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.