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.

Hidden in plain sight

   All I saw was about 4" of tubing and I knew he was one of "us".  This morning, two pews in front of us I noticed the short loop protruding from under shirt and I knew what was at each end of it.

   It's interesting, I think, to stand back and look at the world from outside the DOC, the support groups, the fundraisers, the clinic appointments, and to for a moment take note of and appreciate the level of unawareness there is.  I'm willing to bet a weeks worth of lunches that not even my aunts and uncles on either side of us even noticed let alone the rest of the congregation.  Jonathan saw the Medtronic clip on the outside of his pocket and knew right away what it meant.

   It's almost like a secret society.  If you know what to look for, it really doesn't take long to find it.  Somebody has their pump clipped in their pocket.  Somebody has a blue circle pin on their jacket.  Somebody has a sneaker on them somewhere.  Yet at the same time, when we go back to normal speed it all gets caught in the blur.

   Shortly after Jonathan was diagnosed, I found out that someone I had known, more of an acquaintance, of about 2 years had been a Type 1 for almost 20 and I never would have guessed.

   I guess my point is, it's all around us.  Aside from our own D battles, if our children (and some of us) didn't have diabetes, it would still be there and as prevalent as it is, it's still hidden.  There are no braces, or crutches, or chairs, or special transportation, or physical differences or interpersonal challenges.  It's all hidden on the inside, sometimes only as deep as a t-shirt.  No wonder it's so hard to get people to understand and remember.

   But I do have hope.  I do because I am seeing it more.  I'm seeing more stories in the paper, and online, and TV, and radio, and I hear people talking about it.  Maybe I'm overly optimistic, but some days it feels like a snowball that is going to roll out of control and avalanche the world with information and awareness.  At least I hope so, because in order for them to help, they have to know.

   November 14th is World Diabetes Day.  Tell everyone why next Sunday is so important.  Tell them why it's a BiG blue day and keep pushing that snowball.