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.

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.

Irony

   I remember a time when I was dead set against putting my son on an insulin pump. It seemed as if there were too many risks to make it worthwhile. I eventually came to realize that people tend to share bad news more than talk about the status quo and when things are non-events and the potential issues were far and few between. It took almost a year and a lot of researching and soul searching, but I finally got to a place where I was comfortable with pumping and really looking forward to it.



   This morning, Jonathan's doctor asked us to take him off the pump for a week or two until the infection clears up. I haven't seen Jonathan since this, but Bobbie says he seemed ok with going back on shots. Me on the other hand, I'm not happy about this at all! After a taste of not having to drive a needle into him multiple times a day, having a more relaxed schedule (in terms of meal times), and being able to correct those slightly off numbers, I don't want to go back and feel that it's horribly unfair for him to have to go back to MDI. I made him a couple of shirts for his birthday tomorrow that I think I will put away until he's back on the pump since they include a lot of pumping related things.


Ducking Fiabetes!

Usually I see the light, sometimes though the dark

Ya know, the mind is a funny thing.  It sometimes does some weird things, things to protect itself I guess; things done without a conscious thought.  I came across a couple videos this past weekend and posted them in the "About Diabetes" section of the "Top Vids" tab.  They really got me thinking.

I came to the conclusion that I've become somewhat de-sensitized to D.  I know I've never lost sight of the fact that we need to keep Jonathan in his "Goldilocks Zone" and that's really important - life and death important, but after watching those two videos I realized that things aren't as great as they seem to be.  Yeah, Jonathan has had some respectable numbers and is trucking along quite well, but some how in dealing with the day to day I feel like I've lost sight of the bigger picture - he has a disease that he may very well have for the rest of his life and to make matters worse, it could be that very disease that will be his end.

I certainly hope, and I pray every night that it won't be the case, but that dark reality does loom over us.  I guess the thin silver lining of that cloud is that it reinforces my drive to do everything I can to help make a difference.  I can't think of anything I wouldn't do for my son (or daughter for that matter) - if it were as simple as swapping pancreas' this would already be over for him.

Aside from what the doctors have been able to tell us about theories and what we've read on our own, I have no idea how or why Jonathan got Type 1 Diabetes.  I know he certainly didn't do anything to deserve it - and neither sis anyone else that has it.  I can't define it any way other than it's a horrible truth that we didn't miss out on.  I know it's reasonably possible that Jonathan will live a long and healthy life and staying on the straight and narrow could dodge the pitfalls of this disease, but it's going to be a long and sometimes really hard road.  If, God willing, he makes to the same point that his great-grandfather is at right now, he's 1/113th of the way [(91years old - 4at Dx)*12 months / 9.25 months since Dx].

If any of my Facebook friends have looked closely at my profile, they will have noticed the one thing that I believe more than anything else about family: "Our children are our greatest legacy we leave to this world. It is not only our privilege, but our responsibility to ensure their future success."  When I wrote that, I had no idea where we would be today, I certainly hadn't guessed that he'd have D dogging him through life.

I try to stay positive that things will be alright.  I try to stay optimistic that "the cure is five years away" will soon read "four" and then "three" and eventually "now".  I try to keep a brave face when he's looking, even though deep down inside I know that it's far more dangerous than he realizes.  I want him to grow up and not be held back by this burden.  Although he's young and will likely change his mind several dozen times, I hope he does see his current dream through and become a doctor.  I think if he were the one to eventually find a cure (yes even insulin was born in Canada) I would probably explode, but I hope someone beats him to it.

At the end of the day, it is what it is.  Even if I could go back in time, I'd have no idea how to change it.  It makes me wonder if parents of children with diseases and other issues aside from diabetes feel the exact same way.  I honestly can't think of another disease that requires so much monitoring and so much therapy and has every day tip-toeing on a tightrope.  I've managed to somehow convince myself of an illusion that everything is OK and we're really in a good spot all in all, but the reality is that we walk a narrow winding road and the edge is closer than it appears.  Maybe when I wake up tomorrow that line will be a little blurrier again.

The little things get to me

No doubt about it, Diabetes changes a family's life dramatically.  We all talk about a new "normal", and in a lot of ways a sense of normalcy does return.  We're coming up on 9 months now, and I know most people said it would take about a year, but things seem to be fairly "normal".

We try to have a clear definition between D-time and "normal"-time.  Obviously there are times that focus strictly on monitoring, management and treatment, but there is also a great deal of time that is about being a 4 1/2 year old kid, a son, a brother, and a friend.  I think I've come to terms with what we have on our plate even though from time to time it does drag me right down.

Something unexpected though really bothered me today.  We've been used to, for years now, the kids' plates being arranged slightly differently then ours.  Until recently, they liked their hot dogs to be bun-less whereas we like them in buns.  They prefer pizza cut into little pieces and we pick up the slice.  They have an aversion to the meat, veggies and rice of a stir-fry touching and we dump in into one bowl.  So, slightly different is already normal.  What stung me tonight while we were sitting down to an occasional favourite - chicken nachos - was that Jonathan has recently started expressing an interest in having his nachos piled up like ours as opposed to the chips, cheese, chicken and tomatoes all segregated.  Our little man wants nachos off the big tray.

I might have been able to count carbs by number of chips, but this is highly inaccurate, so I devised a little routine where I made a separate plate for him, with the chips pre-weighed, along side the main dish.  While this appeased him, it troubled me.  Something as simple as a family dinner just turned into a reminder of how far this disease has wedged it's way into his life.  It made me think of the discrimination and segregation that he'll likely face for years to come.  It reminded me of the emotional toll that this will take on him.

I know I can't dwell on such things lest my fragile sanity dissolve, but how cruel to go as far as stopping an innocent child from sharing in the family plate.  Maybe I'm blowing this out of proportion, maybe I'm just blindsided by something I took for granted, maybe both, I don't know, it just really irked me today.  He's a happy little guy, and I'm thankful for that.  I don't want to burden him any further with my frustrations.  Hopefully I'm right in believing that being diagnosed at such a young age he'll never really know how much his life change because for him, it will have always been this way.