 5 units without a single carb to balance it (5 is his current max bolus setting and I don't think he'll be changing that without an insane amount of bad luck).

   And so my dilemma...  Do I start teaching my five year old son how to use his pump properly or put the fear of God into him that if he so much unsnaps the case a holy hell-fire will rain down upon him?  I figure the latter will result in some sort of emotional scaring that will take reams of therapy to correct before he can ever look at the pump again, but the former just doesn't seem right for us at this time either.

   So with some serious thinking and a nice chat with a great friend (who is also a nurse, CDE, and is pretty much the go to gal in the clinic at the hospital) I think I'm going to go somewhere down the middle: there will be Jonathan jobs and Mommy-Daddy-Nurse-Grandma jobs.  Jonathan can keep his hands clean before testing, Jonathan can test and Jonathan can unlock and lock with Mommy or Daddy present.  Mommy-Daddy-Nurse-Grandma are the only ones who can push other buttons, and most importantly - Jonathan NEVER activates insulin (by the way, I know he knows how because he talks grandma through it step-by-step).

   Even giving him a little responsibility with the pump specifically is terrifying.  He could test all day long for all I care (as long as he is at least testing), but to push pump buttons.... I think this is what handing over car keys someday might feel like.  So hopefully, for my sanity, at least a few years of pump drivers ed and then we'll see where we go from there.