Delusion, a chimera in my brain, a fancy, my ignis fatuus

"Normal is what everyone else is and you are not." Dr. Soran - ST:Generations 

    I was told shortly after Jonathan was first diagnosed that we would "find a new normal".  At the time, I thought that meant that we would integrate Diabetes into our lives and eventually the wound it opened would heal around it and it would just become a part of us.  In a way I guess that's kind of what happened, but I think it went a little beyond that.

   Yesterday, as I was approaching the verge of a mini-mental collapse over a bunch of BS at work, I sat down with someone to talk and they were surprised about how stressed out I was over the matters at hand.  They said, "well, I'm sure things at home aren't helping either."  I knew they were referring to dealing with my son's Type 1 and at first I was about to dismiss the notion that it could be a major contributor, but then it suddenly hit me - my little boy's life hangs in the balance of decisions I make every day, he's basically on life support and that which keeps him alive could kill him.  We've barely had a solid night's sleep in 20 months and there are many more nights to come...  And then it smacked me like a ton of bricks, somehow, some way, this had become "OK".  And I thought to myself "WTF!?!?!?!"  This is NOT OK.  This is not what a 5yr old should have to live with, this is not how a family is supposed to be managing their lives, this is totally wrong.

  I think what happened is (and I don't want to give it up, but I think I'll have to change my approach) in all my efforts to make life an normal as possible for Jonathan and the rest of the family, and trying to assure people that things are under control and all is well, I somehow tricked myself into downplaying just how perilous and damning this thing can be.

   Then, just last night, after a day of phenomenal numbers (like non-diabetic numbers), Jonathan was a little high at 10pm (13.5 / 243), so I pushed his buttons and didn't really give it a second thought.  At 2:30 this morning I did my nightly shuffle into his room to find 2.9 (52).  Oh $#!^!  3/4 of a cup of milk and 40 minutes later he was 5.9 (106) - 5.7 at 6am, and 5.9 at breakfast.  So what the heck would have happened if I hadn't done my nightly rounds?  I shudder to think, especially after a Princess' recent horror.  I've never questioned a 13.5 before, that's not totally unusual, and normally a wonky reading is over 20 and that needs to be re-checked.

   This morning I got another one.  Part of my morning routine is to check the mail, weather, and updates on my phone before moving on to get ready, and there it was on the top of my news feed:

"In my house the "medicine" that could save you, could kill you.  In my house juice boxes save lives. In my house parents never sleep.  In my house our days are measured in numbers.  In my house my child must be an adult.  In my house we dread bedtime.  In my house blood is shed every day.  In my house this is the norm.  Type 1 lives in my house."

    So despite my self-administered delusion, the fact of the matter is, there's aren't seven days a week - there are 3 days in a set.  A 2am walk to the washroom isn't something that will happen after 40 - it will be routine for the next 20.  As surely as there are 365 days in a year (occasionally 366) - there will be 3300+ bloody fingers, 122+ set changes, 4+ clinics / A1c tests, and 31,536,000+ chances to do it wrong.

   I guess "normal" is we make it, but the truth is my head has been in the sand lately, and while ignorance can be bliss it can become hell.  While living life somewhere in between I'm reminded that it's important to keep the truth in mind.

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.

The "IS Trap"

  Some may argue it is simply a matter of semantics.  I call it opposite perspectives and a life choice.

  It's all about "is" vs. "has".

is   /ɪz/
–verb
3rd person singular present indicative of be.
 
has   /hæz/
–verb
a 3rd person singular present indicative of have.

  To be, to exist, to in most basic terms define one's self. OR To posses, to carry with, present in one's life.

  I made a conscious decision early on that as a father, it is my responsibility to not only provide food, clothing and shelter to my children, but also to teach and to lead and to help them develop their sense of self and become their own individuals.  So, after Jonathan's diagnosis, it didn't take much to realize that it was going to be on me (and my wife, and to an extent our daughter) to do everything we can to reinforce the difference between is and has when it comes to this disease.  There are enough hang-ups, misconceptions, and challenges with Type 1 Diabetes as it is that I can not accept the possibility that it would cause Jonathan to doubt himself or hold himself back from anything in life that he wants to do.

  Before we even left the hospital I made a very clear distinction between "being" and "having" Type 1 Diabetes.  I promised myself and, by extension, Jonathan that I would not let this define who he is; regardless of how far reaching into our lives it could become.

  So, what is the "Is Trap"?  I think it comes down to mostly verbal laziness with a small contribution by societal influences.  Here is a comparative example of the simplest form of the Is Trap:

1) My son is a Type 1 Diabetic.
2) My son has Type 1 Diabetes.

  #2 Was the one I had planned on going with all along.  It's probably the most frequently used line since it pretty much has to be said to preface any statement on the subject when talking with someone who doesn't already know.  I've noticed lately however that my "has"s have been turning into "is"s.  I'm not sure when it started exactly, but once I realized I was doing it, it dawned on me that it was going to be harder to hold that distinction than I thought and that's when I first knew about the "Is Trap".

  One thing I've learned is that you don't necessairly have to tell a child someting in order for them to believe it.  They are observant and open-minded little information sponges.  They pick things up from conversations had with other people, from how we act, and from what we do.  Worse yet, if they recieve conflicting information between what is said to them and what is said and done arond them, then not only is credibility lost, but they will tend to believe that the indirect information is probably the truth.

  Like with so many other things in life, one thing can lead to another and eventually the best intentions can turn into disasters.  So seeing the "Is Trap" really took me aback because I hadn't expected to put my foot in it so easily or quickly.  I'm hoping I've learned from this and can keep it close to me so that I don't slip into a pattern of defining Jonathan by his diabetes as opposed to remembering that is it something that is only a part of his life.

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.

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.

Reluctantly I did it, and very glad I didn't miss out

   I meant to get to this about a week or so ago, but as you know things got a little hairy (speaking of a little hairy; and yes, infusion sets double as miniature waxing strips).

   When we first met with the Animas rep, she insisted that we were going to each wear a set to see what it was like.  Quite frankly, she kinda rubbed me the wrong way about the whole thing.  Even when we had the reps out to the house, she was still harping on it.  I can honestly say that her pestering me about it didn't influence my decision though.

   Once we got the pump and I started playing around with and getting things set up, I became a little curious.  After a couple of weeks of seeing it sitting in my office, a little thought started to fester in the back of my head.  For some strange reason I though I might actually want to wear it myself during the training (I must have been having one hell of a masochistic moment).

   As the day of reckoning drew closer, I became more and more nervous.  I have had a life-long issue with needles.  More of a mental thing than a physical thing.  I know they hurt a little, but are bearable however, the thought of a foreign object being inserted into my body through the skin gives me the heebee-geebees.  There were a few times where I though I could wear the pump but forgo the set itself.  In the end though something told me I needed to do this.

   At the clinic that morning we reviewed some things and went over the  pump and how to use it.  A couple hours into the training we got to the practical hands-on stuff.  I rewound the pump, filled a vial, primed the line... and then....  All eyes were on me, or rather my big white belly, and my shaking hands holding a site and an inserter.  I put them together, cocked it back, paused for a moment as I tried to see through the blur to the area I had wiped with the alcohol swab, and then I did it.  With a click and a pinch, it was over.  It was a lot like a mosquito bite.  On one hand I felt a little silly for all the anxiety I had let myself experience, but on the other I was glad it was behind me (at least for a few days until set change).

   It was kinda neat actually.  Outside of the diabetes aspect of all this, I like gadgets and new things so it was cool.  A few people even said to me "I didn't know you had diabetes", to which I replied "I don't, I'm the test monkey."  By the end of the first 24 hours I was kinda used to it (except the sleeping part).  I started to forget it was there until I had to deal with it for whatever reason, be it a meal, trip to the washroom, knocking it with the seat belt buckle...  And then Nicole asked me what I felt was a pretty profound question "So how does it feel to be connected to your son's life line??" All of a sudden it hit me.  This wasn't just another pen or syringe, this was going to become part of him, this was going to be a 24 hour a day lifeline.

   I knew that switching to the pump meant no more long-acting insulin on board, and I knew that it was a life-sustaining device for him. I understood the mechanics and logic, but the moment I was asked that question it became so much more, more real than before and for my few days it became a little bit of a symbol of diabetes and a life with managing it.

   I said from day one that I would switch pancreas' with Jonathan if I knew his immune system would just get him again, and as sacrilegious as this sounds: I kinda felt, for a moment, like I did.  For a couple days it was me instead of him - well, more like me and him instead of him alone.  As much as we do to manage his diabetes now, this is truly his burden - one he will carry for the foreseeable future.

   After a few days I didn't want to give it up.  In fact, I started thing about taking saline shots at meals with him.  I didn't do that though, and probably a good thing too because I would have likely been spending more time with men in white coats.

  Although it was brief, I'm really glad I didn't miss out on the opportunity to do this and share a little piece of Jonathan's journey.  Things are back to "normal" now.  Jonathan is the only one getting poked and prodded.  Even as I write this, I wish I could go back to two weeks ago.  There's a lot about the experience that I still have a really hard time describing, but I would definitely recommend to any parent, or anyone for that matter that has someone close to their heart living with D, to share in this brief experience with them.  It's definitely worth the poke.

Big Brown Box

   It's here.  I have 5 weeks.  I have 5 weeks to learn everything I can about this pump and what it can do.  I have 5 weeks to prepare...  That's exactly 5 weeks longer than I had to prepare for Jonathan's diagnosis, so were ahead of the game in that way.  I do however have two thick books to read... aye carumba.  On the bright side in 5 weeks I won't do what I did tonight 73/17=4.3.... hmmm add 4g or random something, or lose .3 units (and in hindsight, I probably should have given him 1/2 a mini-box of smarties....

   Ok... off to school... have a gooD night.

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.

A little bit about the last few days and a reminder to me of how lucky I am

Well, it's been almost a week since the accident.  It's been a crazy week.  Jonathan's day time numbers have been good, but he goes high at night inexplicably.  We had to replace the Malibu, so we got the Caravan we were planning on getting in a couple years and we pick it up Friday - and not a moment too soon for my PT Cruiser loaner hating wife.  Jonathan is doing well otherwise however he did not enjoy our little game of "remove the stitches" at the doctors office yesterday.

This past Saturday was a beautiful day and we finally pulled off our JDRF car wash - I have the bright red sun burn to prove it.  We did alright.  We had a fair bit of traffic however, we actually pulled in more donations three weeks earlier in the rain; mostly thanks to family.

I've been spending the last few evenings plugging away at my calling list for the walk.  I was a little hesitant about calling complete strangers to get them registered for the walk and feared I'd be treated like a telemarketer but out of about 60 or so calls, only one person seemed mildly upset that I rang his phone.  It's actually been a great experience.  Most everyone has been really nice and some have chatted up a storm.  It was kind of like the DOC, but talking instead of typing.  There were a few moms and dads that I spoke with for upwards of a half an hour, but there was one that really got to me.  The last call on the last list was to a mother of a 4 year old boy that was diagnosed about a year ago.  She has not previously participated in a walk but had contacted our local JDRF office about other matters.  She told me that she really wants to bring her son out and have a great experience with him, but she is still having a really hard time dealing with his diagnosis, emotionally.  I could tell from the sound in her voice that she was on the verge of crying the whole time and it reminded me of the fine line that I walk.  I can get pretty worked up rather easily and I tip-toe around a precipice when it comes to the kids and "bad stuff".

Honestly, judging from the name on the list, I was expecting an eastern European lady that I had a 50/50 chance of understanding, but instead when she was handed the phone I heard a soft sweet voice that came through crystal clear.  I was totally not expecting to hear what she had to tell me, but it was quite evident that this poor lady had been mourning her son's diagnosis for the last year and from all indications has been facing this alone.  It made me realize, or re-realize just how lucky we've been.  Our supporters number now in the dozens, more than a dozen dozens, in fact if I counted every person that has at least shared an encouraging word or offered of themselves to help improve our lives I'd be here a long time counting.  But it seems that this mother has had virtually no one.

I did the only thing I could do.  I gave her my phone number and told her she could call me anytime.  Her son is a little younger than Jonathan and I suggested that we get them together to play and share a meal so that they both know that they are not alone.  And I offered to have our community outreach coordinator call her and let her know about events in our area that type 1 families would be gathering at.  That's about all I could do.  It's saddening to be so clearly reminded that not everyone is as blessed as we are to have an awesome support network, but at the same time it reminds me how thankful I am for the DOC and all our supporters.  Thank you everyone!

Sometimes you win… Sometimes you learn… Living by the numbers

I've said it before and I'll say it again - anybody that knows me, knows that I love numbers.  Data is information and information is power.  No, I'm not a maniacal leader of a group bent on world domination - just someone who's mind is more at ease when things can be quantified and understood (and as I just typed that I think to myself, what in my life is less quantifiable and understandable than Diabetes… damn!)

Nevertheless, we do our best to manage this using the numbers.  The BG readings, the carb counts, the dosing ratios, all go together to try and keep Jonathan in a safe and healthy place.  We've been having a pretty good run lately.  Jonathan's average for the last 7 days has been 8.8 mmol/L (158mg/dL) which roughly translates to an A1c of 6.6%.  His 90 day average is about 12.2 / 8.3%.  Our goal going into our May 18th appointment is 8.5%, so we're on track, I think.

Some individuals have recommended that we not react emotionally (at least not outwardly) to any numbers.  They say that while it's nice to celebrate the good days, it's potentially dangerous to berate the not-so-good days and even if we just stay cool on the less than good days, a lack of celebration will be noticed.  They've suggested that some people, especially children, tend to translate a "bad day" into a sense of personal failure in a way that can be demoralizing and in the long term self-destructive.

Something that took me a long time to learn, but that I hope to instill in my children as early in life as possible, is that failure most often does not equate to self-worth.  Many great people have failed at a great many things, but that never made them any less great.  It took me about 30 years to figure out that the saying "sometimes you win and sometime you lose" is really misleading.  The truth of the matter is, sometimes you win and sometimes you learn - the only real loss is when you don't learn from not achieving your goal.

So back to the last week.  We've been seeing great single to low double digit numbers (108-144 range for my American friends).  We've even been seeing fasting numbers in the 3.5-4.5 (64-81) range.  Admittedly, this is on the tight side for a young kid and represents the very lower edge of his target range, but the consistency has been amazing aside from a few minor hiccups.  I have been able to come up with two reasons for this: Secondly - As we all do, we've done our best to tweak his doses, monitor his trends and maintain a healthy and balanced diet.  During the wild times, we catch out-of-rangers and respond quickly.  We test often and analyze our data.  During the "stable" times, we keep up with what seems to be working and go from there.  Firstly - Sheer dumb luck…  I think we all know that the D has a mind of it's own and a lot of the time does what it will regardless of our plans, but lately we're winning.

We're winning and we're not hiding the fact that we're happy about it.  We know we will struggle again and the numbers will creep up, but when that happens it doesn't mean we've failed, it means we are learning something and through that leaning we will have knowledge, and with that knowledge we will have power, power over D.

Music

Music.  I'd like to think, is a universal language.  Like math or science, there is in music truths that are universal.  While a full understanding of music may take years of academic study, there is no requirement to be an A student in order to enjoy it.

Many of us have a favourite song.  We often associate events in our life with tunes that serve as sign-posts as we travel back in time in our memories.  We use music to celebrate, to mourn, to commemorate, to entertain, to relax.... the list goes on.  It can evoke deep emotions, and it can trigger exhilarating highs.

"Where am I going with this?" you may ask.  "What's with the philosophical dissertation about music on a blog dedicated to a diabetic boy?" you say.  It's about "D music".  Not music written in the key of D per se, but rather music that connects with diabetes.

You may have noticed that within the last couple of weeks, I've marginally expanded my HTML abilities and added a music player with a custom list to this blog.  The selections therein are not random or accidental; they, for me, have become D music and one way or another they are now and forever connected in my mind to our son.

• A Little Bit Longer by Jonas Brothers is probably the most obvious choice as it specifically tells a story of a diabetic youth.  I also found a song, not in the playlist.com database, by Tom Kain called Diabetes is Diabolical which takes a slightly more light-hearted look at living with the D.

• Five for Fighting's song, Superman, doesn't in itself deal directly with our subject, but it does express what our little heroes are sometimes bound to be feeling. 

• Through the Long Night by Billy Joel may have been written with something totally different in mind, but the words almost fit perfectly.

• Fireflies may seem like a stretch, however the Owl City single just reminded me of Jonathan at first - light and happy.  I ended up using Fireflies for his JDRF fundraising video found on the "Top Vids" page here.  By sheer coincidence, the text and pictures I arranged seemed to line up directly with the music and lines like "It's hard to say I'd rather stay awake when I'm asleep 'Cause everything is never as it seems", "A disco ball is just hanging by a thread", and the echoes of "Please take me away from here" really hit home.  Pretty much the whole song has come to have special meaning, but these were some of the initial lines that started entrenching the song in my heart.

• Martina McBride's video for Anyway is also on the "Top Vids" page.  I first heard this song during a mission at our church.  A guest priest named Fr. Chris Gevaert played it for us one night.  There is a point at 3:38 that just choked me right up, but the whole song I find to be relevant as it speaks to overcoming our fears and going after what is in our hearts, despite the odds.

• Skorpinok may seem like a bizarre choice, but even it has it's significance.  Jonathan loves Transformers and everything to do with them.  When he was in the hospital, he made me watch that first movie at least once a day, sometimes twice, and probably would have let it go a third if I didn't put my foot down.  More than that though, it reminds me of the dangers he faces and the evil D that stalks him.  And as much as I hate to admit it, it reminds me of the guilt I felt for obviously having done something wrong to bring this horrible thing on my beautiful, innocent little boy (that still creeps in from time to time too - not as much anymore though).

And that's how my list of D music was started.  On one hand these songs will now forever be tied to a sad and difficult thing in our lives but on the other, they help keep me grounded and focused on what is really important to us.

If you have your "D music" I'd love to hear what it is and if you don't mind I might add it to my own, please feel free to do the same with mine.