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.

One wish

   Aside from publishing this post today being significant in that I squeak in without a full months absence from the DOC scene; it's also a day that I feel I should (to a certain extent) be entitled to get want I want.

   I really only want one thing.  I know I'm not the only one who wants it.  I'm willing to bet that just about everybody reading this wants the same thing.  You could say it would be an ultimate one size fits all.  And if I really wanted to play it up for the holiday season, I could say that it's not even really for me at all - but still, it's what I really want today.

   Amongst all of the things that I have learned in the past fifteen months and change, I've re-learned and probably to a finer degree, what I really need... the things in my life that are really important to me.  I guess when you have a child (or children) whose lives are at risk every single day and the unthinkable can happen even without so much as a warning, certain things become amazingly clear.

   I need my family more than anything else.  There are a lot of difficult and hard possibilities that we could face - especially in these often tough times - but even the threat of unemployment, foreclosure, and persistent creditors I think pails in comparison.  Thankfully we've been greatly blessed and have weathered the past few years well; still I can't imagine anything that could have happened that could come close to the horrible reality that has hit too many families.

   I realized a few years ago why I am here.  I didn't become the famous architect that I had grandiose dreams of in my younger days.  I did not amass great wealth and luxurious belongings.  I don't while away all of my time with globetrotting and fanciful events.  All of the things that I once believe were going to be my benchmark of success.  Instead I was blessed with something far more deeply meaningful.

   My legacy will not be a tourist attraction, it will not be a great literary work, it will not be a piece of stone or canvas for people to adore.  Indeed, my legacy may prove to be more profound than all of those put together.  It turned out that what I wanted was not what I really needed, but by grace and luck I stumbled into something far better than I could have ever imagined.  What I, with my wife, brought to this world are two beautiful children.  Full of wonder and curiosity, charm and joy, love and kindness.  In retrospect, I find my dreams of years ago mostly silly now as I know that those things could have never brought me as much as these two little miracles.

   I think that last year I was probably still overwhelmed being only about 14 weeks in, but this year as it got closer and closer I still could not think of anything else that I wanted.  Even today when people asked, only one thing came to mind.

   Today I realized that until there a cure, I will never blow out another candle with any other wish.