I Thought it Would Get Easier

  I don't think I'll ever forget last year when I started my big JDRF fund raising push for 2010.  I remember making that first video and how tough it was; not technically, but emotionally.  It was even hard to write the e-mails to everyone telling them about what Jonathan and so many others go through on a daily basis and what the real risks of diabetes are even though we try to not dwell on them every day.

  So I don't know why I thought this year would be any easier.  Jonathan is a year older, a few inches taller, and more amazing than ever, but when I have to sit down and really think about it I can't help but hurt when I think about the issues he may have to face.  I remember just how much I hate this f*^%!#@ disease and how really helpless and small I feel next to it.

  Maybe it's a good thing though.  Maybe, if I can focus a little, all those nasty feelings can be channeled to fuel the drive to do something better.  Use the dark side against itself.  I don't know, I guess we'll have to see how that works out. In the mean time, I'll just keep plugging away until I get what I really want.

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.

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.

Am I not as afraid as I sould be?

The question crossed my mind the other day and it struck me as odd that I'm not as afraid of this as maybe I ought to be.

 

A good portion of my friends, co-workers, and people that I interact with every day have children.  Even a large chunk of those without children of their own have a niece or nephew that they are close to.  Inevitably, at some point or another, the topic of diabetes comes up.  Maybe because it has such a prominent place in our lives, maybe it's because I love telling anyone who will listen so that word gets around and hopefully that leads to support of groups like JDRF, or maybe it's both.  When you tall a parent who knows little to nothing about Type 1 Diabetes what can happen if it's not properly managed and they realize a potential result is every parents worst nightmare - the look on their faces is sometimes staggering.

 

This morning I was having a conversation with a mother that garnered such a reaction that I was taken aback and realized that maybe I don't "fear" diabetes as much as I should.  I know very well what can happen if blood sugars are left to run high long-term; and what can happen if they dip too low.  Catching Jonathan at 2.8s (50) and 3.2s (58) a few times over the past weeks (even at 2 hours post injection when he still has active insulin), I know he was potentially headed towards a dangerous level.  I even shocked myself last Saturday when I testing Jonathan out of suspicion and found one of those 2.8s, calmly walked in the house, grabbed a cup of juice and gave it to him without even thinking about what had to be done, just doing it.

 

Then it hit me.  As weird as I feel about not being afraid, I have to think that it's likely because I've spent the last almost-eleven months living with this, that I've tried to read and learn as much as I possibly can, because I have open and frank conversations with medical professionals, parents and others with the disease, and that we have a fairly good handle on things with Jonathan in terms of monitoring and managing.  I would by no means profess to be even remotely an expert, but I do feel that I know my enemy and I have a healthy respect for it.  That being said, I don't want to come of sounding cocky, my confidence is never 100%, but it's not non-existent.

 

My wife has concluded that I have OCD.  I really don't think that I'm obsessive about diabetes, but I am always watching, testing, and calculating (carbs and plans).  I would have to say that diabetes pops into my head more than sex, beer and tv combined.  Despite my wife's diagnosis, I think I have to sum it up that I traded fear for knowledge and involvement.  I'll admit, I'm a bit of a control freak too, so that probably factors in as well.

 

What do I do when things get tense?  I burn through test strips like they were free (I love Green Shield for that one).  I had a co-worker recently surpried to learn that I'm not an insomniac, some nights I get up every hour to check blood sugar.  A double-digit test day is not unheard of.  One of the ironies is, Jonathan's best nights are often my worst nights.  On more than on occasion he has been about 5.5-6.0 (99-108) straight through the night, which is great for him, but without knowing what is little body is going to do next I can't let hours pass and hope he doesn't drop 4 points in a couple hours.  Maybe a CGM would help, but then again I would probably lay there just waiting for the alarm (besides - not covered.... Damn Green Shield).

 

As I ramble on here I realize that some may argue it's really fear that compels me to do what I do.  I guess I don't really know; six of one, half dozen of the other?  What I do know though is that compared to the trembling puddle I was less than a year ago, I feel that I'm on more solid ground now.  Of course there are bad days, and there will almost certainly be days worse than anything we've seen yet to come, but not cowering in a corner has made a huge difference.  Our clinic, our friends, our JDRF community and the access I've been afforded to the inner working of that organization have all made such a huge impact in my life and in turn in Jonathans.  If I had one piece of advice for any newly diagnosed person or family it would be this: learn, learn lots.

 

Jonathan and his sister as our real top prioirties in life so it goes without question that whatever needs to be done is done.  Even if it means I look like crap in the morning, I really don't care, so long as he gets to stay on top of the world.  Maybe somewhere in here I answered my own question.  Maybe I'm so deep in there there's just no time for fear, maybe that's it.  Whatever it is, and even if I never answer that question, so long as we can keep racking up small victories I'll be happy.